Monday, May 09, 2005

National Fibromyalgia Association Founder Says She's Heard About 'Cures' Before

This report I find useful in relation to ME/CFIDS because it states FMS is a neurochemical disease (which I feel is an area researchers should explore in ME/CFIDS sufferers). Excerpt:
"Fibromyalgia, Yunus said, is a neurochemical disease - a chemical imbalance causing hypersensitivity in the nervous system that amplifies pain. Trauma to the neck can trigger fibromyalgia, but so can stress, genetics, poor sleep and infection, Yunus said."
It is interesting that the spine should be mentioned in the report. In 1980 I was quite seriously injured in a car accident and suffered whiplash that took years to heal. One of the bones in my spine close to my neck [c-3 or something] was injured and squashed. I spent three weeks in hospital because of a head injury and six months of physiotherapy to rebuild torn back muscles. On a brain scan, a small lesion showed up. The neurologist said the head injury could have caused the lesion or it might be congenital. He said he had seen similar lesions in M.S. sufferers and was looking for M.S. I was young, fit and healthy, and had no other complaints except for the injuries.

Now I wonder, not that I have M.S. but I have read that M.E. can show up on scans as white lesions - tiny specks, much smaller than those of M.S; some are too deep in the brain to show up on scans which could explain why scans show up clear on some M.E. patients, making scans not a very reliable diagnostic marker for M.E. Who knows, one day, I might have a PET scan. I am still too ill to attend for such a test. It would have to take place during a hospital stay. What is the point though I ask myself. Even if they did find something, it wouldn't change anything, there would be no treatment or cure. I did have a life and career after the car accident, but have never felt quite the same since. Always struggled with fatigue and spent many a weekend sleeping after a long hard week of working, but I managed OK. So, if the lesion has anything to do with how I feel today, it has taken a long time to get to this point. My theory is, the virus I contracted in September/October 1999 was the final straw that did some sort of damage I have not yet recovered from. Some people do recover. The younger you are, the more chance there is for recovery within the first few years, or even four years.

Going by various studies that have been carried out over the past few decades, chances for recovery seem less after four years, although I have heard (but not first hand) of people recovering after 8 or even 16 years. I know many who have been ill for a very long time. Most of the doctors and nurses that contracted M.E. while working at the Royal Free Hospital in London (back in the 50's I think) who are still alive, are still as ill to this day. Someone locally that I know, through telephone conversations, has suffered for 17 years and is now at her wits end. Her doctor is getting her to experiment with Opium patches, which are turning out not be of much help. Some days she thinks they help, and other days she is well aware they don't help at all. Overall, she feels drugged which affects her sleep and does not add to her quality of life at all.

Dr Betty Dowsett, a colleague of the late Dr Melvin Ramsay [a British doctor who defined M.E. some 50 years ago] still to this day stands by Dr Ramsay's findings that M.E. is "atypical polio - or non-paralytic polio" caused by an enterovirus that (now I've forgotten the details) can be traced somehow in the base of the spine - please do not quote me on this - I am too exhausted right now to look up precise details. What I am saying is, it seems to me, the area of the body that should be looked is the spine and the brain - and find damage the virus has done there that could cause orthostatic intolerance and intolerence to stress and alcohol.

Here is the report, courtesy 05-04-2005 - 'C' Word Raises Red Flags: National Fibromyalgia Association Founder Says She's Heard About 'Cures' Before By Gregory Crofton Tahoe Daily Tribune:

Paul Whitcomb, a South Lake Tahoe chiropractor, believes he has found a cure for fibromyalgia, a disease that hypersensitizes the nervous system and causes debilitating pain in millions of Americans, most of whom are women.

He says his repeated neck adjustments realign the top vertebra of the spine and allow 95 percent of his fibromyalgia patients to get well. Experts on the illness and its leading researcher in the country are skeptical of this claim. They did not dismiss it altogether, but say controlled studies would be needed to prove it.

"When I hear this red flags go up all over the place," said Lynne Matallana, president of the National Fibromyalgia Association. "You start using the 'c' word and I get very nervous. As far as we know there isn't a cure yet."

Matallana, who was in bed for more than two years because of fibromyalgia, said Whitcomb's theory is interesting because as many as 60 percent of people diagnosed with fibromyalgia have experienced some type of physical trauma, such as a car accident that induces whiplash.

"We have ideas, but we have a lot to learn," Matallana said. "I know a lot people with fibromyalgia who have pain in the neck and shoulder area. It's an area that we think needs more research. Anecdotally, from the patients' point of view, there seems to be something there."

Leading expert

Dr. Muhammad Yunus, a rheumatologist and professor of medicine at the University of Illinois, who has studied fibromyalgia since 1980 and is a leading expert in the field, said there is a chiropractor near his Peoria office that claims similar success in treating the disease.

Fibromyalgia, Yunus said, is a neurochemical disease - a chemical imbalance causing hypersensitivity in the nervous system that amplifies pain. Trauma to the neck can trigger fibromyalgia, but so can stress, genetics, poor sleep and infection, Yunus said.

"It's very easy to have the testimony of one person, but one person does not represent the total population," Yunus said. "I think the thing you should really emphasize is that anybody can make claims, and the patients may indeed feel better, but there should be controlled studies."

Patients become believers

Whitcomb's waiting room is small and packed with sick women and an occasional man who are starting to feel better. Since his treatment can last for several months, and involve neck adjustments up to three times a day, the group bonds and empathize with each other's symptoms.

"It's so wonderful to meet other people who understood what you're going through," said Jannie Hills, 52, of Bradenton, Fla.

The empathy that fibromyalgia patients find at Whitcomb's office after years of isolation caused by their illness could contribute to a placebo effect, Yunus said. That would mean people are getting well because they think they are being treated correctly.

"I'm glad to hear about that doctor, that he's doing good things for people," said Rae Marie Gleason, executive director of the National Fibromyalgia Research Association. "But remember these people have gone to so many doctors who told them they are crazy and that if they wanted to get well they could get well. So if they find a doctor who understands their problem and reassures them he can get them better, they believe the doctor."

Gleason said she knows of other chiropractors and physicians in the country who claim to provide relief from fibromyalgia through vitamin therapy or neck adjustments.

Husbands and doctors

Bill Cornwell, whose wife, Betty, was treated by Whitcomb, rejects the notion that the improvement in his wife's health is all in her head.

"I know what I see," said Cornwell, who lives in Ohio and took out a loan to pay for Betty's treatment. "She's been able to do a lot more, she's got lot more stamina, she's not in pain and she's sleeping now. A lot of good things happened and it only changed because she went there."

Dr. Adnan Sammour, an internal medicine physician who treats Hills, knows how much pain his patient was in before she left to be treated by Whitcomb.

"She's almost completely pain-free, sleeping through the night and not requiring any pain medication," Sammour said. "She tried pain medicine, physical therapy, message, acupuncture, and that did not help. His manipulation I'm not familiar with, so it's hard to judge what's being done. But it works."

Other chiropractors work on fibro, too

Mary Glass, a chiropractor in South Lake Tahoe, said she can provide relief for fibromyalgia patients through adjustments of the spine, but her treatment also requires dietary changes and exercise.

"I see that in all my fibromyalgia patients, some kind of trauma, a fall or head injury," Glass said. "I don't believe that's the only thing. I've seen through my own experience since 1986 that fibromyalgia is an accumulation of different faults. I think if you just do that adjustment and don't address other factors, it's going to return."

The American Chiropractic Association said the research it's compiling does show fibromyalgia can be treated through their profession.

"Of the scientific papers published in the last five years definitely some are supportive of the chiropractic treatment of this disease," said Angela Kargus, communications manager for the association. "Studies have shown that treating it is really within the realm of chiropractics."

Source: © Copyright 2005


Anonymous Anonymous said...

I am not a doctor and I don't play one on TV. :) I can only speak to my personal experience.

After years of misery, last year I tried two new things: a chiropractor and a Sleep Number bed. By the end of the year, my pain level was reduced substantially.

I can read x-rays at a very basic level, so I know the chiropractor was not lying when he said they showed the spine was out in every possible place in every possible direction. His professional opinion was "a mess".

After just the first couple of treatments, my ability to clean house nearly doubled, to 5-10 minutes at a time, and my pain level was down noticeably.

Then I got the new bed, and the first night slept for 12 hours. I don't remember the last time I did that. By the end of the first week with the new bed, my pain was down to only those places that I could point to and specifically say "tennis injury" or "volleyball".

I don't say this will work for you, but it's worth a try. N.B. Sleep Number will let you return the bed in 30 days, owing only the delivery fee (if any), if it doesn't help.

September 15, 2006  

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