| Re: What does this sound like?
Archie,
Thing is, these symptoms can indicate a LOT of different things. If helps to know any history with your family, (like similar illnesses, endocrine problems - i.e. hypothyroidism or pituitary problems, chronic allergies/hayfever, etc). Unfortunately, your docs don't seem to be taking you seriously.
Have you talked to your parents about this? What do they remember about your childhood (since you say this has gone on at least 10 years). Did they notice any specific event (i.e. mono, flu, vaccination, trauma, etc) after which you became ill and never really recovered?
Things you may want to have checked (unless they already were) if you can find a willing healthcare provider:
1) Thyroid (not just TSH, also Free T4 and Free T3); and know that the lab reference numbers for TSH are often old - guidelines from specialists now are .3 - 3.0
2) Epstein Barr Virus - both IgM (acute/current infection), and IgG (antibodies to previous infection, and reactivation of old infection)
3) CMV - another virus
4) HHV6 - several types of herpes viruses (this does NOT mean genital herpes)
5) Allergy testing - allergies to substances (including food) can often cause problems like yours. An ENT or Allergy specialists can help decide which tests to run. Also, if you've noticed any differences based on what you eat, you might want to try an elimination diet. You can find how to do that in allergy books obtained through any bookstore.
6) Lyme disease - they will check by ELISA first but it's not an accurate test. Western Blot would be better (but even that is not very accurate). IGeneX in California has thorough testing, but many docs won't order it even if you pay for and get the kit through the mail. I wouldn't immediately jump to this test, but I certainly would look into it if all other tests come back normal. Especially if you live in an area with lots of ticks.
Suggestions:
Get a sympathetic healthcare provider! Ask friends, get your parents to ask their friends! Find someone who will listen and who will start ordering some tests for you.
Start keeping a "diary" or "journal" of your problems. Don't make it the focus of your life, but have a good record of what's happening, (at least every few months), so you can recognize changes in health and development or resolution of problems. This may help in a diagnosis later. If tests come back negative, start looking into the possibility of going to someone like a specialists in Rheumatology, CFIDS/FM, Lyme disease, etc. And always remember, not all docs are alike or have the same knowledge. One rheumatologist or infectious disease doc can tell you a particular condition doesn't exist in your area, and another may tell you it does and may test for it. You, unfortunately, have to be a wise and wary consumer these days. Find friends with parents in the medical profession, and ask to talk to them. Don't worry about looking silly to them - your health is important. Finally, get a tough outter shell (if you don't have one already). Folks with problems that are not immediately evident are often called hypochondriacs or psychsomatics by providers who simply don't know how else to diagnose them. Some providers get frustrated when the answer is not readily available. Don't let them throw you. Be polite but persistant; be understanding of their position on things, but wary (that they don't all know everything). And read and ask questions. As a last resort, if all else fails, you might go to some of the CFIDS books and read up on the supplements they suggest. Some of them might help you. I wouldn't necessarily do that immediately, because someone needs to figure out what's going on with you.
There could be other things not listed that could cause problems like you have. This list is not all inclusive and should not be considered medical advice or take the place of advice by a medical practitioner.
Hang in there and let us know how things go.
kali
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