Birdy:
I don't think that there is anyone here that hasn't asked this question.
I have been to many doctors, none that had the slightest idea of what was wrong with me, or what to do to fix it. I didn't get any relief at all until I began to study the problem myself. There are only a handful of doctors in the entire world that even understand the illness. Your best hope is to find a doctor that will listen to you and work with you.
Insurance is another problem. The few doctors that understand CFS probably can't get reimbursed enough by the insurance company to make it worthwhile to treat you. Insurance companies don't like to pay for "experimental" or unusual treatments or drugs.
Maybe there is someone out there in your area that knows a good doctor they can recommend for you. I am still trying to find a good doctor in my area of the country.
Depression is the answer that most doctors give when they don't have a clue, and don't want to spend any extra time with you. I went from doctor to doctor until I was fortunate to find one at the Mayo Clinic that was willing to work with me, and would listen to the ideas that I presented. It was a real battle all the way.
There are a large number of very knowledgeable people on this site that can be very helpful to you, if you are willing and able to educate yourself. I think that this is your best place to learn the things you need to know. Read what you can and don't be afraid to ask questions.
John
John, you expressed so well what I've experienced and feel too. It is good to hear you say this, as I get discouraged too by the uphill battle. I am in the process of switching doctors because I have moved--so having to try to educate and get this new doctor to work with me, instead of just taking the usual irrelevant or erroneous approaches. I need to just hang onto my "truth", as well as I can, and persist.
It will be interesting to see some day if the change in treatment of people with ME/CFS comes about through grass roots patients efforts, bottom up, or if it comes from scientific research and doctors, top down, as it is supposed to. Maybe it will indeed come from our "bottom up" efforts, so don't give up.
We work with the powers that we have--self care and truthful communication, respecting others too who don't know. I think my communication improves as I take into consideration those other people--doctors, friends and acquaintances--somehow conveying that I respect them and feel they are okay too, even when they don't know or understand or are even blocking my communication. Still I try.
This is quite a bridging function, isn't it? Identifying and expressing one's own reality which is entirely different from the expected one, while also relating well and considerately to someone else who is in a different version of reality.
It would be great, so ideal, if each of us could find a doctor who already knew, understood and could help. But in the meantime we have this other situation which is like trail blazing, bush wacking, and if we can do it without alienating doctors and others, we might turn them into team players who will start to be helpful, to join their knowledge and skills with us....That is what I hope for and work for.
Welcome, Birdy!
Sing
