Hi Deb, I hope I can help you find out what illness you really have.
Did you follow the link in my previous post? There you will find it all clearly explained, with both long and short versions available-some ill people can't spend time reading a lot.
A syndrome is just a concurrence of symptoms. It doesn't mean anything else.
The misdiagnosis of CFS may be a convenient one to give when your doctor doesn't want to pursue your illness with tests etc, but it doesn't help you, and in fact may be stopping you from getting a proper diagnosis and hopefully treatment.
Don't accept CFS-it doesn't exist-a syndrome is not an illness, just a collection of symptoms that may occur together in some form.
You need to have a variety of tests done-blood, heart etc. You may have serious allergies or dietary problems, chemical sensitivity-who knows.
But you must take charge yourself and not just leave it up to a doctor who hasn't studied these types of illnesses.
Unfortunately you may be in a murky area from a medical viewpoint, so you need to find a knowledgeable and helpful doctor. They can be hard to find.
I have lived around this type of illness for over 10 years, so understand your situation.
Please read some of the articles in the link that I posted, and see what you can do to find out just what is making you ill.
This quote may help you:
"M.E. is a clearly defined disease process. CFS by definition has always been a syndrome. Although the authors of these 'CFS' definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable."
Dr Byron Hyde