Fluffybunny, I am so sorry for the things you are going through and at such a young age. I wasn't diagnosed with CFS & Fibromyalgia until later in life. It certainly sounds like CFS to me & possibly Fibro. Has your Doctor done the tender points test on you for Fibro? Both of these illnesses are dx'd by excluding everything else because they both can mimic so many other diseases. That is why all of the blood tests. Ask your Doctor if she has checked for auto-immune illnesses, I think she probably did but just double check.
If you like your Doctor & don't want to change then have her refer you to a Rheumatologist. I was dx'd by two, one for the Fibro & one for the CFS, when you make the appointment make sure the Rheumy believes in CFS. Since you have insurance this is the time to get all of your tests done & get a diagnosis. If you don't think your doctor is doing a good enough job or if she doesn't listen, by all means get a new one. Now is the time to be proactive with your illness, don't wait until you have no insurance.
With CFS you have to pace yourself, you have a limited supply of energy & our bodies don't re-energize by resting. How do you sleep? You must get good sleep to combat the illness so talk to your doctor about medications or better yet supplements that aid in sleep. Use your energy wisely, go to classes & try to have some fun with your friends, if at all possible but don't expect to be able to do all you used to.
I would go ahead & get an appointment at the CFS Clinic. In the mean time do all you can, like asking questions on this forum, read all you can find on the subject & get a diagnosis. Many soft & gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips
I have 4 children & 7 grandchildren.
As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11