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any spoonies about? I seem to be relapsing with ME

(7 Posts)
HeyYouGetOffMyCloud Tue 01-Mar-16 17:54:20

I had severe ME starting in 2012 and have gradually recovered. I've been 90 - 99 percent for a good 18 months.

I've just had a virus which I had 4 days bed rest and the gradually did more activity. I went back to work although haven't cycled or run as I usually do. Although I felt better I still had a awful cough.

However last weekend I just felt much worse with aches, night sweats and general yuckiness.

I feel terrified of going back to bedridden which is where it all started. I've seen the ooh gp and he said could be viral, bacterial or post viral and I've been prescribed antibiotics and am on bedrest.

Does anyone have any reassuring tales or advice on how to cope and recover. If they are very negative then I'd kindly ask you didn't tell me. I'm a bit fragile.

I'm a bit out of practice but trying not to panic. Thanks

LittleLionHeart Tue 01-Mar-16 19:54:51

There has been a virus around that has done this to me, too. Sweats and cough all still normal and not ME-like id say. In a couple of weeks when you're grand again you'll have this in your arsenal of things you have beaten too, and you'll be more confident after the next cold, too. Taking a little longer to recover is still a-ok and not a relapse.

I have been in complete remission for coming up to three years after (too) severe ME.

HeyYouGetOffMyCloud Tue 01-Mar-16 22:07:38

Thank you Lion. That's very reassuring. It was the getting better then getting worse thing which frightened me most. I've decided to just completely give in and have snoozed most of the day. Which contrary to popular belief I always felt far too ill and wound up to do when I had ME.

Glad to hear you've recovered from ME too and thank you for replying .

maggiso Wed 02-Mar-16 00:36:42

It could be the bug I have had. I have what I thought was a slightly odd but mild coldy thing, got mostly better then got unwell again. I also have ME - but had been slowly improving over the years so was worried I was relapsing too. Did you have any particular regime such as pacing or supplements that helped you recover when you had ME? I think it is wise to treat yourself gently, (no pushing yourself too hard), rest and sleep, and try not to worry.Some bugs just do take a while to get over.

AnnieOnnieMouse Wed 02-Mar-16 01:08:47

Wow, well done on having recovered so well from severe ME! You must know all the things to do and not do, so at least you know how not to get worse, and then how to inch your way better.
I went down to about 25% normal 4 years ago, and am now about 60% for my age. Rest, rest, vitamins, etc, pacing and rest!
I hope you are able to stay off work for a sensible time, and cut out any unnecessary activities. Keep away from the trainers, and keep your heart rate less than 70% of the maximum for your age.

Sometimesithinkimbonkers Wed 02-Mar-16 02:20:20

Heyyou I wouldn't stress it just yet!!! Me and DH have had awful virus for about 6 weeks. DH came off his MS drugs in a bid to whack it on the head... He's still not right!!!! Back on the drugs (I'm a terrible nag) he has though found it went straight to his legs and even just bring upright was an issue.... Hopefully you'll crack it soon and be back to your kind of normal ... Hope that's not offensive .... How DH terms it ! thanks

HeyYouGetOffMyCloud Wed 02-Mar-16 03:57:01

Thank you all. Just dealing with another night sweats And insomnia so your replies are heartening.
Annie- my employer is great, so supportive, so that's a relief.

Sometimes - gosh 6 weeks! Hope you're both OK soon. Pre ME I had one for 5 weeks and was then fine.

I hate letting the kids down. The older dd has a Brownie thing she's desperate for me to be at. sad

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