My Experience with FIBROMYALGIA.
My Symptoms (past and present):
Daily Widespread Pain including; Foot Pain, Ankle Pain, Wrist Pain, Finger Pain, Knee Pain, Back Pain, Neck Pain, Shoulder Pain, Chest Pain. Chronic Headaches, Insomnia, Fatigue, Depression, Anxiety, Sensitivity to Weather and Temperature changes, Morning Stiffness, PMS, TMJ Symptoms, Drug Sensitivities
Many times I like to describe the aches and pains of fibromyalgia in terms that "healthy" people may understand. You basically feel as if you had the flu every single day in varying degrees. On a good day, the pain can be minimal - on a bad day, it can feel as if you've been run over by an 18-Wheeler.
I can't remember a time when I didn't have symptoms of fibromyalgia. I do remember the frustration I felt, even at a very young age, at not knowing what was causing the pain and being blamed for the pain. I remember being told "it's in your head", "buck up", "stop whining", "you need to exercise more", "you're overweight, that's why you hurt", and other various hurtful comments. None of them made sense to me, even though they seemed to make sense to others.
I had very bad foot pain as a child. I couldn't stand or walk for long periods of time. After years of what was perceived by my certain family members as whining, I was taken to a podiatrist (foot doctor). He examined my feet and told me I had somewhat flat arches. He proceeded to make molds of my feet and create orthodic devices to be worn inside my shoes. These orthodic devices caused even more pain. Nothing I did seemed to alleviate the pain.
As I grew older, the pain spread to more parts of my body...my wrists, my elbows, my ankles, my knees, my lower back, my neck. As each new pain surfaced, I would trot back to the doctor. Each time I was diagnosed with "muscle spasm" or "muscle strain". I would be prescribed an anti-inflammatory, maybe an anti-spasmodic, and then sent home. However, the pain wouldn't go away.
Years went on, and throughout these years I underwent many different tests to figure out what was causing me this pain. I had ultrasounds, x-rays, physical therapy, MRI's, etc. Nothing made sense. My frustration mounted.
One day, I was at a support group meeting for my vulvodynia/vulvar vestibulitis. One of the ladies there had fibromyalgia. She started telling me some of her symptoms. I couldn't believe my ears. She had all the same symptoms as me. I went home that night and looked up "fibromyalgia" on the internet. I found more and more logical signs pointing towards fibro. I mentioned it to my gynecologist who referred me to a rhuematologist.
Finally, I got an answer to all the years of pain and frustration. I was diagnosed with fibromyalgia in spring of 1998. At first I felt relief, but then the anger and sadness set in.
I had gone through so much....unnecessary medical procedures, guilt, shame, etc. I was angry (and still am) that nobody figured it out before. My trust in the medical profession will forever be hampered by this.
Currently, I take cyclobenzaprine (Flexeril - a muscle relaxer) when I'm in excruciating pain, I take 800 mg of ibuprofen 4-5x daily, my husband does some massage on me, I use heating pads and warm baths. I'm hesitant to rely on narcotic pain relievers for relief. However, sometimes I have to take a vicodin for intense pain.
I am trying hard to manage my fibromyalgia. I recently began my Fibromyalgia treatment program at Abbott Northwestern Hospital in Minneapolis. Please click here for my recent experience.
I recently attended a fibromyalgia conference co-sponsored by the Courage Center and the Arthritis Foundation. It was held in St. Paul, Minnesota. The conference was very informative - and I'm still allowing the information to soak in. I plan on posting some of the highlights and tidbits I learned soon. The biggest thrill, though, was definitely being able to sit at Jenny Fransen's (author of The Fibromyalgia Help Book") table at lunch and talk with her. I was dismayed to hear that she very rarely receives input about her wonderful book. She says that all correspondance goes to her publisher. May I suggest, if you have benefitted from Jenny's book as I did that you write her c/o Abbott Northwestern Hospital, 800 E. 28th St, Minneapolis, MN 55407.