Beginners and Beyond

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Any other runners with fibromyalgia or similar conditions? Newly diagnosed and looking for advice. (Read 105 times)

Learningdaily


Fibromyalgia Fighter

    So after feeling miserable for months and not doing more than 15 miles in January and 6 miles in February, I was told today why I feel so awful. I'm going to work really hard at getting back into running, even if i really have to scale back the miles. It will be a balancing act, I know, but I'm looking for someone to tell me about their experience and what worked for them so I have some ideas to start playing with.

     

    I'm all ears..........

    Relentless forward progress

    redrum


    Caretaker/Overlook Hotel

      Just curious as to what your symptoms are exactly?

       

      Doc will know better than I, of course, but here's some good reading and I always like reading the comments below the article on pages like this as those are usually folks dealing with the real deal and putting out info you might otherwise pay a panel of people (or doctors) to learn or even just hear about......

       

      http://www.oprah.com/health/Dr-Oz-Treatments-for-Fibromyalgia

       

      I do think you can work back in.  Your determinant attitude is a great foot forward.

       Randy

      Better I Leave


        So after feeling miserable for months and not doing more than 15 miles in January and 6 miles in February, I was told today why I feel so awful. I'm going to work really hard at getting back into running, even if i really have to scale back the miles. It will be a balancing act, I know, but I'm looking for someone to tell me about their experience and what worked for them so I have some ideas to start playing with.

         

        I'm all ears..........

         

        My wife and I have helped a few folks with fibromyalgia. Some strains of cannabis are ideally suited to curb the pain and allow those who suffer from it lead a relatively normal life. You will never get this advice from any mainstream physician of course..

        Learningdaily


        Fibromyalgia Fighter

          Redrum - constant body aches that fluctuate in severity but never go away, headaches, severe fatigue, random lightheadedness, low grade temp, occasional nausea, sleep disruption....I basically feel like I have a mild to moderate case of influenza every damn day.

           

          PineGroveDave - I don't think I'm that desperate yet, but I said I was all ears, so thanks, lol!

          Relentless forward progress

          Buelligan


             

            My wife and I have helped a few folks with fibromyalgia. Some strains of cannabis are ideally suited to curb the pain and allow those who suffer from it lead a relatively normal life. You will never get this advice from any mainstream physician of course..

             

            I never heard of this ailment until recently.  Both the people I know that suffer from it are women and niether of them have ever smoked marijuana.  I don't have any pothead friends with this unfortunate condition.

            StepbyStep-SH


              I think the "evidence," if there is any, is purely anecdotal, but because I am on a lot of websites for gluten-free eating (I am a diagnosed celiac), there is a lot of discussion about eliminating gluten, sometimes also dairy, soy and corn, for fibromyalgia, MS, and a number of other auto-immune diseases. It is a big step to take, because from what I've read, true relief requires elimination, not reduction. (It definitely requires complete elimination for those who have actual celiac disease.) I'm also not sure what percentage of people with autoimmune disorders who try it actually see results.

               

              I hesitate to recommend gluten-free in some ways, because it is the new big trend in eating, but if there might be true results, it may be worth a few weeks of an elimination diet.

               

              I have also read that things like artificial sweeteners can increase or trigger symptoms in those with autoimmune disorders. Again, anecdotal - not research-based.

               

              Good luck finding something workable, Pam!

              20,000 miles behind me, the world still to see.


              Hip Redux

                I think the "evidence," if there is any, is purely anecdotal, but because I am on a lot of websites for gluten-free eating (I am a diagnosed celiac), there is a lot of discussion about eliminating gluten, sometimes also dairy, soy and corn, for fibromyalgia, MS, and a number of other auto-immune diseases. It is a big step to take, because from what I've read, true relief requires elimination, not reduction. (It definitely requires complete elimination for those who have actual celiac disease.) I'm also not sure what percentage of people with autoimmune disorders who try it actually see results.

                 

                I hesitate to recommend gluten-free in some ways, because it is the new big trend in eating, but if there might be true results, it may be worth a few weeks of an elimination diet.

                 

                I have also read that things like artificial sweeteners can increase or trigger symptoms in those with autoimmune disorders. Again, anecdotal - not research-based.

                 

                Good luck finding something workable, Pam!

                 

                +1

                 

                I was just going to suggest this also.   It doesn't work for all but when it does work, it's a life-changer.  It's at least worth trying.  (here is a recent review article: http://www.mdpi.com/2072-6643/5/3/771)

                 

                There is also a more strict "autoimmune protocol" diet that eliminates a bunch of foods in addition to gluten that have been shown to aggrevate immune responses.  I wouldn't necessarily suggest that right off the bat because it is terribly restrictive, but if you find that GF helps, that may be the next experiment.

                 

                I am also gluten-free by necessity, feel free to reach out if want to try it and need help navigating.

                 

                RunswithBeer


                  Get tested for Lyme.

                  Better I Leave


                     

                      I don't have any pothead friends with this unfortunate condition.

                     

                    At the age of 53, having not partook since I was 19 prior to me entering the US Army to serve my country, what is your definition of "pothead"?

                    I am a supporter of the legalization of MMJ and a caregiver for those with serious ailments....not "potheads".

                    runTDC


                      I was diagnosed with M.S. back in 2006.  Not the same disease, but autoimmune none the less.  I'd say that diet, exercise, and attitude are huge in symptom management.  I know it's hard, but now you know what you are dealing with and can move forward.  I personally feel that exercise can be the best medicine when pain and numbness act up.

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

                      Teresa

                      Aug—Double Dipsea

                      Oct 9–R2R Grand Canyon, baby!

                       

                      2024 goals- Run trails, race a few, get a little faster, gain some endurance, enjoy life…😊

                      MJ5


                      Chief Unicorn Officer

                        Get tested for Lyme.

                         

                        Oof. I got Lyme in 2008 and it was ROTTEN. If you suspect this at all, get tested early and be sure to be on antibiotics long enough. I went months before actually getting tested and once I was on antibiotics I don't believe it was for long enough. I now have awful headaches, neck stiffness, and forgetfulness I never had before.

                        Mile 5:49 - 5K 19:58 - 10K 43:06 - HM 1:36:54

                        Learningdaily


                        Fibromyalgia Fighter

                          Shari and Oski - Thanks for the dietary suggestions.  My rheumatologist said that since I don't have any GI symptoms, radically changing my diet may not benefit me. It's definitely something to keep in mind. For now, I'm going to focus more on "clean" eating rather than cutting things out entirely.

                           

                          I really don't think it's Lyme.  After all, I spent most of last summer in my house keeping my fractured wrist elevated.

                           

                          runTDC - How did you find a balance between rest and exercise?  Exercise is supposed to help fibro, but doing too much can cause a flare. Was it just trial and error?

                          Relentless forward progress

                          RunswithBeer


                            The reason, that I said get tested for Lyme is that someone close to me was diagnosed with Fibromyalgia and was treated for years with meds and acupuncture all to no avail. The meds were horrible. Later it was found that she had Lyme. 1 month of antibiotics and done. Fibro still there. A couple years later, Lyme again. This time antibiotics for 6 months. This "seems" to have knocked out the Lyme and the Fibro symptoms.

                             

                            After doing research on Fibro and Lyme, there is much belief that Fibro and CFS are just symptoms of Lyme.

                             

                            Western blot is just a blood test. Not always accurate but a good place to start.

                             

                            These illnesses can be very debilitating and can ruin your quality of life, if you allow it. They caused many problems in my family.

                             

                            Get tested.


                            Hip Redux

                              Shari and Oski - Thanks for the dietary suggestions.  My rheumatologist said that since I don't have any GI symptoms, radically changing my diet may not benefit me. It's definitely something to keep in mind. For now, I'm going to focus more on "clean" eating rather than cutting things out entirely.

                               

                               

                              I understand what you're saying - but GI symptoms weren't the reason I looked to my diet either.  I actually was extremely fatigued and constantly getting headaches and when my doctor had no real solutions, my friend suggested I try an elimination diet.

                               

                              StepbyStep-SH


                                Shari and Oski - Thanks for the dietary suggestions.  My rheumatologist said that since I don't have any GI symptoms, radically changing my diet may not benefit me. It's definitely something to keep in mind. For now, I'm going to focus more on "clean" eating rather than cutting things out entirely.

                                 

                                I really don't think it's Lyme.  After all, I spent most of last summer in my house keeping my fractured wrist elevated.

                                 

                                runTDC - How did you find a balance between rest and exercise?  Exercise is supposed to help fibro, but doing too much can cause a flare. Was it just trial and error?

                                 

                                I actually didn't have any noticeable GI symptoms, even though both the blood test and an endoscopy confirmed celiac disease. My "symptom" for celiac was persistent anemia; looking back I did have some odd digestive things, but nothing that caused discomfort or concern.

                                20,000 miles behind me, the world still to see.

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