Sorry that no one replied to your previous message. I went back and read everything that you wrote and have some suggestions. First off, please try to find an infectious disease doctor. I too struggled for years with the tests and different doctors telling me all sorts of things before I found the ID doctor. She immediatly checked me for Epstein Barr Virus, (you do this through blood), and said that my counts indicated that I was having a severe attack. Have you done any research or been tested for EBV? I highly recommend finding the ID doctor because they seem to understand EBV and CF better than most doctors out there. I was diagnosed with EBV almost eight years ago and I still hate going to any other kind of doctor because they all think that I have mono(which I test neg. for), or have no idea what EBV/CF really is all about.
I suffer from all the same symptoms that you describe. My joints ache and I get a lot of headaches. I am always tired, even after sleeping, and I suffer from depression as well. I am "fortunate" (I guess you could call it that), that most times I can control the EBV with diet, yoga, rest, and prenatal vitamins. I am not pregnant but the prenatals have more iron and seem to work better than other types of vitamins. You might want to check them out. I do have frequent relapses where I will get a sore throat, my glands will swell up and my throat will burn and hurt to swallow, and I also get very tired and achy. Most days it seems to be managable though.
I hope that you can find the answers that you are looking for and just know that you are not alone. You aren't crazy and eventually you will find out what is going on inside your body. I think having a name makes it a little easier to deal with. Check out what the web says about EBV and get tested if you haven't already.
Hope this helps...
Last edited by tootsiepopbreeb; 08-08-2006 at 11:34 PM.
I am confused, why would a person test negative for mono if they have EBV? I hope I am not showing great ignorance, but I thought they were the same.
I bought a book on CVS and "Tired of being Tired."
And, how would I find someone who is an infectious disease specialist? I mean, what are they called? I saw gyno, referred to rheumatologist and went to see internist just for tests. And, I wonder why no one is saying anything about an endocrinologist. So, if I start looking for specialist, what is one called that specializes in infectious disease.
And, still looking for CFS support group in Bham AL.
Although my thyroid reading was normal in February, the internist tested it himself and found the TSH to be 8.4. I was told normal is .85 to 5.
So, giving me Levothyroxine sodium.
I have been in bed for a day and a half with my eyes closed. Sssooooo tired. Feel like flu.
Here's what I think. I also have Neurally Mediated Hypotension. (that's two hypos for me, if anyone is counting: hypotension and hypothyroidism) Sorry, I digress. But, I think I may still have chronic fatigue syndrome. Someone on here (I am about to look) had both.
But, the hypotension, that is fainting reflex, is a problem between the hypothalamous and pituatary communicating with the heart and blood vessels. Hypothyroid is a problem of the thyroid gland, which responds to communication from the pituitary.
And, isn't most recent research indicating that chronic fatigue syndrome is a disorder of the immune system, which involves some of the same organs?
Now that I have been diagnosed with two of them, the two hypos, I think they are all connected. One leads to the others, or they are all caused by the same defect.
What do ya'll think? does your research or experience reflect the same conclusion?
I have CFS and very bad hypotension but the steroid florinF which is fludrocortisone (a steroid) as helped to raise my BP and makes me feel so much better...
CFS is a tough one with regards who should be your specialist as it covers so many parts of the body..it messes with the hormones, digestive sytem, can be cause by bacterias.parasites, it can cause gynological problems..ie with me it has led to endometriosis or the endometriosis has led to CFS but there is a definite higher incidence of Endo in those with CFS, blood pressure etc could come under a cardiologist....
So i recommend you find a dr who specialises in CFS. I went all the way to brussels (from the UK) to find my dr...he understands that all parts of the body are involved and treats my whole body as opposed to different parts as there is one cause but many symptoms all over the body