Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 This is the really dark period of CFS - the beginning. That was by far the worst for me. You should know that you will improve, it may be very slow but it will happen. There are so many things that can help with CFS but for me at least it was partially function of timing - when the body is ready it will begin to respond to treatments. When its not it wont respond to anything. What a devastating disease. It is so difficult. what a wrenching adjustment. Its difficult but also important to just to try to slowly come to terms - at least for now - with a life that just does not fit your pictures. In a way though you're kind of lucky (!). Progress is being made; DeMeirLeir for example is hopeful that substantial progress in diagnosis (of subgroups) and treatment will be made in he next two years. Not long before Dr. Cheney had to have his operation he said he was 'on a very steep learning curve' with regards to CFS. He seemed to think, even if we need alot more funding that it was an exiciting time. I guess what I'm saying is that if you have to get it now is not the worst time. At least you didnt get it 20 years ago when no one had any idea what you had. I hope that if you can hold on for longer there may be some hope for the future. At least we may see more progress being made and that will be encouraging. I cant remember, maybe someone can help me, but the dallas/fort worth web site on CFS is very helpful and has an example of CHeneys treatment plan. It also sells several videos of Dr. Cheney. Hes very persuasive. They are a good learning tool and could be helpful with communicating with others. Theres also Dr. Teitlebaums web site. He has a computer program where you can for a relatively small fee give him your symptoms and he will prescribe different therapies. Of course, despite the controversy, CFS is a recognized disease; Social Security recognizes it and provides funds for those disabled by it. Over the next few weeks I am, hopefully, if I can get my computer fixed. open a web site. On it will be a place, if this all works out, for people to tell their story. I think that will be a good resource for those who dont understand this disease and for those who have it. I'm sure you;re aware that there are several books on this disease - Bernes gets really good press. Good luck, Please stay in communication. My heart goes out to you. Cort From: " compuab " <compuab@...> >Reply- > >Subject: New here - recent CFS diag - brain >fog/headache suggestions......thanks. >Date: Thu, 01 Jan 2004 02:27:47 -0000 > >I have a 24/7 brain swelling headache and massive brain fog that >came on 1 month after the birth of my 3rd boy - in Feb this year. > >Since then, I had a total dental revision - removed 9 amalgems - >done detox, lots of vitamins and special diets to no avail >whatsoever. I'm sure this is no suprise to any of you - as that's >how this nasty CFS disease seems to be. > >I am basically completely disabled, can't think much, drive, work or >do anything else. > >I need suggestions on any good docs in US, and any help to help my >family understand how a 'previous' engineering manager, runner, very >busy healthy Mom of 35 years could become so disabled so fast. > >I have tried so many antidepressants 'pushed' on me that 'just one >dose' sent my 24/7 headache & CNS into 'the super-crazys' that I >KNOW THEY WILL NOT HELP ME. > >Thanks for your replys- >Another one who has 'lost her life to CFS' (why live?) > > > _________________________________________________________________ Tired of slow downloads? Compare online deals from your local high-speed providers now. https://broadband.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 > In CFS ABA DeMeirLeir et. al. site pregnancy as one of the stressful conditions that makes people more vulnerable, at least temporarily to CFS. From: <cecelia@...> >Reply- > >Subject: Re: New here - recent CFS diag - brain >fog/headache suggestions......thanks. >Date: Thu, 1 Jan 2004 18:29:20 -0700 (MST) > > > > > >On Thu, 1 Jan 2004, compuab wrote: > > > I have a 24/7 brain swelling headache and massive brain fog that > > came on 1 month after the birth of my 3rd boy - in Feb this year. > >What type of doctor diagnosed you with CFS and were any tests done? The >only reason I ask is that there is something I remember reading about that >can happen during childbirth that affects I believe the pituitary gland. >I think it is called Sheehan's Syndrome (sp), and I think it can destroy >certain pituitary hormones in the process. I will look it up for more >info. > >margo > > _________________________________________________________________ Check your PC for viruses with the FREE McAfee online computer scan. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
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