u/Financial_Owl8105

Yesterday I took a rescue dose — stupid me — one extra cinolazepam pill because I had a complete mental breakdown from the ME crash and from the situation at home. My mother hit me and I feel like I’m living in constant terror and stress. I just couldn’t handle it anymore. Now I’m scared I messed up my taper badly.

My symptoms have already been extremely severe for a long time. My heart pounds constantly at every little thing, I have severe bruxism, I’ve barely eaten for 5 days, and I honestly feel like death is hovering around me. Even the double dose didn’t really sedate me or knock me out because my fight-or-flight state and hyper-reactivity feel so extreme. Things that calm other people down don’t calm me at all anymore.

Sometimes I feel like I just want to sedate myself to get through the day, but even benzos barely touch the hyperarousal and autonomic overload. I don’t understand what’s happening — maybe the ME crash is extremely deep and my nervous system is just stuck in survival mode.

I’ve even started thinking maybe I should just stay on benzos because the severe ME already feels unbearable on its own, and dealing with both severe ME and benzo withdrawal at the same time feels impossible. Part of me thinks maybe I’ll never get out of this crash anyway, and at least the benzos might reduce some of the suffering, even if only a little.

My doctor hasn’t really helped me either. He didn’t even explain properly that cinolazepam is a benzo, and once I realized it, I told myself I wanted to get off them. At first tapering wasn’t even that hard, but after so much stress, repeated mental breakdowns, and crashes, it feels like my nervous system completely switched and now I’m trapped in this loop again.

I’m 32 and honestly I can’t really see a way out right now 🙁

Sorry i need to vent :(

Every day is the same. No improvement for months. I sleep 3–4 hours, even benzos don’t help anymore. I’m reactive to everything. Every crash gets worse. Even in my dreams I wake up with my heart pounding at everything. I just lie in bed and the whole bed shakes from my heartbeat.

My mother is terrorizing me. Yesterday I had a mental breakdown and almost suffocated. This happens every week. I ran out of the house, went down the stairs, collapsed and my legs gave out under me.

There’s been too much damage already. No regeneration anymore. I haven’t been able to eat properly for 5 days. Nobody takes me seriously — people just kick me when I’m already down and destroy me mentally even more.

Nobody understands me. I can’t even leave, and I can’t improve either, because I know what I’ve done to myself. I live in a country where nobody cares. My family situation is horrible. Everything gets worse day by day.

I feel like I’m losing control from all the suffering, and people just make jokes about me.
I cant even recognise myself, atrophy, no more hair, old skin, dehydration.

I don’t really understand heart rate pacing anymore, especially being severe and mostly bedbound.

My resting heart rate is usually around 50–55 bpm.
Before I got worse, I could walk normally with a heart rate around 60–80, and slightly faster walking was around 80–90. I almost never reached 100 because I used to be very fit and sporty.

What I’ve noticed is that during crashes, my resting heart rate can stay higher, around 89–90 bpm, and I didn’t understand at the time that this was a sign something was wrong, so I kept pushing through it.

Now even 90–100 bpm during standing or walking feels like too much for me. In the past I could even work or be on my feet with 60–70 bpm (like working as a waitress), but now everything feels completely different.

What confuses me is that other people sometimes have much higher heart rates, but they don’t feel their heartbeat strongly. In my case, even a normal or slightly elevated heart rate feels extremely intense, like my heart is pounding out of my chest.

I’m trying to keep my heart rate low, but I don’t understand why it feels so strong all the time. I’m even afraid to walk for more than 5 minutes because I feel like I might “crash” or collapse. Even if my heart rate is only around 100–120, it feels like too much for my body, and sometimes it doesn’t go back down for hours.

I feel very frustrated because I want to go outside, especially now that summer is coming, but my body just doesn’t allow it.

Even simple things like standing up or brushing my teeth used to be fine before. Now even a resting heart rate of 70–75 while sitting or standing can feel like I’m about to faint or collapse.

Sometimes my heart rate goes back to normal quickly, but other times it stays elevated for a long time. I don’t understand why it changes so much.

I’m just really exhausted and confused about what is happening to my body.

I don’t really understand heart rate pacing anymore, especially being severe and mostly bedbound.

My resting heart rate is usually around 50–55 bpm.
Before I got worse, I could walk normally with a heart rate around 60–80, and slightly faster walking was around 80–90. I almost never reached 100 because I used to be very fit and sporty.

What I’ve noticed is that during crashes, my resting heart rate can stay higher, around 89–90 bpm, and I didn’t understand at the time that this was a sign something was wrong, so I kept pushing through it.

Now even 90–100 bpm during standing or walking feels like too much for me. In the past I could even work or be on my feet with 60–70 bpm (like working as a waitress), but now everything feels completely different.

What confuses me is that other people sometimes have much higher heart rates, but they don’t feel their heartbeat strongly. In my case, even a normal or slightly elevated heart rate feels extremely intense, like my heart is pounding out of my chest.

I’m trying to keep my heart rate low, but I don’t understand why it feels so strong all the time. I’m even afraid to walk for more than 5 minutes because I feel like I might “crash” or collapse. Even if my heart rate is only around 100–120, it feels like too much for my body, and sometimes it doesn’t go back down for hours.

I feel very frustrated because I want to go outside, especially now that summer is coming, but my body just doesn’t allow it.

Even simple things like standing up or brushing my teeth used to be fine before. Now even a resting heart rate of 70–75 while sitting or standing can feel like I’m about to faint or collapse.

Sometimes my heart rate goes back to normal quickly, but other times it stays elevated for a long time. I don’t understand why it changes so much.

I’m just really exhausted and confused about what is happening to my body.

Has anyone else completely pushed themselves until they hit absolute zero?

Before I knew I had ME/CFS, I kept forcing myself through crashes over and over again. I didn’t understand PEM at all. I thought I just had to keep going.

My HR was constantly unstable and my pounding heartbeat was warning me the whole time, but I ignored it. I probably crashed 100+ times. I honestly don’t even know how I survived or what I was thinking back then.
Then I finally realized how much damage had happened and got diagnosed with ME/CFS. I completely broke down mentally.

Now I’ve been stuck in rolling PEM for 8 months

almost no sleep
constant adrenaline
severe dehydration feeling
muscle atrophy
hair loss
shaking, pounding heart
body feels completely worn down

I know I probably need months of strict rest and silence for my nervous system to calm down. No pushing, no stimulation, barely any activity. But it’s like I can’t stop myself mentally. Even though I barely move — maybe 200 steps a day just to the bathroom and back — I still keep breaking my own limits.

Every day I tell myself:

“Just stay in bed. Don’t push.”

But then I get angry and hopeless and think:

“What’s the point anymore?”

So I get up to get water, sit up too long, smoke a cigarette, scroll my phone… and crash again. Im so used to it i dont even know what it means rest and digest and Calm.. just chronic stress.

I feel like I destroyed my body from chronic stress and constant PEM. I don’t even recognize myself anymore physically. I can barely eat. I feel trapped in permanent survival mode.

Did anyone here reach a point where they truly believed they had done irreversible damage… but still improved at least somewhat later? I really need to hear from severe people who understand this level of rolling crash and nervous system exhaustion.

Has anyone else completely pushed themselves until they hit absolute zero?

Before I knew I had ME/CFS, I kept forcing myself through crashes over and over again. I didn’t understand PEM at all. I thought I just had to keep going.

My HR was constantly unstable and my pounding heartbeat was warning me the whole time, but I ignored it. I probably crashed 100+ times. I honestly don’t even know how I survived or what I was thinking back then.
Then I finally realized how much damage had happened and got diagnosed with ME/CFS. I completely broke down mentally.

Now I’ve been stuck in rolling PEM for 8 months

almost no sleep
constant adrenaline
severe dehydration feeling
muscle atrophy
hair loss
shaking, pounding heart
body feels completely worn down

I know I probably need months of strict rest and silence for my nervous system to calm down. No pushing, no stimulation, barely any activity. But it’s like I can’t stop myself mentally. Even though I barely move — maybe 200 steps a day just to the bathroom and back — I still keep breaking my own limits.

Every day I tell myself:

“Just stay in bed. Don’t push.”

But then I get angry and hopeless and think:

“What’s the point anymore?”

So I get up to get water, sit up too long, smoke a cigarette, scroll my phone… and crash again. Im so used to it i dont even know what it means rest and digest and Calm.. just chronic stress.

I feel like I destroyed my body from chronic stress and constant PEM. I don’t even recognize myself anymore physically. I can barely eat. I feel trapped in permanent survival mode.

Did anyone here reach a point where they truly believed they had done irreversible damage… but still improved at least somewhat later? I really need to hear from severe people who understand this level of rolling crash and nervous system exhaustion.

How am I supposed to believe I’ll ever be normal again?

I’ve been in a constant push-crash cycle for 8 months straight. I ignored my body for years and kept forcing myself through severe symptoms like I was in the military or something. Now it feels like my nervous system and body are completely destroyed.

Every single day feels like chronic stress and adrenaline. I wake up already shaking, sweating, heart pounding, feeling poisoned and unrested before the day even starts. There is no real recovery anymore. It feels like my body never leaves survival mode.

I barely recognize myself physically:

* massive hair loss

* pale skin

* wrinkles and dehydration

* muscle wasting

* exhausted eyes

* constant fight-or-flight feeling

Honestly I feel like a textbook example of what severe ME/CFS + dysautonomia + chronic stress can do to a human body.

People say “rest” or “pace,” but when you’re severe even basic things crash you. Sometimes I wonder:

If it takes months or years just to crawl out of one crash… then what?

Will my whole life become trying to brush my teeth daily and shower once a week?

I’m 32 years old and I genuinely can’t imagine having a normal life again from this state.

Anyone with MCAS/ME found a truly gentle hair loss spray/mist that doesn’t trigger reactions?

NOT oils — my scalp can’t tolerate heavy products anymore.

I’m severe/mostly bedbound with constant PEM, crashes and MCAS flares, and my hair has been falling out in clumps for 3 years from the stress on my body. I’ve lost around 75% of my hair already and the top of my scalp is becoming visibly bald.

Looking for:

* fragrance-free or very low fragrance
* minimal ingredients
* sensitive scalp friendly
* spray/mist only
* something people with MCAS actually tolerated

I honestly can’t handle watching more hair disappear.
Im in europe.

Thank you :)

Anyone with MCAS/ME found a truly gentle hair loss spray/mist that doesn’t trigger reactions?

NOT oils — my scalp can’t tolerate heavy products anymore.

I’m severe/mostly bedbound with constant PEM, crashes and MCAS flares, and my hair has been falling out in clumps for 3 years from the stress on my body. I’ve lost around 75% of my hair already and the top of my scalp is becoming visibly bald.

Looking for:

* fragrance-free or very low fragrance
* minimal ingredients
* sensitive scalp friendly
* spray/mist only
* something people with MCAS actually tolerated

I honestly can’t handle watching more hair disappear.
Im in europe.

Thank you :)

I crashed like 100 times before i knew about CFS/ME. I had horrible exertion intolerance but kept working 2 times a week.. physical work :( my HR was elevated.. i just took the beta blockers and move on, living on pure adrenaline.
Now im bedbound from 1year, i dont have a baseline, constant symtpoms.. cognitive, emotional exertion is also gives me crash. Hyperarousal 100%
Today i washed my hair after 3 months… my mother helped me, was too much for my body, 110HR sitting shaking. I just want to be able to do simple things again.. go out once in a month.
I dont even look like a human anymore, hair loss, puffy face, pale, muscle atrophy.. i think i need more pacing and to isolate myself, but its so boring i always was active, sporty, living life.
Mornings are horrible, so the nights, barely sleeping. Dreams are triggering..
Im just so done with this, want to go outside and dance :)) i would collapse there or not.. due to adrenaline. Im just so sad, i miss my friends.
I see people are recovering but i always ask myself if they where severe due to so many crashes or i was the only one who pushed and torture my body? :(
I will try everything, radical rest for months, POTS MCAS treatment.
How Do you Do the brain retraining?
Please someone can help me? Im in this hell from 3 years. Mild CFS then push crash and be came severe. I didnt left the House from 1 year and im getting worse.

Thank you!

Has anyone here with POTS + ME/CFS actually managed to increase activity even slightly after starting treatment?

I’m really trying to understand what’s possible long term, because right now I feel extremely limited.

I have ME/CFS with PEM, and my heart rate stays very high with even minimal activity. I spend most of my time lying down because if I do anything, my heart rate struggles to come back down to my baseline.

My normal resting HR is around 50–55, but very often it gets “stuck” around 80, and for me that already feels like a crash state. Even simple things like washing my hair or basic hygiene can be too much and I need help.

Around 100 bpm already feels like physical exertion for me, and even if I sit down afterwards, my heart rate doesn’t easily return to baseline. On better days I can kind of stay between 50–80, but that’s still only for very minimal activity like going to the bathroom and then back to resting again.

When my heart rate stays elevated, I feel strong palpitations and a lot of physical distress. It’s really exhausting.

I’ve basically been housebound for over a year now, unable to go anywhere socially. I miss even being able to go out for a single evening. I feel very severe and honestly just frustrated at this point.

Has anyone here actually had any improvement with treating POTS or dysautonomia in a situation like this? Even small increases in tolerance or better HR recovery?

I’m trying to understand what has helped others because right now it feels very stuck.

“Does anyone know a doctor (preferably online/telehealth) who actually understands benzodiazepine tapering/withdrawal and severe chronic illness, and who might also help with sleep issues?

I’m in Romania and I honestly feel completely lost with medical care here. My current doctor basically just prescribes medications without understanding the complexity of what’s happening to me.

I have severe ME/CFS and over the last months my condition has become extremely debilitating. I’m mostly housebound/bedbound, extremely exertion intolerant, and my sleep has collapsed. I’ve been sleeping only a few hours a night for months and the lack of restorative sleep is making everything dramatically worse.

The problem is that I also have benzo withdrawal/instability in the background, so I genuinely can’t tell anymore which symptoms are from ME crash, dysautonomia/hyperarousal, sleep deprivation, or withdrawal.

Everything overlaps:

pounding heart
adrenaline surges
severe exhaustion
inability to calm my nervous system
fragmented sleep
feeling wired but exhausted constantly

I’m getting to a point where I feel extremely unwell and overwhelmed, and I really need professional guidance from someone who understands these overlapping conditions instead of just throwing random medications at me.

My family also doesn’t really understand how severe this has become, which makes the situation even more isolating.
If anyone has recommendations for:
online doctors familiar with benzo tapering/withdrawal
ME/CFS-aware doctors
sleep specialists who understand nervous system hypersensitivity

I would be incredibly grateful.”

I need honest experiences from people who have been this severe and whether improvement was possible.
I’ve been stuck in a severe ME/CFS crash state for around 8 months now and my level of functioning feels terrifyingly low.
Most days I only do around 150 steps total. I try to stay within one “pace point” on Visible and avoid pushing because even tiny amounts of exertion seem to worsen everything. My body feels permanently stuck in a crash/hyperadrenergic state.
Basic self-care has become almost impossible:
showering is extremely hard
I only manage to bathe around once a month
washing my hair feels like a luxury and I’m considering cutting it because I cannot maintain it anymore
I spend most of my time lying down because upright posture and activity feel overwhelming. My symptoms include:
severe exertion intolerance
pounding heart / autonomic symptoms
adrenaline surges
unrefreshing fragmented sleep
feeling “wired but exhausted”
constant exhaustion that never truly resets
Before this I was always a very active person, so mentally this has been devastating. I kept crashing over and over trying to function and now I feel like I barely have a life left.
I genuinely don’t know if people improve from this level enough to at least function around the house again, or if this is permanent. Right now it feels impossible to imagine living like this long term.
I’m not looking for toxic positivity — I just really need honest experiences from people who were this severe.”

I need honest experiences from people who have been this severe and whether improvement was possible.
I’ve been stuck in a severe ME/CFS crash state for around 8 months now and my level of functioning feels terrifyingly low.

Most days I only do around 150 steps total. I try to stay within one “pace point” on Visible and avoid pushing because even tiny amounts of exertion seem to worsen everything. My body feels permanently stuck in a crash/hyperadrenergic state.

Basic self-care has become almost impossible:
showering is extremely hard
I only manage to bathe around once a month
washing my hair feels like a luxury and I’m considering cutting it because I cannot maintain it anymore.

I spend most of my time lying down because upright posture and activity feel overwhelming. My symptoms include:

severe exertion intolerance
pounding heart / autonomic symptoms
adrenaline surges
unrefreshing fragmented sleep
feeling “wired but exhausted”
constant exhaustion that never truly resets

Before this I was always a very active person, so mentally this has been devastating. I kept crashing over and over trying to function and now I feel like I barely have a life left.

I genuinely don’t know if people improve from this level enough to at least function around the house again, or if this is permanent. Right now it feels impossible to imagine living like this long term.
I’m not looking for toxic positivity — I just really need honest experiences from people who were this severe.”

“For the past 6 months I’ve only been sleeping around 3–4 hours total per night. I do have benzo withdrawal/instability in the background, but honestly this feels bigger than just benzo WD at this point. It feels like my nervous system is permanently stuck in an overactivated crash state and cannot calm down anymore.
At night my symptoms become extreme:
pounding heart / elevated HR
intense internal heat/burning feeling
adrenaline surges
feeling extremely alert and unable to transition into deep sleep
severe exhaustion but simultaneously ‘wired’
Even when I lie down and try to sleep, my heart rate can jump from around 55 to 70 and my whole body feels activated again. I feel like every small exertion or push crashes me further and keeps my system from settling down.
I also have severe ME/CFS bedbound and getting worse due to lack of sleep and likely dysautonomia/POTS symptoms, so the combination feels unbearable. The sleep deprivation is becoming one of the worst parts. I genuinely feel like I cannot keep functioning like this without restorative sleep much longer.
When I wasn’t in such a severe crash state, my body did not react this intensely when trying to fall asleep. Now it feels like the moment I drift toward sleep my nervous system activates again.
I’m completely exhausted and overwhelmed and honestly I need help / experiences from people who have gone through something similar. Did anything help calm the hyperadrenergic state or improve sleep when your nervous system felt permanently stuck in overdrive?”

I feel extremely alone lately.

For months now, I haven’t been able to stabilize. My sleep is broken, medications don’t really help anymore, and I often wake up already with a high heart rate and complete exhaustion, like there’s no real recovery happening.

Most of my days are spent lying down. Sometimes I just lie there for hours with my eyes closed, trying not to overstimulate myself even with thoughts, because even thinking can trigger my nervous system. Still, I have to get up for basic things – water, sometimes food – but even that often triggers me, like my body is stuck in constant “fight or flight.”

I haven’t been able to wash my hair properly for 3 months. It’s completely tangled now, and even trying to detangle it feels physically stressful. My hands also feel weak at times, like I can barely use them, because even small movements spike my heart rate.

Honestly, sometimes I feel like I’m falling apart mentally too. Like I can’t believe I’ve ended up here. Constant exhaustion, but also constant internal adrenaline and tension.

I’m trying to do HR pacing because it’s the only thing I can still hold onto in some way. But it’s very hard, because even at rest my body doesn’t feel like it’s truly resting.

My mom leaves me alone for weeks because she thinks I’m just “crazy” or exaggerating things. That makes everything feel even more isolating.

My overthinking gets so intense that sometimes I need audiobooks just to cope, because the silence and my thoughts feel unbearable. It feels like PTSD from the constant push–crash cycles, from not stopping in time, and I keep blaming myself for it all.

I can’t really have friends over either – almost everything triggers me, and I can’t handle the stimulation.

I don’t know how to live like this. Stabilizing feels almost impossible now, and that scares me.

I see others who can conserve energy with minimal movement, and I don’t even know what “minimal” is anymore.

Honestly, I don’t know where this is going. I just feel completely exhausted.

How do you start your mornings with severe ME / dysautonomia?

I’m really struggling to find a routine that doesn’t make things worse. When I wake up, I already feel awful — not rested at all. My heart is pounding, sometimes my heart rate is higher than my usual baseline, and I feel this constant adrenaline / “wired” feeling.

My sleep is very broken:
I go to bed around 10pm but often can’t fall asleep until 12–1am. I wake up around 3–4am, again around 5am, and then in the morning my heart rate rises and I feel completely activated again.

In the morning:
- I feel exhausted but also wired at the same time
- strong pounding heart, even if HR isn’t extremely high
- very sensitive to movement, sounds, even thinking
- sometimes I feel like I can’t calm my system down at all

I’m mostly bedbound and even small movements can feel like too much.

Do you stay lying down, or do you sit up in bed for a while until your heart rate settles?
Is it better to wait before getting up, or just do minimal movement right away?

I feel terrible every morning and I don’t know what the least harmful approach is anymore.

Would really appreciate hearing what works for others in a similar situation.

I’ve been dealing with constant adrenaline surges and a pounding heart feeling, even when my heart rate isn’t that high. It feels like my nervous system is always “on” and I can’t fully relax.

This used to happen to me during crashes, but now I’m confused because my heart rate isn’t extremely high — it’s more like it feels strong and stuck, not necessarily fast.

My sleep is also very disrupted:
I go to bed around 10pm but often don’t fall asleep until 12–1am. Then I wake up around 3–4am, and again around 5am, and in the morning my heart rate rises and I feel wired again. I never feel properly rested.

During the day, even small things (movement, sounds, thinking) seem to trigger this adrenaline feeling, and once it starts I can’t “switch it off”.

Is this a crash symptom, or more like nervous system hyperarousal?

How long does it usually take for this constant adrenaline state to calm down? It’s extremely exhausting.

Would really appreciate hearing others’ experiences.

I’ve been trying to follow HR pacing for weeks using Visible and Garmin. According to the numbers, it often looks like I’m staying within limits and not overdoing it. But my actual experience feels completely different.
I have a constant pounding heart sensation, like my nervous system is always switched on. My sleep is often poor and unrefreshing, and it’s very hard to wake up in the morning. Sometimes even just turning in bed feels like too much.
I also feel what seems like PEM-type reactions, where even small activity feels like it causes a “shift” or crash-like response. On top of that, I get random adrenaline surges that feel completely out of my control.
I don’t understand what’s happening because my activity level is extremely low:
around 100–200 steps per day
getting up to use the bathroom
occasionally going to the kitchen to eat or drink
Despite this, I feel constantly overwhelmed and physically exhausted. It feels like my body never fully downregulates.
I’ve been pushing and crashing for a long time, and I consider myself severe now because of that cycle. I’ve tried to reduce activity and follow pacing, but I still feel chronically overstimulated and unwell.
I honestly don’t understand what the issue is anymore, because on paper I’m doing very little, but internally it still feels like too much all the time.

My mornings (and nights) have been looking like this lately, and I honestly don’t know if anyone else experiences the same thing.
When I’m lying down my heart rate is relatively “okay” (around 60), but as soon as I sit up it jumps to around 80. If I try to stand or move too quickly, it goes even higher and it feels like my whole system is “spiking.” At that point I often have to lie back down because otherwise it just keeps rising and I feel really unwell.
This also happens at night when I get up to go to the bathroom — even that small movement triggers the same reaction, and afterward I feel so “activated” that I can’t fall back asleep. It feels like my nervous system gets fully switched on and doesn’t calm down easily.
Mornings are the worst — it can take hours where my body feels like it can’t handle the transition from lying down to sitting or standing. In the evening, it’s often very different: my heart rate sometimes goes down to around 50 and I feel more stable and calm.
It feels very unstable overall — one moment I’m “okay,” and the next my heart rate is too high and my whole body feels like it’s in a stress response.
I’m wondering:
Does anyone else start their mornings like this (and also get this at night)?
heart rate jumps when sitting up, standing, or even going to the bathroom at night?
does it go back down quickly or stay elevated for a while?
how long does it take to stabilize for you?
And most importantly:
👉 Has this improved for anyone over time, or has it stayed the same?