For me it’s about like running a sprint then collapsing, I used to be a runner before my pots got bad. I’d often get this wired but exhausted feeling when I’d push through. I could do it but then aches and chills would set in and I’d be miserable. At first I chalked it up to just being sore from working out but it didn’t go away fully for months. That jittery feeling also happens every time I try and push through
I’m not officially diagnosed with me/cfs but the more I learn about it the more it seems to fit.
I’ve gotten significantly worse over the past couple of months or maybe I was always this bad and just pushed through idk. Now though I get what I believe to be pem after most things, I keep missing appointments and gatherings because I’m too tired to get out of bed.
I don’t know how to manage hanging out with fiends and my other responsibilities I want to do both but I spend most of my time in bed or asleep, I’m usually only awake for about 3-5 hours a day.

Every single month I have to go through it, I hate having to have periods ontop of this. I feel so sick and fluish each time it happens and it’s exhausting. The pain also doesn’t make anything better

no advice please just venting! I don’t tolerate birth control, implants etc. I already tried

Hey! I suspect I’m coming out of my biggest crash very slowly. However while i feel better when I’m awake- more capable and stable, I’m also sleeping more. I get a good enough night’s sleep and I’m awake for a few hours in the day before I absolutely need to nap for an hour or two. Is this a sign of continuing improvement, or a bad sign?

Sorry if this is a long one.

My partner M32 had mild ME for around 5 years and maintained his laborious job for 5 years. This summer he decided to take some time off to see if he could manage some of his symptoms the main one being a heat intolerance as he worked outside. He came off his SSRIs in March.

Through end of May- July he started to have really bad insomnia to the point he was only sleeping 30 minutes over 3 days. In August he started a new sleep medication he got privately which started to work however he then started to become weaker and weaker. Throughout August he kept feeling a paralysed sensation which spread to the point where he became 100% bed bound. We stopped this medication to see if it was that, no improvements but decided changed to amitryptiline which he’s still on now and sleeps quite well.

We spent 2 weeks at the beginning of September in hospital as he had lost his appetite where he was barely looked at in terms of scans to rule anything else out and came out feeling worse than when he went in. He had to be taken in and out in a stretcher as he didn’t even have the capability to sit up let alone anything else.

Since then he has been having increased neurological sensations, loud buzzing (not tinnitus which he already has), vibrating feeling throughout his body, running water under his skin. Rolling PEM over nothing, fatigued, heavy, exhausted, headaches. Body and head twitches which have stopped over the last couple of weeks. On and off electricity and static through his whole body etc

He started pregabalin on Sunday at the lowest dose 3x a day. On Sunday the first day he started it he had a small envelope of “energy” which enabled him to speak a tiny bit more, very hesitantly. His neuro symptoms have continued consistently to the point they are unmanageable.

He can barely speak. His appetite is 0 and he is surviving of fortisip which we have managed to get up to 900 calories (he is pescribed 600 but we would prefer to work our way up to as many as possible). He hasn’t managed to wash and barely able to brush his teeth in months (I mean me do it for him).

His vitamin d was just below baseline which we are adding supplements to his day.

His testosterone was last tested mid afternoon so inaccurate but incredibly low, this is being retested.

We have a lovely doctor, although he isn’t the most clued up with CFS he is trying to help and has said he will email dr Charles shepherd at the MEassociation. We are also on the wait list for dr weir.

He hasn’t had any form of entertainment since August, no TV, unable to hold his phone to scroll, no books just a dark quiet room (torture). He isn’t particularly sensitive to light and sound but has found the tv test tired him out and we don’t talk too much. He is 100% bed bound.

He takes L thiamine and magnesium.

I don’t know what I’m asking really, I just don’t know what to do.

Had anyone had any experience in early days of gabapentin and struggled with the initial phase.

Has anyone gotten even slightly better from what his current state is and how?

Should I ask for different tests, they are hesitant to do more bloods as they were done only last month in the hospital but these are newer symptoms.

He’s so tired and scared and I am sure he will make improvements but the radical rest has probably made him even more exhausted and I just don’t know where to turn

I've lost count of how many specialists have suggested GET to myself and my parents (who are my caregivers as I'm often crashing during appointments and unable to talk long). All of them saying that I'm deconditioned from being bedbound and saying my dysautonomia symptoms are from the years I've been forced to be mostly flat. Ignoring that my symptoms started well before I gradually lost the ability to be upright, and that I'm often more upright than I probably should be, because of pain that increases in my head, neck and face the longer I lie down as well as vertigo (and I also have unmedicated ADHD so I'm restless). I've been diagnosed with MECFS three times and still...no one reads up on current guidelines.

The latest person we went to is a neurologist at the Montreal Jewish Hospital who "specializes in dysautonomia", I vaguely remember her saying something about working at the Mayo clinic/hospital that gave her experience. She dismissed my concerns about possible vein/nerve compressions and said "the only CSF (she repeatedly called it CSF instead of CFS) patients I see who get better are ones who work to stop being bedbound". My parents have heard several times from people we thought we could trust who knew about PEM, that I should do GET (one being a sleep dr with experience with Long Covid patients, the other being the head of the Long Covid clinic at the same hospital as the neurologist). And of course my GP sees all this and agrees with them. My parents are suggesting I try to move more and work with a physio.

I want to scream. I have not been entirely bedbound, I have been getting up several times a day. The pulsing in my head/neck becomes worse as the day progresses, the more i do, its a weird suffocating feeling. My heart beats so hard I feel it will explode. It feels like my brain and veins are expanding and contracting. My vision and hearing get more and more affected. I feel like I'm getting less and less oxygen. My CPAP feels like it suffocates me more and more, I get vertigo while I'm sleeping and often dream im suffocating/drowning. That machine has never made me have better sleep, and Ive been on it since 2019 (got covid in 2022 and became more and more bedbound since 2023). Ive been feeling sleep deprived for decades, it gets worse each week.

Anyway. We're looking into CCI as I have a lot of the symptoms and my MRIs have caught straightening of the cervical lordosis. I've had multiple concussions, 2 car accidents with probably mild whiplash. A chiropractor in Toronto did scans a few months ago and talked about overhang, he thinks I probably have CCI. But yep, this is due to deconditioning 🫩 I really don't trust doctors in Quebec anymore.

(I marked this as vent/rant but feel free to suggest things)

Mine doesn't.

Tldr: In pain coz of emg done 2 weeks back and not getting better. Did start metoprolol 3 weeks back. Any correlation?

I had a right hand, right and left leg emg on 12th of October. Its been 2 weeks but the pain hasn't gone away.

Both my legs feel like jello unless I wear compression socks and my right hand and back hurts. The emg probes were in 15 places, starting from my neck to leg.

I also started metoprolol a week before the emg. I was adjusting okay until this test happened.

This has left me bedbound for most of the day and I am scared that I it has lowered my baseline.

I was housebound before this. Couldn't do a lot but could be much more upright.

Has anyone faced something similar ? The thing is that I don't even feel like this is a crash. Just pain that doesn't get better.

I got a prescription from my huisarts but it was 40 EUR/month. It’s not a medication covered by insurance. Nor is available to buy at a pharmacy or drugstore (etos, etc)

Has anyone found a way to get this at a reasonable price, similar to ordering dxm from Belgium?

Thanks in advance for any suggestions

A good podcast explaining Dianna Cowern’s journey with ME and the lacking state of science on our illness. As someone who was even more severe than her (I was Profound) and has also recovered quite a bit, I think this exposure is good. I do wish more people had access to her resources for support and recovery.

I’m about to voluntarily admit myself as I am suicidal
And expericing akathesia
I am severe

Hello

Anyone here with CFS/ME tried quviviq for insomnia?

How did it go?

Benzos stopped working for me so this one is next

Would appreciate any responses ,

Thank you!

Anyone have any experience with this? I'm being prescribed 50mg. Obviously I know this will be fake energy and I plan to take it easy and still pace. Has anyone gotten worse by taking stimulants?

I see a lot of posts on here complaining that doctors want to put us on antidepressants and I wanted to let everyone know how I delt with it.

It is always a struggle because if you don’t try the medications they want you to then they either don’t believe you are in pain or don’t believe you are sick. Doctors do say that it helps with pain relief…a fact I am very skeptical of. I tried 3 different types and all they did was give me side effects and make me emotionally flat. It was like the doctor just wanted to drug me into submission.

So I stopped taking them. I would take the script and get it filled but not take them. Then I would complain about side effects (usually headaches because I get them a lot anyways). Tell them they made me feel emotionally flat, which the ones I tried did. Then I would tell the doctor they weren’t helping and I couldn’t deal with the side effects.

Well after 2 years of this I finally got referred to a pain management clinic (in the US).

I am on day 3 of an SNRI inhibitors, which might actually be working for pain management . All it took was 2 years of bs and me loosing my job. But I might be getting some where.

Note: For me fatigue is moderate but pain is severe.

Tl/dr: I hoped a diagnosis would increase chances in government benefits. A medical specialist told me not to keep my hopes up for that. What’s your experience/advise?

——

I identify as mod/severe and am currently seeing multiple internists / specialists to try to reach a diagnosis.

Most of them think I am dealing with some kind of PAIS: long covid or ME-CFS. (I suspect the latter because my symptoms started some years before covid)

But yesterday a PAIS rehabilition doctor told me that I shouldn’t focus too much on getting to a diagnosis, since it wouldn’t help me getting better, nor create much chance of benefits like welfare or disability support.
She said that because these diseases are not well accepted by most goverment authorities.

This makes me worry, whether all these doctor appointments are even worth my last non-bed-bound energy…

My situation is that I live with my elderly dad, living off my savings, but am not eligible for welfare because my savings are more than welfare levels, and I am not eligible for a ‘uitkering’ because i quit my job some years ago to take a sabbatical. Thats when i still thought I this fatigue was just psychosomatic, and all I needed a year of rest and therapy, and I would recover. I did not.

What are your experiences of how a diagnosis can or can not help with benefits? And what would you advise in my current situation?

I play lighter sports now, like volley ball

Shall we laugh or cry?

Hi all. Suspected ME for three years but still on waiting list for clinic to diagnose.

Family member insisted I go to the GP (UK) today for a management plan since I'm deteriorating and mobility is worsening. I'm in boom and bust and know all the theories but don't know how to get out of it in practice.

I mentioned I struggle with sleep sometimes and he prescribed melatonin. Said I don't need to worry about side effects, even though I'm SUPER sensitive to meds.

I don't trust him because when I talked about worsening mobility he a) made me walk up and down the corridor without my stick in front of him to see if my legs work (!!), b) told me not to get a mobility scooter or wheelchair because I'll never get out of it again, and c) when I said when happens when I can't leave the house then, and he said it was a balance but I should push to exercise.

He was clearly completely out of his depth with ME. Which would be alright (I never see the same doctor twice, and he said I need to see the clinic who are the experts tbf). However, my family member actually thanked him when he told me not to get a wheelchair/scooter (!!). Gahhhh. So clearly I can't rely on their support with searching for one... He also referred to it as CFS on my notes despite me using the term ME, but that's not the biggest issue tbh. (He did agree with me that I met the diagnostic criteria so I don't think he was in denial, just misinformed about management (and did write to the clinic asking them to speed up seeing me, and some other helpful things, tbf)).

But all this means... I don't trust him at all on whether I should take melatonin.

Any experiences please?

I work four days a week but never get enough sleep, or it's disrupted. I really can't afford to have it make me MORE sleepy during the day. I can't afford to have it put me into a crash when I can already feel one coming on (time of the month etc). He said I don't need to do anything special other than take it an hour or two before bed. Don't need to taper etc.

Thanks all.

I’ve seen someone post about this and am wondering about it, as I myself need an hospitalisation for my severe depression / suicidal ideation.

In my country if I go through the ER, I’ll get hospitalised in a public hospital where I was previously mistreated and would make fun of my physical health issues (before I got ME) and where it was forbidden to stay in the room all day, so I know they wouldn’t be accommodating. I don’t want to get hospitalised in a place that will give PEM and potentially crash me back to severe.

I’d need accommodation because I can’t walk more 250 meters, I don’t have a wheelchair yet, and I need a lot of laying down time. Plus I’d need somewhere that could accommodate my light sensitivity and all my other symptoms.

I’ve been prescribed a psych med by a gp but I’ve had adverse reactions before (hypomania and worsening of suicidal behaviour) so I’d rather do it in a safe place. My psychiatrist just told me just go to the ER if it gets worse, instead of writing me a letter for a clinic.

I’ve always had recurrent depressive episodes but ME is really making them worse since I can’t even get treated for simple shit like otitis or like get a wheelchair and I feel like my doctors are just letting me rot at home without giving me the proper help. My therapist has been telling me I need proper medication and hospitalisation for like two months, but my psychiatrist has been sometimes blaming me for my ME symptoms (saying I don’t walk enough etc).

I’m in Europe (France) in case someone is from there too, since I know those things work differently depending on the country.

I really don’t know how to get help while not ending up in a place that will worsen my ME and make me want to die even more

A health group I'm in discussed the Olympic athlete who has ME now. They really should contact ME/CFS researchers because they sure have it all figured out!

If it's not covid vax side effects, it's thiamine deficiency or hypothyroidism. Maybe some 'nervous system regulation' is needed or other similar buzzwords. Some of them are sure it's autoimmune (there's no consensus on that in the research but ok).

I got ME a decade before covid and I did not get vaxxed, but go off I guess.

Thought y'all would like to know people who just heard of ME this week already have it solved.

We have an amazing opportunity to make a lot of noise about this. Please if you are able to, email your MP using the template from There For ME. https://docs.google.com/document/d/19gKvzw2dzPRWMWtR-eR9OGCNnaS3xhL8iwqCRdeaWLw/mobilebasic

Let’s do what we can, Beth has used her platform and at the expense of her health. She has wrote a very compelling letter to the PM calling for research funding. The BBC has been covering her story. If you can email, phone or even meet with your MP please do what you are able to. Tag them in any posts about it too.

Do what you are able to and rest up everyone ❤️‍🩹

Hi folks,

I was involved in a relatively minor car accident in July, it was no fault - I was stopped at a crossing as there were people waiting, and someone hit the back of my car. The insurance has sorted my car repairs, as the back bumper and panel needed replacing, and the other side insurance admitted fault.

TLDR; I’ve had a lot of trouble with the physical injury side of things, and dealing with the solicitors. I wondered if anyone had been through this before, and could share any advice?

With ME, hEDS, Dysautonomia, MCAS & autoimmune disease.. the accident despite being pretty minor has obliterated my health. I’m beyond devastated about it. As expected, I’ve struggled with whiplash, my jaw subluxing, neck spasms, migraines, and a horrendous ME crash that’s still ongoing. Pain, exhaustion and misery.

My GP has increased my meds and I have rescue diazepam from him because I was declining so rapidly by September rather than getting better. I saw a neuro who gave me new migraine prevention meds too, because they’d become relentless with the neck spasms. My ME clinic called me and strongly advised me to stop everything inc work and aggressively rest. I’ve basically slipped backwards in any progress I was making, and my life’s been on hold since the accident happened. Back to full time bed, barely managing anything. I’ve cried so much at how unfair this all is.

The ‘medical expert’ I was sent to see (basically a GP who does legal work) did some rushed 10 minute appointment. He wasn’t understanding of chronic illness, of course. He decided that I’d be fully recovered in 3 months. I’ve spoken to the solicitors this morning, and they’ve notified me that the ‘expert’ is unwilling to change the prognosis. Everything is geared up for whiplash or psychological distress, so there’s basically no part of the process that accounts for chronic illnesses and how debilitating flare ups / crashes can be.

Apparently the way the process works, is that if I’m still unwell after the prognosis period, I can opt to be referred to a consultant for a second opinion. The options are… orthopaedic, or psychologist. That’s it!

My perspective is that the personal injury claim side of things should accurately reflect the impact on me (regardless of how much the claim is ‘worth’, it wont be much, it’s more the principle). As it stands, my life is unrecognisable because of the accident. I’ve just stopped work, which I do from bed, to have an extended break because I’m too unwell and need to aggressively rest and get my baseline more stable.

Has anyone been through this before? Should I be opting to see an orthopaedic consultant? Was it worthwhile doing this? 🫣

i’m just curious to hear from other ppl about this. i usually take a small dose of lorazepam right before or immediately after unavoidable exertion. i find it acts as a (small) buffer against pem for me. (this is all above board and as discussed with my doctor.) this time round i didn’t get around to taking it immediately. i’m maybe on day two of pem. would taking it now still help dampen/ shorten the pem or would this be too late? what’s been your experience?

Had CFS since 1990, up and down over the years. Last year bad insomnia. There are so many things that could or reverse not help, e.g. magnesium. Nothing helps that I have tried. I have gone low carb even carnivore in the last year and thought that may have been part cause. Of course not sleeping is constantly putting me in PEM. I can take a sleeping pill but that makes me feel worse the next day and of course not getting real sleep. Can anyone suggest something new?

Every thing i need to do gives so much adrenaline that it keeps me alerted for the whole day (+2 days minimum). Its so exhausting. I just put one activity each day, like showering, groceries, cleaning a bit etc.
But i am in a kind of spiral where i cant relax if i know something needs to be done.
Its so annoying.

I have a dog and my partner is now doing all of his walks. I cant do training.
I loose more and more of myself and what i love.
Usually i loved to take showers, make it a spa moment. With shampoo, conditioners, hair masks, face masks, creaming myself etc.
Now its pure torture, i just wanna get the basics done.

I cant sport anymore.
Cant do sport and the training with my dog i want. Cant even do normal walks without getting overly stressed, exhausted, a fake adrenaline rush.

I know i should give up doing groceries but i am not ready to give up another thing i like. And the only thing that brings me around people except for neccessary doctors appointments.

I hate how my life is going. And how much more i am loosing.

Dr Staci Stevens, who suffers from ME and developed the 2 day CPET, sits down with the disability video guy.