A Few FMS Myths

1. Fibromyalgia is a "wastebasket" diagnosis, not a real disorder.

Truth: Fibromyalgia patients exhibit different symptoms that are part of a constellation of related syndromes. There are, however, specific diagnostic criteria for Fibromyalgia, and patients exhibit some of the same symptoms.

2. Fibromyalgia patients are just drama queens and complainers; there's nothing really wrong with them, but they expect special treatment.

Truth: Most of us try very hard to function as close to normally as possible. Our bodies simply won't do all the things we want them to.

3. Fibromyalgia patients are simply focusing on what everyone deals with. If they'd stop doing that, they'd be fine.

Truth: There is nothing normal about waking up in pain every day, or having to try to ignore unrelenting pain every minute of the day. If you have constant pain that OTC medications don't help, then you probably should focus on it, and so should your doctor.

4. Fibromyalgia only affects people who are out of shape, eat junk food, or otherwise don't take care of themselves.

Truth: There are patients who were everything from hockey players to avid power-walkers to dancers before this disorder entered their lives aPublish Postnd made any movement painful. Many of us work hard at keeping low-impact workouts, walking, and stretching exercises part of our lives even when it's a struggle to move. Junk food isn't good for anyone, and may exacerbate some symptoms for some patients, but most Fibromyalgia patients aren't living on it any more than the people who accuse them of it are.

Starting up

It's hard for me to start new projects and harder to get the motivation to follow through. I have a busy life, and my body doesn't let me do half the things I want and need to do. Here I'll start... maybe not at the beginning, but some time back.

I was diagnosed with Fibromyalgia in 1998, ten years ago tomorrow. I was a young student, worked after school, did schoolwork all the time, had been very type-A all the way through high school--not having to work for my grades didn't teach me sloppy habits, it gave me time to add all kinds of unnecessary detail and work even harder at learning more than school would teach. I had started to be too ill to work all the time; pain and fatigue had made it impossible for me to even stay awake in class or at basketball practice.

Since then, I've been married, divorced and remarried to a wonderful husband. He's very understanding about pain as a limiting factor, primarily because his body is as messed up as mine. I have a wonderful seven-year-old son. Medically, I've been through:

• becoming allergic to NSAIDs
• serotonin syndrome when a well-meaning doctor put me on Celexa and another antidepressant without taking me off Paxil to try to treat this
  
• stroke-like symptoms (for several months, one side of my body--I think the right--did not respond well and I lacked muscle response even in my face)
• being given Tylenol as my only pain control medication option
  
• being referred to all of these and sent back to the doctor because they either didn't feel I needed the services or, in the case of PT, they were clearly worsening the pain:

1. a chiropractor
2. a physical therapist
3. a counselor

• An EMG and confirmation that I have a lack of motor and sensory nerve response in both elbows
• cervical disc disease
• other nerve compressions and occasional frozen joints that respond only to cortisone injections
• allergies or sensitivities that mean I have to carefully vet my clothes and jewelry (I can only wear a watch outside my clothes) or I end up with hideous breakouts and rashes
  

That's just a taste. My current medical regimen:

• diet/exercise (current exercise is working 8 hours a day on my feet, 2 water aerobics classes a week, plus working outside shoveling snow for 1-3 hours a week, which is aerobic as well)
• lyrica, 100mg 3x/day
• Relacore, 2 capsules 3x/day
• SAM-e, 400mg every morning
• Zyrtec, 10mg every morning
• Synthroid, 150mcg every morning
• singulair, 10mg every morning
• flonase, 1-2 sprays/nostril every morning
• fish oil and a multivitamin
• Tylenol up to 1000mg and Flexeril 10mg as needed (the Flexeril I can only take at night or it will make me dangerous to be around--I get very sleepy and very angry if I have to force myself awake, and I don't think I could stay awake on the road)
• regular injections at C4 and L4-S1 for nerve/disc issues
  

For years, I took vicodin for pain, but as I had to switch providers, my current doctors do not find it appropriate. I smoke about half a cigarette most days; I find that at that level, I do not develop tolerance, and it causes most of the pain in most of my body to be dulled temporarily, felt only through a distant numb tingling feeling. Orgasm helps almost as much for a few minutes.

While setting this up, I came across this article, whose comments perpetuate every FMS myth I've ever heard, and which includes the gem of a comment "Some doctors believe diagnosing the symptoms as an illness only causes people to fixate on discomfort that other people just put up with..." If a genie were before me to grant one wish, I would wish that every doctor who has ever dismissed FMS as psychosomatic have to walk two moons in my shoes.