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Question

Omg u mean ppl with fibromaylagia can end up in wheelchairs ..of course my insurance company denied the use of lyrica ..they said the doctor didnt give them information why i have to use it like the tender point analysis symptom duration etc..he didnt submit it which i dont know why i have to call monday i ask him if there was any other med that my insurance will cover he said yes but with the severity of my pain he highly doubts anything else will help me plus the insurance company said an adequate trial of at least 1 therapetic alternative has not been documented..and i almost died when i found out how much this is $229.95 yikes who can afford that ...im thinking that this doctor is waiting for all these other tests come back cause to my knowledge their is no documentation supporting the diagnosis of fibromyalgia ..this doctor has me in limbo..does he think i have anything else and he is stalling at this point my insurance doesnt think its medically necessary for to have it...

buriedinfur · Answer

This stuff is facinating and really exciting - the idea of having something that can be helped rather than bandaided over.

However - how? How do we get that help? Do we bring this up to our current doctors? Is there a clinic we can go to? (I'm in Canada, but I'd look into paying for some treatment - it would be worth it)

tjoan910canadian · Answer

I guess all of the neurologists and specialists at the MS Society in Ottawa are wrong then.......everyone has a different opinion....I just go by what the hubby says:...he is the one with Progressive MS.

VaBreeze · Answer

Cited:  "About 10 or 20 years ago, there was a saying that MS causes all kinds of trouble but doesn't cause pain, which really isn't true," says Francois Bethoux, MD, director of rehabilitation services at the Mellen Center for Multiple Sclerosis Treatment and Research at The Cleveland Clinic."

http://www.medicinenet.com/script/main/art.asp?articlekey=52405

tjoan910canadian · Answer

I never said that MS persons do not have pain....I said MS itself does not have pain....the pain comes from the progressive aging process....like Arthritis, osteoarthritis, etc.....which my hubby suffers from on a daily basis......because he is aging very fast.....he rarely has a good day.........he is now slowly going blind.......I have Crohn's disease and that to can cause me to oneday possibly go blind but with him it is definate............ I am sure that one day they will find out what Fibro is really caused by..but I really hope that they find a cure for MS.....first.......unfortunately we have a world full of scientists looking for cures....and they have not really cured anything yet.....and now M.S. ....Crohn's disease and some others that were not so common years ago are now on the rise more than cancer is. We have the answers to what causes a lot of these diseased.........technology.....to many manmade products..............processed foods, hydro, fuels, ultra violet rays, all that manmade **** that we either breathe or absorb or eat on a daily basis..and medications too.....(I take meds...plenty of them....but wonder are they hurting me more than they are doing good)...everyone that I take is hard on the liver & kidneys........It is sad..! This is someplace where our governments NEED to look is making our world a healthier place to live in.....with quality life...........

PlateletGal · Answer

"Thank goodness for Dr. Nicolson and the others who are going beyond the skeptical attitudes of most physicians and checking this out thoroughly."

Hear hear ! Dr. Nicolson and the Whittemores (Whittemore Peterson Institute) both of have had personal experience with CFS. I support these non-profit institutes that are trying to CURE our illness and not just treat the symptoms. Fight for these agencies that are fighting for us !

VaBreeze · Answer

I always thought that those with MS experienced pain as well, having good and bad days like we all seem to have.  

I'm with you regarding the immune dysfunction dx.  I strongly feel that after all is said and done, they will find out these illnesses are leaving our immune system debilitated, subjecting us to other autoimmune diseases.  When my dear friend was first dx'd she had Fibro, then CFS and now she is stricken with serious Rheumatoid Arthritis.  This took place within a few years of one another and now she is very ill, having to take shots and antibiotics to make it through each day.

Thank goodness for Dr. Nicolson and the others who are going beyond the skeptical attitudes of most physicians and checking this out thoroughly.

PlateletGal · Answer

Right... but if you've read the article on fatigue illnesses, it talks about how mycoplama infections (bacteria multiplies) can eventually create an "autoimmune response". This explains why I have autoimmune problems now and it makes sense to me.

Many of the MS patients on the MS board do complain of having pain. I guess to each its own.... and that some of these patients could possibly have overlapping symptoms.

As to whether or not fibro or CFS is an "autoimmune disease" ---- as I stated, I believe we are shot down with immune dysfunction. (the trigger being a virus sometimes). After then, many of us start to have autoimmune problems. There are physicians who do believe that fibromyalgia is an autoimmune disease. In Japan I hear they do. Also, my chiropractor (who has spent more years in medical school than most physicians) does. 

I actually think that during the next decade or so, physicians are going to start changing their view of what "autoimmune" diseases are. I worked with a pathologist who felt that if people truly had an autoimmune disease, then they would be dead. Our immune system is so powerful... that indeed, what she said makes sense. Another physician online shared the same thoughts. 

I do wish there was more funding for immune conditions, including autoimmune diseases. I also think that some of the CFS reasearch has led to new theories and discoveries which could help patients who suffer from autoimmune diseases, including M.S. The Whittemore Peterson Institute was started because the Whittemore's daughter, Elizabeth, has CFS and is in a wheelchair (until she takes amplign, an antiviral). That is just one example, but already... Dr. Garth Nicolson and other physicians discoveries about infections in patients who have autoimmune diseases is a VERY important discovery.

kiddthekatt · Answer

I found this site while surfing on autoimmune disease. It has a list of at least 100 autoimmune diseases, or what is considered autoimmune disease. You might wznt to check it out.

www.squidoo.com/list_of_autoimmune_diseases

gentle hugs
Angel

tjoan910canadian · Answer

I went to the sight that you gave me.......and I copied this and as it states......it has Fibro listed under the "Fatiguing Illnesses".....not under the "Autoimmune Diseases"




 http://www.immed.org/reachus.htm

tjoan910canadian · Answer

I have fibro and my husband has M.S. and even though yes we compare in a lot of things ....we are definately not the same at..........there is no pain from M.S.....however there is pain because he is "aging" rapidly and also going blind....he is 50 yrs. old......who told you that Fibro was an "autoimmune disease".??....I have crohn's disease and that is an autoimmune disease......I think that there is a lot of guessing going on in here just like in the medical profession......and it is circling around our heads and making us sicker......

PlateletGal · Answer

Hi Ghilly,

I actually agree with you about fibro and CFS. I know with CFS we first experience immune dysfunction and then autoimmune problems and/or an autoimmune disease. Many physicians now are changing their views on autoimmune diseases. I suspect that we will see more and more research done on this. I know the new Whittemore Peterson Institute in Nevada has money allocated to study what they call "atypical MS" ---- they are seeing more and more people with MS symptoms, who don't have MS.

In my opinion, all of these syndromes and autoimmune conditions are basically the same thing. The cause ? Well... we know pathogens play a very important role in all of these conditions.

kiddthekatt · Answer

I agree with GHilly. If one is able to exercise, that is wonderful, but I'm not one of the lucky few that can. On days that I feel pretty good, I tery to catch up with things that have been ignored while I was down, then I do too much and the flare starts over, it's an unbroken circle. I would love to be able to go out and walk around our neighborhood again, but I do good to walk out to our front porch to sit and get fresh air. This disease treats everyone differently, yet all the same.

gentle hugs
Angel

Ghilly · Answer

Not to be argumentative, but fibro absolutely IS an autoimmune disease.  It is lumped into the same general category as lupus.  The pain from it can be severely debilitating in certain individuals.  I have a moderate case of it.  My adhesive arachnoiditis causes me FAR more pain than my fibro does, however people like you and I are among the more fortunate sufferers of fibro.  There are some who cannot manage to even get out of bed, and exercise only makes it worse.  So it's not a case of "just get up and get going, you'll feel better" like with some other problems.  

Ghilly

PlateletGal · Answer

Please consider the fact that fibromyalgia can be severe in some patients. I've seen people I know with fibromyalgia who have gotten progressively worse. Of course if they have an infection (and Dr. Jacob Teitelbaum discusses this in his updated version of "From Fatigued to Fantastic" ---- then that infection, obviously, can and does spread.

Happy Holidays !

PlateletGal · Answer

Have you read some of the research on fibromyalgia ? When Garth Nicolson, Ph.D was answering questions here in MedHelp, he said that he considers that "there is a fine line between MS-like symptoms and FMS". 

(source: http://www.medhelp.org/posts/show/648144 --- response to neverwin) 

I agree with Professor Nicolson. I have Chronic Fatigue Syndrome and I know that I share almost all of the symptoms that MS patients do. And research is now backing this up.... we both have abnormal proteins found in our cerebrospinal fluid. We often have low uric acid levels and abnormal MRI's. I know that there is a research test (spinal fluid)... that apparently can diagnose CFS or fibromyalgia. It is a national lab that is doing this testing. I'm not sure whether or not insurance currently will pay for this, but the lab is "Red Labs USA". You can google their name for their website if you would like more info. 

Oh and in addition to all of that, I have a positive ANA titer (1:640), which is an indication of an autoimmune disease. The fact is 25% of CFS and 29.3% of fibromyalgia patients have a positive ANA titer and some autoimmune problems. There is a theory as to why this happens. Consider the fact that two-thirds of fibro & CFS patients test positive for mycoplasma infection. (just like autoimmune conditions). A theory that physicians are paying more and more attention to is this: "when mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response." ---- source: http://www.immed.org/illness/fatigue_illness_research.html

Dr. Nicolson successfully treated his own CFS symptoms and if you would like to read his bio and/or resume, here is the link: http://www.immed.org/reachus.htm

Best,

PlateletGal

tjoan910canadian · Answer

I do not believe that people with Fibro will end up in a wheelchair....because of the Fibro at all....it is not an Autoimmune disease......but if one lies around all day....yes you could.....you need to exercise and eat properly and maintain a good weight....etc....I have fibro, and crohn's disease.......and I struggle every day....but fibro is the least of my pain.........

real1992 · Answer

Insurance companies are the worst. We pay all that money to them every month to get coverage and when you need something you have to go through an "act of congress"  or worse to just get denied. I don't know about your specific case, but when I was diagnosed my Dr. gave me a few options but also ask about my ins. when I told him what type I had he decided to go with Cymbalta 1st. I got no relief even after incrising dosage. I am now on Lyrica and had no issues with the ins. co. I wish you the best.

VaBreeze · Answer

Yes, insurance companies can be quite difficult.  Your doctor just needs to word it the right way and it shouldn't be a problem.  There are a few other options...Cymbalta, Neurontin...you just need to find which one works best for you.  Unfortunately, there is no generic Lyrica.

Sometimes you can check the Lyrica website and they have a coupon card that can be used, or a free trial...it varies.  You can also contact them directly if your insurance doesn't help and see what type of program they have available.  If you doctor wrote you the prescription, then he must feel you have fibro...I would more think your ins. co. is stalling :-)  But they do have their requirements.

Yes, they can end up in a wheelchair.  There are different degrees of fibro...and while they say it isn't progressive I believe that theory is incorrect.

I wish you the best and don't forget to call him Monday about your Lyrica.  I think it will help.  Take care (and you are quite welcome).