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Fibromyalgia??

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  • #41
    My Dr thinks I have Fibromyalgia. Symptoms started with the onset of menapause. What a delightful combination of symptoms between the two maladies!

    All my test were negative so Fibro is next best guess. The book I read "Figuring Out Fibromyalgia" by Ginevra Liptan, MD was very good I would recommend it as a good place to start. It is written by a Dr that made through med school suffering from Fibro.

    I tried Cymbalta but I could not stand the constant nausea I had with it. I just started taking amitriptyline and so far it is helping with minor side effects. I still have some pain but that constant feeling like I have the flu is gone so I can function and live again. I am hoping that once I am up to full dosage I will have even more relief.

    How is everyone managing equestrian activities? I had to stop mounting from the ground; my shoulder could not take it. I am thinking I might have to get a lighter saddle eventually as I am riding in a very heavy western saddle now and sometimes I feel too tired to even tack up. I don't ride as much either and I am wondering if it will get better or is this the beginning of the end.
    No hour of life is wasted that is spent in the saddle. ~Winston Churchill

    Comment


    • #42
      Stay active MSP...it's only the beginning of the end if you make it so.
      Chronic pain of any origin is exhausting and can be mood altering. It's not easy at first...but don't let it change you.

      Fibro diagnosed along with menopause is very common. The huge fluctuations in hormones often cause widespread pain. And depression.
      This could be just your body's reaction to the changes in your body/hormones. And it can go away over time too.
      Watch for depression...although it's a Catch 22 situation since chronic pain can cause depression and also depression can cause chronic pain.

      But keep on keeping on...do what you enjoy. Fibro and menopause both tend to react favorably to becoming/staying physically active. Helps with hormone surges and drops, helps with fibro-nerves pinging you for no damned good reason, helps with depression. Cut out junk foods too if possible...those sap energy.

      But the combo of fibro and menopause is really very common. The upside of the double whammy of those two is: menopause onset caused it and once post menopausal for a while normally relieves it. And to keep it under control during it...fight it. By ignoring it. Pretend you don't have it..stay active and do things you enjoy. It fights off depression and soreness and all the "bonus" crap of menopause like bone loss and slowed metabolism/weight gain, etc.

      (and memory loss...always fun standing in one spot for 10 minutes trying to remember where you were just going...multiple times per day, LOL!)
      You jump in the saddle,
      Hold onto the bridle!
      Jump in the line!
      ...Belefonte

      Comment


      • #43
        That would be something if it all went away some day! With all the animals and kids and job I have no options but to keep going!

        I tend to walk around until I remember what I was going to do before I forgot, that way I look busy not mindless!
        No hour of life is wasted that is spent in the saddle. ~Winston Churchill

        Comment


        • #44
          I hate to sound like a constant refrain, but are you sure you don't have Lyme disease? And remember, the first line test is not very good...lots of false negatives.

          Comment


          • #45
            Originally posted by LauraKY View Post
            I hate to sound like a constant refrain, but are you sure you don't have Lyme disease? And remember, the first line test is not very good...lots of false negatives.
            I am happy to have found this thread.... I too have been diagnosed with Fibro. For years I have been changing my diet little by little to try to figure out what this horrible thing that is going on with my body.

            I like the OP am active and I love to be active and this thing kicks my butt and its frustrating.

            I stopped eating all meats four years ago and that has helped with the sore joints 99.9%. I still have the occasional muscle soreness..

            High fructose corn syrup gives me migraines. I needed Zinc and Magnesium supplements I got body odor when I stopped eating meat. Drs say I am boarder line anemic so I have been told to take iron. I also take Vit B12 - I need energy.

            So far that is all I found that helps. Oh and reducing stress for sure!

            I often wonder about Lymes disease.. can this be a problem in any area of the country? I thought it was more prone in the East but not really sure.
            Live in the sunshine.
            Swim in the sea.
            Drink the wild air.

            Comment


            • #46
              I was diagnosed with Fibro back in the early/mid 90's when it was "new" to most doctors. I was in my 20s.
              I have had to make adjustments and changes to my routine and my diet over the years. I became vegetarian when I was 18, so meat was not an issue when I was diagnosed (but maybe I had fibro back then, too??). I test negative for lyme (so far). I was spayed in my early 30s, so that helped in a huge, huge way.

              One of the main things I was told was to not become sedentary. I actually feel better if I am walking than sitting or standing. I have other bone related troubles, too, so I am not sure what came first, the arthritis or the fibro.
              The fatigue is horrible and I always have pain.
              Stress is the worst and tends to throw my body totally out of whack, causing other physical problems like hyperthyroid.

              I have learned to laugh at myself when I forget things.

              Find what works for you and make adjustments as needed.
              Proud to have two Takaupa Gold line POAs!
              Takaupas Top Gold
              Gifts Black Gold Knight

              Comment


              • #47
                Originally posted by Lori View Post

                One of the main things I was told was to not become sedentary. I actually feel better if I am walking than sitting or standing. I have other bone related troubles, too, so I am not sure what came first, the arthritis or the fibro.
                The fatigue is horrible and I always have pain.
                Stress is the worst and tends to throw my body totally out of whack, causing other physical problems like hyperthyroid.

                I have learned to laugh at myself when I forget things.

                Find what works for you and make adjustments as needed.
                I almost thought I typed this....

                Except the part missing is pimples at age 47.... which makes me wonder about what others have said about hormonal issues. I am going to check that one out for sure.

                Well now off to go lay my aching body that feels like it just ran a marathon off to bed.
                Live in the sunshine.
                Swim in the sea.
                Drink the wild air.

                Comment


                • #48
                  Originally posted by doublesstable View Post
                  I often wonder about Lymes disease.. can this be a problem in any area of the country? I thought it was more prone in the East but not really sure.
                  Here's a map. Read it and weep...California is right up there. According to the CDC only 10% of Lyme disease cases are reported/

                  http://module.lymediseaseassociation.net/Maps/

                  BTW, fibromyalgia is a constellation of symptoms, not a disease.

                  Here are the symptoms of Lyme disease: http://www.lymediseaseassociation.or...NAL%5B1%5D.pdf

                  Comment


                  • #49
                    Originally posted by LauraKY View Post
                    Here's a map. Read it and weep...California is right up there. According to the CDC only 10% of Lyme disease cases are reported/

                    http://module.lymediseaseassociation.net/Maps/

                    BTW, fibromyalgia is a constellation of symptoms, not a disease.

                    Here are the symptoms of Lyme disease: http://www.lymediseaseassociation.or...NAL%5B1%5D.pdf
                    Thank you LauraKY - I wasn't sure about Lyme in our area...

                    I always felt the diagnosis of Fibromyalgia is symptoms of various sources like allergies, heat issues, hormone, imbalances of minerals, body over working etc.... and agree it's not a disease.
                    Live in the sunshine.
                    Swim in the sea.
                    Drink the wild air.

                    Comment


                    • #50
                      Originally posted by Derby Lyn Farms View Post
                      I realize fibromyalgia is what it is, and I know there is something underlying. Just have to figure out what that is.
                      This is the big conundrum. Having been to the Mayo Clinic twice and visiting countless doctors {I have a whole litney of other medical problems along with my fibro, and which also tie-in and affect my fibro...} all over the state of WI since I was 15 years old (I am 22 now), we have come to discover that finding a doctor who knows, actually KNOWS, about and how to treat fibromyalgia, is like finding a sparkly, rainbow-colored unicorn.

                      My recommendation to you is to read "From Fatigued to Fantastic!" 3rd Edition by Dr. Jacob Teitelbaum. The protocol in his book helped cure me of my Chronic Fatigue Syndrome after two long years. Besides CFS, he also covers fibromyalgia, brain fog, achiness, etc. [You can also visit his site at http://www.endfatigue.com]

                      I see that you live in MI...I was lucky enough to find a top-notch PT, rheumatologist and a brilliant women's doctor in WI who knows Dr. Teitelbaum and also follows more of a holistic approach to combine with traditional Western medicine. It seems that Eastern European doctors are much more open and receptive to conditions, like fibromyalgia, that are extremely challenging to treat, as they constantly read and educate themselves about the newest studies, medications, etc. Almost every single doctor I've been to, which is an impressive list of 50+ specialists for various medical problems, are very close-minded. If your condition is more "out-of-the-box" and they didn't learn it in medical school, they're not interested.

                      I wish I could recommend some medications for you, however, everyone's bodies respond differently. I have tried nearly every medication that people have listen on this forum, with the exception of Lyrica and Cymbalta, as I am extremely sensitive to medications. Nothing seems to work for me except 1-3 mg of Xanax, which dulls the fibro pain once I get into the 6-9 range.

                      Try to stay as active as possible. I know this might seem absolutely crazy, but it really helps. If you are able, do low-impact exercises like the elliptical, swimming, yoga, tai chi, etc. They key is to do everything in moderation...especially on the days when you are feeling halfway decent, as you tend to go overboard.

                      Having just seen my rheumatologist, she said that out of her 170+ fibro/RA patients, this summer has been absolutely killer due to the high heat, high humidity and dew points. For me, spring and fall are the worse seasons, due to the temperature differences between day and night. The worse temps seem to be in the range of 45-65 degrees. The arctic WI winters also wreak havoc on my fibro and joints overall. Drop in barometric pressure, such as a pending cold front or thunderstorm also really flare up my fibro. I'm more accurate than a weatherman in predicting the weather! ;p

                      On the horse front, the best thing that I found for me is riding a quiet horse who has great self-carriage and doesn't pull at all. That is an absolute god-send that has allowed me to start up/continue riding.

                      I totally commiserate with you. If you ever want any more info, please feel free to PM me. My dad has spent the past 7 years researching these medical problems and taking me to numerous doctors and specialists. I would love to be able to share our knowledge if it would be beneficial to a fellow sufferer.

                      Take care. <3
                      Last edited by huntr_eq_blonde; Aug. 26, 2012, 12:22 AM.

                      Comment


                      • #51
                        Originally posted by imaginique View Post
                        I have no clue what an ANA test is but I just wanted to mention that a friend has been diagnosed with Fibro and treated by several doctors. Formerly she had a doctor who diagnosed her with hormonal issues , and treated them, which got rid of the Fibro symptomes. Unfortunately this doctor died and no other doctor would listen to her when she told them what the problem was and how it was treated. She moved to a new state, found a new doc, and he is treating the hormonal issues, which is making a big difference in the way she feels. She had problems similar to yours. She'd overdo and be down for a couple of days afterward. It might not be your problem but it is worth checking out if you are not getting relief.
                        Unfortunately I have learned what the ANA test is. I was diagnosed with lupus at the end of May. According to my doctors a postitive ANA indicates lupus. That is in addition to a couple of other tests that showed inflammation. I am doing well since going on meds. I hope you find a solution to your problem. I know that not knowing is the worst part.

                        Comment


                        • #52
                          "I tried Cymbalta but I could not stand the constant nausea I had with it. "

                          MSP: Did you start out by taking a full dose? I do wonder why Drs. start everyone with full doses of medicines that you usually need to get adjusted to a bit. I work in medicine, btw. When I get a new medication (minus antibiotics and similar things where you need to get up to speed immediately) I start with a small fraction of the med and give it 2-3 months to get up to full dose. I also take a similarly long time to taper off and stop a medication. I've avoided many, many nauseas this way. Also, it's allowed me to use many great meds that I would have just stopped due to feeling sick from it.

                          I liked Cymbalta the best, actually - most pain relief, good for the mind, easy to take (if - IF - you taper up to it and off of it). Amitriptyline (elavil?) didn't work too well for me. Lyrica was brutal even at a small dose (tapering up dose). Currently taking Wellbutrin (just to change up the naturally painful body chemistry) and that is pretty good.

                          Wishing you all less pain & muscle knots - from another fibro.

                          Comment


                          • #53
                            Originally posted by sonomacounty View Post
                            "I tried Cymbalta but I could not stand the constant nausea I had with it. "

                            MSP: Did you start out by taking a full dose? I do wonder why Drs. start everyone with full doses of medicines that you usually need to get adjusted to a bit. I work in medicine, btw. When I get a new medication (minus antibiotics and similar things where you need to get up to speed immediately) I start with a small fraction of the med and give it 2-3 months to get up to full dose. I also take a similarly long time to taper off and stop a medication. I've avoided many, many nauseas this way. Also, it's allowed me to use many great meds that I would have just stopped due to feeling sick from it.

                            I liked Cymbalta the best, actually - most pain relief, good for the mind, easy to take (if - IF - you taper up to it and off of it). Amitriptyline (elavil?) didn't work too well for me. Lyrica was brutal even at a small dose (tapering up dose). Currently taking Wellbutrin (just to change up the naturally painful body chemistry) and that is pretty good.

                            Wishing you all less pain & muscle knots - from another fibro.
                            I did taper up on my dosage of Cymbalta. I did not like the way I felt on it. Felt like speed! Sorry to say I had to come off the Amitriptyline as well. It raised my blood pressure, it peaked at 170/120! I have it down to around 120/84 and still dropping.

                            Not sure what will be next but so far pain has not returned. I am taking advantage of feeling good and started back at the gym; just using the tread mill and going easy. I can feel the difference in my sleep, my brain just doesn’t shut down and rest. I am guessing it is a matter of time before my symptoms return.
                            No hour of life is wasted that is spent in the saddle. ~Winston Churchill

                            Comment


                            • #54
                              Thanks for responding, MSP. I'm so glad you're feeling better right now !

                              I wonder if, perhaps, you might be able to work any meds on a mini, mini, mini dose (no tapering up, even). Say 1/6 of a normal dose. The slightest amount might change things for the better and not make you feel badly. I'd avoid things that affect the blood pressure, though.

                              Now, I know some say - "Oh, that small won't do anything." Or, "That is not how my Dr. prescribed it." Well, imo, for me - they are not me, and that has worked for me on occasion. Esp., years ago when I was not used to any of these meds.

                              Certainly not telling you what to do, but some ideas for you are maybe a mini (and I mean mini) dose of Wellbutrin regimen (easy to take). For sleep sometimes, I take melatonin (for you, maybe 1/4 or 1/6 of a 1 mg tablet).

                              Oh, I never tell my Drs. about my mini doses - they would probably, sort of, make fun or it, say it won't do anything and then maybe not prescribe it.

                              For pain, I do Ultram (love it) and two tylenol. (I work in medicine, btw.)

                              What a road we have, eh Do feel better, all.

                              Comment


                              • #55
                                I think I should have increased my dosage much slower and plan on doing that with the next meds. I think I am very sensitive to meds and don't require large dosage.

                                I do feel pretty normal right now, waiting for the hammer to come crashing down! Makes me wonder if sleep deprivation is a big source of my pain. I slept the best in my life on the Amitriptyline and notice a world of difference after one dosage of 10 mg.
                                No hour of life is wasted that is spent in the saddle. ~Winston Churchill

                                Comment


                                • #56
                                  "should have increased my dosage much slower"

                                  Could be. Here is how I start any meds. I break apart the tablet or open the capsule and maybe take 1/6 th of it for a week, or 2/3,4 or a few months or whatever. I write it on the calendar. If I feel o.k. with that, in a few weeks, I up it by another 1/6 th or so, then wait a good few weeks or longer before increasing again. I tell myself I don't have to get up to whatever dose the Doctor prescribed. Do I tell the Dr. that? - No, but tough, I know what I can handle. Something is better than nothing, imo, and that is what works for me. As I said before, I (and most people) find Wellbutrin easy to take. That is not a classic fibro med, but I switched off to it, as I had taken Cymbalta for many years and my NP (nurse practitioner) thinks I should switch up every 3-5 yrs. due to it loosing effect due to tolerance.

                                  For sleep, since the Elavil (aka amitriptyline) is not o.k. for you, I'd consider a tiny bit (1/4 of a 1 mg. tablet) of melatonin or half a small mg. Ambien tablet.

                                  I hate this darn disease. I feel sick all the time. Soft hugs to you all.

                                  Comment


                                  • #57
                                    Run - run - run away from stress. I have found what makes me so sick I am in bed for almost a week - STRESS.

                                    I have adjusted my diet and staying active with the horses really help but the stress in my life is sometimes uncontrollable.

                                    My Part time job is killing me. I have to be abused by people and every time I am sick for a week after I deal with this job. It's only twice a month but the week I lose being able to ride, be with my kids and taking care of my responsibilities is just not worth it anymore.

                                    I tell myself not to let these people get to me; but when I go to bed, I am sweating, grinding my teeth and in pain. Sick all day long with pain and headaches.

                                    I must figure out how to get out of this job.
                                    Live in the sunshine.
                                    Swim in the sea.
                                    Drink the wild air.

                                    Comment

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