Have you ever met a seven-headed dragon? Slaying it is nearly impossible, because as soon as you cut off one head two more grow in its place! I know this first-hand, because I fought with this dragon for 20 years until I found the chink in its armor and pierced its heart, once and for all.
Misdiagnosis Abounds
Like many sufferers of fibromyalgia, I was misdiagnosed for 15 years. Maybe it was because the condition has no specific or single cause, or because it has only recently (1990’s) been recognized as a “legitimate” malady. As late as 1982, fibromyalgia was not even an entry in the doctors’ standard clinical reference book, the Merck Manual. Over the years my doctors labeled my symptoms as: Chronic back pain (lower, mid and upper), frozen left shoulder (two and a half years), frozen right shoulder (one and a half years), plantar fasciitis, sleep disorder, restless leg syndrome—you get the picture. Finally, in 1997 I was given the label “fibromyalgia” and told that the only treatment was cortisone injections in every muscle where the pain was intolerable.
“Damn!” I thought, “That’s a lot of needles!” Not willing to become a doctor’s voodoo doll, I never went back to that doctor. Instead I turned to holistic approaches. I tried everything imaginable to “manage” my pain: excruciating deep muscle massage, strict diets, herbal remedies…I even tried a putrid brew concocted by a Chinese medicine doctor.
Admitting Defeat
After suffering for seven years under the futile belief that I could affect my own cure, I gave up. Admitting defeat, I found a new doctor and asked for help. His theory was that fibro is a disease linked to depression. So along with a non-steroid medication for pain, he prescribed an anti-depressant and a sleeping pill. These seemed to take the edge off the pain for a while.
I was “managing” my pain, pretty well until 2005 when I was crushed by trigeminal neuralgia. Excruciating pain exploded across the right side of my face—encompassing the jaw, cheek bone and temple and behind my ear. It was debilitating! I could do nothing but lie as still as possible with ice packs. Aspirin with codeine did not begin to touch the pain. I thought it might be a tooth, but the x-ray did not reveal anything for the dentist to deal with. I was sent to a neurologist who quite rudely told me, “You’d better hope it is a tooth because it’s not worth cracking your head open to fix this.” The trigeminal nerve does not originate in the spine, but at the base of the brain!
Gadz! I was a mess! So, my family doc prescribed an antiseizure drug in the hope it would block the perception of pain. As I was leaving his office, he said (rather off-the-cuff), “It might help with the fibromyalgia too.” Click here to read the entire article
2 comments:
Rebecca,
Loved your story on Fibro. I too had it for sometime, as aftermath of Autoimmune disease which hit my liver. Qigong helped me, as the mind body work enabled me to do a kind of "emotional clearing".
So I was interested to hear that you began to do gentle exercise and aquatics. Wondering what kind of exercise you did and whether that augmented your emotional process?
In process of my own recovery I developed a *new qigong* form that's performed in* warm water*, to *music*, employing a floating labyrinth to provide a mindful pathway. We've had lots of reports of help with pain, get referrals from Pain Clinics and so on. Water and emotions are so clearly connected; participants tell me that old painful memories come up with breath; they "give" them to the water and find mind-body-spirit/emotional relief.
Thought you might find this interesting, as I related to your story.
Here is our website, with a link to a Hallmark Channel piece they came and filmed, as well as our own DVD. Our non-profit is, fittingly, The Possible Society (timely, yes?!) *http://www.possiblesociety.org/005_videos.htm
warmly,
bett lujan martinez
exec.dir.
The Possible Society
Oh boy is this horrible.
If you can "just let it go," dear, you didn't have fibro.
If you had problems with facial pain and was given T3 or thereabouts for pain -- and hadn't been on anything stronger for pain in 20 years of having "fibrositis" -- you didn't have fibro. Your doctors would have given you something stronger at least once in that time.
What about your trigger points? What about everything that defines the diagnosis? (Delta-wave intrusion into alpha-wave sleep, etc.?)
Painkillers, anesthetic trigger point injections and various meds that treat neuralgic pain are the only proven methods for treating fibro.
Re water etc. Show me controlled, double-blind studies that prove its effectiveness. Same for "letting-go" therapy.
As to why "letting go" worked for you: You didn't have fibro, you had psychosomatic illnesses from repressed trauma.
Fibromyalgians (my word, not a misspelling) don't need people without fibro saying they having it saying they've been cured, then telling the rest of us saying they can be too. It helps others believe our struggle is a steaming pile... With people like you crying fibro the real disorder it may never find legitimacy...
Love and kittens
PS: Glad you were able to let go of whatever ailed you. Just don't dump it on an entire group of people now that you have.
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