LIFE --1 Hour At A Time!

In reply to my friend E-patient Dave (Dave DeBronkart)'s suggestion to please share with others why it is a myth that Fibromyalgia (FM) can NOT be proven or diagnosed:


Dear Dave
I think I got the message late on Twitter that you wanted me to share some ideas about proof that Fibromyalgia CAN be diagnosed. So here's my humble offering.

The problem is that when the term "Fibromyalgia" was coined in 1988 or so, the medical world called it "A wastebasket term, a miscellaneous category to place patients in when they continue to have pain without any positive blood tests." One interesting fact is that when these people go see different specialists who take various other tests, they DO find a real diagnosis such as hypothyroid or metabolic disorders, cellular dysfunction, so they no longer have the diagnosis of Fibromyalgia even though they have the symptoms. One of the problems of this disease is not being able to think clearly, kind of like having Attention Deficit Disorder (ADD), so you can change and organize this letter any way you'd like.

1) It has been found that 95% of people with Fibromyalgia and Chronic Fatigue Syndrome have XMRV virus. The virus has also been found in some with Multiple Sclerosis and Lyme disease, which have overlapping symptoms with FM. Unfortunately there is only one place in the USA that is able to test for this virus. It's the Whittemore Institute in Reno, Nevada, USA.
http://www.wpinstitute.org/xmrv/

It's considered severe enough that the Red Cross have suggested that people with the XMRV virus should not donate blood. They have also found the virus in 3% of the blood supply. http://tinyurl.com/5wzjvnw

2) There is a virus researcher who often claims that her FM (fibro) patients are much more ill than her AIDS patients. Her name is Dr. Nancy Klimas.
http://tinyurl.com/6xm2zgw

3) I can't remember where I read it, but one rheumatologist found that the only patients he had who felt pain when the blood pressure cuff was applied, were patients with FM. This news has spread and has become a starting point for suspecting FM in patients without other diagnosis.

4) The World Health Organization (WHO) seems to be ahead of the doctors in their knowledge of FM. I am hoping the doctors in medical school now will learn the new facts and appropriate respect for the disease instead of the abuse and neglect we get from the older doctors who refuse to learn anything new about the problem. Here is the WHO's statement about FM. The WHO has dozens of pages of information about the disease, various studies, treatments and symptoms. http://www.who.int/

5) When consulting with the Disability Board of the USA, you will find they say that it is a growing and disabling disease, both in the handbooks of SSI and SSDI.

6) There is a medical 400 page manual written by Dr. Devin Starlanyl M.D. that lists every symptom possible in FM, explains why it happens, complete with diagrams. The symptoms are consistent from patient to patient worldwide, so there is no doubt that this can not be a disease of the imagination, as most doctors treat us like it is. See
"Fibromyalgia and Chronic Myofascial Pain Syndrome, A survival Manual" by Devin Starlanyl M.D. and Mary Ellen Copeland, M.S., M.A. It can be boughten as a used book, as it is a bit more expensive than fiction books because of the reference and medical matter, but it is intensely helpful to every fibro patient, it discusses how to live with the illness in almost every area of life.
http://tinyurl.com/5u9ppyy


You can also find her website about FM for more info here, where you can read more than I can research for you:
http://homepages.sover.net/~devstar/

The WHO agrees that integrative medicine, alternative health practices, and prescriptions work in combination to increase the quality of life in an FM patient. What we are waiting for now is an anti-viral for the XMRV virus. They made one for HIV, HPV, type A flu and cold virus, and soon it will be our turn as well.

Thanks for asking me, I also have lupus which makes my health and energy limits much more complicated. I wish I could have done more research for you.

Best wishes,
Sheila Wall/Penlady on twitter, Bluebirdy on blogspot.

Posted by Bluebirdy at 22:27