u/Financial_Owl8105

I have severe ME/CFS and have been bedbound for a long time. I was already severely ill and in a prolonged crash before the recent medication problems.

I was taking **40 mg Gerodorm (cinolazepam — NOT clonazepam)** and had planned to taper off benzodiazepines gradually.
I had actually started doing better with the taper and was hoping to be off benzodiazepines by the beginning of the year.

Then, during a period of extreme stress, I had an overdose. After that I returned to 15 mg cinolazepam, but my condition became much worse. I then tried adding **5 mg diazepam**, hoping it would help with the taper, but instead I seemed to have a very bad reaction. I developed severe akathisia, itching, agitation, palpitations and an overwhelming feeling of being permanently stuck in fight-or-flight. NONSTOP
HEART POUNDING LIKE ITS DANGER, my whole body is moving!

I have now been taking diazepam for about two months, but I feel that it only makes me worse. I am extremely sensitive to medication and stimulation, and I feel as though my nervous system is completely destabilised.
I am now down to **10 mg cinolazepam** and I am struggling with severe symptoms: constant heart pounding, extreme sensory sensitivity, inability to sleep properly, fragmented sleep, severe head pressure, profound weakness, digestive problems and difficulty eating.

I am already bedbound because of severe ME/CFS and feel as though I am in a continuous crash.
I don’t have a doctor who understands my ME/CFS or benzodiazepine taper. My GP originally prescribed the medication but has little understanding of my situation, so I feel that I have to manage the taper myself.

I am terrified that I have made everything worse by adding diazepam, especially because it seems to cause a paradoxical reaction in me. I desperately want to get off benzodiazepines, but I also cannot keep living in this constant state of withdrawal-like symptoms, severe autonomic activation and fight-or-flight.

I am trying to understand whether what I am experiencing could be severe benzodiazepine withdrawal, a severe ME/CFS crash/PEM, or both happening at the same time.

Could this be possible? Please some advice! :((

Could this be possible? Please help :)

I have severe ME/CFS and have been bedbound for a long time. I was already severely ill and in a prolonged crash before the recent medication problems.

I was taking \*\*40 mg Gerodorm (cinolazepam — NOT clonazepam)\*\* and had planned to taper off benzodiazepines gradually.
I had actually started doing better with the taper and was hoping to be off benzodiazepines by the beginning of the year.

Then, during a period of extreme stress, I had an overdose. After that I returned to 15 mg cinolazepam, but my condition became much worse. I then tried adding \*\*5 mg diazepam\*\*, hoping it would help with the taper, but instead I seemed to have a very bad reaction. I developed severe akathisia, itching, agitation, palpitations and an overwhelming feeling of being permanently stuck in fight-or-flight. NONSTOP
HEART POUNDING LIKE ITS DANGER, my whole body is moving!

I have now been taking diazepam for about two months, but I feel that it only makes me worse. I am extremely sensitive to medication and stimulation, and I feel as though my nervous system is completely destabilised.
I am now down to \*\*10 mg cinolazepam\*\* and I am struggling with severe symptoms: constant heart pounding, extreme sensory sensitivity, inability to sleep properly, fragmented sleep, severe head pressure, profound weakness, digestive problems and difficulty eating.

I am already bedbound because of severe ME/CFS and feel as though I am in a continuous crash.
I don’t have a doctor who understands my ME/CFS or benzodiazepine taper. My GP originally prescribed the medication but has little understanding of my situation, so I feel that I have to manage the taper myself.

I am terrified that I have made everything worse by adding diazepam, especially because it seems to cause a paradoxical reaction in me. I desperately want to get off, but I also cannot keep living in this constant state of withdrawal-like symptoms, severe autonomic activation and fight-or-flight.

I am trying to understand whether what I am experiencing could be severe benzodiazepine withdrawal, a severe ME/CFS crash/PEM, or both happening at the same time.
It feel like brain damage, its not normal at all this constant sympotms. Its driving me insane. Im gonna have a heart failure or something. My brain is fried.
Im like this from months, no relief! Sleep almost non existent, maybe 3-4h but with vivid dreams.

Could this be possible? Please help :)

I have severe ME/CFS and have been bedbound for a long time. I was already severely ill and in a prolonged crash before the recent medication problems.

I was taking **40 mg Gerodorm (cinolazepam — NOT clonazepam)** and had planned to taper off benzodiazepines gradually.
I had actually started doing better with the taper and was hoping to be off benzodiazepines by the beginning of the year.

Then, during a period of extreme stress, I had an overdose. After that I returned to 15 mg cinolazepam, but my condition became much worse. I then tried adding **5 mg diazepam**, hoping it would help with the taper, but instead I seemed to have a very bad reaction. I developed severe akathisia, itching, agitation, palpitations and an overwhelming feeling of being permanently stuck in fight-or-flight. NONSTOP
HEART POUNDING LIKE ITS DANGER, my whole body is moving!

I have now been taking diazepam for about two months, but I feel that it only makes me worse. I am extremely sensitive to medication and stimulation, and I feel as though my nervous system is completely destabilised.
I am now down to **10 mg cinolazepam** and I am struggling with severe symptoms: constant heart pounding, extreme sensory sensitivity, inability to sleep properly, fragmented sleep, severe head pressure, profound weakness, digestive problems and difficulty eating.

I am already bedbound because of severe ME/CFS and feel as though I am in a continuous crash.
I don’t have a doctor who understands my ME/CFS or benzodiazepine taper. My GP originally prescribed the medication but has little understanding of my situation, so I feel that I have to manage the taper myself.

I am terrified that I have made everything worse by adding diazepam, especially because it seems to cause a paradoxical reaction in me. I desperately want to get off, but I also cannot keep living in this constant state of withdrawal-like symptoms, severe autonomic activation and fight-or-flight.

I am trying to understand whether what I am experiencing could be severe benzodiazepine withdrawal, a severe ME/CFS crash/PEM, or both happening at the same time.
It feel like brain damage, its not normal at all this constant sympotms. Its driving me insane. Im gonna have a heart failure or something. My brain is fried.

I have severe ME/CFS and have been bedbound for a long time. I was already severely ill and in a prolonged crash before the recent medication problems.

I was taking 40 mg Gerodorm (cinolazepam — NOT clonazepam) and had planned to taper off benzodiazepines gradually.
I had actually started doing better with the taper and was hoping to be off benzodiazepines by the beginning of the year.

Then, during a period of extreme stress, I had an overdose. After that I returned to 15 mg cinolazepam, but my condition became much worse. I then tried adding 5 mg diazepam, hoping it would help with the taper, but instead I seemed to have a very bad reaction. I developed severe akathisia, itching, agitation, palpitations and an overwhelming feeling of being permanently stuck in fight-or-flight. NONSTOP
HEART POUNDING LIKE ITS DANGER, my whole body is moving!

I have now been taking diazepam for about two months, but I feel that it only makes me worse. I am extremely sensitive to medication and stimulation, and I feel as though my nervous system is completely destabilised.
I am now down to 10 mg cinolazepam and I am struggling with severe symptoms: constant heart pounding, extreme sensory sensitivity, inability to sleep properly, fragmented sleep, severe head pressure, profound weakness, digestive problems and difficulty eating.

I am already bedbound because of severe ME/CFS and feel as though I am in a continuous crash.
I don’t have a doctor who understands my ME/CFS or benzodiazepine taper. My GP originally prescribed the medication but has little understanding of my situation, so I feel that I have to manage the taper myself.

I am terrified that I have made everything worse by adding diazepam, especially because it seems to cause a paradoxical reaction in me. I desperately want to get off benzodiazepines, but I also cannot keep living in this constant state of withdrawal-like symptoms, severe autonomic activation and fight-or-flight.

I am trying to understand whether what I am experiencing could be severe benzodiazepine withdrawal, a severe ME/CFS crash/PEM, or both happening at the same time.

TDLR - until how can the body survive like this? Someone else the same? :(

**Summary: I feel like I’ve pushed my body far beyond what it could tolerate, and now I’m trapped in relentless crashes, severe autonomic overactivation, profound sleep dysfunction and malnutrition, with no ability to reach even a stable bedbound baseline.**
I feel like I’ve caused too much damage.

My illness started 3 years ago. Instead of resting and pacing, I kept pushing myself. I kept working through crashes because I thought that if I just pushed a little more, eventually I would get to a place where I could rest and recover. I didn’t listen to my body and I didn’t pace properly, and I kept pushing until I completely broke down.

Before, it was mostly **push-crash**. Now I feel like I’m trapped in **crash after crash after crash**, and I can’t find my way out.

I’ve even fainted and had seizure-like episodes from stimulation. My nervous system feels completely overwhelmed by even very small amounts of stimulation.

I don’t even know how I’m supposed to pace anymore when I’m already in a crash and then immediately go into another crash. **How am I supposed to pace when even lying down feels like exertion?**

I’m not sleeping. I’m stuck in adrenaline. My heart is pounding, my brain is racing, and my whole body feels like it is permanently switched into fight-or-flight.
When I do manage to sleep, it’s fragmented into 3–3 hour periods with vivid dreams. I wake up feeling like I haven’t rested at all. There is **NO rest-and-digest, no homeostasis, no feeling of my body ever switching off.**

My body never calms down. Everything triggers it.
If I manage to sleep for a little while, I wake up feeling like I’m **-10,000 below baseline**. I don’t even want to move because the moment I move, the adrenaline starts again and my heart begins pounding.
I’m becoming malnourished. I’m losing my hair. I can’t even reach a stable bedbound state. I’m already lying down and resting, but my body still feels like it is exerting itself.

I feel like I’m getting weaker and weaker, and I don’t know how I’m supposed to recover when I can’t even get my body into a state where it can actually rest.
It has been almost **one year of this severe state**.
I haven’t seen anyone else who is this severe. I keep wondering if there is another way for the body to heal, because I genuinely don’t know what else I can do.
I know my body. I know myself. And I feel like this is severe ME/CFS, and that I have pushed myself far beyond what my body could tolerate.

I don’t know what to do anymore. I don’t even know what normal sleep feels like anymore. Benzos don’t help either — I’m starting to have paradoxical reactions to them.
I’m starting to give up because it is simply too much suffering.
Bedbound state would be a vacation for me! Without symptoms. Not survival.

And the worst part is that I keep blaming myself. I keep thinking that this is all my fault because I didn’t listen to my body earlier, I didn’t pace, and I kept pushing through crashes.
It feels like I did too much damage and that now it’s too late.

I feel like my body is going to give up, and I don’t know how I can keep fighting like this for years.

Summary: I feel like I’ve pushed my body far beyond what it could tolerate, and now I’m trapped in relentless crashes, severe autonomic overactivation, profound sleep dysfunction and malnutrition, with no ability to reach even a stable bedbound baseline.
I feel like I’ve caused too much damage.

My illness started 3 years ago. Instead of resting and pacing, I kept pushing myself. I kept working through crashes because I thought that if I just pushed a little more, eventually I would get to a place where I could rest and recover. I didn’t listen to my body and I didn’t pace properly, and I kept pushing until I completely broke down.

Before, it was mostly push-crash. Now I feel like I’m trapped in crash after crash after crash, and I can’t find my way out.

I’ve even fainted and had seizure-like episodes from stimulation. My nervous system feels completely overwhelmed by even very small amounts of stimulation.

I don’t even know how I’m supposed to pace anymore when I’m already in a crash and then immediately go into another crash. How am I supposed to pace when even lying down feels like exertion?

I’m not sleeping. I’m stuck in adrenaline. My heart is pounding, my brain is racing, and my whole body feels like it is permanently switched into fight-or-flight.
When I do manage to sleep, it’s fragmented into 3–3 hour periods with vivid dreams. I wake up feeling like I haven’t rested at all. There is NO rest-and-digest, no homeostasis, no feeling of my body ever switching off.

My body never calms down. Everything triggers it.
If I manage to sleep for a little while, I wake up feeling like I’m -10,000 below baseline. I don’t even want to move because the moment I move, the adrenaline starts again and my heart begins pounding.
I’m becoming malnourished. I’m losing my hair. I can’t even reach a stable bedbound state. I’m already lying down and resting, but my body still feels like it is exerting itself.

I feel like I’m getting weaker and weaker, and I don’t know how I’m supposed to recover when I can’t even get my body into a state where it can actually rest.
It has been almost one year of this severe state.
I haven’t seen anyone else who is this severe. I keep wondering if there is another way for the body to heal, because I genuinely don’t know what else I can do.
I know my body. I know myself. And I feel like this is severe ME/CFS, and that I have pushed myself far beyond what my body could tolerate.

I don’t know what to do anymore. I don’t even know what normal sleep feels like anymore. Benzos don’t help either — I’m starting to have paradoxical reactions to them.
I’m starting to give up because it is simply too much suffering.
Bedbound state would be a vacation for me! Without symptoms. Not survival.

And the worst part is that I keep blaming myself. I keep thinking that this is all my fault because I didn’t listen to my body earlier, I didn’t pace, and I kept pushing through crashes.
It feels like I did too much damage and that now it’s too late.

I feel like my body is going to give up, and I don’t know how I can keep fighting like this for years.

NEED URGENT advice please! :(

Hi everyone,

I’m having a really bad MCAS flare that has been going on for days. My adrenaline surges are unbearable, I have severe insomnia, and my heart is constantly pounding. I know I made things worse because I cheated on my low-histamine diet, but I also have severe ME/CFS and Long COVID, and I’m completely bedbound

Has anyone else been in a situation like this?
I’ve barely been able to eat for months. At this point I’m not really looking for another MCAS specialist because managing my severe ME/CFS is already overwhelming.
I’m mainly looking for advice about medications.

**Which medications have helped you the most?** Did antihistamines help? What about **ketotifen, montelukast, cromolyn sodium, H1/H2 blockers, or anything else?**

Which one made the biggest difference for you, and how long did it take before your MCAS symptoms started to calm down?

Also, what foods are you able to tolerate during a bad flare? I have so many symptoms from ME/CFS, but I can clearly feel that MCAS has been B making everything much worse for years.

I even had reaction to IV saline. I cant tell if meds are making me worse or not, now im just taking ivabradine and DAO before meals but im in ME crash also, i think MCAS plays a big role.

Thank you so much for any advice or personal experiences. I really appreciate it.

Hi everyone,

I’m having a really bad MCAS flare that has been going on for days. My adrenaline surges are unbearable, I have severe insomnia, and my heart is constantly pounding. I know I made things worse because I cheated on my low-histamine diet, but I also have severe ME/CFS and Long COVID, and I’m completely bedbound

Has anyone else been in a situation like this?
I’ve barely been able to eat for months. At this point I’m not really looking for another MCAS specialist because managing my severe ME/CFS is already overwhelming.
I’m mainly looking for advice about medications.

Which medications have helped you the most? Did antihistamines help? What about ketotifen, montelukast, cromolyn sodium, H1/H2 blockers, or anything else?

Which one made the biggest difference for you, and how long did it take before your MCAS symptoms started to calm down?

Also, what foods are you able to tolerate during a bad flare? I have so many symptoms from ME/CFS, but I can clearly feel that MCAS has been B making everything much worse for years.

I even had reaction to IV saline. I cant tell if meds are making me worse or not, now im just taking ivabradine and DAO before meals but im in ME crash also, i think MCAS plays a big role.

Thank you so much for any advice or personal experiences. I really appreciate it.

I’m very severe with ME/CFS, I’ve been stuck in a prolonged crash for months. My nervous system feels like it’s trapped in constant fight-or-flight. I’ve been trying so hard to rest, but pacing barely works anymore because I have no real baseline and I never seem to regenerate or recover.

Yesterday something happened that has never happened to me before, and it really scared me.

I suddenly started feeling very unwell and tried to walk to the bathroom. On the way there I developed what felt like presyncope, so I immediately sat down on the floor because I felt I was about to pass out. As soon as I sat down, I completely lost consciousness.

My friend said I was unconscious for about 3 minutes. She told me I was shaking and that my eyes had rolled back. She lifted me onto the couch and slapped my face a few times until I came “back” . I remembered everything, but I have no idea what actually happened. I also bit my tongue. Thankfully I sat down before collapsing, otherwise I could have seriously injured myself.

I’m wondering if this could be related to my prolonged crash, months of severe sleep deprivation, constant stress at home, and the fact that my body never gets a chance to recover anymore.

Has anyone else experienced something like this?

I’m really frightened and I don’t know what to do. My heart is constantly pounding and mentally I feel completely overwhelmed. I desperately want to get away from home because my family situation is extremely stressful, but I’m so sick that I can’t leave. My friend invited me to stay with her and relax, but I’m so sensitive to light and sound that I don’t think I could tolerate it.

It honestly feels like my autonomic nervous system has completely broken down. Has anyone experienced fainting with prolonged severe ME/CFS?
I had IV infusion just saline but i had horrible reaction to it :(
Im so sad because i just want to relax, and be around friends and be stable but i can’t reach that state.
I don’t really have deep sleep, what scares me also. :(

I’m very severe with ME/CFS, I’ve been stuck in a prolonged crash for months. My nervous system feels like it’s trapped in constant fight-or-flight. I’ve been trying so hard to rest, but pacing barely works anymore because I have no real baseline and I never seem to regenerate or recover.

Yesterday something happened that has never happened to me before, and it really scared me.

I suddenly started feeling very unwell and tried to walk to the bathroom. On the way there I developed what felt like presyncope, so I immediately sat down on the floor because I felt I was about to pass out. As soon as I sat down, I completely lost consciousness.

My friend said I was unconscious for about 3 minutes. She told me I was shaking and that my eyes had rolled back. She lifted me onto the couch and slapped my face a few times until I came “back” . I remembered everything, but I have no idea what actually happened. I also bit my tongue. Thankfully I sat down before collapsing, otherwise I could have seriously injured myself.

I’m wondering if this could be related to my prolonged crash, months of severe sleep deprivation, constant stress at home, and the fact that my body never gets a chance to recover anymore.

Has anyone else experienced something like this?

I’m really frightened and I don’t know what to do. My heart is constantly pounding and mentally I feel completely overwhelmed. I desperately want to get away from home because my family situation is extremely stressful, but I’m so sick that I can’t leave. My friend invited me to stay with her and relax, but I’m so sensitive to light and sound that I don’t think I could tolerate it.

It honestly feels like my autonomic nervous system has completely broken down. Has anyone experienced fainting with prolonged severe ME/CFS?
I had IV infusion just saline but i had horrible reaction to it :(
Im so sad because i just want to relax, and be around friends and be stable but i can’t reach that state.
I don’t really have deep sleep, what scares me also. :(

TDLR- I need advice please, very severe, rolling PEM from 10 months :(

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

TDLR- long post, need help, is there any hope?

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

High HR, palpitations, adrenaline, fight or flight, no restfull sleep, no rest and digest just the heart overworking. Am i gonna live like this all of my life in bed? :(

Sziasztok!
Érdekelne, hogy valakinek ismerőse/hozzátartozója követett mar el öngyilkosságot szénmonoxid mérgezés segitségével? :(

Köszönöm.

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

TL;DR – Long post.

I need to get this off my chest because I don’t know how much more of this I can take.

Three years ago, after COVID, I developed what I now know was Long COVID. Back then, nobody in my country knew much about it. No doctor warned me about pacing or post-exertional malaise. I was never told that pushing through could make me permanently worse.

Looking back, I think I was still mild. I had exercise intolerance and I felt that something was very wrong, but I was in complete denial. I kept trying to live my life. I took beta blockers and sleeping pills just to get through the days, convincing myself that if I rested a little or waited long enough, I’d recover.
Instead, I kept pushing and crashing.

Crash after crash after crash.
I didn’t understand what was happening to my body. I had no idea that every crash could be making me sicker.

Today, I am severe.
Almost every tiny movement can trigger a crash. I wake up with a racing heart and pounding palpitations. Even normal movement makes my heart feel like it’s trying to beat out of my chest. It feels like all the strength is being drained out of my body.

I’ve been in what feels like one continuous crash for nine months, and I can’t find my way out. I spend almost all my time lying in a dark room, but even that doesn’t feel restorative anymore. My body is exhausted, yet my brain won’t switch off. I can’t get refreshing sleep, and I feel trapped in this horizontal life.

The hardest part is that I even have to pace socializing. I miss my friends so much, but if they come over, I often crash afterwards. The adrenaline keeps me awake, so instead of feeling happy after seeing them, I end up paying for it physically.

The pounding heart has always been one of my crash symptoms, but now it feels different—stronger somehow. I don’t understand why I never seem to improve anymore or what keeps triggering these crashes. It’s terrifying because I can be lying completely still and still feel my heart pounding. Meanwhile, I know people whose resting heart rate is much higher than mine, yet they don’t feel anything like this.

The hardest part is looking back and wondering what would have happened if someone had simply told me about pacing three years ago. Maybe I would never have become severe. Maybe I’d already be living my life again.
Instead, I learned about pacing when it already felt too late.

Now I keep asking myself: how do people recover from this stage? If it takes years just to become stable, and there are no guarantees, how do you keep fighting? Even staying in bed doesn’t always make me feel stable anymore.

Anyone around me is shocked, and me also that i was unresponsible for my health. And there are no treatments. I miss my friends. Im used to suffering already but i want to be symptom free at least for a little bit. This is not healthy and sustainable anymore and sometimes i feel that i don t really care anymore what happens. My BF wedding is coming, im in crash, i know i could go for 1h but pay for it after.
I never feares my symptoms, my insomnia, my high HR, palpitations, that was the problem, i pushed tru it all the time.

The PTSD from countless crashes is becoming just as hard as the physical illness. Every symptom makes me fear another crash. It feels like my

life revolves around avoiding the next one.
Has anyone else gone from mild to severe because they didn’t know about pacing?

Has anyone spent months in what felt like one continuous crash and eventually improved? Is there still hope at this stage? I genuinely want to hear from people who have been through something similar.

I cant live years in dark room, no sleep, adrenaline, elevated HR, i just want to go out and have fun. If im gonna do that i will end up back in bed, but whats the point for waiting? I cant even expand… like i dont care anymore what happens im suffering from years. I destroyed my body by not pacing. Now im just surviving. My baseline doesnt even exists.
My BF wedding is coming i am desperate to go.
Like who whas that unresponsible to crash and push themselfes for months with high hr adrenline insomnia?
I destroyed my health, now i cant even enjoy staying in the bed because there is no regeneration just stress on my body. Otherwise i would be stable; logically. Sounds, lights its too much. :((