This is my first post on this web site. I have had Fibromyalgia since my early 20's, and though very athletic, suffered severe and increasing body wide pain especially after active days of college sports and equestrian competition days. I am now 70. I continued to try to be active all my life as a horseback rider, riding teacher, and competitor in upper level dressage competition, managed our farm and raised two active children but have faced serious struggle since my late 30's. At 40 I went to a Rheumatologist who diagnosed me almost immediately as having severe Fibromyalgia. Then, I was referred to a large hospital pain clinic where, after trying a number of different therapies, was advised to go on pain medication therapy. This therapy gave me back much of the life I had almost lost and for about 16 years, and with careful management, was able to reclaim much of my life though at the cost of almost continual exhaustion. As time progressed, so did the myriad and troublesome symptoms, so many that I have become exhausted trying to keep them all under some reasonable control. In the end I have lost all ability to function in any reasonable way. The awesome weight of such severe illness and pain has also left me in emotional chaos . After years of searching and researching for some relief and understanding of my terrible condition and trying many, many different therapies with little help and no improvement, I found a "Functional Medicine Doctor" who seems to finally understand what I am experiencing. He believes that Fibromyalgia is not a primary disease in itself but a symptom of other viral and biologic infections and diseases such as Lyme, toxin overload, immune dysfunction due to exhaustion of the immune functions, and much more. He believes these type of diseases are like an onion that must be peeled back one by one and as they are defeated, the FM symptoms will abate. One thing I have found that helps is summer weather; I think many of us are improved in the summer months. So, we will be moving shortly to a much warmer climate. Last fall, we spend a month in the warm weather where I experienced noticeable improvement, then terrible reversal when we returned home to winter weather and storms. I plan to keep working with this Functional Medicine doctor as well as a wonderful and understanding GP who helps me search for improvement who both support our move to a warmer more stable climate. I have had many times when I felt that life was just to hard to keep going, and have seriously considered ending my struggles, but because I have a kind, loyal, dedicated and very loving spouse who wants to spend his life with me, even still after all the heartbreak my illness has brought to our lives. Our family has all deserted us, as people often do when facing an illness they don't understand, and we have few friends, and little ability to engage in life but for the sake of our relationship, we struggle on. I wish I could be more encouraging to you all, but I do recommend that before you spend your life searching for help, take advantage of the new medical specialty of "Functional Medicine" and save yourselves years of agony and frustration. Please understand that no one, not most doctors and especially not your family and friends, have any concept of the kind of overwhelming pain and illness you are experiencing and probably never will.
Linda, I agree with everything you said and am thankful for the information about Functional Medicine. I looked it up briefly. It sounds interesting. When I see my doctor on Wednesday, I will mention it to her. As an update, I went to the clinic and got a copy of my CT. As I expected it was basically negative, as far as a non-contrast CT, except for three tiny hernias. Nothing that should bother me like I was bothered. But that pain has gone away and now I have different pain. Always changing.
Anyway, I to feel better when it is warmer out. I live in CA. It gets cold in the winter and I do feel more pain. My mother was the same way. I think she had undiagnosed Fibromyalgia. It sounds like you have really been through it.
and cannot imagine I send you my fondest wishes and encouragement to try to live as much life as you can and to keep searching for answers. Some day, this will all be better understood and perhaps there is even hope for reasonable acknowledgement of our suffering and even treatment.