I’m new to being very severe, so I’m honestly curious, for people that have been stuck in this for years, what keeps you going?
When I was moderate I could still play games, use my phone, distract myself, listen to music and go for small walks. (Enough for me to not go insane). Now I can do nothing and still trigger PEM. It feels like being stuck in the deepest pit in hell. Absolute torture.
I’ve lost almost all function in just 1 month. Full body aches, migraines, tinnitus. I can’t walk, use my phone, eat, drink, or shower without crashing.
Just a month ago I could still force myself to do these things without triggering PEM. Now I’m progressing toward extremely severe because I’m stuck in rolling PEM 24/7. The worst part is that pain itself is a PEM trigger for me, and the pain is permanent.
Has anyone here gone from very/extremely severe back to moderate? Is that even possible? It feels like once you cross this threshold, it’s just over and you enter this nightmare where literally everything becomes a PEM trigger.
I’m genuinely terrified and suicide is the only thing going on in my mind. The worst thing that could happen.. happened. I just want to die, right now.
I have ME/CFS, and I progressed to very severe because chronic pain keeps causing constant PEM (Post-Exertional Malaise). Basically every time my body gets pushed beyond its limit, the disease worsens. The problem is that the pain itself has become the exertion.
Right now I can’t do anything other than lie in bed and stare into the dark. Even using my phone causes PEM and makes everything worse. I can barely walk, eat, or take care of myself anymore.
The nerve pain keeps my nervous system trapped in severe stress and sympathetic activation, which continuously worsens the ME/CFS. I went from moderate to very severe in under a year purely because of pain. Pain medications do NOT work. To treat the pain I would need PT and treatment in another country, both of which I cannot do because the exertion would worsen my ME/CFS even further.
I live in complete solitary confinement. Because the pain never stops, I cannot relax, and because I cannot relax, the disease keeps progressing worse and worse. The fatigue from ME/CFS is so extreme that I genuinely don’t understand how my body is even still breathing, yet the pain keeps my system locked in a wired state. It feels like I’m constantly being injected with adrenaline just to stop me from passing out from the torture.
This feels like inhumane torture. A level of suffering so severe that even escaping it feels physically impossible. No energy, no relief, no real treatment available, just being trapped between unbearable exhaustion and unbearable pain in what feels like one of the most medically hopeless situations imaginable.
I want to get MAID. I want to die. No one should endure this level of suffering.
Treating ME/CFS requires radical rest, but I cannot rest while in pain, making the condition effectively permanent. I cannot treat my pain due to ME/CFS, so I’m stuck in a paradox.
Last week I got Covid after a doctor appointment for my other condition. I didn’t even wear a mask because I hadn’t been sick in years, and now I feel incredibly stupid for not taking proper precautions. Since then, every symptom has become like 10x worse. I completely crashed in every way, and now I just sit here full of regret.
I was already in rolling PEM for months, so maybe I would’ve become this severe eventually and Covid just pushed me there faster, but I still feel so angry at myself.
But also.. how am I supposed to live like this? Even if I somehow magically improve, am I supposed to wear a mask literally everywhere forever? Family gatherings, friends, every public place? Never go to a bar or party again? Basically never leave my room again, EVER? It feels like even in the best-case scenario, I’m destined to rot in this room permanently because any interaction with other humans risks making me even worse with an infection. And you can even still get sick while taking precautions. I’m so fucking done with this. I feel imprisoned by this entire thing. Even in the BEST case scenario, my life will NEVER go back to what it was.
I’ve been stuck in rolling PEM for almost a year now. The PEM is being constantly triggered by nerve pain that never stops and is extremely difficult to treat. The treatment itself requires PT and getting help outside my country, both things I can’t do because of the PEM and crashes.
At this point I’m looking at my situation from a purely clinical standpoint, and it feels like I’m completely fucked. The pain keeps triggering PEM. I went from moderate to very severe in under a year. What happens next year? Will I even be able to move? What actually happens when PEM becomes constant and never-ending for years?…
I can’t recover while I’m stuck in PEM. I can’t stabilize because of the pain. I can’t properly treat the pain because of the ME/CFS. No pain medications work. No understanding from doctors or family. Nobody seems to know what to even say to a situation like this, and it feels as objectively hopeless as it can get.
I can’t even truly radical rest, because resting itself isn’t possible when the pain never stops. Pacing doesn’t even feel like an option to me when I’m in PEM no matter what I do.
So this is it? This is really as hopeless as it gets? I’m looking for answers while knowing there is none. I don’t want to be alive. I know there’s nothing to do in my situation. If I wasn’t in pain, maybe I would have had a chance.
I’ve been stuck in constant rolling PEM that never ends. Has anyone here had rolling PEM that’s lasted over a year?
The problem is the pain itself I feel keeps my body locked in alarm mode and constantly triggers PEM. Because of that, I’ve been forced to try to treat the pain. I went to a specialist in another country while already severe, and kept going to multiple appointments. From that I recently got Covid while already in a prolonged crash. Now I’ve become so severe I can’t even use my phone. Now I deeply regret trying to treat the pain, but what else could I have done?
At this point it feels like MAID is the only way out (probably impossible to get). The pain keeps me trapped in rolling PEM. The pain condition itself is only treatable with PT and seeing specialists abroad, which I can’t do because of the PEM. I went from moderate to very severe, and it feels like there’s no way back. People stay very severe for years even without pain, so having this level of pain on top makes it feel practically impossible to heal. On top of that, autism amplifies my brain’s response to uncomfortable sensations like pain. It’s just objectively hopeless.
And on top of everything, I live with a family that doesn’t believe me and might kick me out soon, while I can barely even walk.
I can accept a life being moderate, but not very severe. Laying here in my bed with no stimuli, only experiencing pain, is simply inhumane torture. Did someone here recover from very severe to moderate?
I pushed myself to go to a doctor appointment for my other condition while already being severe and in extreme PEM. Because of that appointment, I now have Covid and crashed x1000. I can’t even use my phone without PEM and adrenaline right now. I’m honestly terrified.
I’m in the worst rolling PEM I can imagine and have been bedbound for such a long time. It would be nice to have someone in a similar situation.. someone where we could support each other with and check in on one another. Or just distract each other.
I’m 23, a guy from Northern Europe. Personality-wise I’m quite introverted and introspective. I used to be into deep conversations, spirituality, gaming, night walks, films, and psychology. Right now I mostly just bedrot.. feel free to dm
I was mild/moderate last year. In just under 11 months, I’ve progressed to severe/very severe because I’m stuck in constant PEM, triggered by chronic pain. The pain is constant and currently untreatable..no pain medications seem to work either.
Is it even possible to reduce or stop PEM while you’re in ongoing pain? I try to stay optimistic, but this feels like one of the worst combinations of conditions that exists. It honestly feels like I’m doomed, like my life is actually objectively over. If I can’t stop the PEM, which I can’t, because of the pain.. it feels like I’ll just keep getting worse and worse until I can’t even move.
(The chronic pain condition is separate from CFS, but because of the fatigue, I can’t even do the physical therapy that’s supposed to help.)