Hello all. I hope everyone is feeling the best you can feel today. I live in a very rural part of WV and have been unable to find a doctor in the state or around the state to see for my chronic fatigue. My regular doctor diagnosed me with CFS a month ago after me being exhausted since 2010. Now she wants me to see a specialist (I think she just wants to hand me off to someone else so I won't be her problem anymore) but she doesn't know who treats CFS around here and I've been looking for weeks and calling rheumatologists and can't find anyone. Any suggestions are greatly appreciated and if anyone else in WV is suffering with CFS, I'd love to start a support group around here.
Thanks.
First you should not depend upon your local doctor to give such a diagnosis but maybe that is why she told you to find a specialist. Diagnosis is done by exclusion. Many doctors don't know much about it. You should travel out of state to some nationally recognized ME/CFIDS doctor to do $5000+ worth of testing to get real official diagnose. I'm assuming you have insurance. They could even give you treatment advice also. There is a balance test you could do yourself.
Second, you will likely need to travel to find a treatment doctor. The reality is that you may need a large team of the best alternative medicine doctors in the country to treat this disease. The disease effects so many things. An alternative is finding a functional medicine doctor who knows something about the disease. Insurance usually doesn't cover them.
I've had this disease for over 55 years and still there are a dearth of doctors who know anything about the disease. I live in central florida and I'd have to travel a hundred miles to find something even close to a doctor who knows this disease. I lived in massachusetts before and I needed to take a plane to get to a specialist. there may be a few more now than ten years ago.
Third if your financially strained, you will have to depend on advice here, inform yourself and consult with your local doctor who may give you bad advice. I'd find a ME/CFIDS specialist or an alternative heath doctor you could skype with for 15 minutes to minimize travel. Traveling is always difficult for sick people.
If you educate yourself - i know it's hard with the cognitive dysfunction of this disease - over time you could become your own doctor and use outside doctors sparingly.