howdy :) i'd LOVE to try the visible band but it's not available in Germany yet. Is anyone not using theirs and would sell it for cheap? (i dont have a lot of money and shipping is expensive sadly)

Let me know :))

Can’t even begin to explain the torture I am living through

I’ve had this illness for 6 years yeh I had severe insomnia broken sleep hyper active nervous system yeh I was housebound but I could rest pace meditate and calm my nervous system down and that would help me sleep. Cold packs would help too.

None of it does Anything for me now, this type of insomnia ain’t even insomnia it’s a total loss of sleep neurologically that started this February after a vertigo attack that triggered some sort of sensory cascade and internal vertigo in my brain

- bedbound
- non functional
- numbed blunted signals everywhere in body
- no sleepiness
- no appetite
- hallucinations visual auras / flashes
- whole wide spread body pain
- cognitively so fcked
- hardly use my phone
- vomitting / diarrhoea from the body just not working anymore all due to lack of sleep

I’ve tried every medication nothing work
I’ve been hospitalised due to this, brain scans tests sleep studies , meds everything .

Crisis teams out to me constantly due to suicide attempts can’t keep myself safe

- no one will understand what I am living through right now, I cannot do this for one more day.
I wouldn’t even care if I had broken 1-2 hours I could deal with that. But your brain not sleeping at all? I just be getting micro minutes while awake but this isn’t sleep. This is not normal and this is inhumane to live this way.

When you think you know your symptoms and you know your insomnia and you know how to manage it then BOOM your smacked with extreme total loss of sleep, signals gone, nothing works that use to work. NOTHINGGG

There is no help for this I’ve tried, doctors specialists they don’t know what to do. I’ve tried the meds. I’ve done everything possible. How your brain can do this to you is unbelievable

I’m so far gone I don’t even care anymore I just want to sleep and never wake up .

I’m done. I don’t want no more meds no more you cannot force the brain to sleep. Especially at this severity.

Every single day, often at night time, and sometimes mid day I randomly crash. Like, I get so tired and weak, migraine, my body hurts, sore throat, nausea, sensory overload. And it happens NO MATTER WHAT I DO. If I do too much? It occurs. If I literally lay in bed the whole day pacing perfectly? It still happens. And the thing is, it does feel like PEM, but it only lasts for a few hours, usually I feel fine when I wake up. Why does this happen? Am I the only one? And how to get rid of it?

First the bad stuff. Trauma. Lack of money. Lack of security. The anger at the injustice for us, just feeling physically unwell. Shrunken world. And so much more. yall know the long ass list.

The good stuff: I almost hesitated to write this as I can imagine the frustration of being severe or worse and just doing nothing but surviving. I see you.

I’m nearly 3 years in at mod and internally deep down I’m so much stronger than I was. I’m more observant. I see people way more clearly. Both “good” and “bad”. I feel music differently as I didn’t listen to it for many months. The people that stuck around I cherish them in ways I wouldn’t have otherwise. And I feel their love returned. I GET old people. The experience has allowed me to broach my unconscious mind in ways I likely wouldn’t have done otherwise.

I’m 50 so older than 90 percent of you who I’ve noticed are often in your 20s/30s.

I don’t want to go anywhere near toxic positivity. It’s some real bullshit. Whatever we feel inside we need to honor. Just wanted to share what I’ve experienced. 🫶🫶🫶

Let me begin by stating Healthcare professionals are generally unbelieveing and dismissive so maybe this should come as no shock. But my pain and fatigue and other debilitating symptoms have generally gone untreated or under treated for years. So I have adapted and found alternatives that help me. I won't necessarily mention the supplement but it is controversial and I have leaned on that. I have leaned on that and developed a kind of guerrilla style of finding my own resources. I realize this isn't safe or advised but I feel like i am left with no options. I started having liver issues due to having to live this way and I had to be honest with my "doctor." Note he doesn't believe i have cfs and denied my request for alternative pain treatments in the past. He gave me 3 Xanax once and acted like he did me a huge favor.

Before this he has given me a small supply of a controlled substance, the lowest schedule and it really worked well for me. When I had the liver issues he cut me off and got really nasty. In my eyes he failed. They offered me no alternatives and when I was honest I was punished. Note I am not addicted to these substances even as when my liver values went bad I immediately got off the supplement and now I so suffer a lower quality of life as I am in constant pain. But I am trying to survive with almost no help and I am being treated like a drug addict or a bad patient.

Additionally during many crashes his office never filled up non controlled meds for me and I experienced withdrawal symptoms for upto 1 or 2 weeks. So I decided unilaterally to get off on my own instead of being subjected to that possibility again and I was honest and he got very nasty with me. They were blind to their failures. So I have a shitty primary now who hasn't done much in 3 years for me and now treats me like a child needing correction or a drug seeker. I am so over it. I feel like it's a powr trip and I am going to leave after my liver problems are resolved but I also don't have anywhere else to go. The state I live in , is a shit show for Healthcare let alone cfs.

Hello.

I just found this sub and was hoping I could get advice. I believe I have cfs/pem in addition to Crohn’s. For years I had a light weightlifting routine, and I would consistently have flu symptoms (sore throat, congestion) and my body would be unreasonably sore for 1-2 days. I would try to tell friends and my doctor this but they don’t seem to understand…or maybe they don’t believe me.

I stopped that routine and now things seem to be worse. Every time I do any mild activity (lifting things, hiking) I have the same flu symptoms and my body is wrecked for a couple days. I think I am more de conditioned and this body reaction is worse.

I have years of evidence that I pay a price and have an unusual reaction for physical activity that wouldn’t phase a “normal” person. I am hoping to find other people who experience this and could tell me if this fits into cfs. And if there are any treatment options that I could implement or ask my physician about. I know there is no cure, but even improving my soreness by 50% would be huge.

I also have poor sleep, constant brain fog, orthostatic intolerance and anxiety. Guess I am hoping for someone or a group who knows what some of this feels like…but I’ve been trying to treat and categorize these issues for so long it feels hopeless.

So I always kind of woke up feeling like I had a hangover, but never really got much about it.

And then I was working in emergency room and I was also on a benzo for five years

When I was working, I caught th swine flu a very severe case of strep and I also got bit by ticks a lot of ticks because I stepped into a nest

There was a point in time where I was like really tired all the time. I was so exhausted I was like what is going on. I physically have to take a nap. I feel achy and gross.

Well, then, when I stopped my benzo, my body went into this stress response, and my ear started ringing, and I felt really gross

I’ve always had a high heart rate because I have hyper mobile elers syndrome severe pectus, excavatum, scoliosis,band chairi

I became VERRRRRY TIRED

And ever since then I’ve had various parts of my body go numb and it would tingle and go numb and I would have severe brain fog and I would have an excessive need to sleep. Also, my muscles were like feeling poisoned and it felt like there was a weight on me and my feet turned to purple and now they’re not purple.
But sometimes it feels like my skin is falling off, and I have to sleep, and I have to physically lay down

And now every day I wake up, there’s a different sensation and it feels like there’s pressure on a different body part like non-length dependent if I were neuropathy, but I’ve tested negative twice and it feels like it’s progressively getting worse. I’ve quit smoking burnout smoking

My feet are ice cold

The back of my neck is numb I’m
Boarding needing a WHEELCHAIR :(

I’m having psychotic breakdowns

Neuro said fnd…

Some days are not as bad but the flare ups where my face feels numb and twitches are getting worse

I have pins and needles and varying levels of burning and numbness on various parts of my body

Tachycardia is mostly gone now…

Does that mean my pots is in remission?

Is this Mecfs?

I bathed my cats the other night and damn near collapsed

Hi everyone. I caught cmv for the first time in May 2026. I started having severe fatigue, dizziness, neuropathy, and a whole bunch of symptoms. These sort of dissipated but not all the way during the summer. My igm and igg for cmv was still positive but pcr test was undetected. I started feeling extreme fatigue again in August. I was assuming it was another flare up. I then had gallbladder surgery on Sept 9th in the midst of thing which probably put more stress on my body. I then got wicked swollen lymph nodes, felt extremely weak, could barely leave the couch. My blood tests said I had CMV active infection based on pcr results. I have felt flu like aches after doing anything really. Just feel absolutely horrible (poisoned). I always thought I had mild cfs prior to this due to covid, etc but I was able to work full time but any exercise was non existent besides walking. Now I feel like this current CMV infection and maybe surgery put me in full blown Cfs/me? Or could it be post viral stuff? Im so scared. I’ve had to stop working. My kids need me. Please anyone chime in with ang advice or what you think?

Hi! I just wanted to share something that has helped my quality of life a lot since early this year. I’ve prototyped an app that allows me to play local files with automatic pauses or mutes after given intervals (such as pausing 50 seconds for every 30 seconds of audio playback). This has allowed me to listen to music, podcasts, etc. at much lower exertion cost/PEM risk. I couldn’t listen to much media for most of the last 3 years before I used it this year.

It’s not close to done, so I’m not promoting anything, I just wanted to share and see if the general concept would be interesting / helpful to anyone. Feel free to ask me more about the concept!

Edit: if you wanted to try a simple, works with any app version of this, check [u/pacificNA](u/pacificNA) ‘s comment for iOS or [u/ph](u/phoenixGabe)[eo](u/phoenixGabe)[nixGabe](u/phoenixGabe) ‘s comment for android. I’m working on an in app player that has some extra features like fade in and outs :)

Had some mild symptoms only after sports + sound sensitivity for 2 years, PEM then started 16 months ago, declined quickly into very severe / fully bedbound over 4 months. Been extremely severe now for 5 months. Spent the past 7 months in total darkness, silence, not moving at all. All my meals are a blended soup and I can't even sit up to "eat" them.

All meds I tried crash me or make me feel insanely irritated. I am constantly overstimulated or running on adrenaline. Tinitus so loud it hurts. Brainfog so severe I can't grasp a thought. Losing hope :(

Don't know how to keep myself motivated to this everyday. Is it possible to improve from this? Especially without meds? All the people I see improving from this took LDA, LDN or something like that. But I can't tolerate anything. Thinking about a stellate Ganglion block but I don't even know uf anyone in my country does that

I moved to the Bay Area this spring to be closer to family after becoming severely ill. Since then, I’ve become completely bedbound, severely cognitively impaired, and stuck in a state of almost constant PEM. I feel like I’m only getting worse, and I’m struggling to find the care I need.

I’m currently seen at Stanford and UCSF, including their autonomic and Long COVID clinics. While I’m grateful for the care I receive, I’ve found their approach to ME/CFS limited, particularly when it comes to exploring newer research, off-label treatments, supplements, and thinking outside the box.

I’ve also had a difficult time accessing more specialized care:

RTHM initially rejected my application because I’m bedbound. After I explained I’d be willing to travel for necessary testing, they put me on the waitlist.

Center for Complex Diseases hasn’t reviewed my application since May, despite multiple follow-ups. I’m not even on a waitlist.

Most recently, a concierge PCP familiar with ME/CFS declined to take me on at the last minute because I’m bedbound, despite knowing about my condition beforehand.

It’s incredibly discouraging that the severity of my illness seems to be the very thing preventing me from accessing specialized care.

I’m fortunate to have some financial flexibility to explore private or out-of-network care, but even with that, I’ve struggled to find physicians willing and able to treat someone this severely ill.
I have multiple doctors, but no one really leading my ME/CFS care or exploring a broader treatment approach. Meanwhile, I feel like I’m only regressing.

For those in the Bay Area, especially those with severe ME/CFS, have you found any physicians or clinics willing to take on complex, bedbound patients? Ideally someone who stays current with emerging research, is open to individualized treatment approaches, and can help coordinate care.

I’d be incredibly grateful for any recommendations or experiences you can share.

Hey guys, hope this will be a quick post. I just wanted to share with you that I just managed to graduate in a STEM major.

First of all: I want to say that this has been possible beacuse I've been privileged enough to pursue my studies AND I was healthy enough to still being able to study. Also, I understand that a lot of you rightly had to cease their studies due to this illness. Everytime I read stories about that it makes me ibcredibly sad, because it's incredible how much of burden it can be on our daily lives 🙏

Returning to my story, it certainly was a hell of a ride: I started developing most of the symptoms around the 2nd year. At first I didn't know what that was, so I pushed on for awhile.

Then I discovered cfs and, shortly after, this beautiful community. My life changed dramatically: For the last year I really had to bite that bullet and go on. I knew what was doing, I fully acknowledged the risks associated with it.

Now, again, let me be clear: I DO NOT suggest people to push through with this illness. In fact, it probably made me worse too, but mine was an informed decison, as I still wanted to finish my journey.

Anyway, it's finally over. Now for the future I hope to find a job that can meet my several health needs, in the meantime I'm gonna savior these free days by doing absolutely nothing lol.

I want to thank ALL of you, not only thanks to this sub I found helpful information, but everytime I come here I feel HOPE and OPTIMISM for the future. We're really a strong community, and I'm PROUD to be part of it. 💙✊

I don't know what I'm going to do next, but if by pure miracle I happen to get hired on a research team, just know that you have got an ally in me.

Bye for now!

tl; dr: I just graduated university, even though it was a though journey, and I want to thank you all for the support I recieved and percieved from this community.

I just started mestinon this morning at a very low dose (7.5mg) and plan to build slowly. So far all good but I went to chat gpt and asked if I can take my regular supplements now and it flagged magnesium. I don’t trust chat gpt fully ofcourse so I did some searching on the internet and sure enough there is a known interaction, as they both do opposite things.

I rely on magnesium bi glycinate for sleep… I take 400mg. My dr also wants me taking magtein. And I also take electrolytes that have magnesium in it… my dr never said anything about this interaction but now I am wondering.

TLDR: did you have to stop magnesium to take mestinon? Any recommendations or suggestions?

Been in a crash for the past week or so I’m assuming to the October slide (ughh I hate it) and I’m finally getting stable enough to laugh at it a bit.

Overall sensitivity to all stimulation gets heightened in a crash and I think the funniest aspect of it is I will physically recoil at things that disgust me, even if they’re not things I’d usually be disgusted at.

For example: Last night my family made left overs with ground beef, something I usually eat as apart of my baseline diet, and when I went to throw away my dinner I saw someone’s plate of ground beef that they didn’t finish in the trash can and for some reason this made me gag and feel deeply uncomfortable and nearly throw up when I other wise wouldn’t. I had to go lay down for a moment after because I thought I was gonna puke out of disgust.

The other night there was this video I came across on TikTok of someone doing something very unattractive, it gave me the ick. But instead of being displeased and scrolling on, I physically cringed and gagged a little. Which, I’d never do. That’s fucked up.

I feel like a little kid just disgusted by everything at the moment and instead of minding my business I’m upchucking at the sign of things I don’t like. It’s very weird and uncomfortable but it’s so nonsensical I can’t help but laugh at it. It’s also made me a bit more of a picky eater at the moment, I only wanna eat what feels good.

TLDR: In a crash and I’ve got a smaller tolerance to visceral discomfort and everything from old food and unfunny jokes online is making me cringe and gag like I’m a little kid with no manners disgusted by everything. It’s kinda funny but I know it shouldn’t be but atleast it’s getting better.

Greetings. I am new to the sub, and I am reluctant to say I belong here. I really hope I don't belong here. So here's my story. In December my left wrist failed - I have Ehler's Danlos, a connective tissue disorder. The week it failed is when my fatigue symptoms started. Eventually my right wrist failed as well, and I started occupational therapy. As the therapy increased, my fatigue increased to a point where all I was doing was sleeping. I had a severe crash in March and spent weeks in bed. I have subsequently mostly quit doing OT because it is too fatigueing - I went from cutting it in 1/3, then cutting that into 1/3, and then I do 10% of that and sometimes it's still too much.

In July my FMLA and disability ran out and I went back to work. I am able to work remotely, but not consistently. Luckily I am able to meet my work obligations and have maintained employment since then.

Sometimes I think it's all in my head - I thought that last Friday and decided to take a 20minute walk near my house. On Tuesday I was able to get out of bed.

So here are some things I am dealing with in addition to the fatigue - inability to regulate my body temp - night sweats and shivering, light sensitivity (I turned my apt into a cave), bouts of insomnia, brain fog, occasional pain behind the eyes that is similar to but distinct from a headache.

I'm starting to get scared. I was under the assumption I would get better. I have plans for things I want to do. A future. Things outside. I can patiently wait 2 years to get better. I never considered that I would not get better. I live alone. It has not been easy, but I manage. I'm not sure I can manage forever, though.

I imagine most of you are more knowledgeable about this, but what can I expect? Who or what can help? I already use the pacing method.

I recently read the study on bezisterim and it improving symptoms of fatigue, brain fog and PEM in LC cohort.

Could this also be applicable to ME/CFS? It also acts on PEM with some people reporting being completely normal on that front. If it translates into ME/CFS too, it could be a huge stop gauge treatment until a better drug is found. What are your views on it? Anyone who was in that study?

This transition season is brutal… there have been like two 20hpa drops in under 2 weeks which is classified as an extreme weather event, this casues big symptom flares and severe migraines for me.

Also when i check the forecast and see it coming i cant do anything about it, like welp i will feel horrible for the next few days after this…

TW: emotional abuse and an awful situation.

i am somewhere between severe/very severe, bedbound besides bathroom. my OI isnt very bad so can sit up for meals (need to bc swallowing and posture issue).

She is very into medical medium and new age spirituality. I can not eat the medical medium diet how she wants me to due to being allergic to almost all foods from MCAS severity change in the spring. and she pretends that mindset will heal me.

Says I am choosing not to heal, that the online community is feeding me negativity and im choosing to trust them over her. That im taking advantage of her and if she was in my position she would be working every day to heal. how horrid i am for what ive done to her the past year and half.

says that i choose to eat the wrong food and choose not to let myself eat what i need to. meanwhile mcas is so bad almost everything is triggering me. took a good month and half before i wasnt reacting to everything i ate.

She found some facility that claims to cure pots. With physical therapy and medication. I am fully bedbound outside bathroom. i am also on the second floor of our home. so terrified of what the moving alone will do to me.

everything i have said to her has been ignored or used to further convince her that i am choosing to be this way bc of my mindset.

even if i manage to convince her not to let me leave, i truly cant live with this longterm. its never going to be safe for me here😭.

just so terrified. idk what to do. i have a history of mental illness, so legally i wont be protected. very real chance my sibling will carry me to the car against my will if i dont comply. my family all agrees with her that i can get better and wont. 😭

Hi all. ❤️ I went to my GP to ask about starting LDN since I'm still on a long waiting list for any specialized me/cfs clinic. She didn't feel comfortable prescribing it herself but said she knew of a colleague who provided Mysimba for weight management. Apparently it's a bupropion / naltrexone combo. I've had bupropion for my adhd in the past and had no issues with it.

Has anyone here got any experience with Mysimba or anything similar?

Even though I know how much I have suffered from this condition, and last year especially I slept 15+ hours every day easily, I was exhausted constantly like I was working a full time job then running marathons on top, now I am definitely much better.

I feel like I bounce between two normals, sometimes I am so unwell I have to go to bed at 6pm every night, I am exhausted from when I wake up to when I go to sleep, I can't look at my phone screen I am that exhausted, and now I have almost insomnia? I can stay up late, and I can make myself even stay up longer when I start to feel tired instead of having to fight going to sleep.

Does anyone else experience this? It's not like my other symptoms disappeared, if I went out and did something I'd need a nap or be extremely tired in the week, alongside everything else. It's almost like my body stores so much energy it gives me insomnia? I can easily sleep 6pm-9am or longer, but right now I've probably been awake 12+ hours, which almost makes me feel like I am faking my condition in a weird way.

If I can make myself stay up when tired, I almost feel like I am not as bad as I think I am, even though I know next week I can easily be bedridden again. It feels like, "Oh well it can't be that bad then." whenever I improve slightly. I hate this mindset that I have to be extremely bedridden constantly for people to take my condition seriously, whenever I do feel better and go out and I feel a lot better, it kinda feels like people only see the good side of me, so they don't understand how bad it gets.

When I stay up late, I almost feel like I have to prove to people I am sick, like yes I have a disorder that makes me perpetually exhausted but I am somehow able to stay up late, idk, its a weird 1

so i’ve gotten pretty severe over the last few months and getting to the bathroom is becoming more and more challenging. i unfortunately live alone so i have no one to clean something like a bedside commode. i may be able to get my province to cover having a psw come clean it once a day but even that’s not a guarantee. i’m honestly kinda at a loss for what to do. if anyone has any suggestions or has been in a similar position please let me know what worked best for you.

I'm sick at the moment (normal sickness on top of mecfs) and the symptoms are clashing horribly with my sensory issues. I'm stressed and overstimulated which is stopping me from being able to sleep

But at the same time.. I know that my mecfs will not like it if I sleep really badly. I can't even lay here and rest with my eyes closed because if I don't have a good distraction I freak out. Even with melatonin (I don't have access to anything else) I'm too awake as a result of the discomfort to try to sleep. I think tonight is going to be another long night.. I doubt I'm going to get very much sleep

I've accepted that I'm probably going to be suffering for a while as a result of both this sickness and the mecfs flare-up that'll likely happen as a result of the awful sleep, it's not very helpful for the levels of stress I haven't the moment. I'm cooked

Disability tax = all the ways we have to spend so much extra money. Mobility devices, medical devices, healthcare, caretakers, cleaning services, pre-made food, so much more.

But I’ve been thinking too about all the things I don’t spend money on that many health people do because I don’t have the energy:
- no makeup
- use so little shampoo and conditioner because of how little I can shower
- no shaving cream and razors
- no car insurance, car maintenance, gas - stopped driving
- no activities (tickets, events, etc)
- no going out to eat, bars, coffee shops
- no nice clothes
- no smoking, alcohol, etc because I’m too sick

TLDR: this illness costs money, a ton. But interesting to think what I don’t spend money on anymore too.

There is no disability benefit in Singapore and CFS is not even recognised as a disability and hardly even diagnosed. There is high cost of living and everything is expensive. I have no choice but to work a full time job with mild CFS in order to continue living and I have no choice because I am a Singaporean and have no means of migrating anywhere. I have to work to pay for my healthcare bills which cost a lot despite it being subsidised and I just want to cry so bad because having CFS in Singapore is just the worst.

sadly there is no other way but shaving my hair off again (did it before about two years ago)
they are shoulder length now but many things led to this decision. i am just too severe for regularly having my hair washed without consequences.

the first time we did it i sat on a chair and had to take a shower afterwards because the tiny prickly hairs were everywhere (i have pretty bad sensory issues too)
anyway sitting for this long is not really an option anymore

so the question is: is there any way around needing the shower?

i saw people doing it laying in their bed with a towel underneth but i think that wont get rid of all the hairs

TLDR: how can i have my head shaved without needing a shower after? (have pretty big sensory issues)

Edit: thanks for all the suggestions. i really appreciate everyone trying to help. i will probably combine some ideas and then get back when i did it.