Can anyone help me to understand the condition I have? It doesn't make sense to me, that I am in constant pain, and always so tired that I lose touch with all that's going on around me, and I drift in and out of sleep, all the time. It isn't life, it's an existence that I barely know about.
My blood tests always show raised ESR/CRP, yet this is never really explained to me, either. I have one infection after another, almost continuously. Yet, it doesn't seem to interest my doctor. They just repeat the blood tests every few weeks, and keep issuing the tablets. At one time, I was having oramorph for the pain, but fortunately now, I am able to steer clear of it. I don't know why I have this condition, or how to get over it. I am just too tired to work it out. My concentration is zilch, and my memory obliterated, so what am I to do, to get back to the old me, not the ME getting hold of me. My hands & feet burn, and they're so unbelievably painful, with the ache inside like a drill boring holes in my bones/muscles. How have I got this condition, and why? Please tell me, somebody. Thanks.
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replied February 9th, 2011
there is no quick fix or drug that is remotely helpfull for this dissorder, i have had it for about 40 years and it gets worse every year, all i can say is rest , rest , rest, that is the only thing that has helped me
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replied February 10th, 2011
Thanks donblue, for letting me know I'm not the Only One feeling this way! I've had this since 2006/7 and knowing that you've had it for around 40 years makes me feel silly at my mere 5 years. How do you cope with continuously resting, and having no life, cos I'm really struggling with this?
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replied April 5th, 2011
Hi Thistle127,

I'm in my 7th year of living with CFS. Though my symptoms are mostly different from yours, the Fatigue part is similar. I've had many ups and downs over the years, i.e. in a bad week, I am awake max. 3 hours per day and on good days I manage up to 12 hours.

I personally find PACING to work best for me. That involves listening to your body real closely and resting heaps. The main task is to avoid overdoing it and crashing, which takes weeks to recover from. Also useful is looking at your diet. Eating healthy, lots of vegetables and little sugars makes a difference.

In terms of coping, I'm lucky to be surrounded by very caring family and friends. They help me through my darker moods and grief. Also, if you haven't already, there's a Documentary on Chronic Fatigue by Kim Snyder called "I remember me". I found it sad but also inspiring. You can find it on youtube.

Also, what I think might help with coping; I read in another forum about Free Online Support Groups for ME / CFS being offered
Good luck and your not alone!
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