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  1. #1
    Join Date
    Aug. 9, 2002
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    Default Fellow chronic pain sufferers: how do you retain hope, how do you keep going?

    Being thorough and determined--and not afraid of hard work, commitment, and "looking under every freaking rock for a solution", I believe I have tried pretty much everything (with varying degrees of success), so I am looking for advice and insights--an maybe some commiseration!--from other sufferers.

    Oy.

    I am having a BAD back pain day, today--so am a bit demoralized. I try NOT to go to the narcotics--or even the NSAIDs!, but sometimes I can no longer deny myself these because they become necessary if I am to get through the day; the brain opiates provided by contact with horses only go so far!

    If I can't function without pain and disability, I can't work--let alone do the things I need to do for my family and my animals (and I am a dog and horse trainer--well, a *people* trainer , though I have enough sense now to parcel out the heavy lifting chores to other, who have no pain.)

    Yes, I use and contribute to a daily gratitude jar, and yes, I have supportive family members (thank HEAVENS!), but they can't truly understand the day to day struggle.

    Thoughts? Wisdom? Fellow sufferers, please weigh in, TIA!
    "Hope is a good thing, maybe the best of things, and no good thing ever dies."

    "It's supposed to be hard...the hard is what makes it great!" (Jimmy Dugan, "A League of Their Own")



  2. #2
    Join Date
    Sep. 6, 2000
    Location
    Decatur, GA
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    2,549

    Default

    Let me first say that I am so sorry that you are going through this. I am a therapist and want to recommend a mode of therapy that has shown good success in reducing people's suffering with chronic pain. If it seems like something that might help you or someone you know here is a link to a list of therapist that use ACT therapy. http://contextualscience.org/civicrm...eset=1&force=1 Best, Leigh
    "What's so funny 'bout Peace Love and Understanding?" Elvis Costello


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  3. #3
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    Mar. 18, 2005
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    1,064

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    I am just now learning to not let my pain control me but rather me control my pain. It took me quite awhile to know what my limitations are and yes when I need to I do go over my limit.

    I also try not to hit the narcotics unless it is a last resort. I have found that if I do some easy muscle stretching in the mornings I tend to have a better day. I have also found that the busier I keep my mind the better I am. However like you there are days that I just can not accomplish anything. Specially on high humidity days and when it storms.



  4. #4
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    Mar. 18, 2005
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    I am just now learning to not let my pain control me but rather me control my pain. It took me quite awhile to know what my limitations are and yes when I need to I do go over my limit.

    I also try not to hit the narcotics unless it is a last resort. I have found that if I do some easy muscle stretching in the mornings I tend to have a better day. I have also found that the busier I keep my mind the better I am. However like you there are days that I just can not accomplish anything. Specially on high humidity days and when it storms.


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  5. #5
    Join Date
    Aug. 14, 2000
    Location
    Clarksdale, MS--the golden buckle on the cotton belt
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    Default

    Do you have any idea what is causing the back pain? Reason I ask is that I've been having the same the past few months, sometimes so bad that I cannot straighten up and need a cane to walk. Steriods definitely help me. Right now, I'm taking a medrol dose pak, but it will be over tomorrow and I'm dreading what will happen. Had a back MRI last Friday, but haven't heard any results yet.

    If your problem isn't back arthritis, I'd definitely look into finding a McKenzie therapist. Robin McKenzie is a New Zealander who developed a set of ways to treat backs mechanically. I have a night roll that keeps my back stretched while I sleep. I'm also using Voltaren gel on my lower back and that helps tremendously. You can buy it in a larger tube from Canada over the counter for about 1/4 of what it costs by prescription in the US. It is an NSAID, though.

    Physical therapy does help, even if it isn't from a McKenzie certified therapist.

    It's tough knowing that you'll never be cured; life becomes a matter of controlling what you can control.
    "I'm a lumberjack, and I'm okay."
    Thread killer Extraordinaire


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  6. #6
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    Dec. 6, 2012
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    I have RA and had a really hard first couple of years before they found an immunosuppressant that works. I have found that both learning what my limits are, and learning how to medicate after I've gone over them, are two huge things that have helped me function.

    Most days now I can ride without too much pain. However on days like Saturday when I ended up having a 2 hour lesson, I knew that I needed something to help. I took a low dose prescription pain killer *before* I was in agony (but after I drove home). I slowed down a little but I was still able to function that afternoon. If I didn't take the pain killer until after the pain hits it just seems to keep the pain from escalating, but it doesn't make it all go away.


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  7. #7
    Join Date
    Jul. 3, 2012
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    Default

    I am so sorry that you are hurting...it's a miserable way to spend your days.

    I've had back pain since I was 12 when scoliosis started. It's like background noise now...it's there all the time but I'm so used to it that until it becomes an "8 or 9" I don't notice it. It even hurts to sit and knit.

    I push myself. I go to a chiropractor once a week and he uses his little jack hammer thing to relieve some of the muscle tension. I take 2 ibuprophen at bedtime so I can sleep. Sometimes 4.

    Funny thing about riding is that I can be in a lot of pain before riding and after but most of the time I can't remember being in pain WHILE I was riding. I know I was but the pleasure I get and the distraction make it seem almost pain free.

    I also don't 'waste' myself on activities that don't matter. The house isn't neat and tidy, laundry isn't always put away, kitchen might be a mess. Life is short. I use myself for the things that bring me joy.

    I hope you can find something to help you function a little better. (((hugs)))
    Ride like you mean it.


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  8. #8
    Join Date
    Jul. 3, 2012
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    gdolapp, I've found that weather has a HUGE effect on my pain. And strangely enough it seems that when the 'weather' is in the middle of the country..ND,SD and last week in OK...that's when I'm at my worst. And I'm in Michigan. I was in so much pain, head to toe. Even the tendonitis in my wrist was throbbing.

    I don't know why that is but it is consistent over time.

    By the time the storms got here, like right on top of us, I didn't hurt like that. So people shouldn't discount the fact that far away weather might be a problem, not just the stuff that's close.
    Ride like you mean it.



  9. #9
    Join Date
    Aug. 30, 2001
    Location
    Purcellville, VA
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    Default

    I take NSAIDs, every time I think "my back is great these days "and start skipping my daily dose of diclofenac sodium, I feel awful a couple of days later.

    if I find myself starting to take Aleve, which shreds my stomach, but really works, I make an appointment with my pain management doctor and she gives me the injection that is needed. I have both arthritis ( joint injections) and buldging and leaking discs (epidural steroid injections). I even had radio frequency neurotomy done on my left SI in 2011.

    I have to exercise, I pay when I don't. I have a super weak core, core exercises are hard.

    muscle relaxers when it gets too tight, and when it is so ouchy that I cannot even start to sleep, then I go to the Tylenol with codeine. Luckily, that isn't needed very often.

    When I hurt, I am cranky with everyone, which is not fair to them. My son once called me out on unfair lashing out at him by saying "mom, what is up? I just drove up and you laid into me, does your back hurt?". I stopped, realized that yes, it really did hurt, and the boy told me to go take a pain medication.

    Controlling pain will not likely turn you into an addict, I only need the codeine a few times a year, usually because I tweaked something lifting improperly, didn't exercise or stretch and started the cycle.

    someday I might need to address the discs surgically, but for now, one or two epidural injections a year keeps me sound and happy.

    Oh, linaments are fabulous. Trainer 5000 and Bigeloil are my favorites from the barn and Tiger Balm for humans is pretty good as well.

    and on that note, I need to go do my exercise, my back is tight right now.
    Last edited by SaddleFitterVA; May. 27, 2013 at 08:33 AM.



  10. #10
    Join Date
    Oct. 14, 2010
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    2,307

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    I've had chronic pain since a car wreck in my early 20's. For the first 10 years or so, I self medicated (NSAIDS), ignored it and rarely saw a doc. Then I got smarter and found a good doctor. One whose first name wasn't "LT" I've got myofascial pain with a touch of fibro on the side, mostly in my neck & shoulders. I've also got the ankle from hell, but that's another story. One of the best things for me is massage or PT. I was pretty good about going every month and got off a schedule for the last couple years b/c of the ankle. I started back last week. Sucked it up & got the 6 session package so I'd go.

    Personally, I take drugs. Usually limit to NSAIDs & muscle relaxers, but do have narcotics around (ankle). When the knots get bad I get trigger point injections. I don't see any point in suffering just for the sake of toughing it out. If an Aleve (or 6) will make my life better, I'm taking it. I haven't seen any medals being handed out for hanging on the cross when alternatives are available.

    Another thing - a tennis ball can work wonders on back spasms. Hurts like hell sometimes to do it, but feels better afterward.

    for the other Aleve fans - there is a prescription, time release, buffered version, Naprelan, that is MUCH easier on the stomach, although not on the wallet. At least they generally have coupons.



  11. #11
    Join Date
    Dec. 29, 2012
    Location
    La La Land
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    478

    Default

    I dont even remember my life before the pain, its has been that long. I guess I would have to say the biggie for me is to not over do it. That is tough because I am a workaholic. But I have learned when you do over do it to medicate as soon as you realize oh-oh Ive done it again. Because as others have said you have to break the downward spiral. I use as little meds as possible, and try to stay as homeopathic as possible. I find this works the best, due to my massive unpleasant reactions to conventional meds. The thing that works for me the most is my soaker tub, DH installed. It was a suprise christmas present one year. If the sky was the limit I would have an indoor inground salt water pool. The only time I feel no pain is when I am in the water. Which is why durring the summer I am in the swimming pool for hours.



  12. #12
    Join Date
    Feb. 6, 2003
    Location
    NorthEast
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    Default

    Chronic pain so very much sucks. And can suck everything out of you at times too. Sounds like you have a pretty good attitude about it overall...chronic pain *will* get to everyone from time to time. We can manage it, control it and ignore it for ages and then sometimes when it really gets to you it's not so much the actual physical pain as it is the emotional exhaustion of dealing with it. Ways of dealing with it and managing it depends heavily on what's causing it. Mine is managed best with PT, constant and daily. (chronic Lyme) And although my docs are happiest with using PT for pain management, insurance is not. Thankfully it's something you can be taught how to do at home once the major issues are somewhat fixed by the pro therapist and I go back for a couple/few sessions when drastically needed; maybe every 8-12 months. I don't take any pain meds unless absolutely positively needed. Which is really rare since the constant discomfort is ignored...you get used to that. But OP....when you get really bad flare ups, that'll cause the depression/bad feelings/mental exhaustion. Having really severe pain sucks for everyone, but having a severe flare up of pain when pain is a way of life for a person can really drag that person down. That is the time to use the pain meds to help handle that...as much the mental aspect as the physical one. Because once it drags you down emotionally, the physical pain is even worse. I feel for you...have you talked to the doctor about possible PT if that might be applicable to your pain? Redmares...I have myofascial pain too, similar areas. Have you tried using a foam roller? I had never heard of them until an OT day on here ad folks were talking about them. I went out and got one, holy crap do they work! Huge benefit for me, it's a "hurts so good" thing. And you can feel each release, LOVE mine! (sorry for the lack of paragraphs, I don't think this site and Windows 8 mix well)
    You jump in the saddle,
    Hold onto the bridle!
    Jump in the line!
    ...Belefonte



  13. #13
    Join Date
    Apr. 29, 2006
    Location
    Evansville, Wisconsin
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    3,081

    Default

    Chronic pain sucks. You have my sympathy.

    In addition to NSAIDS and gabapentin and joint injections (having my SI joint injected is really helpful for me) and physical therapy, I also take an antidepressant. Although the antidepressant doesn't really lessen the pain, it makes living with it much more bearable. And it helps me feel less guilty about the days I don't accomplish much.
    "In order to really enjoy a dog, one doesn’t merely train him to be semi-human. The point of it is to open oneself to the possibility of becoming part dog."
    -Edward Hoagland



  14. #14
    Join Date
    Aug. 9, 2002
    Location
    Fairfax, VA USA
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    Thanks, everyone! So nice to know that I'm not alone...

    For all of you who say "it drags you down and exhausts you", and sucks all the life and joy right out of you, this is so very true. ezduzit; I hear ya! I always tell my husband that "bending down and lifting to do housework" is just NOT going to happen; if I can get help with those pedestrian tasks, it allows me to "save myself" to do money earning things and things that bring me joy--or at least pleasure. I used to be a happy person, and I think I miss that most of all, every day is a struggle, and I have to "gird my loins" to get through the day. I know there is only a finite amount of functionality left, and I am determined to preserve it for as long as I can. (My students know about my back problems, and step in to help me set fences, bless them!)

    I have had two MRIs, one year apart, and do have a diagnosis: degenerative disk disease and arthritis in my lumbar spine, disk disease and a bulging disk at L5-S1, with some stenosis throughout my lumbar spine. (I also clench my jaw at night when I'm sleeping--have tried EVERYTHING for this: special nightguards developed by a TMJ specialist; hypnosis; acupuncture, Klonapin to try to reduce the vivid dreams which trigger it, neurofeedback, myofascial trigger point therapy IN the mouth--to release the tight and spasming muscles, and now medicinal Botox injections into my head and jaw--which help about 15%. The myofascial stuff works the best--that and trigger point injections. My husband does the "inside the jaw" work with surgical gloves, it takes about 30 minutes "per side" to release the knots, and then I apply moist heat.)

    On to my spine stuff. I have had injections in my S/I and my lumbar facets, and when these stopped providing relief, I got the Radio Frequency injections--have been through two rounds of this, and the "law of diminishing returns" has set in, alas But my butt is permanently numb! (At least I don't have any sciatica or referred pain or numbness. Yet.)

    I have been going regularly to a myofascial trigger point therapist for years (should go weekly, but since she is $100 a pop and not covered by insurance, I can only afford to go once every 3 weeks, though it does help!) I have insanely tight, spasming muscles, and she puts her elbows into my trigger points, which is, in a word, excruciating. For THIS, I do take a Tramadol and a Robaxin, since otherwise I probably wouldn't be able to bear it. I have also had a couple of sessions with a myofascial specialist who stretches the fascia; this was helpful, but she too is "spendy", and of course none of this is covered by insurance!

    I have gone to a chiropractor for about 15 years, on a bi-weekly basis. Oy. This has been quite a chunk of change, in spite of insurance paying for some of it. He has (mostly) helped me--primarily through spinal decompression. They have a Spinal Decompression Machine that is *wonderful*, but not covered by insurance; $60 a treatment (15 minutes), and that doesn't include the adjustment.

    I am now going through P/T, which has actually helped me, but then again, the dreaded "law of diminishing returns" kicks in, and I am getting less benefit from it than I did 3-4 months ago. The diagnosis is "an unstable S/I joint--which is often "out"--and a locked lumbar spine, resulting in extremely tight erector spinae (long back muscles), and my QL--quadratus lumborum (sp?) are always tight and in spasm. I lie on a ball or push my thumbs into them try to break up the knots, but the only way to *truly* access them is with the elbows of Pam, my "Rolfer/torturer" The P/T taught me a bunch of deep core exercises to isolate and recruit the rectus abdominus muscle--and I do them RELIGIOUSLY. Every. Single. Day. She does lumbar oscillations on me (which I also do at home), and this has helped. A bit.

    I have a "Back to Life" machine:

    http://www.getback2life.com/

    I am on this at LEAST twice a day, and find that it does help "open up" my lumbar spine and creates some gentle traction (it was a gift 3 years ago, and I am getting a lot of use out of it--I will no doubt wear it out!)

    I have an inversion table, which I use about 5 times a week.

    My P/T told me that I should *not* be going to the chiro while I'm working with her ("too many cooks in the kitchen"), so I have not been to him for several months (I do the P/T twice a week, fortunately insurance covers it--with a co-pay.)

    I go to the gym and exercise (in addition to my regular activities, and walking) every. single. day. (For 15 years?) I do cardio on the elliptical machine (my feet are shot so I can't run), and stretch ALL of my muscle groups afterward (I do Yoga stretches and specific back stretches; I did Yoga for years so know how to "isolate" the right muscles), and I spend at least 30 minutes a day on this--sometimes more. Stretching is my friend, and I do it throughout the day! I am also doing acupuncture again (with the Dr. who does the trigger points in my head and neck), though I haven't seen any miraculous results. I re-visited neurofeedback a couple of years ago, and this helped a lot!, but again, $50-75 per treatment, 2-3 times a week, couldn't swing it financially. I have an "Alpha Stim" brainwave unit, which is supposed to help with pain and anxiety, I use it from time to time, and it helps a bit. I purchased a TENS unit, and use this several times a week; it helps with minor aches and pains, but can't reach the "deep seated low back stuff", unfortunately

    I have tried Lido patches, Voltaren gel, Capsaicin, etc., none of the topical stuff seems to help much. Right now I'm sitting on my trusty ice pack (have already done the back to life machine, got some good releases , and took some Aleve--which usually takes about 20% of the pain away.) I take muscle relaxants on ocassion, but I am also on Trazadone and Diazapam for sleep issues (hot flashes) and muscle spasms--so I try to "space them out." (My head doctor has done a bunch of tests on me, including a full array of bloodwork--just in case I had low Magnesium or some other "deficiency", but I have an excellent diet and the bloodwork reflected that. *sigh* Would have been nice if I could have FIXED this with some kind of vitamin!)

    When I was getting less and less pain relief from the injections (and the RF), I went in for a consult with Dr. Friedless, who does regenerative back therapies in the same practice (National Spine and Pain.) I was told that for *my* condition, PRP would probably help--if anything would--but insurance won't cover it, and there are 3 treatments required, each costing $1,100. So alas, no can do. We gave you HOPE! Uh, NO, snatched it away again.

    I sleep on a memory foam (with gel) mattress topper, it is a DREAM of relief--at least at night. (My pillows are also memory foam because of my neck issues, and I sleep with a large bolster between my knees if I'm on my side, and switch is to "under my knees" when on my back.)

    Honestly, is there ANYTHING else I can do? Trying to keep myself functional (by doing all of the above) has become a part-time job, in addition to my other two part-time jobs. I try to remain optimistic, but it becomes more difficult to keep my spirits up when I have more than a few "bad pain days" in a row.

    ETA: I have two back braces: a Serola (S/I) belt, and a medical back brace--which WAS paid for by insurance (thank god for small favors!) They help a bit, though I'm not supposed to wear the back brace for more than 2 hours straight--and it *is* cumbersome and restrictive. And hot!
    Last edited by Dr. Doolittle; May. 27, 2013 at 11:40 AM.
    "Hope is a good thing, maybe the best of things, and no good thing ever dies."

    "It's supposed to be hard...the hard is what makes it great!" (Jimmy Dugan, "A League of Their Own")



  15. #15
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    Apr. 3, 2006
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    Spooner, WI
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    I've done many on your list. The muscle spasms are what kill me. I had years of lower back issues by age 40 I could barely walk, this was helped by my chiro. Now I have 3 bulging discs in my neck after 3 years with same chiro no improvement.

    I've been doing PT on and off for 3 years now. We have started at the very beginning and discovered that my nerves are short in my lower half. Probably born. SO I'm doing the absolutely most remedial stretching to stretch the muscles as well as the nerves. Mostly my hamstrings and calves. It is THE most painful process but it is helping.

    I had begun to curl into a C and was horrified when I realized that I COULD NOT even stand up straight or even lay down flat. It wasn't because of pain but because everything (muscles, tendons, ligaments, nerves) had shortened. It really scared me.



  16. #16
    Join Date
    Dec. 6, 2012
    Posts
    97

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    Try the Back on Track products, I just got a brace for my funky ankle and I've found some real benefits to using it. Its not so much of a 'support' brace, but the healing properties of the brace are really helping me.



  17. #17
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    Jan. 24, 2000
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    Out of the loop
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    Quote Originally Posted by Dr. Doolittle View Post
    I have had two MRIs, one year apart, and do have a diagnosis: degenerative disk disease and arthritis in my lumbar spine, disk disease and a bulging disk at L5-S1, with some stenosis throughout my lumbar spine.
    First, I'm sorry that you are having so much pain. It is a soul-sucker to have chronic pain.

    Second, it's a real shame that our dumb insurance industry won't recognize that there are many complementary therapies that, even though they look pricey at first glance, could overall save companies money relative to payouts for covered surgeries, recoveries, PT, etc. for some patients.

    That aside, one of my clients with similar issues reports that working with an Alexander practitioner combined with acupunture has really made huge improvements in her daily pain levels. She has bad GI reactions to NSAIDs and so, understandably, tries to avoid them, if possible. The nifty thing about the acupuncture is that you/your SO can be taught comparable acupressure points that can be stimulated with fingertips to help replicate and/or stretch the effects from the acupuncture. Also, many good acupuncturists can also recommend dietary and movement changes that may help your issues-of-the-moment.

    My client also works with a local Balimo-certified instructor, who apparently really complements the Alexander work but is targetted specifically at riding and riding-related activities. She has to make many concessions to her weaknesses, including avoiding some activities and re-training her body to do others in a different way, but it sounds like you already are working in that direction anyway.

    I'll also push for the myofascial work, as much as you can afford (again, dumb insurance!!). I know it helps me a lot (though I regularly threaten bodily harm to my therapist while in the midst of a session ), and many of my equine clients have dramatic results after some MFR work.
    Equinox Equine Massage

    In the depth of winter, I finally learned that there was in me invincible summer.
    -Albert Camus



  18. #18
    Join Date
    Aug. 9, 2002
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    Fairfax, VA USA
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    Quote Originally Posted by coloredhorse View Post
    First, I'm sorry that you are having so much pain. It is a soul-sucker to have chronic pain.

    Second, it's a real shame that our dumb insurance industry won't recognize that there are many complementary therapies that, even though they look pricey at first glance, could overall save companies money relative to payouts for covered surgeries, recoveries, PT, etc. for some patients.

    That aside, one of my clients with similar issues reports that working with an Alexander practitioner combined with acupunture has really made huge improvements in her daily pain levels. She has bad GI reactions to NSAIDs and so, understandably, tries to avoid them, if possible. The nifty thing about the acupuncture is that you/your SO can be taught comparable acupressure points that can be stimulated with fingertips to help replicate and/or stretch the effects from the acupuncture. Also, many good acupuncturists can also recommend dietary and movement changes that may help your issues-of-the-moment.

    My client also works with a local Balimo-certified instructor, who apparently really complements the Alexander work but is targetted specifically at riding and riding-related activities. She has to make many concessions to her weaknesses, including avoiding some activities and re-training her body to do others in a different way, but it sounds like you already are working in that direction anyway.

    I'll also push for the myofascial work, as much as you can afford (again, dumb insurance!!). I know it helps me a lot (though I regularly threaten bodily harm to my therapist while in the midst of a session ), and many of my equine clients have dramatic results after some MFR work.
    Thanks, coloredhorse--and boy, I completely agree about the whole short-sighted insurance situation

    I have considered trying out the Alexander Technique (do you know of any practitioners in my neck of the woods?), there is just *already* so much money going towards "not covered by insurance" therapies--not to mention steep co-pays with our new insurance!--that I don't know how much more out of pocket I can hemorrhage...

    I am actually getting acupuncture from one of my Docs, it has helped a little (have had two sessions), but it's hard to tell; nothing seems to provide any lasting relief! Maybe a bullet in my brain!
    "Hope is a good thing, maybe the best of things, and no good thing ever dies."

    "It's supposed to be hard...the hard is what makes it great!" (Jimmy Dugan, "A League of Their Own")



  19. #19
    Join Date
    Nov. 2, 2006
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    Maine
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    I have both fibromyalgia and RA. Swimming is critical to me being able to move. I also see both my osteopath and massage therapist regularly



  20. #20
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    Oct. 28, 2007
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    Virginia
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    Have you tried an anti-inflammatory diet?



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