What have you heard about the Fibromyalgia and Fatigue clinics? Are they a god send, or a rip-off?
I am a Registered Nurse who has had fibromyalgia for almost 3 years. I have been seeing an internal medicine doc the entire time. Besides prescribing pain meds, antidepressants, a muscle relaxer and Lyrica, my doc really hasn't been able to improve my health status. I have a pharmacy of meds to take every day; and I just think we are putting a band-aid on the symptoms, not treating the cause. I am almost positive I am also dealing with myofascial pain syndrome and chronic fatigue syndrome. That is a little history, so here is my question. Has anyone had any exposure to the Fibro and Fatigue clinics? I am aware they test for a LOT of problems and they do unconventional treatments that work for some people. But my problem is the cost of the visits. I was told it is almost $400 a vistit for the 1st two visits. On top of that, it is cash up front, and they can't even file on your insurance. Why is that? But then again, I would gladly spend $800 to get my life back.
Public Comments
1. I have a friend with she takes many meds,very complex to diagnose,treat.I suggest contacting me,so you can get better input.Sometimes in my op pinion they give you so many meds that it makes more symptoms than they help.She has muscle aches and pains,Insomnia,irritability,anxiety,depression,I've seen it for years in her.With meds she forgets things,sleeps to much,no energy.She goes online to a forum to chat with Fibro patients,being a nurse it should help you.
2. From my experience, the vast majority of these clinics are total rip-offs. The cost an arm and a leg, and their "treatment" is generally to give you vitamins, and then teach you some gentle yoga and deep breathing/relaxation exercises. Some go so far as to have "unique" treatment that can only be found at their clinic - the "unique" treatment being some mix of vitamins/supplements that no one else uses.
Are you familiar with Devin Starlanyl's book? It is called Fibromyalgia and Chronic Myofascial Pain, and most people that I know who have fibromyalgia call the book the "fibro bible".
Have you ever seen an Osteopathic doctor (they are the ones who have DO after their name instead of MD). Osteopathic doctors are trained in modern medicine just like an MD, but they take an extra step and learn more about the entire body as a whole, usually with a lot of focus on the muscloskeletal and nervous systems (the affected areas in fibro/fatigue).
Hope that helps!
3. I have not been to one myself, But having both myself I'd get a referral to a good Neurologist. I know that CFS can now be diagnosed by brain MRI- (A friend in Canada had this done) I suspect that Fibro is also due to a problem affecting receptors in the brain. I have a clotting disease causing mine after my second stroke. I know many others that either have this diagnosis or one similar due to brain / nerve function problems. Just my 2cents.. I'd put my money towards something scientific. As a nurse, I'm sure that you keep up to date on the medical info.
My worst triggers are stress and weather changes
Hope you hear from others who have had experience
Good luck
4. I attend an environmental clinic in Canada that treats people with environmental illnesses, CFS, Fibro and allergies. In my case, it has been a GOD sent! I have been diagnosed with fibro, CFS, Ehlers-Danlos Syndrome, celiac, arthritis and allergies. I cannot remember a day without pain but with the treatment I receive at the clinic, the pain is now bearable and manageable and my quality of life has greatly improved. A series of blood tests revealed that I had a serious problem absorbing nutrients. My levels of calcium, thiamine, iron, B12 etc were all well below normal. I started taking daily supplements of vitamins and minerals but the levels were not increasing because of the malabsorption. The doctor suggested that I should try intravenous nutrient therapy. It made a significant difference. My pain levels decreased and my energy levels increased. Blood tests results are still not great but I am now at least in the low range of the scale. The doctor I see is an MD so the visits are covered by insurance but the supplements and the IVs are not. It has taken quite a toll financially on our family but the difference in my quality of life is so significant that we decided to keep up the treatment. The problem with the IVs is that it does not have a long lasting effect. I need at least one IV per week and if I skip a week, the pain and fatigue increases rapidly. The results of a pilot clinical trial of IV nutrient therapy to reduce fibromyalgia symptoms has just been released in the journal Alternative Therapies, May/June 2007, Vol. 13, No. 3, pp. 32-34. You may find it an interesting read. IV nutrient therapy does not work for everyone. I have met people at the clinic who tried it and did not have as good results as I have had but it is worth a try. Two years ago, I prearranged my funeral and did not think that my body could survive much longer. Today, I enjoy each day and look forward to tomorrow. Best of luck in your quest for answers.
5. Hi,
I think you're better off with your internal medicine doctor-that is if he/she is willing to make it a team effort to fight this illness. Sometimes we as fibro patients forget that there is no cure, so our expectations of how we feel may not be realistic. But we can improve a great deal and it takes a skilled Dr. that really knows fibromyalgia to understand exactly what to do. These clinics are money banks. They may offer a lot of alternative treatments, but many of these things you can research and do on your own.
My doctor does research on fibromyalgia. He can put fibro in remission because of the information that he found in his research. First, you have to get your doctor to explore the underlying causes of fibromyalgia, such as thyroid (even if the tests read normal), estrogen dominance, adrenal exhaustion, sleep apnea,etc... When you treat the underlying condition, the fibro can get better. But if these underlying causes are never treated, then your fibro will never get better.
Second, in Dr. Wood's research, he discovered that fibro patients have lower dopamine levels than normal. So his treatment protocol includes using medications to rasie dopamine. Since you already take antidepressants, why not try Wellbution or another one that works on dopamine. Use Baclofen as a muscle relaxer instead of others since it also raises dopamine. If you don't respond to that, he has used meds that parkinson's patients use liks mirapex to raise dopamine levels. If you still don't respond, you may want to try armour thyroid even with normal levels, just to see if there is an underlying problem.
As for Lyrica, it didn't work well for me, but neuronton works better. Plus, I take magnesium for muscle spasms, melatonin for sleep, and other supplements for other symptoms instead of relying on conventional medicines for relief of all of my symptoms.
I am developing a page on the Bella Online website that will have a directoy of fibromyalgia specialists around the world. I hope to have a listing of legitimate referrals from people who have actually gotten better under these doctor's care. You can also read some of my articles on fibro since I'm the editor of the fibromyalgia and CFS site at http://fibcfs.bellaonline.com/Site.asp . It's free information and many of my articles comes from Dr. Wood's research.
I hope this helps,
Veronica
6. hi check this link its good
http://insurancess.notlong.com
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7. Hi, I am a member of this fibro group and I have recently contacted a clinic in Atlanta Geo. which claims to have some answers to this disease. I have a appointment for this July but, I am not sure if I want to go through with it. They sent me some ligature that explains fibro as something to do with your thyroid, viruses in the blood and parasites....??? The cost is almost $400 for the first visit and then an additional $400 after that. If you would like, I will send you the information on this through the email ok? Hugs, Terry
