Hi Adrienne,
Welcome to HealingWell's CFS Forum!
Oh yes, this is a real illness! Many, many people throughout the world have been "diagnosed" with it, although it is called by different names in some countries. However since no cause has yet been found for it, and no really effective treatment has been found, many Drs are still pretending that is an excuse not to treat their patient's symptoms. And I can easily understand how, in a small community, there are no Drs who have much of an understanding of CFS. It is for all these reasons that I typically try to encourage people to choose a Dr with whom they have or may potentially develop a good working relationship, or rapport. In a good working relationship, there is room for a patient to complain about one or more symptoms, and to have them treated, no matter what others might call that group of symptoms.
You mentioned there are only 3 Drs available in your community, and that you're now seeing your 2nd? I was just going to suggest, if you're feeling uncomfortable with that 2nd Dr now, but might not want to give him/her up, without knowing whether the 3rd might be worse, you could just call the 3rd, say you're looking for a new Dr, and ask if he/she treats CFS. And I would just suggest this as a way of helping you to make a decision, if you're "on the fence" about it. But if you're not there yet, just remember it for the future.
Another idea, would be to consult a "specialist" in a larger community, who could recommend a treatment strategy, which your local Dr would follow. If any problems develop "along the way" your local Dr could contact the "specialist" by phone (or email, fax, etc), for special instructions. So consulting a Dr some distance from where you live, doesn't require frequent travelling.
In reading your list of symptoms, the first thing that strikes me, is I wonder if you have ever had a sleep study done. One interesting by-product of the increasing occurrence of CFS, is the discovery of a lot of sleep disorders which were previously believed to be unusual. A sleep study is when you go to sleep in a sleep lab for 3 to 5 nights in a row. They have you hooked up to all kinds of gizmos, to measure all the different brain waves and other things that indicate various sleep disorders. If you're diagnosed with a sleep disorder, and treated successfully, you might not need to have your other CFS symptoms treated (because they won't be so bad after you start sleeping better). It might not be done in your community, and you might have to arrange to have it done elsewhere, somewhere where you might have relatives or friends, where you could stay during the days. (Imagine going to visit friends or relatives out of town, but not having to put them out for overnights!)
If you want to look into it, make an appointment with your Dr. Explain that you think your symptoms might be caused by a sleep disorder, and ask where the nearest place is that you could have a sleep study done. And just take it from there. If you get a study, or if the Dr just wants to try different sleep meds, once you have that symptom under better control, then choose your next worse symptom. And again, just ask your Dr to treat it. This is actually how most of us who get treatment for CFS, get treatment. Almost no Drs specifically will treat CFS, since it can't be formally diagnosed. That's why, when we ask them to treat us for CFS, they give us such wild explanations. But if we just ask to have each symptom treated, one by one, we usually get some help.
Many people have been successful in getting their symptoms treated, by doing a little research of their own. As they learn about CFS and their own specific symptoms for themselves, they also will make a copy of articles they might have read, and give it to the Dr to read. Some might actually give their Dr a book on CFS, although I personally use articles. I've also referred my Dr to websites, on occasion.
If the sleep study idea doesn't work out, you might ask your Dr to try an antidepressant. Not that your symptoms are being caused by depression, but because for some reason, in some people, the right antidepressant can relieve a lot of symptoms. But it takes a bit of trial and error. And a lot of patience! It takes antidepressants between 3 to 6 weeks to start working, so you have to keep taking it for up to 6 weeks, unless you get side effects before that, which you can't tolerate. If that happens, you can try another one right away. Or else if you don't notice an improvement after 6 weeks, give up and try another one. Try as many as you have the patience to try, and if none are successful, just call it a good try, and move on to another potential treatment of another symptom.
Well I guess that's about all I can say for now. But please feel free to ask questions, and we'll have a go at answering! Take good care.
Brynn
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums