sam.d
Senior Member
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- 106
Hey guys this is my first post.
I post this here because for 3 years now I definitely have been having PEM flares that go on for about 20 days after I perform even the slightest exertion. That could mean walking longer than 10 minutes or carrying a heavy grocery bag. The flare starts gently after about a day and peaks at day 8 (always exactly the same and I can't explain this). During the flare I will have extreme irritability and mood swings, fatigue, lying in bed with chills and heavy brain fog. It's basically about the same as having the flu.
When I'm not in the flare I have relatively "normal" energy-levels and sleep. The only thing I do have chronically is heavy IBS-C, SIBO and leaky gut (which started very shortly after my first flares). I basically need to follow an extremely restricted diet (with zero carbs) and make sure to not over-exert myself to keep my body & mind stable.
For these past years I've only been looking into IBS, SIBO etc but never considered looking into ME/CFS because I always assumed you'd need to be chronically (i.e. always) fatigued, whereas I only have the heavy fatigue during flares and sometimes I go weeks while avoiding flares. Because of the randomness of the flares, however, I don't have a job anymore and I am at home on wellfare.
I now want to do anything I can to figure out what's wrong with me and have been to several doctors but my bloodwork always seems to come back fairly normal and my situation remains a big mystery to every doctor I've seen (safe for the diagnosis of IBS). Thyroid and auto-immune panels come back normal. I did have Epstein Barr virus some 15 years ago and Giardia infection 10 years ago.
Do I have ME/CFS or not in your opinion and how can I get a hard diagnosis for it?
thanks
Sam
I post this here because for 3 years now I definitely have been having PEM flares that go on for about 20 days after I perform even the slightest exertion. That could mean walking longer than 10 minutes or carrying a heavy grocery bag. The flare starts gently after about a day and peaks at day 8 (always exactly the same and I can't explain this). During the flare I will have extreme irritability and mood swings, fatigue, lying in bed with chills and heavy brain fog. It's basically about the same as having the flu.
When I'm not in the flare I have relatively "normal" energy-levels and sleep. The only thing I do have chronically is heavy IBS-C, SIBO and leaky gut (which started very shortly after my first flares). I basically need to follow an extremely restricted diet (with zero carbs) and make sure to not over-exert myself to keep my body & mind stable.
For these past years I've only been looking into IBS, SIBO etc but never considered looking into ME/CFS because I always assumed you'd need to be chronically (i.e. always) fatigued, whereas I only have the heavy fatigue during flares and sometimes I go weeks while avoiding flares. Because of the randomness of the flares, however, I don't have a job anymore and I am at home on wellfare.
I now want to do anything I can to figure out what's wrong with me and have been to several doctors but my bloodwork always seems to come back fairly normal and my situation remains a big mystery to every doctor I've seen (safe for the diagnosis of IBS). Thyroid and auto-immune panels come back normal. I did have Epstein Barr virus some 15 years ago and Giardia infection 10 years ago.
Do I have ME/CFS or not in your opinion and how can I get a hard diagnosis for it?
thanks
Sam
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