Chronic Pain Diagnosis :: Fibromyalgia

I was recently diagnosed with fibromyalgia.

For nearly 8 years I've struggled with unexplainable aches and pains, sometimes unbearable. I can remember when it all started. I was recovering from shoulder surgery, had just asked for a divorce and was dealing with a massive lice infestation.  I woke up one morning in agony, completely unable to move my neck. A few weeks later my back gave out.  Stress was beginning to take its toll. Over the next couple of years I would see a half dozen doctors who had me believe that there wasn't anything really wrong with me.  Sure there were signs of degeneration in my spine, and I underwent Xray, MRIs and injections.  I was prescribed a handful of meds, most of them non-effective, save for one that I would eventually have to stop because it was no longer being covered by my insurance.

For many years I ignored my symptoms as best as I could, taking a couple of NSAIDs when things got really bad. After all, there was nothing wrong with me.

Last summer, after a long day in the city, after a couple of hours on my feet I began to experience almost unbearable burning pain up and down my legs.  The next morning I could barely move and called the doctor.  After listening to my symptoms the doctor on hand (who was not my own) sent me over to the imaging center for a brain scan.  Outfitted in a large white mask straight out of Star Wars I was slid into a long tube where knocking and jackhammering noises went on for what seemed like hours. The images were studied and I was fortunate to avoid an MS diagnosis.  But the symptoms persisted.  Convinced that this was indeed not in my head, I joined my former internist's new concierge practice.

Nearly 10 years and a dozen doctors later, a rheumatologist diagnosed me with fibromyalgia which is something I had suspected for a while.  This, compounded by 2 herniated discs, degenerative disc disease and osteoarthritis, will not stop me dead in my tracks, though it has slowed me down some. I am now in the care of doctors I trust and together we are working to find methods to keep the pain and symptoms at bay. Needless to say, you need to self advocate if no one else is there to so on your behalf. Fibromyalgia, as I am learning, doesn't look the same on everyone. If you suspect that you might suffer from it, my best advice is to find a rheumatologist who specializes in it.

My greatest complaint, even on those days I feel particularly well, is my exhaustion. I nap when I am able, and I have my work schedule set accordingly. It is necessary, an absolute must. I now take a cocktail of pills and vitamins every night before bed. I hate it but I am hoping with a few tweaks it will help.

I've always found exercise to be my saving grace.

As I endured the worst, darkest days of my divorce, exercise cleared my head. If I couldn't get to the gym I could always toss on a pair of running shoes, and grab my music. Exercise is still a priority, and I have been known to shift my schedule to accommodate my workouts, which I do on average 6 times a week. Because of my spine I can no longer do anything high impact. I spin several times a week and to that I add Barre and Pilates. Over the past year and a half I've become so much stronger and so much more flexible. I'm often asked how I stay motivated. It really doesn't take much, in fact I'm in pain and feel awful when I can't get my work out in. It's like therapy, but cheaper!

Stress is one of the greatest aggravators and exercise, when vigorous, is a stressor. As I am determined to be faster and stronger this can backfire and lead to exhaustion. What used to energise me now often depletes me.

Unfortunately nighttime sleep is not my friend. I have not slept through the night since my symptoms first started... this was around the time I had shoulder surgery and initiated my divorce. Add hormonal changes, night sweats, migraines, neck and back pain and Restless Leg Syndrome... I've tried sleep aids, melatonin, muscle relaxants, and herbal remedies. I've listened to books on tape, podcasts and apps for meditation and relaxation, and listened to music. I've cut alcohol and caffeine. I've truly tried just about everything. The diagnosis is a good start, but to quote Robert Frost, I have miles to go before I sleep.

I'd love to hear from you - especially if you suffer from chronic and or nerve pain - about any advice you might have for coping, keeping active and living fully.