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question re cfs/me

(3 Posts)
missisboot Wed 26-Feb-14 21:51:24

Am just in the process of getting diagnosed with ME. Symptoms are mainly chronic pain in joints and muscles, brain fog, night sweats.
Have been prescribed nortriptyline to help as had an allergic reaction to naproxen. I haven't yet started taking it as I feel that once I do I've kind of acknowledge d that I've got it rather than going that I'll wake up back to normal again.
Anyway, I digress. I just wanted to hear about other people's experiences about how quickly the symptoms can change. I've seen the Bells severity scale and I'd day I was at 50%. I struggle in to work (work 3 days a week) but then am in pain on my non working days and spend the weekends recuperating. Today I woke up and it took me about 5 mins to walk to the bathroom as I was in so much pain. Then at about 4pm it was like the pain and brain fog disappeared. Can it change this quickly. At lunchtime I cried as I couldn't cut up an apple but this evening I've been able to stand and wash up.

CFSKate Wed 26-Feb-14 22:00:54

Yes, IME it can change within the same day. You might just get a half hour of mental clarity some days. And the rest of the day in a fog.

www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

www.mefmaction.com/images/stories/Overviews/Canadian_ME_Overview_A4.pdf

missisboot Wed 26-Feb-14 22:03:25

Thanks Kate.
I'll have a look at your links.

How am I supposed to get through a day at work of our can change so quickly?

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