Search results

@JamieS, Yes, this is exactly how it is for me. Optimal is up to 4 hours in bed, then go back to activity. If more than this, I just get worse and worse. But getting up is hard, so it is torture. I thought that once I have no school I'll get better because will have more energy/time - wrong...

Also, so many times I feel like I am dying .. but then when I decide to get up, go out, after 5 minutes I feel great (for CFS person :) ), smile, laugh, all good, energetic... this is a real Torture Mind-Fuck Disease..

Same happens to me recently, I felt better - went roller skating, then had severe mental PEM attack later. One day I went out 3x in a day, which happens rarely lately, and again that night severe mental attack. I never had mental attacks and the skating thing also happens rarely. SO had both...

Absolutely. I didnt yet measure OI, but i lay whenever possibly I can lay, although I dont feel much drain from sitting (when i socialize). I am positive for 8/9 CellTrend, some are 7x increased, think this is good lead. How long it takes for your 'deconditioning' to occur? I was best...

Yes for me it doesnt give PEM, when I experimented with treatments I had first time in life attacks of such mental PEM, i def would recognize it. It is hell. I probably spontanously avoid mental activities that do cause PEM for me, I can not focus for long time and postpone it when I...

I'm sure this is not the case. I had this situation at least 100 times. I feel 1st day need to rest, that's okay, 2nd day is totally depending on my choice and my obligations, when I have to go, then is best, it is pacing at my best level. When I dont go, it gets worse 3rd day. So i did both...

I am nonstop reading, chatting, watching movies. I never ever rest my brain (although I have also ADHD -so not very productive). But I didnt have ever problems with that. Whenever I get up from couch and go for a walk (if i'm crashed from too little activity), it gets better fast. So I...

Hello I'm trying to figure out how my ME/CFS affects me, it is so complex. I noticed that each time when I fall into a trap of staying home 2 days in a row, my fatigue gets worse. 3rd or 4th day even worse. When I manage to snap out of it, then it gets better. Of course this would be ideal -...

So yesterday I woke up at 3 pm (which veryyyyy rarely happens last 1,5 year since I managed to make my non-24 back to Delayed, and then even better to 0am-2am sleep time, for last 2,5 months). Thing is, my brain and energy was best yesterday when I woke up at 3 pm. I was so sad. Because this...

Vasoactive intestinal peptide, CIRS -chronic inflammatory response syndrome aka biotoxin illness... mold... ya know Shoemaker guy.

I have circadian sleep disorder. it was delayed phase from 0-19 yrs, then 19-29 yrs was non-24 hour sleep wake, was hard to not 'cycle' , days last more than 24.. approx 25 hrs... then with treatments I managed to get it back to delayed last 1 year.. even at times it normalized But have no...