To the Board Re CFS
 

Sometimes I think I will never be able to get out of bed again. I am losing my movement abilities and now live more in my dreams - when I can sleep - than in the real world. I am alone and not to function is life-threatening. Docs do not seem to understand, and I am really too weak to get to one now anyway. This forum is a blessing. My dx is major depression among numerous medical problems, to include need for back surgery but bones too soft to hold screws. Started staying in bed to save on pain meds for back. Thanks for any thoughts. billie

billie, I understand.
You have a very serious illness that the majority of medical professionals just do not understand or even acknowledge , and like to think is just a psychological condition.
You need to find an 'educated' doctor, and this forum may be able to help if you indicate where you are. There may also be specific on-line groups dealing just with the illness.
The proper name is now M.E., Myalgic Encephalomyelitis, which is taken from the key symptom.
Fatigue as it is generally known is not a major symptom. Rest is VERY important, especially in the early stages. It can minimise the severity if done early enough.
It is vitally important that you get a correct diagnosis, as many illnesses share a vast number of symptoms, and you may in fact have something else.
Tests for M.E. are now available; CFS is a waste basket diagnosis, meaning they don't want to run proper tests, and it is meaningless.
My daughter has had M.E. for over 12 years, and is largely bed-bound, never leaves the house.
She runs a website and chat group for those able to use the computer.
Unfortunately many that she knows are too ill to do that, or use the phone. You sound like this.
She has done extensive research on all things related and about the illness, and is one of the best, if not the best, sites to go for advice and information.
Printing sections for your doctor to read would be a good idea.
Her's the link.
http://www.hfme.org/
I'd be happy to field any queries you have on it.
You may also be able to get an advocate to speak up on your behalf.
I was able to arrange that for two very ill ME sufferers in Australia recently. They needed help to get accommodation, and had no-one to do it for them.
I'm sure you would be able to get the same help. Look under advocacy in your area.
They would then be able to help find a useful doctor.
Where we are, in a large city, there are only two doctors who treat M.E. My daughter does phone consults every 3- 6 months.
She has found some treatments to be very beneficial, after a LOT of trial and error.
billie, there is help out there, and there are many others in your situation.
You may like to join my daughter's chat group, so that you won't feel so alone.