Sometimes I hear people talk about the last time they were bedbound. I am bedbound now. My baseline is rolling pem and the pots is.... I dont have words. And I don't eat so I don't even know hoe bad the mcas is. My question is. Did someone here managed to get a little better or even a lot. And then crashed again?
The pem meltdowns are real. Yet they are never mentioned. I notice my care givers seems to think its more a mental health thing and less of a pem my brain is on fire thing. So I am looking for other sources than myself to show them and hope for some sort of understanding.
I just started and am in a really bad crash. I thought it was because I tried to wash myself but now I wonder if its the meds. I respond very sensitive to meds. The more severe I get the more sensitive I respond
Deeply in love with this polish!
For those who take it. Does it help you? I am sensitive to medication. How were the sideeffects for you?
Is anyone currently in the process of maid? How does it make you feel?
I have been stuck in pem for probably about a year now. I lay in bed in the dark now. 24/7. I dont have any sounds besides when someone comes for meds etc. There has not been any improvement only more steps back. How did you manage to get out of rolling pem?
I keep getting worse. I have very severe pem and I have no clue how long pots has been a problem too. All I know is that I can no longer go to the bathroom without nearly passing out. I drink water and sodium salts, tried electrolytes. Tried 1 beta blocker but gp doesn’t want to try others. I also wake up from spiked heartrate when I turn in my sleep. I’m at a loss
So far I only heard from people that the recommended starting dosage is already way too high and going up every 2 weeks too fast. Since this meds seems to cause such extreme reactions I was afraid and started very low. However I still got sleep paralysis, nightmares and couldnt stop crying for 2 days in a blind panic. So now I keep wondering should I start even lower or just let it be. It seems to help so many people. What if it could help me too.
I am heading towards 3 years now. Last 6 months in bed in the dark. No reading, watching things. No audio either. The days are long and painful. It seems I am stuck in PEM. Depression followed which is logical I think. But I am trying to find some sort of hope. I am very tired to endlessly try supplements and meds. So far it has still brought me to this bed and I am tired. My nervoussystem doesnt rest. Is there still a chance it will get better than this?