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Chronic Fatigue Message Board


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Re: How I improved
Mar 22, 2012
I don't want to be pessimistic, but it'd be interesting to see how long you stay improved. The fact that you still do crash is possibly an indication you're helping your body deal with the chronic fatigue (which is a good thing) but not curing it. I'm not posting this to take away from your achievement, just to offer my experience. It seems CFS can be a very individual thing.... what works for one person could have no effect with another, or maybe make another worse.....

I'm 47, I've had chronic fatigue since I was in my early teens. I've tried lots of things. I'm convinced sometimes change in itself can make a short term difference, especially a big change because it "shocks" your body. I remember a radical diet change which initially made quite a difference years ago (although it wasn't the cure) but after a while I stuck to it less and less. A few years later, I tried it again and felt nothing.... it was almost like my body said "yeah, been there, done that".

The doctor I now see for my chronic fatigue (he prescribes me either dexamphetamine or modafinil to give me the energy I wouldn't otherwise have) once told me a story. He said he's been treating chronic fatigue patients for over 20 years. He told me there's two types of sufferers, those who are perfectly healthy one day and wake up exhausted the next, and those for which the chronic fatigue comes on very gradually, over months or years.
According to him, the first group can overcome it if they do the right thing (diet, exercise and rest etc), while the second group have got it for life. I am, depressingly, in the second group. Several times I've picked up considerably after trying various things, change in diet, exercise, even finally sorting out a back problem. The last one turned out to be the cause of my breathing and digestive problems and a bigger contributor to how tired I got after eating than the CFS itself. Which has often made me wonder if CFS is generally nothing more than being very tired, but having CFS stops your body from dealing with other causes of ill-health which wouldn't effect a "normal" person too much, or maybe not enough for them to even notice something's not quite right.
A few times I thought I'd found the cure, but it didn't last. Unfortunately by the time you've had chronic fatigue as long as I have you've got nothing left to keep pushing through it. At least I don't, not after 30 years. If it wasn't for the dex/modafinil I take now I think I'd just go to bed and stay there for the rest of my life.

My doctor's main theory on chronic fatigue (and sometimes I think he's nailed it, while other times I'm not so sure), is chronic fatigue sufferers have something wrong with their sleep, which doesn't give them the energy it should. After a while everything else starts to slow down (brain and memory as well as your body) and you become susceptible to getting sick etc, exactly as you would if you were a healthy person who deprived themselves of sleep on a regular basis. I do know I generally always wake up feeling exhausted. Ironically if I'm going to feel anywhere near normal (without taking dex or modafinil) it's probably going to be towards midnight, and who wants to go to bed when they feel okay, knowing they'll wake up feeling like crap? It's supposed to be the other way around.....

Anyway, as I said I'm not trying to take away from anything you've achieved, just offer some alternative input. I could prattle on about my CFS experiences for days.... the diets, the exercise regimes, the self medicating.... none of which are probably a bad thing.... except of course the self-medicating (drugs and alcohol) but for me I do know dexamphetamine or modafinil makes life bearable. In fact pretty much normal. I still experiment with different diets and I'm about to embark on a new exercise routine, but I'm no longer relying on them to cure me any more, which is in itself quite a relief. I'll admit though, even after all this time something (crazy) in my brain keeps telling me I'm going to get over CFS one day...... why I've no idea, but maybe some part of my brain knows something the rest of me doesn't.... I can only hope.





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