Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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The original was posted on /r/cfs by /u/m_seitz on 2025-01-27 08:08:00+00:00.

I just read an article about the European Committee for the Prevention of Torture (CPT) complaining that Norwegian prisons sometimes isolate prisoners for more than 22 hours, and saying that "action needs to be taken to alleviate such a restrictive regime".

Apparently, 2 hours of meaningful human contact per day is seen as torture. More than 15 days of isolation is classified as "prolonged solitary confinement".

"Meaningful human contact" is defined by the Mandela Rules as: "... human contact to be face to face and direct (without physical barriers) and more than fleeting or incidental, enabling empathetic interpersonal communication."

To my utter surprise, YouTube videos don't count as human contact!!! 😱

There are many other groups of people who are isolated. Old people, and many with chronic illnesses other than ME. Still, reading that it is seen as inhumane to isolate prisoners for longer than 22 hours a day, while many of us experience 24 hours of isolation per day for most of the year ... damn!

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The original was posted on /r/cfs by /u/Covidivici on 2025-01-27 05:32:13+00:00.

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The original was posted on /r/cfs by /u/NarwhalAny8950 on 2025-01-27 03:39:02+00:00.

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The original was posted on /r/cfs by /u/wisely_and_slow on 2025-01-27 02:52:23+00:00.

Do you have a warning sign that you’re pushing too hard and need to immediately stop?

I don’t mean PEM, I mean the quiet or not so quiet warning that you’re causing PEM.

I’m still trying to identify mine. I can get a bit headachey (but with high frequency episodic migraine it’s not foolproof) when I’m pushing too hard and I think I start getting clumsy before any other symptoms show up.

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The original was posted on /r/cfs by /u/rattenglamour on 2025-01-27 00:07:38+00:00.

it sucks so much having to keep all these heavy emotions in

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The original was posted on /r/cfs by /u/Mad_Cerberus on 2025-01-26 22:47:30+00:00.

Is anyone else baffled by how Flea (Red Hot Chili Peppers) is supposed to have CFS? This guy seems like he has the extreme opposite of CFS!! Wtf is going on??

He was diagnosed with CFS in 1993, and was told to rest for a year. 1994 he was playing on Woodstock '94 and jumping around and shit, as always, as if nothing had happened lol. This makes ZERO sense. Do celebrities have access to some fking miracle drug or treatment that cures this shit??? I need an answer!!!

Why doesn't he and all the other celebs who have had CFS and then got 100% cured just come out and share their cure??? Why not help the millions of people suffering from this shit??

Edit: RHCP were also touring in 1993, I'm pretty sure they were at the festival in Rio de Janeiro with Nirvana. So he must've rested like a few months. WTF.

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The original was posted on /r/cfs by /u/wet-leg on 2025-01-26 17:13:48+00:00.

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The original was posted on /r/cfs by /u/YolkyBoii on 2025-01-26 13:58:26+00:00.

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The original was posted on /r/cfs by /u/CelesteJA on 2025-01-26 12:56:59+00:00.

It'd be interesting to know what kinds of jobs you all had before you got ill and had to quit.

I was a professional artist for 12 years before becoming ill. I do miss my job quite a lot.

What about you guys?

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The original was posted on /r/cfs by /u/yellowy_sheep on 2025-01-26 12:37:54+00:00.

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The original was posted on /r/cfs by /u/GetaSubaru on 2025-01-26 02:33:14+00:00.

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The original was posted on /r/cfs by /u/middaynight on 2025-01-26 02:15:01+00:00.

you ever feel like you wanna just

punch a pillow

but that's too much exertion so you just

sit there

not punching a pillow

bc same lol

man, trying to grieve when grieving gives you pem is fun

honestly tho I would have a great time in one of those rage rooms (?) where the entire point is to smash everything in the room. it looks so therapeutic

alas I have ME. the very reason I would love to do that is the very reason I cannot. bleh

wishing you all some good quality rest today. be kind to yourself. and remember you're worthy of love no matter what

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The original was posted on /r/cfs by /u/Sad_Half1221 on 2025-01-26 00:16:06+00:00.

My first Reddit account, my main, is for all my interests and hobbies.

My second is for some personal stuff I’m working through, not important what.

This is my third, my illness account. Because honestly, I didn’t want to think about it all the time.

But I find myself spending the most time here, connecting with you all. This sub, r/POTS, r/longcovid, and r/covidlonghaulers are all filled with the kindest, most supportive, most understanding people.

Y’all are amazing. You keep me moving forward when I can. You help keep me alive when I’m not moving at all. Connecting with you gives me one more reason to not just lay here and rot.

Thank you for everything you’ve given me. I hope I’ve given at least some of it back. I’m trying my best.

Keep on being marvelous human BEings (I stole this from one of you and wish I could remember who, would love to tag them.)

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The original was posted on /r/cfs by /u/TheAnimal777 on 2025-01-25 23:45:07+00:00.

Hi, I'm a 42 year old male with moderate CFS, EDS, long covid, dysautonoia, severe depression, anxiety, and besically am doing very very bad in all aspects of life and health. My blood pressure is consitantly areound 80-90 so I'm always lightheaded and dizzy and I was diagnosed with heart failure a few years ago but that has improved. I have been sick since 2021. I was so sick a year ago that I was looking into Euthanasia, but I have improved to moderate now so as long as I don't get worse again that option is out for now.

I also haven't worked since 2022 and have hardly any money left. I live with my disabled girlfirend who is 43 and had a severe hip injury in 2021. She has no income either. We are able to get by because my father gives me $1500 a month until i can get disability which may take years, but we are straight up poor. It's not even close to enough and I worry about when my last $10,000 of life savings goes away in about a year if I'm lucky.

We are also relying on family to help us with physical needs but they are in their 70s, and 3 of the 4 parents in question have health issues of their own. They'll probably be helpful for realistically only 10 more years.

Well my girlfirend told me her doctor said there was a 0% chance of her getting pregnant and I trusted her so I stopped using protection as she assured me it was impossible.

So she is pregnant and wants to keep the baby regardless of my opinion, as it is completely unreasonable. I suspect she did it on purpose because we fight a lot and having a baby would ensure we stay together, but I am not 100% certain.

I'm worried that the child will eventually get taken by the state.

My other worry is I used to be severe and this could send me back into severe and if we eventually break up and I am required to pay child support, they could throw me in jail since they won't give me disability. I heard that if you have zero income and are required to pay child support they'll throw you in jail anyway as it is your responsibility to provide. I can't even take more than 1 shower a week, how can I support a child?

My questions are

A. How screwed am I?

B. Is it possible to receive enough resourses from government to raise a child if disability is not an option since they deny long covid and CFS sufferers?

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The original was posted on /r/cfs by /u/Nkotb79 on 2025-01-25 22:49:39+00:00.

Do any of you get a feeling of severe irritation/anger/ right before PEM like you could explode? (Like severe PMT/PMS if you are female) A feeling like everything annoys you? Like an anger building in your chest and also feeling sometimes emotional or teary? or am I the only one?

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The original was posted on /r/cfs by /u/Few_Fan5453 on 2025-01-25 22:24:25+00:00.

I have realized after 2 years of mild then severe CFS that emotional stress is far more destructive to my health and creates a longer lasting PEM. I found this out when I had to actually work on my car once to prepare it for sale since I no longer can drive them.

First car was easy to clean up but during the process i received a stressful call from insurance company over a denied claim and i was emotionally distraught. Within 48 hours i had a PEM that lasted 2 weeks despite aggressive rest right after the event. I was also on LDN which is supposed to reduce PEM severity but it wasn’t working.

The second car i worked on two months later. This car was much harder to work on and prep. i had to pull parts out and install factory ones back in and the entire process took an hour. 48 hours later I was prepared to pay heavily for this physical exertion but nothing happened. I had a bit of chills and pain but nothing serious. I still was resting in bed all day as usual but no significant malaise.

Many examples like this have happened over the years. For example visiting my parents for Christmas but I would be just sitting there calmly, not speaking nor moving much, preserving my energy. But another time i had a video call with a few coworkers and it was very stressful, i immediately crashed after the call with PEM.

Interestingly another curious thing I noticed is sometimes I have a really bad PEM and am sweating and in chills heavily but then all of a sudden the symptoms disappear and i sit there feeling like i have just barely survived death but generally start to feel better. no idea what this sense of relief is or what causes it. it’s rare tho.

I find emotional pacing is actually much more difficult than physical one. for one thing i can’t really do therapy sessions as the stress from it throws me off into PEM. So it’s hard for me to learn skills to keep my emotions in check. i just need to avoid getting angry or emotional.

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The original was posted on /r/cfs by /u/Disabled-Deer on 2025-01-25 20:31:37+00:00.

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The original was posted on /r/cfs by /u/missCarpone on 2025-01-25 18:56:14+00:00.

TLDR: Looking for a mostly safe way to shower, wash as very severe to get rid of dead skin and grimey hair. Beyond wet wipes.

I've become very severe through a crash bc didn't know I had either me or long Covid, 4 months ago. I'm bedbound 24/7, 99% of the time. Can sit up to scoot onto the commode, that's my mobility level.

The buildup of dead skin and the grime in my hair are driving me nuts.

I really want to stop being able to scrape dead skin off my body every time I scratch. I really want to stop itching.

Being washed isn't really working bc humidity will make the dead skin flake and it takes ages to brush that off, and then it ends partly in the bed. Ugh.

I've read a lot of posts on hygiene but only one from so "severe/v. severe".

So, if there are any very severe people on here, do you shower, wash, even partly, and if so, how do you avoid PEM hell and further baseline deterioration?

Thank you.

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The original was posted on /r/cfs by /u/AnnoyedAFexmo on 2025-01-25 18:16:24+00:00.

3 days have come and gone and somehow someway I'm still hanging in there improvement intact.

Curious, I decided after 2 days of nothing but resting my incredibly sore muscles to do a bit of a stress test. Normally this would be absurd and dangerous but I had a feeling this would be ok. I feel dramatically different. I don't get out of breath as easy. The sea air has done wonders.

I went on a just under 40 minute train ride yesterday (a first since 2020) followed by some walking around. Taking care to listen to my body and kneeling or sitting down as my body required me to, I managed to walk around what I estimate to be around 3 miles.

I even did some swinging on the swings of a park which was freeing.

I called it when I started to feel my strength fading but I managed to get back to the train station, and ride it back and get home safe.

Today I am not nearly as sore but I clearly am a bit tired from yesterday's journey. I'm not going to push myself every day as that would just wreck me. Push, rest, push a bit more and rest but listen to my body the entire time.

I'm cautiously optimistic and I'm hoping that this will indeed last

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The original was posted on /r/cfs by /u/Various-Violinist645 on 2025-01-25 13:57:36+00:00.

A beautiful and inspiring 5min video from her perspective of living with CFS. 🙏🏻

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The original was posted on /r/cfs by /u/younessas on 2025-01-25 08:49:54+00:00.

1-Did it slow down your brain or you feel like it increase energy

2-Did it makes you worse

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The original was posted on /r/cfs by /u/moonlightbae222 on 2025-01-25 12:08:54+00:00.

I got diagnosed in 2019, when I was just 12 years old and ever since it’s kinda felt like people don’t believe it. I always get told I’m ‘too young’ or they act like I’m lying about what I can or cannot do. I remember getting a taxi to go to a concert with my friend and we put my wheelchair in the back of the car, the entire way there the driver was asking why I needed it and telling me I was too young and needed to eat better and workout even after I tried to explain. It made me feel so uncomfortable because I never asked for his advice about my illness. Even inside of college the staff don’t understand what ME is and what it does to my body and it’s exhausting. I think I’m also a little annoyed about how my life ended up, and that I got ill at such a young age, I didn’t really get to have a normal teen experience. All of my friends don’t really care about me because I can’t walk far enough to go and hang out with them at lunch. I don’t expect them to abandon that for me, I’m not saying that, but they don’t even try and have lunch with me even once. Most of the people I meet who are my age just aren’t mature enough to understand and realise exactly how this is for me. I remember trying to tell my friend about my illness and she just completely ignored my messages and talked about something else, and the second time I tried she just ignored me even though I was physically talking to her this time. We’re not friends anymore but I do think about it a lot and how horrible she made me feel. Any other young people with ME here?

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The original was posted on /r/cfs by /u/moonlightbae222 on 2025-01-25 11:51:08+00:00.

Just a warning for all of you with ME/CFS to be aware of the new flu and to avoid being around people with it as much as you can, it is truly a killer. I recovered from the illness 3 weeks ago and I’m still physically recovering on the ME side of things. It was worse than covid for me, was bed bound for over a week and could hardly move. Stay safe out there!

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The original was posted on /r/cfs by /u/squidsgotjeanss on 2025-01-25 01:48:09+00:00.

This is a weird one, but I notice if I sit at the computer for 30+ minutes my symptoms get triggered. My face feels hot, shaky, headache, feeling too cold or too hot, overly exhausted, etc. Always sends my CFS/POTS into over drive.

I feel like the most random things set me off! Besides hot showers being an obvious trigger my others seem to always be Sitting at the computer Putting on & wearing makeup Eating too little Leaning over too long Eating too much 😫

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The original was posted on /r/cfs by /u/sicksages on 2025-01-24 23:44:06+00:00.

I haven't seen my family in a few years so they haven't been knowing about what I've been struggling with. I decided to tell my sister about it yesterday and she immediately mentioned trying "home remedies" and "foods or drinks" that could help me. I know she's trying to be helpful but man was that infuriating. If I could solve this by eating different or making some sort of health potion at home, I would've done it already.