Fibromyalgia

[Yellow Sprinkles]

Awww you're sweet for saying that.

[Geode]

One thing anyone with Fibromyalgia might be interest in - Four teams of researchers have independently confirmed that a virus previously unknown to infect humans called XMRV (a retrovirus that is found in rodents) is almost certainly the cause of Fibromyalgia and Chronic Fatigue Syndrome and most likely Gulf War Syndrome. Viral DNA was found in 70% of patients, and almost all had antibodies to the virus. Only a very small number of "healthy" individuals carried the virus. Like HIV, XMRV messes up the immune system, thought not to the extent as HIV. The paper made headlines throughout the medical community when it was published in the prestigious journal "Science" last week. The lead researcher at Whittemore Institute stated that like HIV, being XMRV positive does not mean you will have Fibro or Chronic Fatigue, much like being HIV positive does not mean you have AIDS - but it could develop after a period of years after exposure. Scary is that this virus has been found in a disturbingly large number of autistic children.

[binky11]

Very interesting, thank you. I have done some research and this could be a big breaktrough for sure. Although it talks about the cause, it still leaves one wondering how they got it. Including a link below that has the Q&A section. Thanks Geode for this info.

http://www.wpinstitute.org/xmrv/xmrv_qa.html

[April research]

If anyone is interested, The Kelowna Sleep Clinic and The Medical Arts Health Research Group are currently studying Fibromyalgia and associated sleep difficulties and are looking for people to participate. There is no cost for any testing or medications and expenses can be reimbursed as well. If you have any questions or might be interested, call 250-763-1791.
Thanks & Happy New Year!

[Baby Doll]

Hello all, I am a sufferer of FM for years now and I also have a daughter who is afflicted. I have over the years been able to manage the pain, but not without suffering majorly at work, home, driving, sitting (the absolute worst thing for me), and social gatherings. I prefer now to work get what I need in town and head home. Home is my refuge so to speak, the place where I can moan and groan, stretch and swear from time to time. That being said I head for my bedroom because when I feel like its unbearable I lie down and relax with heating pad or just a comfy pair of pjs and my pc. I am looking to join a support group for FM sufferers, my daughter as well, because I feel that this disease is the kind of disease that needs recognition even if its starts with us. Like you have all said FM sufferers look as healthy as the next guy and while your in pain on a scale of 10 and your above 10 they look at you like your mad. People really don't understand pain unless they see blood and bandages or physical scars. Well I tell you we FM sufferers have scars a mile long. Please feel free to pm me. (email removed/Trip) if you are starting a group.

God bless you all and don't give up.....managing your pain is crucial and keep moving.

[binky11]

I hear your pain. I was diagnosed back in 2001.
Your so right when you say people "don't get it" I think that used to bother me as much as the condition itself did. I have learned to live with that part of it, if they don't "get it" by now, they never will. It can be so frustrating at times.
There have been a couple of support groups that have started up here in the past, but they seem to faze out after a short time. I guess they need people to initiate and lead these support groups. I do see a need for one, and I think if well advertised, and with a good leader, it could be very successful. I think part of the problem with these support groups is some thought of them as *itch* sessions, but I get that too, as it's only others that have fms that you know really do get it, and it's nice sometimes to have some empathy.
I have been through the run with rheumatologists, medications, the natural approach, you name it. What works for some, won't work with others. Also most people that have fibromylagia, have other conditions as well such as sleep apnea, chronic fatigue syndrome and a host of other ailments. Lots of people with fms are now being diagnosed with sjogrens too, as I just was, as is common.
But how can we feel THAT bad when we look just fine eh? They don't call it the invisible disease for nothing.
I am on disability, I know I am not able to work fulltime, but am working on getting healthy enough to try to get a part time job in the future.
I wish I could be more encouraging, I wish I could tell you of a local support group, for that I am sorry. For the most part I just end up doing what most people say, suck it up! Yeah I could slap them for that lol
Hang in there kiddo, feel free to pm me if you like.