Fibromyalgia Won't Kill You
Learn To Live With It, He Said
... aka when not to follow doctor's orders
As soon as I could see straight again, I hit the search engines, looking for stabbing ankle pain rapid onset. There had been no warning, no cramping, no stumbling. To make matters worse, it was on my GOOD leg.
I'd injured my back a few years before - a nice wrenching disc-shredding incident that left me pretty much immobile for the better part of a year. I'd fought off surgeons and climbed my way back to mobility and employment, with the help of chiropractors, a sturdy cane and a lot of good ole fashioned stubbornness. I was still walking a bit lopsided and not very fast, but I was moving around and working.
One thing I did notice was that I was tired -all- the time. My neurologist said this was not uncommon with back injuries and, since I refused to take the risk of facet-screw surgery (and the risk of paralysis - it was not an FDA approved procedure at the time), I was just going to have to 'learn to live with the pain and fatigue.' (his words)
Fibromyalgia, According to Wikipedia
(at least they don't insist it doesn't exist...)
And I quote:
Fibromyalgia (new lat., fibro-, fibrous tissue, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain) is also referred to as FM or FMS. Fibromyalgia is characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other core symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms. Fibromyalgia is estimated to affect 2-4% of the population.
Fibromyalgia is considered a controversial diagnosis, lacking scientific consensus as to its cause or causes. Many members of the medical community consider fibromyalgia a "non-disease" because of a lack of abnormalities on physical examination, the absence of objective diagnostic tests, and extensive overlap with other proposed conditions such as chronic fatigue syndrome and multiple chemical sensitivity. While historically considered either a musculoskeletal disease or neuropsychiatric condition, evidence from research conducted in the last three decades has revealed abnormalities within the central nervous system affecting brain regions that may be linked both to clinical symptoms and research phenomena. It should be noted, however, that these studies show only correlation, not causation, and some research suggests that fibromyalgia might be the result of childhood stress, or prolonged or severe stress. Although there is as yet no generally accepted cure for fibromyalgia, some treatments have been demonstrated by controlled clinical trials to be effective in reducing symptoms, including medications, behavioral interventions, patient education, and exercise.
After Touring the Internet
The party line appeared to be that the syndrome only existed as an excuse for middle-aged women (and a handful of men) to not get up and move around. This was in the mid-1990s. Two authoritative voices spoke of its legitimate existence - and one recommended drinking a wicked-tasting cough syrup to ameliorate the symptoms: Guaiafenesin. I stored that data for later use and kept on surfing.
My next stop brought me to a chart of diagnostics, including a full-body diagram of trigger points. The brief text said that if the patient had widespread pain throughout all four quadrants of the body for a minimum of three months -and- if the patient exhibited tenderness at 11 of the 18 trigger points, a diagnosis of fibromyalgia was warranted.
That afternoon, I was exhibiting tenderness at about 15 of the trigger points. In addition, my other symptoms of fatigue, headaches, brain fog, dizziness, insomnia and muscle pain all slotted right into place.
Not the original page I found at that time, but the chart is much better.
So I set up a visit to the neurologist who had been treating me during the worst of the back injury, and he said:
Fibromyalgia Doesn't Exist
also known as "It's All In Your Head, Dearie"
A few months ago, a locally-respected general practitioner whose training has ranged from India to prestigious medical schools in the US stated categorically that fibromyalgia is a figment of my imagination. To quote: "They call it a 'syndrome' because it does not exist. The symptoms you -say- you are having are almost entirely psychosomatic. You cannot not have fibromyalgia since there is no such thing as fibromyalgia."
I decided that that would not be the moment to bring up the positive diagnoses of a second neurologist, an endocrinologist at a nearby clinic, and a second GP, who had started me on a course of muscle relaxants that allowed me to actually get a full night's sleep for the first time in years. During the three weeks I took them, not only was I able to sleep through an entire night, but I was also able to wake up and -move- without experiencing hideous muscle cramping in my back, legs and ankles.
Educate Thyself
Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition)
Devin Starlanyl's website was the first I found that treated fibromyalgia as something other than a figment of the imagination. The original edition of this classic survival manual offered the first comprehensive patient guide for managing these conditions. Its extensive set of healing tools included targeted bodywork for painful trigger points and strategies to helpccope with chronic pain and sleep problems and the numbing effects of fibrofog. More than 75 percent of the second edition is new or updated material, including coverage of promising new research on the causes of fibromyalgia, evaluation of new treatments, complete discussions of special issues for women and men, and the latest information on medication. An update of the first edition's popular provider index helps sufferers select those practitioners who will take their complaints seriously and offer knowledgeable treatment advice.
Amazon Price: $14.93 (as of 12/25/2009) 
Fibromyalgia: The Complete Guide From Medical Experts and Patients
Amazon Price: $21.33 (as of 12/25/2009)
What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease
Amazon Price: $10.17 (as of 12/25/2009)
Coping
(without moping, if that's possible)
GENTLE exercise helps; moderate exercise leaves me flat on my back for a day or so.
I avoid tomato products; something about them tends to bring on an attack (a fibro flare - agonizing pain that lasts anywhere from three days to several weeks).
I keep hydrated but don't go overboard. If I drink -too- much water, it can bring on abdominal pain that will also crumple me into a corner.
I belong to several online FM support groups and participate in the more positively-oriented ones. I did attend two meetings of a local support group, but for the most part we were all just too tired to do much - so I stopped going.
But by far my most successful coping solution has been an infectious sense of humor, the ability to laugh, and a joy about life in general.
Does Fibromyalgia Exist?
Your opinion, please...
Thankfully, this is an anonymous poll - be candid in your responses, knowing that there's no way to track an answer back to any individual. The results will make absolutely no difference to you, to me, to the medical community in general... but let's see what the current trend is.
So Let's Hear It - What's your opinion?
Time to voice your own belief, experience, opinion.
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Reply
- Peppermint_patt Peppermint_patt Dec 16, 2009 @ 5:11 pm
- FMS strikes when you aren't expecting a flare. Wham! It's like striking out in baseball because suddenly you're down for the count. It's also very hard to explain because on
the "outside" everything is looking good, but inside things get out of whack quickly.
Great explanation! Thanks from all of us who share FMS with you!
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Reply
- Soby Soby Jan 16, 2009 @ 4:35 pm
- I have FM too, it took me about two and a half years of doctor's telling me there was nothing wrong with me before I found one that listened. Great page! I would love to know some of the (positive) online support groups you are in!
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Reply
- d-artist d-artist Dec 1, 2008 @ 11:50 am
- I also have FM and deal with it everyday...I just wish they really knew what it was and the real cause..I think doctors lable it FM cause they don't know what else to call it JMO...5*
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Reply
- paperfacets paperfacets Oct 21, 2008 @ 12:49 pm
- I know two people with FM. One had sudden pain in her arm and shoulder while using a Deli meat slicer. Her arm froze and could not be moved. She lost her super market job. FM I think something has gone wrong with the nervous system that regulates pain. Too bad there is not more focus on studying the nervous system. It is about chemicals, triggers and pluses in the body.
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by Caseyfern
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Fibromyalgia sufferer since 1995, FM advocate and loudmouth since 1996, ignorer of several doctors since 1997.
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