help finding a good health care provider

[dawnsimpson]

Does anyone have suggestions for finding an M.D. who is really knowledgeable about fibromyalgia/CFS? I’m looking for both suggestions for locating providers with real experience and knowledge, and any recommendations regarding specific providers in the U.S., preferably in my part of the country (Washington, DC / Northern Virginia). Lots of doctors are willing to throw meds at the symptoms, but not many know about treatments that might really help in the long run. I’ve seen an internist who was helpful but not very knowledgeable and a rheumatologist who was a little more knowledgeable (about fibromyalgia) but not very helpful, along with other providers who were neither very helpful nor very knowledgeable. The internist referred me to Dr. Peter Rowe at Johns Hopkins University, who specializes in this area, but unfortunately Dr. Rowe is not accepting new patients. The Chronic Fatigue Syndrome Research Center at Stanford University (other side of the country) has a two-year waiting list! This is extremely discouraging. Surely there are providers on the East Coast who are working in this area and have acquired some good knowledge, but are still accepting patients. I’m willing to travel, but only to someone who knows what they’re doing! I’d like an M.D. who can explore the whole range of possible treatments, not a chiropractor or non-physician practitioner. How do you find someone like this?

Thank you so much!

 

[onward & upward]

Good luck on your search. I understand the health insurance companies dictates what a Dr can or can not prescribe for a specific ailment, if the protocol for treatment is not followed the Dr will not get authorization/paid for a different treatment . It depends on the type of health insurance you have, if you have super duper Cadillac insurance (Not free obama care) then and hopefully then you will find a Dr who will attempt other methods, only other option is to pay for experimental treatments out of pocket. I feel people are used as lab rats since there is no money put into fibro research. Sorry to sound like Debbie downer, but I didnt want you to get your hopes too high. Ive been looking for a good Dr for years.

 

[cmetryme]

Try your local hospital for referral.
Ask for a case worker.

 

[dawnsimpson]

Good luck on your search. I understand the health insurance companies dictates what a Dr can or can not prescribe for a specific ailment, if the protocol for treatment is not followed the Dr will not get authorization/paid for a different treatment . It depends on the type of health insurance you have, if you have super duper Cadillac insurance (Not free obama care) then and hopefully then you will find a Dr who will attempt other methods, only other option is to pay for experimental treatments out of pocket. I feel people are used as lab rats since there is no money put into fibro research. Sorry to sound like Debbie downer, but I didnt want you to get your hopes too high. Ive been looking for a good Dr for years.

Thanks so much for taking the time to answer. I guess I need to find a doctor who is willing to use me as a lab rat and be prepared to spend.

 

[cmetryme]

I spent 100k last year on it. Looking in April
And the rest of this year @ 60k.
I kid you not. That's why I share. Most can't afford what I have.
Good luck and keep posting because it helps others.

 

[Vellybean]

Have you asked for a referral to a pain clinic? My primary physician sent me to our pain clinic. Get on the waiting list for the CFS clinic if you can. Two years is a long time but sounds like they know their stuff. I do a lot of eastern medicine and it helps. Massage, meditation, etc helps a lot. Best of luck to you! It is hard when we have doctors who seem not to understand. Hugs!

 

[onward & upward]

Dawn, thanks for posting. The community here helps me trudge thru the trials & tribulations of this condition. My journey hasnt been a ripple free one. My GP Dr finally understood the amount of pain I was in once I showed her proof (photocopied receipts) of all the money I had spent on holistic treatments (massage, chiropractor, acupuncture) and a complete breakdown of all my dietary & physical therapy work I was doing at home for a 6 month period. I cannot stress enough how beneficial the newly discovered fascia stretching & mindfulness meditation has been for me these past few months. Once again, good luck on your mission and remember your definitely not alone.