EDMESH
1,611 members296 posts

Do I have CFS?

Hi I've been struggling with my health for a couple of years now. It started off as a cold every month to for the last 6 months it's flu like symptoms virtually every day. It's not a runny nose or sniffles etc but I just feel really unwell, kinda viral unwell. When it hits me it wipes me out for about 10 minutes but after that I just feel rubbish. I don't get the debilitating fatigue I hear about with CFS/ME sufferers, mine is a general feeling of malaise with will last till I go to bed. I wake up the next day feeling refreshed and ready for the world again but then it comes on again and that's it on for The day again. Some days it comes on from doing nothing at all. Others I can be active till about 4pm and then it comes on again. I've had every test going and the only thing that is off is my thyroid which is low. The doctor has put me on thyroid medication but still in my mind is the CFS thing. For people who have CFS what does the fatigue feel like and what are your thoughts about my situation? Life is very hard at the minute, especially not knowing

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There is very little advantage to being diagnosed with ME/CFS because that means they stop looking for any other issue and you are just left to manage as best you can, so it is not I diagnosis I would chase. The classic indicator for ME/CFS is that it is worse post-exertion but exertion doesn't just mean physical it can be mental or emotional yep being really happy can make you feel rubbish. You can also run into the issue that it is not what you did today that you are responding to but stuff you did 3 days ago. The lag issue can make it really difficult to understand what is actually happening (there is science behind this it is to do with how long the body takes to make ATP) The only test that could give you a really good indication is the double CPET test that the Workwell foundation in California run. I would say start pacing and see if it helps. The Lapp-Campbell website explains the basics of pacing treatcfsfm.org as do loads of other places. If you are working you may need to take some leave to be able to concentrate on this.

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Thankyou

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So it's more the PEM rather than the fatigue?

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Yes PEM is key to ME. I have to say you describe the malaise bit very well, the constant flu like feeling without the runny nose etc and constant colds. I hope you find an answer and with luck it will be something different :)

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