Pain. So much pain. It coursed through my body from my legs to my hips to my back. It ached through my hands. It ran up my arm. My hand would go numb. I blamed it on arthritis. It would flare up and I would pop ibuprophin and try to ignore it. Then there was the blurry vision, the dizziness, the blindingly severe fatigue. I was always so tired. All the time. It got worse all the time. The worse it got, the worse EVERYTHING got. No one could seem to tell me why.
It’s been years of doctors and medications and diets and internet searches and misdiagnoses. I have had tests. I have paid co pays. I have had electrodes and IVs and been slid into giant tube magnets and monitors. Surgeries. Bills. Hospitals. Treatment centers. All along, no one seemed to be able to tell me for sure what was wrong with me. I have seen so many doctors. I have spent so much money. I have been told it’s all in my head. I am just so tired. So. Incredibly. Tired.
Now, here I am at 35 years old. And I have Fibromyalgia.
It was not easy getting here. It was not easy getting diagnosed. There is no test for Fibromyalgia diagnosis. It comes from eliminating other diagnosis. I had to go from specialist to specialist. I saw three neurologists, an ear, nose and throat doctor, two orthopedic surgeons, and was given several diagnosis that never panned out. Insomnia, Stress, Tendonitis, Pinched Nerves, Labrynthitis, etc. I was told I might have MS, and then it was ruled out. I was told I was suffering from silent migraines.
I finally went to my primary care physician with my fiancé. I was almost in tears. He spoke for me most of the time. My mind had become so foggy I could barely remember my own symptoms. My doctor sent me for immediate blood work and sent me to a Rheumatologist. When the results came in, I took all my very normal blood work with me to the Rheumatologist. He checked my sore joints. He pushed on my trigger spots. He gave me a full once over. He looked over my blood work. He checked over my health history.
I finally was given a diagnosis. I have Fibromyalgia.
Not only was I told what I had, I was told how it worked. Why I felt the way I did. The exhaustion. The pain. Not only that, we discussed a treatment plan. It was going to be trial and error for a while. I was already on two of the medications used to treat the disorder…Topamax (for my migraines) and Cymbalta (for my depression) so my doctor increased my dosage. Now we wait and see if this helps.
I will also start low impact exercise. Starting slow. Easing in. And rest. It’s a relief to know what is going on with me finally after so many years of not knowing. But now I face a new adversary.
The rest of the word…
When I made a post to Facebook recently about my diagnosis, I received a few responses telling me I would need to immediately go gluten free. I was amused seeing as this was nowhere in my Rheumatologists instructions. He did tell me I should be walking ever day. That I should be starting slow but doing some exercise. That I should be getting adequate rest, reducing my stress, and that we would be starting a trial and error medication plan. He said nothing about my white flour intake. For most of my struggle in finding a diagnosis, I have been told a million things by a million friends about my diet, my lifestyle, my spirituality and how it all impacts my health. To some degree, I believe that to be true. I am a Buddhist. I meditate when I can. I do practice light yoga. My Rheumatologist was actually impressed with how flexible my joints were and remarked that my elbows bend backwards. He told me I was uncommonly flexible. I took much pride in that. I have removed sugar from my diet. I have removed carbs. I have joined Weight Watchers. I have gone very low fat. I have done all of these things suggested to me now in the past in an attempt to alleviate my symptoms when I had no idea what was causing them. To hear these suggestions now from people when I finally DO have a diagnosis is, to be honest, frustrating.
In addition, my mother in law (soon-to-be) was diagnosed with Fibromyalgia many years ago when the diagnosis was even less respected. She has dealt with the experimentation of treatments and medications. She has dealt with the stigmas more than I have. She has lost weight, done diets, been there, done that. She has also spent decades working in the medical system as a career. To say that I know someone who knows better is an understatement.
I received a message a short time later from a dear friend of mine who has been living with MS for most of her life. She is full of piss and vinegar, I adore her, and I have held her as a bit of an inspiration through my struggles in finding a diagnosis. She welcomed me to the club of people who will be told forever that our conditions can be cured with things like the elimination of gluten, the paleo diet, Pilates, chiropractors, and yoga. I laughed. I laughed a lot. She said our club sucks, but welcome. We struggle with our diseases and disorders. We have doctors who went to decades of medical schools. They are well respected professionals. We read medical texts. We take care of our bodies and our souls. We know what to do.
So this is Fibromyalgia. I am going to go take a nap.
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