Somewhere Inbetween... Fibro riders...

[pintopiaffe]

Unite here!

It's not *quite* a disability--certainly not in the way of some... but we are not really normal either.

What is your greatest frustration?

-Mine is the unpredictability of it. Fine one day, can barely move the next. Pain I can deal with but the pain on top of the fatigue which make you lose entire days... :(

What have you found helps?

-surprizingly for me, plain old Aspirin seems to work as well as anything I've tried. I've tried diet changes, which help some, but never seem to be able to stick with them, even though I stuck wtih Atkins for 18 months.

What else?

-I just wanted to sort of start the discussion. Perhaps we don't belong in this forum, but 'normal' folks sometimes don't really get the challenge it is to live with this either... ;)

[3Spots]

Hi Pinto,

I bore people with my story, but who knows, maybe it will help someone.

When I went into menopause I immediately had pain in all my joints; sometimes taking me two hours to warm up in the morning and get to work. i was in tears, and for the first time understood the term "quality of life."

Doc said it was "menopausal arthritis" from the sudden drop of estrogen and I would be better in 3-5 years. (that part happens to be true, and i believe estrogen has a lot to do with fibro, too!) I read the literature on that, and sure enough rapid drop in estrogen -- like in ovarectomies -- did cause arthritic pain in 20% of women.

During that time I also tried Omega HorseShine for my horse and noticed his arthritis improved. I researched the equivalent dosage for me and began taking 8 grams of omega 3's a day (Spectrum Flax Oil, 1 tbs daily). I was feeling better in two weeks. In six months i was able to stop taking celebrex and voltaren.

I have such empathy for folks going through fibro, or that have debilitating migraines, or anything else that just saps your energy and takes away life one day at a time.

jan

[Wayside]

Mine is the unpredictability of it. Fine one day, can barely move the next. Pain I can deal with but the pain on top of the fatigue which make you lose entire days... :(

I'm with you on that one. It takes energy to work through the pain, and so often it seems like there's just not enough there to draw on. And I hate the "crash" after I push myself to do things I think I should be capable of.

Like, I can still do a lot of the things I used to, but I have to spread them out a little more. If I go on an away ride (trail ride, show) I really have to get things packed up the day before, and chances are I'm going to end up cleaning the trailer a couple days later, when that used to happen the moment I got home. Nowdays I just pull in the driveway, see to my horse's needs, and then flop over and go to bed :lol:

Looooong walk warmups are really helpful to me. Throwing tack on my horse and then jumping right up there is simplty not happening for me these days. Mare's a little cold-backed too, so fortunately our disfunctions are pretty compatible in that regard. I tack her up slowly, walk her around in hand for a while, get on using the mounting block, and then walk for a good long while before picking up any other gaits. Interestingly, if I have to get off and back on during a ride for some reason, I can do it from the ground easily, but not at the start of a ride. Mare's small, so I can do it, but it's not terribly comfortable for either of us.

I'm very interested to see how the Physical Therapy works for me. Just started, and it fascinates me that some of the problems plagueing my riding are actually going on in the rest of my life, too, I just never paid much attention to them. I have joint instability issues that have caused muscle imbalances which aggravate my Fibro, apparently, so I'm hoping the PT will help. For instance, I struggle with the "chair seat" problem, and one of the exercises I'm doing is straight leg lifts (hip abduction) lying on my side, with my shoulders hips and heels against a wall. I thought I could do those on-my-side leg lifts all day long, and I can, if I'm sticking my feet about 6" in front of my body :eek:. Forced into a straight position, it's really hard for me. But I'm working at it.

Sadly, I haven't found too many things to help the fibro directly, but I do find that managing my other health problems keeps them from aggravating my fibro, if that makes sense.

Thank you so much for sharing your story 3spots. You certainly could be right about an estrogen component. And I think the flax oil is a great suggestion. It's very good for you, and very safe, so definitely worth a try.

As a side note, I really like Spectrum's oil line. I used their sunflower oil to make sunflower nut butter when my son had a classmate with a peanut allergy, and I often bake with their walnut oil, and stir-fry with the sesame oil.

I've heard of people having fibro-like symptoms from lack of vit D, so I supplement that as well as vit B12. I have pernicious anemia also, so if I don't get mega doses of B12, I start to get neuropathis, which usually show up first as my feet going numb in the stirrups. And I've heard a lot of people are helped by taking magnesium supplements like malic acid for fibro, though my understanding is that you need to be sure to get plenty of calcium if you're taking extra magnesium.

I know there are a lot of skeptics, but pain is a very disabling symptom, and it can have a huge impact on riding and time spent at the barn.

[pintopiaffe]

If I go on an away ride (trail ride, show) I really have to get things packed up the day before, and chances are I'm going to end up cleaning the trailer a couple days later, when that used to happen the moment I got home. Nowdays I just pull in the driveway, see to my horse's needs, and then flop over and go to bed

:yes: :yes:

I can *do* what needs to be done, generally, but then spend double or triple the time recovering as I used to. :sigh: The last clinic I went to ended up in a week long flare-up, my first acute flare up. It was awful. I thought maybe I was going to get the flu... but no.

I know there are a lot of skeptics, but pain is a very disabling symptom, and it can have a huge impact on riding and time spent at the barn.

For me it has been fascinating to travel down the road of diagnosis, since it's 'rule out other stuff' than 'test for this.' Sleep study came back normal (while I was convinced I might show restless leg syndrome in sleep... but no.) Next step was a psych referral to rule out depression. THAT referral actually has been the most help--though she doesn't think I'm really showing depression, but rather the physical symptoms are there from the pain/fatigue. Cymbalta has helped quite a lot.

3Spots, that is interesting, as certainly that's a supplement that can't hurt! I've taken my omegas on and off. Probably never really regularly or long enough to see a difference...

I really do think there are nutritional links, and I could do more. I have to get out of my own way to do it!

Interestingly, a Nurse Practitioner recently asked me if the Atkins "cased" the Fibro.

I can quite clearly point to being kicked in the chest 2 years ago June as the beginning of the problems. Crushed C4 disk and degeneration T 8/9, 9/10, 10/11. So the link between trauma, especially spinal trauma, and Fibro is one I definitely believe...

I'm hoping some of the other "Fibro Riders" chime in here.

My next question: How much do you expect (or not) to progress in skill/levels/training???

[Penthilisea]

I just upgraded to very low dose pain patches and the change in my functionality is amazing. Instead of using oral meds (can't take NSAIDS), and feeling good for an hour or so, and the issues of tolerance, under and over dosing etc, I am in a steady state of pretty ok. I do have some breakthrough pain if I do somehting dumb, but it is NOT constant. I have done more in the past 7 days than in the previous 3 months since I broke my back.
Now if I could just stay warm, dangit!

[CatOnLap]

depends on the weather, airborne allergies, amd defo diet for me. But even when I am eating right for me (lots of fruit and veggies and high fat proteins like nuts and cheeses and meats and next to no fast carbs) a drastic change in weather ( generally the rapidly falling barometer that heralds a winter storm here) can activate the arthritis and myositis. And if something blows in on a wind that I am allergic to, I get symptoms then too along with the sneezing and itchyness of the allergy. Mostly though I am ok, and have had a symptom free summer. I am much better when I can keep moving and do physical exercise a couple of hours a day.

Mine seems to have a hereditary component as many members of 3 generations of my family have shown symptoms. Never really stopped any of us though.

I never noticed any change while taking vitamin supplements, but then I eat a lot out of my own garden and other local organic sources, so the food is pretty nutritious. I take vit D and my diet is high in salmon and other deep sea fish for the essential fatty acids.

[Orn1218]

I hate the unpredictable nature of fibro as well. I can go for days feeling great and then I hit a wall and there is no pushing through it for a day or two. The fibro fatigue is hard to articulate to people that do not experience it, but my dh is good about letting me rest when I need to.

I finally got a great horse that is a good match for me, so getting out to ride is fun again for me. I trail ride and after getting some fresh air and decent saddle time, I find I sleep much better than any med could offer.

I don't do any prescription meds because i hated the side effects, but I do find that Aleve and Motrin do the trick, sometimes in combination with each other.

[DressageGeek "Ribbon Ho"]

When the idea for this forum was first discussed, it was meant to be inclusive of chronic and acute issues that affect your life with horses - riding, driving, barn chores. So by all means this is very relevant. I'm glad that there is discussion that can help others!

[pintopiaffe]

Very, very interesting about the allergies. Weather systems, ABSOLUTELY POSITIVELY NO DOUBT.

There was a story I caught on NPR some time last week that they have found that CFS is most likely a retrovirus.

Now, I've no idea what a retrovirus is... but... I got the gist of it, and it's promising research. The hope is at some point to be able to turn the virus off.

Orn, I find stacking OTC stuff works as well as anything, only it's going to wreck the liver eventually :p Still, it works.

I am introducing Iberian blood into my program in the hopes of bringing the rideability (soft, smooth back without a ton of movement) up while not loosing competitive gaits.

[DressageGeek "Ribbon Ho"]

A retrovirus is a virus with RNA (as opposed to DNA) as the genetic material - they need a "reverse transcriptase" enzyme to go through a DNA intermediate to replicate (make more copies). Many oncogenic (cancer causing) viruses are retroviruses, for example, FeLV (Feline Leukemia Virus) and HIV.

[Wayside]

Yes, I have hay fever, and my allergies absolutely affect my Fibro, as well as the weather.

My mares have a fairy high % of TB in them for warmbloods, and I think as result, their movement is a little more hunter-like, and less extravagent, which I think is easier on me than somthing with a lot of knee action would be. And my girls also have a ton of get up and go, which I find wears me out less than my lazy draft gelding did. He's so loveable, I still have him around, but it just seems like so much work to ride him, so he just hangs out and soaks up cuddles and treats :lol:

I use Aleve sometimes too (usually the prescription strength) and it helps, but after a while it just kills my stomach. So generally I save it for when I have a joint issue that's aggravating things. And I'm not shy about using the horse liniment on myself, either :winkgrin:

Sorry I didn't answer your question about goals, that's something I've kind of been thinking about lately. I don't really have them, and I think maybe I'd progress a little faster and more consistantly if I was working towards something. Interestingly, my instructor and one of her other students and I were chatting after our lessons one day, and we were laughing a little because although our mares are kind of similiar, the other student and I have different mental reactions when they're being a little silly. Other student gets frustrated and a little mad (though she's by no means the angry or harsh type, I'm talking well within the range of normal frustration). I tend to shrug it off, "Oh well, it didn't happen, no one's in any danger so it's okay." Which sounds nice in principle, and it's good for my hot sensitive mare that I don't get worked up about stuff, but I'm never going to fix anything or learn anything if I ask, it doesn't happen, and I just say "Oh well" :lol:

So yes, the Fibro does impede my progress, especially since I don't spend as much time in the saddle when I'm having a flare, but so do about a zillion other things that I have more control over. Mare is a difficult ride on top of that, so that slows things down as well. But I have every intention of continueing to lesson and progress as a rider, and as far as moving up the levels, we'll get where we're going when we get there. And I'm not entirely sure how far the mares or I will go, but I'm enjoying the journey.

[Penthilisea]

Augh. Big cold WET weather front moved in here in NJ, I am a cold mess. Headache, stiff, cold, brain fuzzed, etc. And I had to drive all over gods green earth today, so I maxed out my meds today too. :(

[Hip]

Oh, yeah, fibro PLUS menopause. Top that if you can!

I read quite a while back that people with fibro have almost all had mononucleosis (sp?) sometime in their lives. I don't know if that statement is true but I've not had it (that I know of) but have had a really bad case of strep throat. :no: Seems like after that, THAT'S when I started going downhill, slowly at first but now it's really gathering speed. :cry:

I don't take much in the way of meds but go my own pace. Also, I sure didn't understand that retrovirus statement either, kind of went over my head! :eek: Can someone trans that into lay English?? ;)

[Across Sicily]

I hate having fibro. :(

I'm 22 and was diagnosed with it (along with hypothyroidism) not too long ago. Just fabulous. Cannot believe the pain associated with it. It's been getting worse lately, too, to the point where I'm all but living off Advil/codeine/Tylenol/muscle relaxants. Have had a bad last few days where I've been curled up in bed/couch basically unable to move. Groovy...

Hope this crap gets better. They put me on Savella which thus far has been useless. Hoping that once my hypothyroid is dealt with finally (doing some insane up-and-down stuff) the pain will chill out. I don't think I can deal with 50-70 more years of it.

[pintopiaffe]

Yo, Hip... I keep asking every past-menopause woman I meet if you ever get your brain back... most smile, and sadly nod :no: at me. :sigh:

Sicily--hang in there! It does get better. It gets worse--but gets better too. Definitely hold out hope that when you get the thyroid more stable things will get better. As you learn how to manage, you can tweak diet, rest etc., and really *manage* the bad times, at least that's what I'm finding!

Interesting--I have had mono. But I think I fall more into the 'acute injury' trigger as I can point exactly to the moment (double barrell to the chest--NOT my horse!) when things began... It's like I just never got better.

I'm looking into things like wake-up lamps now, and lots of diet info...

[winkybear]

It's not *quite* a disability--certainly not in the way of some...

Sorry, I respectfully disagree!! :)

Fibro really IS a disabling disease. I know of at least one acquaintance who went on Social Security Disability when her Fibro became so bad she could no longer work -- and it was her only health issue.

The list of 'things wrong with me' health-wise is very long (I intend to post my introduction on the thread for this) but suffice to say that the Fibro beast is among them.

Fibro used to be the least of my worries until last summer. My husband became seriously ill and (since he doesn't drive anymore due to a stroke) I truly wore myself out driving him to the Veterans hospital every other week for four months.

Did I mention that it required getting up at the crack of dawn and that he was pretty helpless for 5 days or so after each procedure? NOT a fun time in our house.

I got us thru it and then I quite literally fell apart.

My doctors thought my Poly Arteritis had come back so they put me on steroids for 2 weeks while they dithered. (Took all summer to get off steroids, but that's another story...)

Finally my rhuematologist pronounced it as a full-on Fibro flare. It lasted all summer. :(

My Fibro symptoms include the usual sore tender points but also joint aches, and a great deal of muscle weakness and muscle pain.

Perhaps the most cruel for a horseperson is what I call "Bed Jacket pain" because the arms and shoulders are the focus of the pain, like those areas covered by a bed jacket. I get Bed Jacket pain only when I have seriously pushed myself beyond my limit -- which I still do sometimes. :confused:

All the strength just drains from my arms and shoulders. That strength is replaced with massive pain. If it's really bad the pain will surge up onto the jawline on both sides. I become a helpless kitten when this happens, and I have NO business around a barn until it passes. :no:

I am also a Human Barometer as my migraines and often my Fibro are very vulnerable to fast changes in the pressure. :cry:

What I have found helpful: The topical "Stop Pain" and guaifensin syrup (good ole robitussin) :lol: I also take a prescription muscle relaxer and pain meds.

Stop Pain literally stops pain. It's astonishing. :eek: For me, the roll on works best, but it also comes in a cream and a spray.

There is a famous "Guafensin Protocol" to fight Fibro (developed by a Dr) but I can't tolerate the massive doses of guaifensin pills (Mucinex brand) required. So, I just take 2 tsp of the syrup each night. Now, this is just the G-syrup, not the ones with extra added cough suppressants, etc. I find it helps but you gotta take it each and every night.

I also take Effexor as it is thought to help restore the deep sleep that Fibro robs from us.

From what I have read Fibro (and CFS which I also have) can be triggered several ways. Physical trauma is one way, but for me, I believe it was toxic exposure to Agent Orange for 5 years as a child on military bases. I have also had Mono so ...? :confused:

Anyway, whatever the cause, there is no cure and it is a very PITA health problem for a horseperson to have! :mad:

[Penthilisea]

FYI to all, Fibro should no longer be classified as a syndrome (group of symtoms with no organic cause) because there is a diagnostic test that can be done on spinal fluid i believe, which shows an insane level of nerve substance p, which attenuates nerves to pain. In other words, fibro folks have a nervous system that is biologically trained to treat even mild stimulus as acute and sever pain.

[MEP]

Well, time for me to check in with my Fibro peeps!

I had mono as a pre-teen, and I don't think I ever really fully recovered. Never had much energy, never felt really refreshed and ready to go. I also have allergies, lots of arthritis and mild scoliosis - insomnia (so I'm up very late at night, like right now). yadda yadda - what you all said about the pain, flairs, weather changes (which also get my chronic sinus problems going, causing bacterial infections - I won't go into details, but you get the drift). Forever menopause, space brain ('anyone home there?').

Yikes!

Yes, whatever the cause, the pain is very real. I was on Celebrex for the arthritis, but had to stop when my insurance changed and I no longer had prescription coverage - the Celebrex is just too expensive, so am now on Tylenol arthritis. It helps some. I'm also on muscle relaxers, anti-depressants, allergy meds, and sleeping pills. I also take a multi-vit, fish oil, B vits, and load Ibuprofen when the pain gets out of hand. I'm finding that massage is most helpful in increasing my very limited flexibility.

I'm not riding right now. I'm way too stressed and my muscles are so tense, it's just not a good time to ride. I've had a very stressful few years including a legal dispute with my neighbors that dragged on for years and was just appalling, (it never got resolved, but finally died a well-deserved death) and, along with many others, I've been very badly effected by the economic crisis.

I've got my horse living at home right now, along with my donkeys. its hard dragging myself out there sometimes, but they always make me smile and I know that getting out there and cleaning (as best I can), lugging hay, etc. is actually good for me.

Anyway, i know there's always so much more to everyone's stories of how they deal with their issues. It's nice to know there are others out there who have an understanding of what we face - I'm finding that even some of my close friends don't understand or recognize fibro as a debilitating condition. I really hope that some of the research that's being done comes up with a better definition of the causes. I'm encouraged to hear the viral/CFS connection - there are doctors out there who feel that fibro/cfs are manifestations of the same underlying problem.

Whenever anyone asks how I am, I just say "hanging in there." You know no-one wants a real answer, so hanging in there is neither too negative, nor does it go into all the gory details!

I do seriously miss riding. I want to get back to it - but want to feel more better, at least have my muscles be more relaxed when I get going again.

[Ted the Peep 'Ho]

The problem is, since fibro/CFS affects so many more women than men, is that until recently it was treated with a pat on the head and the , "Don't worry your head about this, little woman, just buck up!" So there is just not yet all that much to offer in terms of treatment modalities.

[Amwrider]

My fibro started right after my hysterectomy at age 38. Between the hysterectomy and the fibro I have gained 60 pounds since then and I just don't feel balanced on a horse anymore.

With the fibro, I am honestly afraid of falling off of a horse. This is the first time in my life I have been afraid to fall. I know how much I hurt when I simply get knocked over by a horse. I hardly ever ride anymore, but do hitch up and drive from time to time.

Fibro is a disability, my rheumatologist suggested I apply for disability but I declined. I am capable of working, I just have to be very, very careful of how I push myself.

I too get the "bed jacket" pains on my flares, they get so bad I can't brush my hair or really even wash it myself because I cannot raise my arms high enough. I manage a 20 stall barn too, so I really count on my student riders to help me out a lot on those really bad days.

I found out that when I was on the Cymbalta, it did a lot for the pain. It let me ignore the pain and keep on doing things, BUT it also allowed me to overdo things and when a flare did hit it was really, really bad.

I am off meds except for the occasional muscle relaxer, and I am doing better than when I was on the meds because I can "pace" myself more and can have a better idea of when I need to stop.

[pintopiaffe]

I found out that when I was on the Cymbalta, it did a lot for the pain. It let me ignore the pain and keep on doing things, BUT it also allowed me to overdo things and when a flare did hit it was really, really bad.



Now that's interesting. I had my first real "flare" after doing a 2 day clinic. I know I pushed myself, but it wasn't *all that* hard. The flare had me praying for death, or wondering if it was H1N1.

Pent--is that test common? Do Dr's know about it? I basically spent from January to Sept of this year being diagnosed by ruling out other stuff. Sleep study, etc. Never made it to the Rhumatologist (sp) because the psych prescribed the Cymbalta, which WORKS for everything but the fatigue.

Sooooo interesting to hear everyone's experiences. This winter/spring I had the worst shoulder pain, radiating up the neck. Muscles... I thought it was from pushing the round bales, I 'roll' them. But I'm doing the same thing now, and no pain. (thank you Cymbalta)

My new job keeps me moving a lot. I do three outside rounds, walking about a mile, and three inside rounds, taking stairs whenever possible, in a 6 floor hospital. It's a good thing when I pace myself.

I haven't ridden the stallion since the clinic. I've gotten on the Young Master Irrenaeus once or twice, and have worked the Silly Filly, but its' just so much *work* to carry the tack out. Seriously. That's it. It's SO minor, and so stupid. I have to store the tack in the house because of mice/critters. And to lift it off the saddle racks and carry it down the back stairs and out to the barn can be all it takes some days to keep me from riding.

Mind you--I'm still doing chores. But... that's it. It sounds so stupid. Especially when I read about Leena and her struggles & triumphs, or some of the others on THIS forum... it's ridiculous. So absurd as to be obscene at times. :uhoh:

[Penthilisea]

Unfortuanetly, the test is incredibly UN common. It is expensive and invasive.

I too had mono shortly before my fibro manifested as an adult, but my mom and I feel I had symptoms in response to stress since childhood.

Likewise, my adult explosion of pain etc began when I had both the flu and an infection at the same time- was taking anti viral, antibiotics and and anti pain. My Body said ENOUGH!

[winkybear]

I too get the "bed jacket" pains on my flares, they get so bad I can't brush my hair or really even wash it myself because I cannot raise my arms high enough. I manage a 20 stall barn too, so I really count on my student riders to help me out a lot on those really bad days.


Oh, I am SO sorry to hear of another person with 'Bed Jacket' pain -- it is truly horrible!! :no:

OTOH I feel a bit better about it knowing at least one other person on the planet knows what I am talking about.

I know what you mean about not being able to brush your hair - the arms not only hurt but totally lack all strength.

I am SO happy you have others to do the barn work for you on your bad days. :D

[summerhorse]

I hate that you can feel terrible and look fine.

I hate that only other people with fibro can understand you.

I found that cymbalta works well for most of the pain if not the fatique.

Lots of rest helps the pain too. When I was off for shoulder surgery and was able to go rest when I was tired, take a nap in the day, etc. etc. almost all the fibro pain vanished! It was amazing. First week back at work and it was the bottom of the well again. If I could work part time I think I could probably be much better but I A) need the money and B) need the insurance!

[Amwrider]

I know what you mean about not being able to brush your hair - the arms not only hurt but totally lack all strength.

Yeah, the feeling of lead weights being attached that prevent you from lifting your arms up.

I have Chronic Fatigue Syndrome along with the Fibro and I really hate how when I am so tired I feel like I don't even have the energy to move through air...kind of like struggling to walk through a sci-fi "force field" of sorts.

I think at those times I don't even have enough energy to drop dead.:lol:

[pintopiaffe]

There was a piece on NPR this morning that I heard on my way to work about how people are using online forums and social networking sites to commiserate, research and learn about their medical issues. I immediately thought of this forum!

As a couple of folks have mentioned--it's so helpful to know "I'm not alone."

Now that everyone mentions 'bed jacket', I had a terrible time last winter/early spring with my shoulders & upper arms--it's HR because I thought it was because I'm now feeding out off the round bales, rather than free choice (due to price tripling in 2 years) and I push/roll those round bales (about 750/800# each! :eek: And also the 'hiking' the sometimestoofull pitchfork of hay over the fence... ) I kept thinking that something to do with that was the issue, but sometimes I hadn't done that... it makes perfect sense now!

In a mild flare up right now, and last one and this the big muscles on the front/outside of my thighs huuuuurt. Six flights of stairs in the hospital I usually take... using the elevator today :p Wondering if that's a problem area for anyone else?

Thanks to Choco-Mare I'm going to try getting a hold of some hockey nets to rig up over my round bales on top of the round bale feeders, to be able to feed hay free choice again. This year's first cut was so late due to the flooding that it is fine and heavy like second cut. The ponies are SURE I am starving them, and would demolish WAY too much hay in way too short a time if I left them to their own devices. At the least I can lace up the hockey nets to make giant hay nets... we'll see. I'm hopeful! Happier ponies and WAY more sleep/less work for me!

[Wayside]

As a couple of folks have mentioned--it's so helpful to know "I'm not alone."

:yes:

I agree completely.

I'm off to a slow start this morning, pretty achey, but In think I'll make it out to ride. Maybe after the Aleve kicks in :winkgrin:

Although I'm told that NSAIDS don't do much for the pain of fibro, it seems like they do help me quite a bit. They certainly help my other causes of aches and pain, which maybe keeps them from aggravatig the fibro. Who knows?

Yes, I get the thigh pain, too, though mine tends to be more towards the outside and back most of the time. According to my PT, those are the muscles that area the weakest in my thighs, and I have a tight and painful piriformis muscle (http://en.wikipedia.org/wiki/Piriformis_muscle). So lots of exercises and stretches for me.

Interestingly, that muscle actually feels very comfortable while I ride, but kills me when I'm done and sit down in the car.

Walking uphill to catch my horse was rough yesterday. For years I had horses that would come running when I went into the pasture, and of course, now that I'm unwell, I have horses that mostly stand there and stare at me :lol:

[dressagevettech]

I am so happy to find this thread on here!
I was diagnosed with Fibro almost two years ago when I was in my late 20s. It has been a long hard battle for me, but everyday things are getting better.

And knowing that there are other "horsey" fibro veterans out there is comforting.

I seem to mainly suffer from the extreme exhaustion, joint pain/aches, and the brain fog.
While it does not directly affect my riding per se, I dont ever seem to be as fit as I once was no matter what I do.
But my trainers are patient with me and understand that some days I just can't do as much as they would like.

Sadly I was working as an equine vet tech but had to give up that career. I would come home from work and just crash till I had to go back. I loved it but I loved my family and mare more!
I still do tech part time with small animals and am in school to become a equine massage therapist. I have found GREAT relief from the joint pain after doing the bodywork on a horse. So I am hopeful that career will blossom along with my health. :)

I will be sure to check back in here to see what is going on with everyone else. It is so good to know I am not alone! :)

[Stacie]

I have Chronic Fatigue Syndrome along with the Fibro and I really hate how when I am so tired I feel like I don't even have the energy to move through air...kind of like struggling to walk through a sci-fi "force field" of sorts.


That's a heavy gravity day :lol:

I don't have either Fibro or CFS although the doctors tried to pin the syndromes on me before they found out what I REALLY have.

Still sucks, though.

[MEP]

Checking in on this thread again - yes PP, I also have pain in my thighs, sometimes a dull ache in the front, and a more electric pain in the back. My massage therapist told me that the back of the thigh is a common place for women to have pain. (Wonder if that has anything to do with the absolutely torturous shoes I wore in my youth - it pains me to see women wear high heels now - Oh, if only they knew what might await them years from now!)

I was also interested in reading about the shoulder 'jacket.' I had equine related incidents - first on my right shoulder (donkey equine related :cool:) and then years later on the left shoulder (horsey equine related :eek:) - and during the years before finding out I had Fibro, I thought I had torn my rotator cuffs. (And, maybe I had, don't know, didn't have much in the way of insurance at the time of the first one, so never got it checked out, while at the time of the second one I had seriously injured my foot which needed surgery, so I never realized how badly my shoulder hurt until much later. :lol:) Years later, I find it rather difficult to lift my arms up - I can do it, but get rather stuck at the ten and two o'clock positions and it certainly hurts!

Currently, my thumbs feel like they are sprained, and sometimes even feel like they're dislocated. Ouch. Of course my joints hurt with arthritis, but the thumb thing is fairly recent and I'm not quite sure what I'm doing that causes it. I suppose it just *might* have something to do with slinging muck buckets around filled with manure. Ya think?

Had a fall on Thanksgiving day - don't you hate it when you do something dumb and then you fall - geez. Got a very nasty contusion on both the inside shin and outside muscle where my leg got pinned between the horse trailer and a step. Last night it developed into a small hematoma. In all my various injuries, I don't remember having one of those before!

[EqTrainer]

I guess the title says it all - has anyone else ever had this happen?

On top of the usual fibro pain, my hair is falling out in clumps and I have a visual aura spot that won't go away or pop and turn into a migraine.

Doctor pulled blood to check for anemia and thyroid... I have been severely anemic before, but I don't feel like THAT right now..

but upon doing some research last night, I found info about chronic inflammation causing anemia.. and of course, anemia causes hair loss - and something I had never read before - that anemia can cause auras without migraines.

Anyone else experienced this? I am teaching and trimming this week but not riding at all, as it doesn't seem like a really good idea - seeing spots and feeling like I've been run over by a bus...

labs should come back today.

[MEP]

I don't know anything about those symptoms, but it sounds very unpleasant and I hope you get answers soon. (and please share when you do - I've learned so much about fibro from reading what everyone is posting!)

[Stacie]

but upon doing some research last night, I found info about chronic inflammation causing anemia..

I've seen with horses. High tissue iron and low serum iron = chronic inflammation.

It was one of the big clues that my filly had something systemic going on. Turned out to be a food allergy.

[tollertwins]

I'm not totally clear if mine is 'fibro' or 'myofacial muscle' issues...and I'm not entirely sure what the difference is.

Started after I got body slammed around a stationary 4x4 pole coming off a horse.

It's mostly regional - neck/right shoulder. When it was really, really, really bad I couldn't pick up my arm and had to carry it around with me.

Fortunately, I found a REALLY excellent orthopedic PT and a good doc.

When I started PT my 'weight lifting' was quite literally touching my head and ALMOST pressing against the finger. When we progressed to arms I would do 3 bicep curls with no weight and then have to rest. (And this is somebody who used to lift 12 hrs a week!)

After 2 years of PT and being able to use drugs when I was having trouble, I was down to a dull roar. 3 years of Pilates afterwards and I am 'almost' normal most of the time.

What I use for help - pain meds and soma if I feel like I'm going to crash (PT said just go ahead and do it...don't wait till you crash or it will be worse).

Thermotex heating pad - it's infrared - penetrates DEEP, and you can use it all nite if you want.

Got a scrip for a home traction unit that I use a LOT when my neck acts up.

Myriads of deep massage toys - but my favorite is called a travelroller.

(PS - I USED to think that pains I had in my hip and outer leg were from the fibro...turns out they were just from a trashed hip...).

[pintopiaffe]

(PS - I USED to think that pains I had in my hip and outer leg were from the fibro...turns out they were just from a trashed hip...).


:lol:

Not laughing AT you... but for a long time I just thought that it was kind of 'normal' to hurt so much because I've abused my body for the better part of 40 years just by being AROUND horses (chores, tripping/falling, walking into the trailer hitch type things) not to mention riding (spontaneous dismounts, etc.)

It took a Chiro saying, "this isn't 'normal wear & tear abuse" and testing for the tender spots then ordering bloodwork etc. for me to really start thinking it was more than just being a middle aged horsewoman... :p

OUCH EqT--I hope you get it figured out. Thyroid issues often go hand in hand with the Fibro/CFS crap. Chook vs. egg, who knows....

[EqTrainer]

Thanks everyone.. I got my labs back. Severely anemic again, which is odd, because I don't feel quite like THAT but ok... thyroid is fine.

I think I am going to have to push my doctor on this one, she wants me to take iron and get on the pill.. ok sure but WHY IS THIS HAPPENING TO ME - might need to resurrect my old doc who actually thought it was important to find out why things were happening...

I am so frustrated.

[FlashGordon]

Thanks everyone.. I got my labs back. Severely anemic again, which is odd, because I don't feel quite like THAT but ok... thyroid is fine.

I think I am going to have to push my doctor on this one, she wants me to take iron and get on the pill.. ok sure but WHY IS THIS HAPPENING TO ME - might need to resurrect my old doc who actually thought it was important to find out why things were happening...

I am so frustrated.

Is it just us weirdos who don't just want a fix, but want to know WHY?

Have you seen an endocrinologist? Have they tested your Parathyroid??

Been thinking of ya, hoping you're feeling better soon EqT.......

[EqTrainer]

What is a parathyroid? Does it have a parachute?

[FlashGordon]

What is a parathyroid? Does it have a parachute?

No life saving devices included, I'm afraid.... my parathyroid crapped out and never resumed function! Apparently hadn't packed its parachute.

[Flying Hill]

A retrovirus, in very simple terms, first invades one of your cells and then inserts the genetic information needed to make more of itself into your DNA in that cell. When that cell goes to divide, it makes of copy of its DNA which now includes the virus DNA. This effectively makes more of the virus, as well as passing down the instructions to make more of the virus to all subsequent generations of that cell. Imagine that a (vey tiny) part of your cell DNA reads TTACTAAGGG and the virus reads GTACAT and inserts itself right in the middle; now your DNA reads TTACTGTACATAAGGG.

I was really glad to see this thread, as another long-time Fibro sufferer. Can anyone tell me how long it took for the Cymbalta to help with the pain? I have just started with it a week or so ago and can't say it has helped any yet.

It is very interesting seeing what different people have tried and what has/hasn't worked. To consolidate all of this information I was thinking of putting together a survey. Is anybody interested?

[Penthilisea]

FH- I got no pain relief from the Cymbalta. It helped a bit with the fatigue side. I've had better luck with Lyrica and narcotics, honestly. I also have friends trying Savella, with good responces so far, but it's early yet.

[pintopiaffe]

The cymbalta kicked in for me about the 6th day... nothing ginormous at that time, more like I was walking up the hill and not dying...

They upped the dose after 30 days, and about a week into the 60mg dose, I really, really noticed a difference.

My chronic back pain has bothered me maybe 4x since starting the cymbalta, and each time, there's been a good reason for it to bother me. (sitting too long, driving too long etc, basically--abuse ;) )

It did not help me at ALL with fatigue--though I will say in the last month or two I am sleeping better than I have in YEARS. Probably has more to do with job changes than Rx, but it definitely could be related to the Rx as I'm not waking up in pain (hips, back, neck, shoulders) like I would before.

I know that each person is different and it's a chemistry thing. I can only hope others find some relief like I have. Now I'm working on the fatigue, the weight, the fitness... I'm working horses more and riding more. I go back to FT work the week after next--"vacation" is over... I'm hoping the progress isn't.

[Equine Connection]

I've just been diagnosed (confirmed by 2 doctors) with Fibro. I also had Lyme Disease (neurological form) quite seriously for about 5 years. While I am very fortunate to have recovered from the Lyme, things have never quite the same in some respects. I tried the Lyrica, but it doesn't seem to do much for me and I don't like how it makes me feel. I do lots of stretching, range-of-motion, strengthening exercises and am trying to resume my Pilates (had to back off on these things due to the accident).

The Tennis Ball and Thera-Cane are my friends - definitely use them a lot to relieve trigger points, which are many!

There is a supplement called samE that I am strongly considering:

http://www.webmd.com/vitamins-supplements/ingredientmono-786-SAMe.aspx?activeIngredientId=786&activeIngredientName=SAMe

On another note, I hope those who don't experience serious conditions like this remain cognizant that everyone is not necessarily like they are, and can't always do the things they do. I say that because certain people seem to be very quick to criticize and demean others, and they should try walking in the other person's shoes -- maybe then they would be more sympathethic. Being in pain 24/7 is a way of life for many of us, and it takes incredible bravery, determination and a very strong mind to get up every day and do their very best.

So long as I can ride and be in harmony with my boy, there's hope! :) Very best wishes to all!

[tollertwins]

I'll bite on the survey...There are also a number of good resources on the net that list different stuff.

[Flying One]

My husband I found enormous relief from "healthy" chocolate. My husband who is a former bareback rider suffering from arthritis from years of serious breaks and injuries. Myself having done yrs of hunter/jumper also suffers from muscle aches and a very seriously arthritic knee. We started eating the chocolate in March. Within a week I noticed a huge energy boost. Because it is a proprietary process the chocolate is the purest form of cocoa available. Aside from the huge benefits from the antioxidants. Cocao has huge anti-inflammatory properties. Within 3 months my knee was so much better I can ride totally pain free. My husband who never got relief from anything, tells everyone about eating chocolate. I got a friend from Germany with Lyme Disease started on it just last week and after 4 days she was pain free. It truly is a remarkable product that I think the whole world should be eating for so many reasons.

Imajacre has a 24 yr old TB with a very bad arthritic knee that she has been feeding the chcocolate to 3x a day. He went from only being able walk and canter to now happily trotting. The first time in yrs.

check it out.
www.thefivereasons.com
www.mxi.myvoffice.com/tannisbennett

[tollertwins]

Ooooo!!! Extra reasons to eat chocolate (I KNEW that that must be good for you!)!

Any particular brand? E.g. what is 'healthy' chocolate?

[Flying One]

I know eating chocolate 3-5 times a day!! Who'd have thought. Its the first thing we eat in the morning. If you go to either of these websites it will tell you all about it.

www.thefivereasons.com
www.mxi.myvoffice.com/tannisbennett
www.mydrchocolate.com

[Penthilisea]

It's important to note that fibro pain is thought to be caused by central nervous system sensitization. In other words the body interprets normal sensations as highly painful. This is different from arthritis, where there is a physical problem which causes pain.

Additionally, there seem to be two "forms" of fibro. One appears to be genetic and hereditary, and has inflammatory symptoms. The other form, which appears to be "acquired" following a bout with mono or other viral infection; does NOT respond to anti inflammatory medications. And to make it worse, a person can certainly have both forms.

So, when choosing what options to try, it's important to establish what type of symptoms you have, and what they seem to respond to. Flying One, you don't mention if you have fibro, but I totally appreciate the info on a new anti inflammatory and delicious option! Best wishes to all!

[imajacres]

HI there, one of the websites that Flying One mentions is http://www.mydrchocolate.com .
Under the Q/A section there are lots of questions answered, even one pertaining to fibromyalgia. As well, on the testimonials page there are many sections to peruse.
This product is really unbelievable, and is Health Canada Approved to aid in cardiovascular health, lower BP, equalise cholesterol levels and reduce platelet aggregation.
This on top of all the health benefits it provides!
(Weight control, gastro/IBS relief, prostate issues, arthritis etc)
The lady who invented it is also diabetic, and this chocolate has helped many diabetics experience improved insulin behaviour.

I have a lady eating it who does have fibro, and she feels much less pain, she tells me.

I eat it for pain relief. Being a professional violinist, I had quite a bit. Note the word "HAD". :-)

The company has just come out with an energy drink as well, with no added caffeine( so no rush no crash), low glycemic sugars, fruits, spring water, and only natural carbonation. Tastes like concorde grape, and has the antioxidant/flavanol goodness of the chocolate extracted and added to the drink.
www.xe-energy.com

[Piatt Farms]

I'm sooo happy to have found this thread.

I was diagnoised with fibromyalgia 16 years ago when I was 16. Back then, no one had heard of it and everyone thought I was just a whiny teenager who was trying to get out of going to school .....yes, because being dragged to dr after dr was SOOO much more fun!
Finally landed at the Cleveland Clinic foundation seeing the head of pediatric rheumatology and he was able to give me the first hope I had seen in years. I wasn't crazy. I wasn't manipulative. The pain I was feeling that made it hard for me to get out of bed and want to sleep all the time because that was the only time I DIDN'T feel the pain wasn't in my head. The fact I couldn't remember simple things didn't mean I was stupid, there REALLY was a reason for all of it.

Fast forward 16 years of trying different things and having days/weeks/months of being better then worse and here I am present day. Mother of 2, 3 horses, lots of dogs/cats, loving husband who tries to understand what is going on with me and that even though I'm not covered in blue spots I really am sick, and I still have days that are better than others.
Is it just me, or do some of you forget how bad you hurt until you have a particuarly good day, and suddenly realize that lifting your arm/flexing your fingers/shrugging your shoulders, didn't make you wince?
Today isn't a good day. All of the normal "pressure points" hurt but today even typing hurts. We have a cold front moving through OK and my allegies are acting up, so I'm thinking that might have something to do with it. I'm just so happy to see, once again, that I'm not alone.
I've been thinking about going to the dr and asking to try something new to help with the pain. Taking the normal OTC meds isn't cutting it, and I'm noticing I'm getting more snappy with the kids....I even am delaying taking showers for a couple of days because it hurts but tellin my husband it's because my skin is too dry (seriously...how pathedic is that?).
Anyone have any recommendations?

[Flying Hill]

Is it just me, or do some of you forget how bad you hurt until you have a particuarly good day, and suddenly realize that lifting your arm/flexing your fingers/shrugging your shoulders, didn't make you wince?
That sounds very familiar! On really bad pain days (and weather change can certainly cause them) soaking in a hot bath with a quart of organic apple cider vinegar helps.

[pintopiaffe]

I think that Leena has been one of my greatest inspirations. If she can do it--and do it so gracefully, well, hell, *I* certainly should be able to! She has shared that she has learned so much 'less is more' in relation to aids, shifts in weight, rein cues etc. It's encouraging.

It's encouraging for me too just to know there are others out there who not only know what I'm talking about in a medical/*normal* life sense, but know what it's like to have to crack ice out of buckets, or throw hay over fences...

Have been researching the guiafenessen thing for myself, and found some good success with using 3-4 in the AM and 2-3 in the PM before I ran out and haven't had the fundage to restock. It seemed to help the allergies more than any other thing I've tried. And that in turn seemed to help me sleep better and get going better in the AM. It's a controversial treatment in some ways--newer double blind studies seem to go against the original Dr who has/does most of the treatment with it... OTOH, guiafenessen is a quite old 'drug' (from nat'l sources) and has significant anti-inflammatory properties with virtually no side effect... so perhaps it's simply the 'right' kind of anti-inflam.

Penth--I didn't realize there was a genetic component too. Much info I've read talks about a 'trigger event' with spinal trauma, which certainly is SIMPLE to pinpoint for me. This started for me when I was doublebarrelled in the chest (NOT MY HORSE! :lol: :uhoh: ) and I just 'never got better' really... Unfortunately, being a typical horse person, I also have had my share of concussions... and while I showed no symptoms, I may well have had a mild concussion with that accident too... (I had whiplash terribly, and now spine degeneration from the injury to the ribs/sternum) so... really, it all fits with concussion syndrome too. <shrugs>

What I *can* say is I truly have more HOPE right at this minute, than I have since the kick. Being able to share the frustrations and questions is amazing. Being able to share them with HORSEPEOPLE is even more amazing.

And I'm more committed than ever to breeding a horse with *competitive* gaits for dressage that is still EASY TO SIT!!!! Pretty is as pretty does, but doesn't do ME any good if I can't RIDE it. ;)

[EqTrainer]

I think one of the problems w/fibro and riding is that even when you ride well, tiny whiplash takes place a lot. I know the last time my horse did a spook/spin/bolt I had the clear sensation that I had just experienced whiplash. Of course I was glad to be still on the horse so it was a fleeting thought, but still..

.

[Penthilisea]

Yep, tiny whiplash AND tiny concusions, trauma to the central nervous system and brain certainly add up, as new research supports.

[FlashGordon]

Whiplash? Parachute....

What is a parathyroid? Does it have a parachute?

At work in the office... jamming out.... I forget we share the same taste in both horses and music... ha.

I don't have Fibro but have heard about a connection between neck injuries and Fibromyalgia. Anyone know if there is any truth to the theory?

The seemingly high incidence of Fibro among riders and other athletes involved in potentially high-impact sports (skiing, diving specifically) where neck injury is more likely to occur makes me wonder what the connection is.....

My husband managed a sleep lab up until recently and one of his docs did a significant amount of study on Fibromyalgia but more as it relates to sleep.

[Wayside]

I don't have Fibro but have heard about a connection between neck injuries and Fibromyalgia. Anyone know if there is any truth to the theory?


No idea if it's true, but I've heard that as well, and not just neck injuries, but any kind of major trauma. Getting kicked like pintopiaffe, for example. Or in people with post-traumatic stress disorder.

Also heard it's more common in people who have hypermobile joints, like me with Ehlers-Danlos. And in people who have autoimmune and other types of conditions.

Sometimes it seems like I'm in the minority, since mine seemed to come along kind of slowly, and I can't say that it happened after any particular incident. There certainly are plenty of possible incidents, though, so maybe it was the accumulation of them. So far over the years I've cracked four helmets, which probably doesn't bode well for my health or sanity :lol:

[pintopiaffe]

Who else is this pressure system KILLING? :uhoh:

My stupid shoulders... it's the TOP, like where your collarbone meets your shoulder? The right hurts. Aches. Is soooo sensitive to touch. Left isn't as bad. But I can't WAIT for the weather system to move on... and doesn't seem like it's in any mood to do so any time soon. :(

[Piatt Farms]

Me. Yesterday. I feel your pain (quite literally!).
My pain is in my shoulders too. All across the top and and then the muscle that goes down next to the spine, to this weird point that is actually under my shoulder blade. I think the one across the top is one of the most common for Fibro.
It ALWAYS hurts for me, it's just to what degree.
It hurts to get hugs from my kids....but I just wince as quietly as I can and smile/grimice.

Oddly, the pain in my ankles actually wakes me up nightly. I've tried switching shoes and that hasn't helped. As if I don't have enough sleep issues...now I add this one. :-)

So Pinto, I understand....same spot. One word. Ouch.

[pintopiaffe]

My pain is in my shoulders too. All across the top and and then the muscle that goes down next to the spine, to this weird point that is actually under my shoulder blade.

OMG--you mean like just to the side of your spine, but feels like it's under your shoulderblade... but really hard to palpate/pinpoint???

They've been blaming that on my T 8/9 9/10 10/11 disks... I'd LOVE to find out if other Fibro folks have THAT one!

Does it hurt you if you sit too long? Mine feels better if I raise the arm on that side... that's actually the main thing that drove me to try to find a diagnosis. My old job was sitting/typing for 10 hrs + a day, exempt from breaks etc. I was in agony. It hardly ever bothers me now--combination of Cymbalta and new job where I move a lot more + shorter shifts etc. But like tonight, being WAY stressed over the shooting, and having had like 6 hrs sleep in 2+ days... it's killing me.

Seriously, I'd be SOOOOO interested if it's more related to the Fibro than the injury I sustained. The sports massage lady doesn't find anything on that side--interestingly finds it on the opposite.

Thankfully it does NOT bother me when I ride. It doesn't bother me if I sit on a swiss ball either... but that's about the only seat I can tolerate for long periods.

Isn't it weird how riding seems to make most of it feel better--at least for me--but GETTING to ride is so damn challenging. Even with them in the backyard... it's such a battle sometimes. I can't imagine those who have to commute to a barn for any length of time... I probably would give up.

[EqTrainer]

Oh PP, do you mean that small animal that lives under your shoulder blade and gnaws away at it?

Not to sound too voodoo, but I had mine removed. By a very competent PT guy. Mind over matter, who knows, but he told me he was going to take it out and he did. He said he killed it and it wouldn't be back. So far, so good, its been 6 years.

Now you all think I am crazy!!!:lol:

[pintopiaffe]

No I don't think you're crazy. You're sort of close enough, I might have to come visit your PT for an excorcism... I mean, extermination... :uhoh:

SERIOUSLY. It's a fibro thing. WOW. That's encouraging believe it or not, because the disks/spine prognosis wasn't all that happy... if my spine isn't falling apart and it's a fibro thing... well, we can figure that out eventually.

Now I am having a date with some lovely flexoril and hope it'll scare that critter off while I'm unconscious for about 8 hours!!! :sleepy: :lol:

[Piatt Farms]

Hell you're not crazy...actually I'm wondering if your PT has ever wanted an all expense paid trip to see OKC. When I think of all the money I've spent on medication to make that area of pain go away (and all of the damage it has probably wreaked on my liver/kidney/intestines---my dad's in the medical field so he LOVES to tell me these things), paying someone for a one time visit seems like a much more worthy cause.

PP- yup, it's the exact same place you are describing. When I was in my last year of high school and during college, it was torture because all you do is sit and write. I would get spasms that would originate from a "knot" under my shoulderblade go up my spine and similtaniously go across my shoulder and down my arm to my wrist, making it darn near impossible to to write or take notes. Any class longer than an hour was just torture.
Those stupid SAT's and ACT's you are suppose to take? Yup, that sucked...to put mildly.
Job wise- I've accepted that I will never be a secretary or anything that requires significant amounts of time in front of a computer or writing, but luckily for the moment I'm gainfully employeed on a job that requires equal amounts computer and conf calls. I do most of it via speaker phone because I can't hold the phone under my ear (I can bend my neck and arch my shoulder to hold it there, but I will regret it later...usually for days), so I'm good for now. :-)

[EqTrainer]

Well, he was considering getting into some sort of PT for horse people. And his name was Mike. The first time I saw MedicalMike post on here, I wondered if it was him!

So who knows. But he really was amazing and that was the only time he got voodoo on me. As I am typing this I can feel that spot and exactly where the beastie lived.. the spot is thankfully empty.

PP - flexeril and activan at night is the original fibro cocktail. Flexeril for the body, activan for the mind. Nothing I have ever tried has ever worked better. I have to take it religiously - no skipping a night - as I have a tendency towards being a night owl anyway. If I don't sleep, I will crash.

And perhaps of interest - I was taking gabapentin for a while for a particular neck issue that was nerve pain.. after a few months of it being gone, I quit taking the gaba and the pain is STILL gone. Hurrah for that, huh?!!!

[tollertwins]

Neck injury to fibro? Yep - that's when mine started....Altho it was a while after after somebody told me to stop exercising. My PT's comment was that my spine basically started to collapse because of lack of muscle tone.

There is apparently some really big neural junction in the neck..squish it and everything else kinda hurts, too. The PT is trying to get me to read a book called 'Explain Pain' that is relatively easy to read and appears to have a lot of good info....But since I'm taking vicodin waiting on a hip replacement I don't have enough brain to get through it.

Also - I have that knot, too! It only gets bad now when I use the mouse too much. PT called it 'T4 syndrome'...right at the bra line and almost under the shoulder blade.

I used to have a rib actually be subluxated that would really aggravate it. She'd have to (literally) pound right at where the top rib kind of joins the collar bone to get it to go back in.

The other thing is that there are a couple trigger points in the big neck muscle in the front - the one that I can neither pronounce nor spell. Both PT's would put pressure on that muscle - and YEP! Referred straight to that knot under the shoulder blade.

A LOT of Pilates has really helped with that overall.

[Penthilisea]

Another theory proposed is that Fibro is a form of Endorphin Deficiency Syndrome. IN other words, your body is getting the same input everyone else gets, but the chemicals that ought to mediate/ameliorate everyday sensations are low or missing, producing pain, discomfort, tiredness, etc.
I don't know how much water this holds, but it might account for the group of fibro folks helped by narcotics or anti depressants (myself included).

[Piatt Farms]

Has anyone tried Lyrica? I've been having more bad days then good brought on by some changes around here (more stress) so I'm thinking about giving this a try.
It's either that or the local moraphine dealer on the corner.....:lol:
*kidding*

[pintopiaffe]

I've been scared of Lyrica because a side effect is weight gain. I've already gained back 15lbs due to having to stop one of my diabetes meds (insurance)I'm TERRIFIED of ever gettng back to where I was. :cry:

I also wonder about adrenaline/adrenal fatigue. Some Docs "believe" in it, some don't. I spent 15 years in live TV, (news, sports, things like NFL on NBC) and graduated from that to being a 9-1-1 Dispatcher, then a Cop. :sigh: Lots of night shifts and early mornings etc. etc. Every shift has some 'rush' of adrenaline, some for hours on end...

I dunno. Who else is forecasting this next storm though? :lol:

My biggest thing right now is adjusting back to 2nd & 3rd shift (and rotating) after being a day person since July. That and the cold. Damn fingers and toes feel like they're frostbitten for the first 15 minutes I go outside. Hurt like the dickens, and eventually warm up and are OK If I persist. I wish I knew what THAT was all about. :mad:

PT called it 'T4 syndrome'...right at the bra line and almost under the shoulder blade.

I used to have a rib actually be subluxated that would really aggravate it. She'd have to (literally) pound right at where the top rib kind of joins the collar bone to get it to go back in.

The other thing is that there are a couple trigger points in the big neck muscle in the front - the one that I can neither pronounce nor spell. Both PT's would put pressure on that muscle - and YEP! Referred straight to that knot under the shoulder blade.


This is SO interesting and helpful! I am printing this thread out to bring to my Sports Massage Therapist. I wish-wish-wish she was covered under Insurance, I can't afford to go *enough* to really fix things... but she makes them better, that's for sure, so I'm hoping to suck it up in the next week or two and get a session in. Been thinking of getting to the Chiro too, just for a 'tweak.' Doesn't feel like anything's really out, and I don't want to do the whole X-ray/2x week for 6 weeks thing... just want to be cracked. :lol:

[Penthilisea]

Lyrica- I had to work up to a fairly high dose before I had effects. However, it is worth it to me- I haven't had any weight gain. I take 150mg 1x per day, and it really helps with the stiffness and soreness, but not with any breakthrough pain. I do reccomend folks try it, and work up to a high dose before you dismiss it. Side effects are sleepiness, and it can make you feel "high" for the first week or so.

[Piatt Farms]

I had to work up to a fairly high dose before I had effects. However, it is worth it to me- I haven't had any weight gain. I take 150mg 1x per day, and it really helps with the stiffness and soreness, but not with any breakthrough pain.
Thanks, this is really good to know. Despite being small, I have a bizarre resistance to certain meds which tends to freak the dr's out, so it's good to know that you experienced the same thing. ...and honestly, I would love to feel "high", it would be a nice change from literally dragging myself out of bed, stiff, sore and bleary eyed at the beckoning of small kids.

For the last couple of days the fingers of my right hand have been SO stiff and sore. It hurts to bend them in to touch my palm or extend all the way...I couldn't figure it out until I got in the car and realized that the otherday when I drove home though a mild snow storm I had been gripping the steering wheel more tightly than normal
Seriously? Now I can't even hold onto the steering wheel without having pain for the next 3 days? What will it be like 10 years from now? The slightest weather change causes pain in my ankles/knee's and wrists that wakes me up in the middle of the night and makes it hard to go back to sleep....
Honestly these are the things that scare me to death.

How are all of you coping?

Forgive me, I'm probably having a weak moment brought on by, yet more stress in my life and need a virtual shoulder to cry on and seek wisdom from.

[EqTrainer]

Go ahead and cry, we are good at handling that...

my hands have been really bothering me too. At first I thought it was because I am trimming more but then I realized it has nothing to do w/anything at all. I've been paying my 10 year old son to rub them and that helps more than anything else...

I wonder, too, where this is all going to end up when we are old. Maybe we need to start thinking about the Retirement Home For Old Fibro Riders.

[pintopiaffe]

Aww, Piatt... 's ok. WE get it. That's why this is so helpful. Just when you think you're crazy, someone pipes up and says "yah, me too." :sadsmile:

Hm, EqT, I'm up for it. We would, of course, have to have an indoor, and I think we'd have to have PTs, MTs, Chiros etc. on retainer, visiting on a regular basis, for both us and our equines.

We'll all meet at the end of a lesson day in the sauna or hot tub, where we can relax away our aches and enjoy a nice glass of whine... ;)

You're right though, seriously, I *do* wonder how long I'll be able to keep this up on my own. But that's also why I'm breeding easier to ride backs still with nice gaits. :D

[Bearskin]

So happy to have found this thread. I am sitting here, continually tearing up as I read, trying to deal with today's frustration and pain. My fibro is trauma-induced (3 back-to-back car accidents where I was rear-ended). I have cervical and lumbar disk isses, had torn thoracic rib capsules, kad,torn sternal cartilage, TMJ issues, migraines, vertebral bone spurs, and the list goes on. I am currently a pro, but mainly deal with lower-level client horses (thank goodness my clients are sympathetic). Ironically, I do better being able to ride consistently, although my riding days are definitely numbered. If I do not ride for more than 3 days in a row, I suffer much more and am almost unable to walk due to shortened stride (piriformis implications?).

There are several days where the "I really overdid it today" thing is prevalent. The guilt I feel over how my medical issues affect my husband and young son are probably even more traumatic . . . I know they must get tired of dealing with it too.

So . . . has anyone taken Pristiq for their Fribro? It is touted as a timed-release dose of serotonin and norepinephrine to deal with the pain. Definitely helps me to sleep better, but the side effects are a PITA (some fuzziness--have the fibro fog anyway, decreased libido--forgot what that's all about anyway, etc), and it is expensive (even under insurance).

Would Savella be a bette choice? Also, what is "soma?"

Also, for those considering Lyrica, my doc put me on Neurontin (generic is gabapentin). The main difference there is that Lyrica again is time-release, and Neurontin isn't. HUGE help with the pain, but the initial titration can be difficult as it is very trail-and-error to find what wowrks for you regarding dose and timing (it only lasts a few hours). Major benfit is that it is not metabolized in such a way that effects/damages the liver.

I just hate being on these meds daily in order to even thinking about functioning. Having a 4 yo little boy who is super active can also be a challenge when dealing with "better living through chemistry". The super-cold winter we are having definitely is making things worse all the way around. Major pity party going on at the moment . . .

[Bearskin]

Bump -- no one for "soma"?

[tollertwins]

I do SOMA...I like it much better than 'regular' muscle relaxants.

It isn't so much as muscle relaxant as it is a 'central nervous system' muffler. It puts me into a really nice sleep (altho some people can take it and stay awake - my liver is apparently a wuss).

The Dr's are not really sure how it relaxes muscles - it doesn't work on them directly. Something about making the rest of the body relax makes them relax as well.

Flexeril and stuff make it really, really hard for me to get out of bed in the morning.

Pinto - I also got a 'couch' hony to ride.....

[doublesstable]

After reading all the posts; I had to reply - DITTO. It's like I wrote all this stuff you all wrote. I want to cry!! I was diagnosed with firbro last year.

It took two years of diagnostics and doctors looking at me like I was a nut. I have had hot flashes and body pain like I just ran a marathon for over 15 years and I just thought it was because I am so active and I was just getting old.... But now at 45 I cannot take it anymore and it has affected my life and I needed help.

I was in an accident 20 years ago where I had head trauma. I also, when younger had mono. (interesting)

I keep quite about my constant pain because I don't want to sound like a complainer to people, know one really understands...... but hearing your stories and reading about your pain I can only say - YES THAT'S IT!!!

I hated bugging the doctor but I just knew something was extremely wrong. I had to explain to this doctor; I am a pretty tough gal; I lift 80 lb bags of feed; stack bales of hay, trim my horses hooves, etc..... I have had five kids and the only time I have been to the doctor other than to have my five kids was when I had my gallbladder removed and when I had a ruptured tube.

My doctor put me on a low dose of Amitriptyline. I have been on it for about 5 months and it has helped me. The hot flashes and cold spells when sleeping are much less. The sharp leg pains; expecially at night are much better. And I do seem to sleep better. I have not experienced any side affects. When I ran out of it a few times I got the leg pains again and didn't sleep at all. Oh and I did have hair loss but not anymore.

I still have muscle and joint aches/pains and I get that bed jacket pain some of you were talking about. I cannot even lift my arms to put clothes on... weird. The other day my wrists hurt SO BAD I grabbed my hubbys vicodin... I said no one should ever be in this much pain... it helped.

I have had this so long I am just used to it. I always wondered why I wouldn't sit very long.. it hurts so much. Now I know and want to do what I can to not let it get the best of me.

I still ride and compete in Hunters. One of my horses I may start Jumpers if my body can take it. I try to stay active but curling up on the bed often sounds better....

Thanks for listening and I hope we can all help eachother live a more comfortable life.

I do like the idea of eating more chocolate :)

[tollertwins]

FWIW...on days when I hurt really bad I found that sitting a nice slow jog w/o stirrups would help.

Mentioned it to the PT and she said 'yep - open chain exercise' whatever that is.

Also - these infrared heating pads are kinda pricey, but so amazing that I'm going to get an infrared sauna one of these days. Those are (relatively) inexpensive - 2 person is less than a nice saddle.

Thermotex heating pad:
http://www.thermotex.com/index.htm[/ur

Mini-sauna:
[url]http://www.infraredsauna.com/

I don't remember if that is the sauna I was looking at or not, but gives you the basic idea. Also - there is one that makes a single person model that you lie down in....

ETA - these are the saunas that I was looking at - they have completely non-outgassing designs.

http://www.soleilsaunas.com/faqs.htm

[pintopiaffe]

oh, WOW TT--the SHOULDER PAD... OMG... I'd about kill for one of those tonight!

I'm flaring, anyone else? Been almost a week now. Not sure why. Two migraines too. But arms/shoulder just ache & ache...

I try to stay active but curling up on the bed often sounds better....
DoubleS, you got it!!

My problem in flares is getting up in the morning. When I'm finally warm, relaxed and not hurting, it's SO HARD to get up.

Any suggestions for getting going? I know we've talked about it a little bit before... Hot shower doesn't work for me--makes me sleepy (plus my hair will freeze when I go out to do chores) It's more like I feel like I need to set my alarm, drink an energy drink, go back to bed for two hours THEN get up... :uhoh: Seriously, do I need to set my alarm or take the Cymbalta a couple hours *before* I need to get up?

I have to bite the bullet and go to the Dr. again soon--before Insc kicks in, as my fingers are falling asleep all the time. :( I'm sure it's related to the shoulder/neck/head pain, but I feel like SUCH a hypochondriac! This is almost constant enough though to frighten me into going. It was one thing when I was laying down or typing... it's something else when it's almost constant, regardless of what I'm doing... and DOH--I'm sure that whatever is causing that is related to the cold/reynauds-like stuff! DOH!

Hope everyone's hanging in. Let's keep this thread going as a place to come comisserate, check in, post new news, etc.! It's Very Good to NOT be alone!

[doublesstable]

yes Pinto, SUPER BAD TODAY... it's been raining and I was so bad today I finally had to take vicodin. I feel horrible!!
migraines and all. Hubby has migraine meds but I cannot take them - it makes me feel like my heart is going to beat outside my chest.

pinto I totally understand... I have everything you just said... absolutly everything and feel like you do...fingers falling asleep, the head/shoulder/neck pain SO BAD.... but it's real. It hurts. My elbows hurt. My knees hurt. (thanks for listening.)

I have been getting up every am for the last few weeks about 6:30 getting horses fed and cleaned, kids off to school, and doing laundry and paperwork in the office. It's been so wonderful being able to do this and NOW... today and yesterday I woke up at 9:00 I couldn't get out of bed... I told my hubby; it's a flare up...

I am so glad for this thread too. I am sorry you are too having a flare up. I am going to try to take a warm bubble bath after I feed the horses.

I hope you feel better. If you find something that works for these kind of days... I want to know!! :yes:

[pintopiaffe]

Well, they do say misery loves company...

And while I don't *wish* this on anyone, it at least makes us feel less crazy, 'eh?

I felt like the world's biggest whiner a year ago when I really started *investigating* things. I felt like a hypochondriac.

But I KNEW that something was wrong, and this wasn't 'normal.' Of course, the path of 'diagnosis' was to rule out other stuff...

DoubleS, what you and others say is SO true--that we haul grain and lug water buckets and do what has to be done, and so sometimes people see that as 'well you *can't* have something chronic' or 'you can't have chronic pain.' (and I KNOW this applies to others as well--not just Fibro/CFS)

What they don't realize is that the PASSION for horses overcomes even the worst days in most cases. Many days, it's the ONLY reason I get out of bed.

Don't get me wrong, the Cymbalta has given me back much of my life. Guiafenesen is helping too, (even if it's just with chronic allergies/sleep/analgesic--it *works* and I'll TAKE it) But when you hit the bad days, THANK GOD for horses. :sadsmile:

I know I am stressing about my bebe in KY--of which I can do nothing but pray and ask for prayers/energy/support... but this started before. There are other things going on too which are huge stressors... but honestly? I think it's the damn barometer.

WHERE on this planet can you live with the least changes in barometric pressure? ;)

Hang in there DoubleS. You are NOT alone. Or nuts. (or, well *completely*( nuts--the whole 'horse' disease... that's different :lol: ) Thank GOD, neither am I. :cool:

[tollertwins]

Its the weather fronts.....my PT said that anybody who is sorta broken really flares during major weather changes, and the cold doesn't help, either.

I've taken to trying to find (reasonably) inexpensive/on sale merino long underwear and almost always have that on as a base layer. The back-on-track shirts actually help if they are under something that keeps them close to your bod, but the long sleeved ones dont fit me.

If you can get a couple icebreaker long underwears shirts you can do the one to wash one to wear thing...since they don't build up odor at all.

They are still not cheap on sale - but save my butt in the damp cold. Both sierratradingpost.com and altrec.com typically have some closeouts.

I get the bodyfit 250 to wear under other stuff, and get it kinda tight (which it is anyhow).

[Oakmont Sporthorses]

Hello all,

Wanted to share my experiences...interesting food for thought, maybe?

Diagnosed with fibro in 2001, came down with symptoms while pregnant with my 2nd child in 2000 (doctors told me I was crazy until 2001, and then I was still ignored). Eventually, doctor gave me Tramadol and that was it. I lived on ever increasing doses of Tramadol, then added Aleve, Ibuprofen, Tylenol, and Robaxin to the mix. Enough pain meds that I was able to ride/train 2-4 horses a day, while taking care of 23 acre farm, 2 kids (3 if you count my hubby), etc. Finally, by 2006 I could no longer hold the reins on x-c, and after multiple MRIs of hands and feet, diagnosed with fibro-related acute tendonitis of both hands and feet. Told to quit riding and see someone to get off the pain meds and get some proper meds for fibro.

Ever the pain-in-the-ass, I delayed and took more pain meds (did get on the 6-9 month wait to get in to even see a Rheumatologist, however). My husband talked me into going to have Reiki done (after our cowboy-type neighbor told him how much she helped his back...my husband is a vet, and so for him to recommend anything alternative is a hint of how bad I was...). Shockingly, after about a month, I started to feel sick when I took some of my pain meds, and started cutting back. Felt OK. After about 6 months, I was down to Tramadol to help with pain to sleep and one in morning to start moving. After 9 months, no pain meds (had cancelled Rheumatologist appointment by this time). Still had horrible fog and flare ups, but everyday life was so much better, and able to start riding more often again.

Still, the fogs were always my worst symptom, and they were getting worse. Couldn't get anything done, hubby getting pissed about eating at 8 pm (knew I had to start supper, but would sit down and then realize that I missed an hour somewhere and was running late, then in a panic...). Went to my nurse practitioner, who had been in a clinic previously that dealt with a lot of fibro patients. I told her exactly how I'd been managing the fibro issues (Reiki, and, by now, Manual Lymphatic Drainage too, which also seemed to help muscle flexibility), but that the fog was very debilitating and depressing. She asked if I would try a low dose of an ADHD medication, as she had noticed with earlier obese fibro patients that some of them, when prescribed a stimulant to increase energy, had a dramatic improvement in their fibro symptoms (she searched for research on this, but never found any). So, she prescribed a low dose of Vyvanse (typically prescribed for children...I was comfortable with it because my son is on it for ADD). OMG...absolutely amazing. It doesn't make me hyper, but when I have to do something...I can get it done! I experimented over Christmas and took 4 days off of it...and was horrified by how I felt when the fog closed in again. I woke up, sat in the chair in my room, and just felt comatose (very dramatic difference). I'm not perfect by any means, but, it's such an improvement. I've only been taking it about a month now, but the primary side effects were mild (lack of appetite, esp at lunch, slight dry mouth right after taking it) and seem to be going away. I sleep fine, and although I'm now more sore from doing more stuff, it's just helping me focus through the fog...no instead of thinking I need to make a list of what needs to be done...I make the list. Instead of walking past the stalls and thinking that I'll do them later...I just clean them and get it done.

To top it all off, I went to my last Reiki session without telling her about the new med. She knew that I had fibro when I started there because all fibro patients have a "buzz" or "fuzziness" to their energy, as if everything is a little off and dirty. This last session, about 5 minutes into it she asked me what I had done, because things were so clean...I told her about the med and she said my brain function seemed so much healthier on it and that I needed to stay on it (and this is something as she is very anti-medication).

Don't know if this is useful to anyone, but it's my extremely unorthodox approach to my fibro. I now feel as if my life is relatively normal...and considering that 1.5 years ago I needed help to get out of bed, could barely walk in the morning, was always exhausted, despaired of ever riding/competing again, and lived on painkillers and muscle relaxants...

Chris

[pintopiaffe]

Chris, thanks for sharing that!

That's super interesting.

When I went on the Cymbalta, on day 5 or so I just felt like I had new, clean glasses. The world was just sharper and brighter.

I think it's SO important to keep searching for what works.

I keep driving past my old Chiro's office, and they have accupuncture and Reiki there. While I'd about sell my soul for a good massage right now too, it nags at me each time I go past. It's all going to be out of my own pocket, which is the issue, and my new FT job--while better for mind and FAR better for soul and body, pays about 1/2 of the job that was killing me (sitting 10 hrs with little/no breaks--OSHA exempt etc.)

Back to horsey topics, I am SO bummed we have gotten SO MUCH snow. The horses I am really fired up to work with (in my mind, anyway) are the youngsters, and I don't dare work them on the road yet. :( The snow is well up past knees and hocks though, on the way to bellies. I might try handwalking someone to make a 'path'... see how bad the drifts are...

I ADORE calm, sunny winter days. It can be 10 degrees, but if there is no wind, I am in heaven. The sun is so bright here in winter, and the sky is so, so clear and dark blue you feel like you're looking straight into space. (which you are, but you know what I mean ;) )

I just got in the Cashel wedge I won for cheep on Ebay around Christmas, to fit the synthetic endurance saddle I tricked all out on the Silly Filly. I used a RiderGrip pad as a model, and a scrap of thinline material to make a pad for the seat to help with hip pain... covered that with sheepskin (which is SO yum in the winter!) and also won a pair of girth converters for $5 so can use a dressage girth. Saving up for wide stirrups so my winter boots don't get stuck, meanwhile just won't use stirrups... :uhoh: Just walking anyway... :p

This has been a super bad week pain wise, for the first time in a LONG time. I've got to get a rein on my diet, but not-so-much you can do about weather... I really, really want to ride though.

[doublesstable]

Misery loves company.. thanks for being my company! And we are nuts... I know about the horse part. :lol:

I know when I first started with my doctor he told me; you don't look as bad as some of my other patients... I just grinned and dealt with it... because that's what we do. what do you want doctor; for me to sit there and whine in agony.. that's what I FEEL like doing but solves nothing. I could sit there and tell you every joint and muscle in my body is hurting and on fire; my head is pounding and my feet feel like they are going to fall off.. I can't sleep and I can't get out of bed; I can't put my jacket on to leave the house without feeling like my arm is about to break, my brain wanders about in a fog....... but no, I'm okay.

On the weather front; it's is Raining like crazy here. Our pool overfilled and we had to drain it. Horses are hanging in there. I was able to get my big guy out yesterday between the down pours and make him move about. He gets goofy when it's cold.

I'm always cold... I look funny with my layers of socks and slippers... long undies.. good idea!!

pinto; I read the part how you would sell your soul for a good massage to my hubby; this was so he would know when I bug him it's not pretend... then I thought no one would want my soul it's kind of damaged anyway.

It's been raining just for a few days and I want summer now too... I want to buy two houses. I want to be like a duck and fly south for the winter... maybe that would help. The reality of that right now is laughable... money is SO tight for many people.

Oh well. I hope you all are feeling better today. Now I need a massage. Thanks pinto... see what happens when you talk about those good things. Maybe a twinkie will do???

[Wayside]

Misery loves company.. thanks for being my company! And we are nuts... I know about the horse part. :lol:

I know when I first started with my doctor he told me; you don't look as bad as some of my other patients... I just grinned and dealt with it... because that's what we do. what do you want doctor; for me to sit there and whine in agony.. that's what I FEEL like doing but solves nothing. I could sit there and tell you every joint and muscle in my body is hurting and on fire; my head is pounding and my feet feel like they are going to fall off.. I can't sleep and I can't get out of bed; I can't put my jacket on to leave the house without feeling like my arm is about to break, my brain wanders about in a fog....... but no, I'm okay.


Gah, I know exactly what you mean. I can't tell you how any doctors have told me I don't look like I'm in pain. When I was in the Navy, in bootcamp I ran my PRT (running 1.5 miles, 104 situps, 72 pushups) and scored an excellent in 90-something degree temps with a raging case of pneumonia and a fever of 103. When I gave birth to my son, it was not an easy delivery, I did not ask for or receive any medication, did not scream or cry at all, and at one point the nurse about fell over when I very politely asked if I could have a drink of water between pushes. So even if I'm pushing through it and holding myself together, if I say I am in pain, I AM IN PAIN :mad:

Had a dressage lesson this morning, and it was great. Felt good earlier today, but now the left side of my lower back and my left thigh are killing me, and my neck is tight and painful, and my head hurts <sigh>

Decided that I'm taking my two younger mares to my trainer's this spring. Sadie just for boarding and lessons, Ilen for boarding, lessons, and part time training. I just don't have the kind of energy I used to, and I think the little one could really use some daily attention, though a lot of what she needs is just being sacked out more.

I have another pain clinic appointment coming up soon, so we'll see if he's got any new suggestions for me. He offered Lyrica last time, but it seems like anything that has even a tiny chance of making me fat and sleepy will make me very fat and sleepy, so I'm pretty hesitant to try it. I did nothing but sleep on the Cymbalta, and gained over 15 lbs in a month on it. Right now I'm actually on Ritalin, which helps quite a bit with the fatigue, fibrofog, and surprisingly, with the pain. Sleep doctor prescribed it, but the pain dr thinks its helping with the pain because it has helped normalize my previously very low blood pressure or something like that. And since I have EDS, it also helps prevent postural orthostatic tachycardia syndrome.

[pintopiaffe]

I'm seeing a pattern here of high pain tolerance to start with...

How many folks would say they are (or were?) pretty stoic?

I remember having a displaced fracture put back into place without any happy juice... and was sent home with instructions to elevate above heart--but not with any Rx.

Drove myself to the ED in a standard with a fractured left ankle and the tip of the little bone snapped right off... Stuffed some of those long frozen ice-pop things in my sportsbra and finished teaching 5 more lessons the day I was double barrelled in the chest (which was the trigger event for the fibro/cfs) etc. etc.

BUT, in THIS, I feel like a sissy and a hypochondriac. It's *different.* Either I have NO pain tolerance any more... or it's just different pain?

I slept like 14 hours the other day, and it went a LONG way to kicking the flare in the backside. YAY! Still achey doing stairs at work, but feeling more human... until this stupid STORM blew in. 68MPH winds, 50 FREAKING DEGREES IN JANUARY. :sigh: The ED was insane full tonight, people on beds in hallways... so I'm not the only one feeling the storm at least. ;)

[Q.H.D.Q.]

Hi Pinto,

I bore people with my story, but who knows, maybe it will help someone.

When I went into menopause I immediately had pain in all my joints; sometimes taking me two hours to warm up in the morning and get to work. i was in tears, and for the first time understood the term "quality of life."

Doc said it was "menopausal arthritis" from the sudden drop of estrogen and I would be better in 3-5 years. (that part happens to be true, and i believe estrogen has a lot to do with fibro, too!) I read the literature on that, and sure enough rapid drop in estrogen -- like in ovarectomies -- did cause arthritic pain in 20% of women.

During that time I also tried Omega HorseShine for my horse and noticed his arthritis improved. I researched the equivalent dosage for me and began taking 8 grams of omega 3's a day (Spectrum Flax Oil, 1 tbs daily). I was feeling better in two weeks. In six months i was able to stop taking celebrex and voltaren.

I have such empathy for folks going through fibro, or that have debilitating migraines, or anything else that just saps your energy and takes away life one day at a time.

jan


Wow, you certainly didn't bore me. I just want to say thanks for posting your story here. I never have heard about "menopausal arthritis" before but it sure sounds like something I might have. Never been diagnosed with fibromyalgia, but I do have MVPS, and as for the aches and pains I've been having, I figured it could be arthritis or "just getting older."
The idea that it could be related to menopause is really a comforting one--like it might get better at some point or at least not be anything scary.
Thanks again for sharing, 3Spots! :)

[Penthilisea]

Hi All, Just wanted to give a Lyrica update, my dose has been increased again (150mg 2x per day) and it does make a huge difference in my soreness and attitude! It doesn't do anything for acute pain, but for the chronic soreness, and resistance to movement I have noticed a great change- and no weight gain or negative side effects at all. I use narcotics for acute pain, but YMMV. This cold wet winter is killing me!

[EqTrainer]

I'm seeing a pattern here of high pain tolerance to start with...

How many folks would say they are (or were?) pretty stoic?

I remember having a displaced fracture put back into place without any happy juice... and was sent home with instructions to elevate above heart--but not with any Rx.

Drove myself to the ED in a standard with a fractured left ankle and the tip of the little bone snapped right off... Stuffed some of those long frozen ice-pop things in my sportsbra and finished teaching 5 more lessons the day I was double barrelled in the chest (which was the trigger event for the fibro/cfs) etc. etc.

BUT, in THIS, I feel like a sissy and a hypochondriac. It's *different.* Either I have NO pain tolerance any more... or it's just different pain?

I slept like 14 hours the other day, and it went a LONG way to kicking the flare in the backside. YAY! Still achey doing stairs at work, but feeling more human... until this stupid STORM blew in. 68MPH winds, 50 FREAKING DEGREES IN JANUARY. :sigh: The ED was insane full tonight, people on beds in hallways... so I'm not the only one feeling the storm at least. ;)

Besides all the things I have broken, my appendix burst in an ER and I left and went to another hospital.. when I had my kids, I had no meds..

you get the idea! We are very stoic.

[MEP]

There is apparently some really big neural junction in the neck..squish it and everything else kinda hurts, too. The PT is trying to get me to read a book called 'Explain Pain' that is relatively easy to read and appears to have a lot of good info....But since I'm taking vicodin waiting on a hip replacement I don't have enough brain to get through it.

Also - I have that knot, too! It only gets bad now when I use the mouse too much. PT called it 'T4 syndrome'...right at the bra line and almost under the shoulder blade.

I used to have a rib actually be subluxated that would really aggravate it. She'd have to (literally) pound right at where the top rib kind of joins the collar bone to get it to go back in.

The other thing is that there are a couple trigger points in the big neck muscle in the front - the one that I can neither pronounce nor spell. Both PT's would put pressure on that muscle - and YEP! Referred straight to that knot under the shoulder blade.


Do you mean the sternocleidomastoid muscle? Ha! I know it well. That was actually the reason I was originally diagnosed with Fibro!

It started over the years with a major pain in my left ear. Over time, it would come and go - mostly I thought it had to do with talking on the phone too long (yeah, don't call me blabbermouth or anything!).

But sometimes it was so bad I thought I had an ear infection. Finally, I went to my ENT doc, who checked it out very thoroughly and couldn't find a cause. For a while he thought it might be inflammation in the Carotid artery so he sent me to every specialist he could think of and it wasn't that.

As a last resort he sent me to PT. The PT took a look at my back and said, hmmm, you've got scoliosis. It is very mild but causes enough unevenness that the muscle running up the side of my neck is so enlarged looks like a football tackle's (Yeah, very pretty, uh-huh!) because I hold my head out oddly originating from my crooked spine and wonky shoulders.

But I also had so much other pain, the PT did the test for fibro and was convinced I had it. The diagnoses was later confirmed by another PT when I had a bad case of sacroiliac pain and spasms in my back.

The best thing I've found for pain in that muscle is massage. And that's why I know the name of it!

I also have painful biting critters gnawing and knotting the muscles just above the shoulder blade on my left (high) side. That stinking knot is nasty and always gets bad when I'm typing on the computer (which I do tons of every day). (I don't know the name of that particular muscle though :lol:)

I also have a very tender spot below the shoulder blade, but that doesn't have its very own knot or independent biting power.

[dressagevettech]

Hi All, Just wanted to give a Lyrica update, my dose has been increased again (150mg 2x per day) and it does make a huge difference in my soreness and attitude! It doesn't do anything for acute pain, but for the chronic soreness, and resistance to movement I have noticed a great change- and no weight gain or negative side effects at all. I use narcotics for acute pain, but YMMV. This cold wet winter is killing me!

I do wish the Lyrica had worked for me. They got me up to almost the max dose and I really just felt worse on it. It did nothing for my pain and made it very hard for me to sleep. So my brain fog got worse.

They have me back on the Prozac and that does help my body ache/joint pain alot. But doesnt do alot for my sleep/fatigue so my doc is trying to figure out what to do about that next.

This winter has been brutal with such cold extremes. It is NEVER below freezing for two weeks in a row here in TN. So not a good time for me and I had a pretty bad flare up around Christmas.

Though I still constantly deal alot with the "but you dont look sick" comments from some in my family. That is really hard to deal with and try to explain especially when you are just so tired and achy! Thankfully I am now self-employed so I do not have to deal with coworkers not understanding.

And on really bad days I am so glad I can come here on COTH and see that I am not alone. :) It does help alot.

[Penthilisea]

What other meds have you tried? Muscle relaxants? Narcotics? Tramadol? NSAIDS? I would definitely work with your doc to find out the newest research for fibro. Savella is having good results in my network of fibro friends. Sorry Lyrica didn't help, I had that with Cymbalta, not only didn't it help my fibro pain, it made my depression SO MUCH worse!

[tollertwins]

[QUOTE=MEP;4648548]Do you mean the sternocleidomastoid muscle? Ha! I know it well. That was actually the reason I was originally diagnosed with Fibro!

QUOTE]


YEAH! THAT ONE!!! What a PITA! (except it's on the wrong end to be a PITA!).

My worst thing now is waking up feeling like my head is gonna explode sometimes. Had my hip replaced Monday....Tuesday nite I was thinking that the pain meds were giving me a raging headache....NOPE! Sleeping on a 'real' pillow.

I'm home but can't do my normal thrashing at nite so am waking up w/ those muscles like ROCKS and my head exploding again.

I also have some nerve sheath enlargement right under those football player muscles (traps?). Everybody thought for YEARS that they were muscle knots. Massage therapists would really get after them, which would feel WONDERFUL - for about 12 hours. Then they'd start feeling like somebody was sticking an ice pick in my shoulder.

I don't know about the pain tolerance thing....with my leg and all everybody has been going 'you have such a good attitude about it and you're doing so much, considering how bad it is', and with the fibro the pain doc was suprised that I was riding. I'm like 'what do you want me to do? sit around and whine????'.

But I don't think that my overall pain tolerance is that high...just more of an 'it's only pain and I know why its there so I'm gonna ignore it' type of attitude.

One of the nurses in the hospital told me about somebody who had BOTH hips replaced at the same time and used ZERO pain meds!!! :eek: Now THAT is a high pain tolerance!

[Bearskin]

Storm rolling in. My body's screaming at me . . . how is everyone handling this winter? I am so frustrated I could scream . . .

[Wayside]

Storm rolling in. My body's screaming at me . . . how is everyone handling this winter? I am so frustrated I could scream . . .

I know what you mean, it's been a lousy winter for me, too. Storms coming through and frigid temps completely do me in, and then when it's finally nicer out I'm still stiff and achey from not doing much, and I'm more and more out of shape, so it's easier to over do when I finally do get moving. Ugh.

Have an appointment at the pain clinic today. Hopefully I'll come home with something to try. I need more in-the-saddle time or I'm going to go crazy, heh.

PT has worked wonders for my chest pain, I'm glad to say. It's virtually non-existant now, and I can ride with my shoulders back pretty consistantly. So one body part done, about a zillion to go :lol:

[pintopiaffe]

Storms coming through and frigid temps completely do me in, and then when it's finally nicer out I'm still stiff and achey from not doing much, and I'm more and more out of shape, so it's easier to over do when I finally do get moving. Ugh.


Just read in an article somewhere this is the downward spiral of Fibro. You hurt so you rest... so you lose muscle, so when you DO again, you hurt more... lather, rinse, repeat.

:dead:

I just could use a day with SUN that is warmer than 20 with no wind. I'd just LOVE to play in the snow now that the rain knocked it down enough so the ponies won't flounder in it.

I WANT TO RIDE!!!!!!! ;)

(remind me of that when I'm exhausted and hating the heat in July, 'eh? :cool: )

[nomoregrays]

Wow! Nice to know that I'm not going crazy.

My chiropractor was the first person to mention fibro to me. I haven't gone through my doctor to confirm this. And, since I've moved, I haven't taken the time to find a new doctor.

I'm one of those stoic people - I have spots on my body that are a dull ache most of the time. I'm always surprised when my chiro finds all the other spots on my body that hurt.

Thanks for all the information on this thread.

Chris

[pintopiaffe]

Can I go on a slight tangent?

I'm having a lot of pain while sleeping. It'll wake me up. Generally the fibro 'points', especially hip, knee & shoulder. I sleep on my side, and the side that is 'down' will ache and ache and ache.

I can't really afford a new mattress just at this second--and have hated them in the past, short of the really, really $$$$ ones. I have always slept best on a (chiropractor approved!) futon mattress in a waterbed frame...

But I'm thinking it's too hard and that's what's irritating when I'm having a flare?

Wondering if anyone has any mattress toppers that have helped? I'm looking at either a featherbed topper, a memory foam... or, alternatively, trying an air mattress? Waterbed is out, had it, won't work with the dogs and cats. :uhoh: :p (drip, drip, GUSH... )

I dunno. I saw the air mattress at a discount store yesterday and it started me thinking. Anyone had any relief from such things?

Meanwhile, another tangential find--but not so much--anyone using guiafenessen (sp? sorry) try the Dollar Store!!! I'm getting 15 400mg for a dollar. That's 60 for $4, if I am actually doing math... which is FIVE BUCKS CHEAPER than even the cheapest generic I've found. Seems to work just as well! I'm having some luck with taking it, probably just helps because it's a strong analgesic, but doesn't hurt that it seems to help the sinuses and ears. :yes:

[tollertwins]

HA! I'm the queen of princess and the pea.

Some toppers are too soft, others are too hard, a few are just right (at least for awhile).

Here's what happens to me....topper is WONDERFUL for awhile till I get a nice person-shaped hole in it. Have used memory foam, wool (my fave, actually), feathers, tried latex but felt like it was fighting me all nite). Once I have the nice person shaped hole, the back and hips start sinking too much and put strain on my neck, and I wake up w/major headaches.

What I'm using right now is one of these:

http://www.amazon.com/Wenzel-Full-Insta-Bed-Airbed-Built/dp/B000ETVTDO/ref=sr_1_21?ie=UTF8&s=home-garden&qid=1265332221&sr=8-21

I keep it pumped up pretty firm and use a 1.5" memory foam topper from Target on it. The valve is a little flaky - have to pump it up every few days. As long as I do, it's been working fine for my ouchies...and I can go thru a LOTTA these for what some mattresses would cost.

[EqTrainer]

7 years ago we were on vacation and stayed at a very upscale B&B in Charleston..

the bed was UNBELIEVABLE. I fell asleep in it, in midsentence. I mentioned it to the concierge and the next day in my email was the name and maker of the bed. We bought one. 7 years later, still in bed bliss. 3 of my friends have bought the same bed. It is a Juno by Beautyrest. Oh la la, worth giving it a try :)

[Oakmont Sporthorses]

[QUOTE=pintopiaffe;4661500]Can I go on a slight tangent?

I'm having a lot of pain while sleeping. It'll wake me up. Generally the fibro 'points', especially hip, knee & shoulder. I sleep on my side, and the side that is 'down' will ache and ache and ache.


A few years after the fibro started I could barely sleep at all. Same points for me, and it got so bad that I would wake up in tears every time I needed to turn over, sometimes waking my husband up so he could help me. In the mornings, he would frequently have to help me out of bed as well.

I ended up getting a Sleep Number bed...best thing I ever did. My husband jokes that I sleep in a hammock, as I have very little air in my side (his side of the bed is almost rock hard, of course), but it's been great. I can change the hardness if I feel uncomfortable, but unless I'm having a bad spell, I now sleep virtually pain free (or at least it doesn't wake me up in tears anymore!). My back (with multiple injuries over the years, my worst point) is so much better as well. I think they offer a trial period, so you could get one to try...if it didn't resolve your issues like it did mine, you could then send it back. Sometimes they have sales on their website.

I think the fatigue associated with lack of sleep, combined with the lack of a deep healing sleep (when muscles could/should relax and heal?), just makes the pain so much...more...unbearable/severe/frustrating/???

Chris

[Penthilisea]

Do any of you experience seizures concurrent to your fibro symptoms?
I had my first ever seizure today, and I'd like to find out more about keepings myself safe whilest riding.

[pintopiaffe]

P, how scary! Are you sure it's related? YIKES. :eek:

No experience or advice, just thinking of you and sending 'get well, NO more of THAT!' prayers your way!

[EqTrainer]

Seizures?!! No.

What type of seizure did you have?

[tollertwins]

YIKES!

Me, neither, and I never heard of seizures being at all related to Fibro....

Altho if you get on a wierd combination of meds that could certainly do it....some of them lower your siezure threshold.

Or if you are on a new one it could be an adverse reaction....my mom had one to novacaine once.

[Wayside]

No, I haven't had seizures either.

Hope they're manageable and not serious. Jingles for you!

[Penthilisea]

Tramadol is the culprit. Not the fibro per se, but the meds I was trying in order to not live on narcotics. Scary as all get out- I was helping my boyfriend at his automotive repair shop, and he and his coworker looked over and saw me sliding off my chair.

The only lingering effect so far is that my sense of taste is off and I bruised myself badly fighting against the restraints they put me in en route to the ER. I'm never hobbling a horse again- I know how it feels! :(

[EqTrainer]

So no more Tramadol = no more seizures?

Glad you are ok! I'll never look at that bottle of tramadol the same again...

[Always Tardy]

Tramadol and muscle relaxers can also increase the risk of seizures. It is one of the contraindications. Glad I only took that comb occasionally.

I have a question but some background first.

I have hip and thigh pain that has gone on for couple of years. Sometime better, sometimes worse, driving a long time makes it worse as well as sitting. I also pull muscles and ligaments all the time but never show any swelling or heat and the pain of using said muscle or etc, will have me shaking if I use them too much. Had a shoulder that I had been kicked in as a teenager, that hurt really bad, MRI was great, Xray was great, the GP said it was fine. Otho thought maybe torn cartilage, had cortisone shot, it's behaved for 6 yrs now. Been to PT for almost all injuries with no really good results.

So 2 yrs I've had the hip and thigh pain. Ingored it for the most part. Nothing to see and can not recreate the pain by manually moving the leg as I did go to the DR once. He sent me to PT again. Moved and my husband found a really good massage therapist and she has helped and says I'm a mess. She can never find a stopping point on me as she says everything on me is tight, tight, tight. But I only get to see her once a month due to her being so good. And by the time I go back, I've back slid. So, finally make a DR appt.

He did nothing to actually look at my hip and legs. No can you move it this way etc. Did listen well. Only test he did was for inflammatory response? The SED rate can back normal. So no other tests or blood work. He tells me he is leaning toward Fibro. But that would be a hard diagnosis to make on a first visit.

So, here is the question. He prescribe Lyrica and Meloxi-cam.
Would you take the lyrica? I am taking it but kinda nervous as I don't have all the pain that is described. Yes I'm in a lot of pain and super tired all the time but......I still do everything. I can function through it all. I only crash occasionally and it's the fatigue that gets me, not the pain. The pain has gotten better but it does on Motrin as well. I feel more tests should be done. Or should I be happy that he is starting with Fibro and going from there?

Sorry for the small novel.
Any suggestions are appreciated. My next appt is on the 5th of Mar. and I do plan to keep taking everything until then.
TIA
Helen

[keana]

My husband was put on lyrica for back pain, tell me how and what it does for you.... I almost left my husband, he is sweet and lyrica turned him into a angry, grumpy man.... he got upset and could not tell me why..

At first I thought maybe the pain and stuff had got him down but it just was not him!

He got took off it and was back to his sweet self I will probably never try it, doctors said that happens sometimes with lyrica.

I'm having a really bad day, foggy and close to tears it helps to know I'm not alone.. tried to go work my horse 7 times and got too dizzy weak so stayed in bed. I have to work in the morning so hope I'm feeling better!

I also took pain really well, over worked my self, and kept going this has changed my life.....

[centeur]

I was in pain for two years after an assault by an inmate on the job. I was doing the Baclofen/tramadol route until some research on the net pointed me in a different direction. This worked for me: Myofacial release by an awesome massage therapist (about 6 visits), dumping all meds, starting Cymbalta. The Cymbalta does not have the weight gain problem that Lyrica has. I was completely out of pain within weeks! I now don't need the tramadol or the Baclofen UNLESS I re-injure my back (like falling off a horse!). Once the "flair up" is done, I'm as good as new again.

I hope this infor helps someone, it certainly was the answer for me. And yes, I was diagnosed with Fibro.

Good luck and here's wishing you a pain free future.

[winkybear]

Hi all -

I'm having a particularly bad flare today. I have been in 'bed jacket' (more like a straight-jacket, yikes!) pain all day. :(

My usual topical of Stop Pain roll on isn't doing much for me today. I eventually had to take a flexeril (muscle relaxer) and then I gave in and took half a vicodin tonight.

It's gotta be the weather. High pressure, fog this morning and sunny this afternoon. I am miserable. :(

No way I go to the barn under these conditions. It isn't safe for me to drive with the bedjacket pain, and never when I take vicodin (which is one reason I am reluctant to take it).

I also have an arterial condition and when the barometer is high I feel as tho I can't get any blood to my legs and arms, well, because I can't!! :no: I get exhausted just walking down the hall.

I should have known it was gonna be one of those days when I woke up this morning to cold white toes. :dead:

Oh well, tomorrow will be better :cool:

At least I no longer have to hold down a job and deal with all this pain and disability at the same time. THAT was truly awful and I "feel" for all of you who must work. :cry:

Hang in there, everyone!

[MassageLady]

OMG...this is so sad..I cannot believe that so many people suffer from this when it's curable!! Please go to herbalhealer.com and READ!! I have copied this from their site:
REFLUX, CHRONIC BLOATING, CONSTIPATION, CHRONIC ANEMIA, INFLAMMATORY DISEASE, FIBROMYALGIA, LUPUS (very severe infection), GWS, CHRONIC RASHES, SEBORRHEA, PSORIASIS, CANCERS and a host of other diagnosed ailments are all linked to a systemic (in the blood stream) Fungal - Mycoplasm Infection. Once this infection is in the blood stream, it can affect any organ giving people many different types of symptoms. McCain was able to document this finding using her Live Field Microscopy equipment. In every case above, chronic, systemic candida was found in the blood stream! This infection goes undiagnosed by the medical community and each ailment is treated for symptoms with no hope of any cure. All these ailments above have been helped by the following supplemental protocol.

Candida (fungal infection) can go systemic, into the blood stream and cause joint pain that is often confused with arthritis. Use of antibiotics and chemotherapy the number one cause, but diet, environmental toxins can also play a role in the infection. It can also affect the liver, causing rashes, the kidneys causing severe back pain and poor kidney function, etc. When it's in the blood stream it can infect anywhere. That is why there are so many ailments tied into this condition. Chronic fungal infection can also deplete the iron in the blood causing low energy and anemia. Leg cramps, twitching legs and general body stiffness is also due to the inflammatory nature of the fungal as well as the fact that it depletes the calcium in the body too. This leads to the cramping. Chronic infection when left untreated gets progressively worse and is always present with Fibromyalgia, Cancer, Lupus, GWS, Gerds, and a host of other misdiagnosed ailments. The following is a long term natural supplement program to help your body detox the chronic infection.


a good friend was cured by an amish man after suffering and being 'managed' on steriods for FOUR YEARS:no:!! PLEASE LOOK INTO THIS-there is no need for you to continue to suffer

[Penthilisea]

MassageLady- While we are all glad to hear your friend was cured, I don't believe all of us have simply never heard of such treatments, nor ignored them. I have certainly tried a similar protocol through a local lyme disease specialist to no avail.

The current medical research suggests that fibromylagia is a change in the way the central nervous system acts, with an overproduction of substance P (detectable in a spinal fluid tap) with resulting changes in the way the brain responds to pain (visible on scans of the brain during painful stimulus as compared to non fibro folks with the same stimulus.)

Be careful with Lyrica too, btw. The max dose is a hard limit, higher will cause ... wait for it... seizures! (ask me how I know?)

[EqTrainer]

Lyrica versus Cymbalta? Thinking I need to try one, not sure which one does what for who. Any thoughts?

[sonomacounty]

Another fibro sufferer here. I've tried both Lyrica and Cymbalta. I love Cymbalta. Lyrica did not work out for me due to the fluid accumulation in the feet, ankles, lower legs, weight gain and nausea that would not go away. I started with a really low dose, too.

[artisticgold]

Multiple serious injuries over the years, but doctors find nothing really bad that explains why I feel so tired, achey, incredibly sick....I've been to more doctors than I can remember, had tons of tests, physical therapy, and tried lots of things, nothing really works, just started on Lyrica, but have the start of a migraine today - vision, head, stomach, yuck! Never had migraines before, could it be the meds? hmmm, will have to keep track. Maybe the Cymbalta would work better.

I've been wanting to go to a great holistic doctor in Rochester, NY, Dr, Mary Weiss. She cured my friend's fiance who although he was young in his 20's was having heart problems/palpitations, extreme fatigue, just not himself. The conventional doctors just wrote him a script, and finally told him basically it was all in his head. Well, Dr. Weiss found out he had a huge fungal overgrowth in his body that could've killed him soon. He almost had to go into the hospital to be on IV's of metronidizole and other drugs, but luckily pills worked, and he bounced back and is feeling great and very healthy now. I really need to go to her, but my insurance won't cover her as she's out of the area....guess I need to bite the bullet and pay for it out of pocket. Years of pain, fatigue, and feeling like I'm dying everyday just aren't worth it...I want the years I have left to be fun and happy, not sick and tired.....

Another fibro sufferer here. I've tried both Lyrica and Cymbalta. I love Cymbalta. Lyrica did not work out for me due to the fluid accumulation in the feet, ankles, lower legs, weight gain and nausea that would not go away. I started with a really low dose, too.

[sonomacounty]

I also think they start people out at way too high of a dose. These are hard, hard, hard meds for your body to get used to.

I work in medicine, btw.

When I start (or stop) a new med, (of this sort), I do my own tapering up (and down) of the dose and take a good few weeks to get up to full dose on it. Yep.

That could be why, Artistic. But, Lyrica is just a hard medication for people to tolerate. Do feel better, Hon.

[Parrotnutz]

Lyrica versus Cymbalta? Thinking I need to try one, not sure which one does what for who. Any thoughts?

Cymbalta here......works good, but I have to take 120 mg to get the full effect. The only side effect I had at the start was slight stomach ache and loss of appetite<which I wish had stayed that way,LOL> Both side effects went away.
It is like someone "dialed down the pain".

Yes I do have "flares" at times when the barometer goes nutz, but mostly fatigue, not as much pain.

Let me say, I am very sensitive to meds, so for me to tolerate cymbalta speaks volumes

[artisticgold]

Today I am seeing double and have a really funky headache and dizzy. Absolutely must be the lyrica...Sheesh, hope this goes away soon.

People that are on the Cymbalta, how does that help you with the nerve pain and fatigue???

[Penthilisea]

Cymbalta seems to work better for folks who are not currently on any anti depressants (regardless of the reason). Lyrica works differently, and seems to have a synergistic or additive effect with anti depressants of any sort- some people do take both.

[Leena]

Pinto, I sent you a PM but your box is full...

[GaellentQuest]

Have any of you Fibro guys/girls gotten checked for Lymes? I deal with a lot of your symptoms, and my LLMD (lime litterate medical doctor) that I go to has had people come in with Fibro and about 70-80% of them tested positive for lymes. Just thought I would put that out there.

[sonomacounty]

People that are on the Cymbalta, how does that help you with the nerve pain and fatigue???

It does. Is it all gone - no, but that's me. Still, do I really like Cymbalta - yes.

I didn't get a chance to read the whole thread, but what, in specific, is your nerve pain, AG?

My own protocol to deal with my issues is: daily Cymbalta, daily Topomax (25 mg., small dose, more of a nerve pain med.) and Ultram for pain when I can't keep going. Zanaflex (muscle relaxer) when needed.

The reasons for the above are fibro (Cymbalta), Topomax (chronic plantar fasciatis aka sore feet). Oh, massage therapy is awesome, too.

The hot new medication in pain management, btw, is Savella. People are loving it. I've not tried it but probably will at some point.

Feel better.

[sonomacounty]

Checked for Lymes - sure have. Lots of times. I've turned over every rock many, many times with this darn body pain issue. Great thought though. :) Thanks.

[MassageLady]

MassageLady- While we are all glad to hear your friend was cured, I don't believe all of us have simply never heard of such treatments, nor ignored them. I have certainly tried a similar protocol through a local lyme disease specialist to no avail.

The current medical research suggests that fibromylagia is a change in the way the central nervous system acts, with an overproduction of substance P (detectable in a spinal fluid tap) with resulting changes in the way the brain responds to pain (visible on scans of the brain during painful stimulus as compared to non fibro folks with the same stimulus.)

What exactly have you tried? I doubt that a 'Dr.' would do natural remedies. Most are under the thumb of the pharmaceutical companies and not allowed to even mentiont them.

This is what I believe:
DETOXING CHRONIC CANDIDA
AND OTHER FUNGALS

REFLUX, CHRONIC BLOATING, CONSTIPATION, CHRONIC ANEMIA, INFLAMMATORY DISEASE, FIBROMYALGIA, LUPUS (very severe infection), GWS, CHRONIC RASHES, SEBORRHEA, PSORIASIS, CANCERS and a host of other diagnosed ailments are all linked to a systemic (in the blood stream) Fungal - Mycoplasm Infection. Once this infection is in the blood stream, it can affect any organ giving people many different types of symptoms. McCain was able to document this finding using her Live Field Microscopy equipment. In every case above, chronic, systemic candida was found in the blood stream! This infection goes undiagnosed by the medical community and each ailment is treated for symptoms with no hope of any cure. All these ailments above have been helped by the following supplemental protocol.

Candida (fungal infection) can go systemic, into the blood stream and cause joint pain that is often confused with arthritis. Use of antibiotics and chemotherapy the number one cause, but diet, environmental toxins can also play a role in the infection. It can also affect the liver, causing rashes, the kidneys causing severe back pain and poor kidney function, etc. When it's in the blood stream it can infect anywhere. That is why there are so many ailments tied into this condition. Chronic fungal infection can also deplete the iron in the blood causing low energy and anemia. Leg cramps, twitching legs and general body stiffness is also due to the inflammatory nature of the fungal as well as the fact that it depletes the calcium in the body too. This leads to the cramping. Chronic infection when left untreated gets progressively worse and is always present with Fibromyalgia, Cancer, Lupus, GWS, Gerds, and a host of other misdiagnosed ailments.

[Thomas_1]

^ What a load of spherical objects !

[Weese]

Ooooh I can join in on this one!

You know what really chits me about it? On top of the pain, exhaustion and brain fuzz?

I could do fabulous, and I mean FABULOUS braids (the round english sewn ones) in no time before.

Now it takes forever and a day and they SUCK!

Call me shallow ....

[takethestage]

Have been away from COTH for a little while and I was so glad to find this thread when I came back! Currently coming out of a flare... this snow-verload up here has set me back so far. Not being able to ride consistently is killing me and I feel my seasonal depression coming back. UGH!

I've never heard of this Guaifenesin Protocol... does it really work?!?! I'll have to ask my rheumo about it. She still won't put me on Lyrica or Cymbalta because I'm under 18, only by a few months! but she is adamant. Maybe this could help me. I'm so stiff and sore lately.

I'm also so excited to hear (maybe not the best word choice) that other people have the shoulderblade knot... mine comes and goes but I have noticed a correlation between pain there and my neck hurting. Since it's not considered a "fibro point" my issues there have been mostly ignored.

This thread has given me so many points to bring up at my next appointment... I've been giving up lately on any pain relief because NOTHING has helped so far but I have renewed hope! :)

[tollertwins]

Takethestage...

If you can find a GOOD accupuncturist they can usually knock a flare back in a few treatments.

Doesn't cure the issue, but man, they can make a BIG difference in your comfort level. Problem is finding a good one.

[MassageLady]

What a load of spherical objects !

Thomas, as my dear old aunt used to say-if you can't say something nice, don't say anything.
I cannot believe that people would not even consider trying something different, something that is VERY affordable, and PERHAPS be the cure for your disease! Isnt' it worth just trying something else?? Or do you really, truly feel that your doctor is helping you? If your pain is gone, and you are getting better-great, if not-what is the harm in looking other places? I really cannot understand some peoples mind sets. I know people personally who have gotten better, with alternative treatments-you say your in pain and need help--I'm trying to help.
definition of insanity...doing the same thing over and over again, expecting different results.:lol:

[Thomas_1]

Thomas, as my dear old aunt used to say-if you can't say something nice, don't say anything. I don't know you're aunt but she sounds incredibly dull. I presume though that as you saw fit to quote her that you found her thoughts of interest. I find it interesting though that you didn't see fit to follow them!

Now my old mum used to say "if you can't stand the heat get out of the kitchen" and "if you want it sugar coated, then go to a sweet shop"

I cannot believe that people would not even consider trying something different, something that is VERY affordable, and PERHAPS be the cure for your disease! Well as you well know they do. There's folks suckered every day and some even make a living from promotoing such garbage.

I don't though!

Isnt' it worth just trying something else?? Or do you really, truly feel that your doctor is helping you? Well you probably asked the wrong person there. As I'm actually the world's longest survivor of a matched unrelated bone marrow transplant I'm probably the best ever testament to the miracles of medical SCIENCE and leading edge conventional treatment.

You'll not persuade me that a fridge magnet from a self trained wannabe alternative health care fruit loop would have given me a chance!

If your pain is gone, and you are getting better-great, if not-what is the harm in looking other places? You mean aside from the fact it's ripping folks off and giving them false hope and profiting from that????

I really cannot understand some peoples mind sets. Evidentially, but I'll do my best to get the point across to you!

I know people personally who have gotten better, with alternative treatments-you say your in pain and need help--I'm trying to help. Some would say very trying and profiting falsely on the procedes.
definition of insanity...doing the same thing over and over again, expecting different results.:lol: Keep doing the same and you'll keep getting the same... so try something different!

[MassageLady]

My Aunt was a wonderful woman who you can't even imagine being anywhere close to the person she was...so don't even go there.

Now my old mum used to say "if you can't stand the heat get out of the kitchen" and "if you want it sugar coated, then go to a sweet shop"


No wonder you ended up this way.

Well as you well know they do. There's folks suckered every day and some even make a living from promotoing such garbage.


and most all have been cured from their diseases...why else would people that have gone thru med school and vet school decide to do alternative therapies?? because they actually cure the patient.:D Yes...please feel sorry for my friend who was cured of her fibro after 4 YEARS OF HELL taking steroids for the pain, with no relief...until she went with alternatives.-2 weeks later--count them TWO, and her pain was gone-yep bunch of garbage :lol:

You mean aside from the fact it's ripping folks off and giving them false hope and profiting from that????

sounds like the pharmaceutical companies you're talking about.

Keep doing the same and you'll keep getting the same... so try something different!
I think you're getting it! what's the harm in trying something different?? If what you're doing isn't working!

Tell you what...those that are suffering, I'll work with 3 people here-telling you what I'd do-I won't profit one dime off of this, and if you're not better in 1 month-I will reimburse you for what I suggested you do. How's that for putting my money where my mouth is?? :yes:
Would you do that thomas??? I actually CARE about helping people---you just want to add sarcasm and pettyness to the chat.
pm me if you are interested.

[Thomas_1]

My Aunt was a wonderful woman who you can't even imagine being anywhere close to the person she was...so don't even go there. Now you brought her into the heat of the kitchen.

No wonder you ended up this way. Thank you.

and most all have been cured from their diseases...why else would people that have gone thru med school and vet school decide to do alternative therapies?? because they actually cure the patient.:D The plural of data isn't anecdote!

There's no empiracle or scientific evidence to substantiate this ridiculous false claim!

Yes...please feel sorry for my friend who was cured of her fibro after 4 YEARS OF HELL taking steroids for the pain, with no relief...until she went with alternatives.-2 weeks later--count them TWO, and her pain was gone-yep bunch of garbage :lol: yeh right. I look forward to reading the peer group reviewed case study.


sounds like the pharmaceutical companies you're talking about. You mean the ones who are subjected to regulation, licencing, control, evidencing efficacy etc etc etc.

Then there's these self trained alternative healers......

I think you're getting it! No you're wrong. You're not thinking or getting it!

Tell you what...those that are suffering, I'll work with 3 people here-telling you what I'd do-I won't profit one dime off of this, and if you're not better in 1 month-I will reimburse you for what I suggested you do. How's that for putting my money where my mouth is?? :yes: Get your butt over here then and I'll cancel my next consultant's appointment.

Would you do that thomas??? No I wouldn't. I'll give you that. I've never seen it as fit and proper to do something I'm not trained or competent to do. I can't stand it when folks who are self trained or might have hung out with someone or had a go at something set off with gusto and enthusiasm to lay false claims and false hope.

I actually CARE about helping people---you just want to add sarcasm and pettyness to the chat.
pm me if you are interested. Are you allowed to tout for customers on a horse bulletin board? Indeed are you allowed to treat people or is it so unregulated over there that you can go from messing about with horses to medical treatment in people?

Precisely what qualification do you have? What training have you done? What makes you competent to practice medicine and treatment? What regulation are you subject to?

[EqTrainer]

Hey, could you two stop your pissing match, or take it to PM's so those of us who actually have fibro don't have to wade thru everything to try to find some interesting/important information? Please!

[Thomas_1]

So you're actually really on a horse bulletin board trying to find some important about fibromyalgia????!!!

Might I recommend this:

http://www.ukfibromyalgia.com/

http://www.arc.org.uk/arthinfo/patpubs/6013/6013.asp

[EqTrainer]

No, Thomas, but I am always curious about what my peers have to say about it. Right now my doctor asked ME to see what other horse peeps w/fibro were experiencing on Cymbalta and Lyrica.. horse people are more active than most and she thinks their input may be helpful in deciding which one to try first.

[MassageLady]

thomas I'm not here to diagnose or treat anything, I'm just trying to help those here, the same way good friends have been helped. I apologize for this 'pissing match', it was never my intention. My intention has only been to give people something to look into, something that has helped many people I know!
the same way that people here are telling others about the drugs they are on which have or haven't helped-are they 'treating' others? No.

If anyone here would like more info on what I know has helped many...then pm me, as I said, I gain nothing from this.

[CatOnLap]

I doubt that a 'Dr.' would do natural remedies. Most are under the thumb of the pharmaceutical companies and not allowed to even mentiont them.


It is remarks like that, which tempt me think all massage/alternative practitioners are bigotted quacks such as your remarks seem to show you to be.

Except, unlike you, I actually have done my research and know this is not always true. And because I have done my research with good alternative practitioners, as an MD, I share my multidisciplinary clinic space with many complementary medicine specialists.

Please provide ANY proof that "most doctors...are not allowed to mention" natural remedies. Or even ANY proof that "most doctors" are "under the thumb of pharmaceutical companies".

Kindly cease this defamatory behavior.

[CatOnLap]

...why else would people that have gone thru med school and vet school decide to do alternative therapies?? because they actually cure the patient

Actually, the reason most allopathically trained MD's branch out into studying complementary therapies has nothing to do with cures, which are actually darn rare in complementary medicine. We study them because we are searching for things which may provide some relief, when our evidence based medicine has not provided it for certain patients.

Seriously Massage Lady, there is no great conspiracy going on among we MD's to hide the benefits of complementary treatments. But we do our best to educate people on the limitations of all our treatments- and that includes telling people when there is NO GOOD SCIENTIFIC EVIDENCE for a particular treatment, which is unfortunately true for many popular complementary therapies.

[MistyBlue]

Fibro has got to suck for those who have it.
Maybe some Patch Adams type help?


I doubt that a 'Dr.' would do natural remedies. Most are under the thumb of the pharmaceutical companies and not allowed to even mentiont them.

Actually there are plenty of doctors and even hospitals that use natural remedies:
http://www.youtube.com/watch?v=HMGIbOGu8q0

[Penthilisea]

Ok enough of the "Fibro is a syndrome that can't be diagnosed, etc." Please see the New York Times:
http://health.nytimes.com/ref/health/healthguide/esn-fibromyalgia-expert.html

If you can't be bothered to read the whole thing, here are the highlights (which oddly enough are identical to the info I have posted here previously.)

"Fibromyalgia is real. But the pain isn’t occurring because of damage or inflammation in muscles and joints. It’s the result of differences in the way the brain and spinal cord process and transmit pain."

Re: evidence for fibro
"...brain imaging that allows you to look at the levels of ...neurotransmitters. We’re particularly interested in glutamate, a neurotransmitter that increases pain transmission. He’s found that levels are higher in the brains of people with fibromyalgia. At the same time, patients have lower levels of neurotransmitters that reduce pain transmission, including norepinephrine (http://health.nytimes.com/health/guides/test/catecholamines-blood/overview.html?inline=nyt-classifier) and serotonin. ...

One of the other big advances in the fibromyalgia field is the discovery that substance P and nerve growth factor — chemicals that increase pain transmission — are two to three times higher in the spinal fluid of fibromyalgia patients. All these imbalances may be responsible for their hypersensitivity."


So they can test our spinal fluid for a clear diagnosis. Likewise, these effects on the brain *do* seem to have a genetic/traumatic basis, like some of us have long speculated.



It's not yeast, it's not lymes, it's not in our heads. :mad::mad::mad:
(Barring misdiagnosis of course.)


So far the only medical treatments revolve around ameliorating the symptoms of pain; however a holistic approach that also includes massage, tai chi, water exercise, stress reduction, cognitive behavioral therapy, etc has significant results in improving the quality of life for patients.

[summerhorse]

I never had mono and I can't really remember a time when I didn't have some fibro symptoms and/or highly sensitive to pain. I developed a high tolerance for pain (as in keep on keeping on no matter what) but bearing the pain is so exhausting whether it is pure fibro pain or additional pain from an injury. I think some people are just born to fibro. A lot may not have much trouble as children because as children we GENERALLY =) got more rest and had less stress than we do as adults. Probably in better shape too!

I know if I can get a LOT of rest all day when I need it (not just when I can or at night) it reduces the fibro symptoms a huge amount. I discovered that recovering from a shoulder surgery which was the first time I was "off" and able to rest whenever I felt tired in well my adult life! It just isn't possible though working full time to get enough rest (for me). So the state felt sorry for me (and my coworkers) and Layed us all off! So I guess I will feel better in July (job ends june 30) even as I starve to death so the animals can eat!!!

[summerhorse]

Today I am seeing double and have a really funky headache and dizzy. Absolutely must be the lyrica...Sheesh, hope this goes away soon.

People that are on the Cymbalta, how does that help you with the nerve pain and fatigue???

Cymbalta has been fantastic. I do miss the loss of appetite that did go away though! I lost 10 lbs. the first month. (all came back) BUT I would never give it to a depressed person, the first week or two it can make you feel like jumping off a bridge (plus you may be walking around in a semi coma like state!). That did go away but now if I miss one I can get kind of gloomy and weepy but not jump off the bridge depressed.

[Parrotnutz]

Today I am seeing double and have a really funky headache and dizzy. Absolutely must be the lyrica...Sheesh, hope this goes away soon.

People that are on the Cymbalta, how does that help you with the nerve pain and fatigue???

I don't find the cymbalta helps with the fatigue, wish it did. Thats why I take the provigil 100 mg. for the fatigue.

[Penthilisea]

FYI, I have been on a new (to me) med for sleep with really good effects. I hated Ambien etc bc I felt hungover in the am. This is remeron, an anti depressant- at 15mg it knocks me out and lets me fall back to sleep as I wake up throughout the night- higher doses do NOT have this effect apperantly, which I like, for the KISS principle.


I'm totally waiting for someone to do spinal taps on other mammals (including horses) and see if they can find elevated substance p and norepinephrin (sp?). Then maybe some studies on foals to see if the accident prone ones do develop the changes in chemistry over time etc...

[eventingismylife]

I am 17yrs old and was diagnosed with Fibro the beginning of this year, and both my mom and grandmom have it as well. Docs have been telling me for years that I'm crazy and its all in my head, or I am depressed or have anxiety. Nope, its Fibro.
I have been on Effexor XR for my "anxiety", but it is also for Fibro, it helps a little but I still have really bad side effects so I have finally talked my mom into letting me get off of it. I've tryed Cymbalta as well, it made me just as sick or more than the Effexor XR does. So now my doc is going to see is Lyrca will help at all, at least with the pain.
How do you guys do this day in and day out? My mom and grandmom arent very much help in this regard whatsoever, because I ride and hope to go pro one day. I am so wiped out all the time, the only time the symptoms dont completely control my life is when I am on my horse, but they still do to some extent. I went to Walley World today and when I got home I could barely take groceries inside I was so weak and tired.....I feel so helpless. Does anyone else feel like this at all?

[CatOnLap]

I am 17yrs old and was diagnosed with Fibro the beginning of this year, and both my mom and grandmom have it as well. Docs have been telling me for years that I'm crazy and its all in my head, or I am depressed or have anxiety. Nope, its Fibro.

Yeah. I have had symptoms since about age 16 and was not diagnosed until age 32.

I have been on Effexor XR for my "anxiety", but it is also for Fibro, it helps a little but I still have really bad side effects so I have finally talked my mom into letting me get off of it. I've tryed Cymbalta as well, it made me just as sick or more than the Effexor XR does. So now my doc is going to see is Lyrca will help at all, at least with the pain.
Yeah, its pretty hard not to worry or be depressed when your energy is so low, everything hurts, all the tests are normal and no one believes you.
IME over the past 20 years, the drugs were not helpful for me. They are worth a try. But with 2 near fatal reactions to treatments, I am very cautious about trying anything new with drugs anymore. on bad days I make do with a little codeine( 5-15 mg) or a little amitryptyline (12.5-25 mg) for the muscle soreness and stiffness. I also use my hot tub daily, do pilates daily, walk about an hour or more a day to keep my energy up and ride as much as I can-even if its jsut an hour walking because I do not feel the pain once I am on the horse.
How do you guys do this day in and day out?
Well, the alternative is to give up and die isn't it? There are better and worse days. I live for the better days, and tolerate and "get through" the bad ones. And you know, the other things in life make me very happy, now in my mid 50's. Half the problem when you're young is that everyone else can do more, while you have to listen to your body and do less. Now, over 50, most of my peers are slowing down. I am still doing what I did at 30. I finally fit in... because they have all slowed down.
My mom and grandmom arent very much help in this regard whatsoever, because I ride and hope to go pro one day. I am so wiped out all the time, the only time the symptoms dont completely control my life is when I am on my horse, but they still do to some extent.
You might revise your plans about going pro. I only got through medical school because I literally went to school and slept and that was it.

I went to Walley World today and when I got home I could barely take groceries inside I was so weak and tired.....I feel so helpless. Does anyone else feel like this at all?
Shopping at walleyworld is probably bad for the planet...

Nutrition can make a big difference but you have to find out what works for you. I found that the more fresh veggies and lean meat protein I ate, and the less refined carbs I consumed, the better I felt, for the most part. I don't know about your Walleyworld, but at ours, you can't get fresh veggies or meat. But you can get plenty of refined carbs...

My upside is that I was told at 18 that I probably had a severe arthritis and would be lucky not to be in a wheelchair at this age. I do use a cane on bad days, but no wheelchair, so in a way I am lucky.

Good luck. Maybe in 40 years or so you'll be advising others how to get through!

[eventingismylife]

Thanks Cat :).
Yeah, I know what you guys are talking about with the "Bedjacket" pain, I have it every day. Does it go up the side of your head, make your ears hurt and up to your temples? It makes your arms, shoulders, neck, hands hurt too?

[CatOnLap]

sometimes it hurts to brush my hair. The roots hurt.If I can lift my arms that far. but my episodes are considerabley less frequent than they were.

You are still at the stage where you should be pushing your doc to investigate and look for more treatable things like Lyme, etc.

Before the diagnosis was made for me, I used to push myself really hard. I got pneumonia 3 times in 3 years and was off for weeks each time, by burning the candle too long, as they say. But then, if you don't push against the stiffness and pain to some degree, it doesn't get better. Balance. Find a balance.

[EqTrainer]

sometimes it hurts to brush my hair. The roots hurt.

Geez, I thought that was something other than the fibro...

does yours ever fall out a lot?

[Penthilisea]

Hair falling out *can* be a sign of low protein. But yes, I shed constantly. It's worse when my hair is long, because it's more noticable, I suppose.

In other news....
Been researching the substance p issue. Looks like capsaicin actually reduces substance p in spinal fluid. Which is ironic, given the use of such preparations for producing excessive leg motion in certain shady equestrian competitions...

Anyone tried capsaicin supplements? Or will I have to :mad::mad::mad: and rub it on my skin?

[miss-n-Dixie]

I have been lurking on the boards for a while- I cannot say how happy I was to find this disscussion (minus the pissing match lol). I was diagnosed in '02 after many many wrong answers. My Aunt has fibro very severe & my mom, gran & another aunt have it also (though not as severe as my 1 aunt & I).

I have been reading this for 2 days (took me that long b/c I have bronchitus right now & kept passing out infront of the laptop lol- not complaining though, been getting some much needed rest)

I am finding it more & more difficult to get thru each day. I am a full time mom & college student (a late career change- i'm 34) and along w/ the 2 horses I also do rescue (mostly orphaned/injured deer, goats,ect.. but have also bottle rasied 2 foals & 2 calves)

I Over the past year or so I have found myself wanting to sleep more & more, even going to sleep in my truck between classes, or for 15-20 min while i'm waiting for my son to get out of school. The funny thing is, as tired as I am I still have insomnia. I wake up all the time with the pain some of y'all have described (legs, shoulder, ect) & thought it was just from the mattress- kinda glad to know i'm not loosing my mind- although my other half, i feel thinks i'm crazy. He is a paramedic & i guess its the "I dont see anything so you must be fine" thing with him.

Mornings are the worst for me, it takes me forever to get going, & sometimes no matter how much coffee or B-complex I still cant get my motor running. Then there is the 'fog'-- I had NO idea that this was associated with fibro!!! My son has dubbed it the "oh look a squirrel" syndrome lol-- it is horrible trying to stay focused on damn near everything, even watching TV (thank goodness for the DVR so i can rewind it as many times as needed to actually 'get it') or when someone is talking- lucky for me my friends know i'm prone to "squirrel" moments so they are ok when i "check back in" and ask for a re-cap LOL

I am currently taking Tramadol & have ben taking ADD meds as needed for the ADD (the Dr. never even made the connection between the ADD & fibro- go figure :-P) I usually take flexaril as well (havent had any strange side effects thank goodness) but need to get a refill on the flexaril. Since i ran out i have noticed a difference in my day-to-day functioning (or lack of)

as for riding-- not enuff time... but when i DO get to ride I do feel better, but as soon as i stop for a few days i feel like a train wreck. The 'bed-jacket' pain- i get that alot & am glad to know im not nuts- i'm not the only one whose head hurts when you brush it on some days. The evil place at the shoulder blades- yup. Migraines- yup

ok i am sorry for the rambling... Thank you to Penthilisea who started this!! And thank you to all of you for letting me know 1- im not alone & 2- i'm not imagining the pain, tiredness & "brain fog"!!

Hugs & Jingles!
~Dix~

[tollertwins]

Careful w/ the capsacin and heat if you rub it in.

My husband got me a neoprene vest to wear riding in the winter one year because I would ache so bad when it was cold.

Got a really nice 'sunburn' from having that stuff on my back under the heat from the neoprene.