Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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The original was posted on /r/cfs by /u/Whateverville on 2025-01-27 22:54:07+00:00.

I didn't really think I could get to this point, but I suppose everyone has that thought process at first. Walks outside cause PEM that lasts for a week or more. I have things to do and take care of and I have no idea how I'm going to do this. I don't know what I'm going to do. This is surreal.

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The original was posted on /r/cfs by /u/RosesAndPonds on 2025-01-27 22:15:46+00:00.

Mine is being so darn cold when I’ve over done it. Doesn’t matter how warm my environment is, if I’ve pushed my body too far past its breaking point, I will literally be shivering.

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The original was posted on /r/cfs by /u/SherbetLight on 2025-01-27 20:25:38+00:00.

Original Title: ✨

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The original was posted on /r/cfs by /u/daHaus on 2025-01-27 17:10:18+00:00.

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The original was posted on /r/cfs by /u/Safe-Trainer-441 on 2025-01-27 18:53:54+00:00.

I still can’t work out if it’s PEM or a warning for PEM or is that just a symptom of daily CFS life?

Reason being it comes and goes - like on and off. 5 minutes I’ll have it then it’ll go away. If it was PEM, surely I’d need to “rest it off” for a period of time?

I just woke from a nap (I had no PEM when I had the nap) but I woke up with a sore throat lol and feel worse? I was resting so how does that make sense ffs🙄

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The original was posted on /r/cfs by /u/Batwhiskers on 2025-01-27 18:07:57+00:00.

I don’t mean to start anything of course, just wanted to address something I’ve seen. I’ve seen multiple posts in the past few days “challenging” others disability or their experiences with cfs. You are not a damn doctor!!!! I am able to work, but barely, maybe 6-4 hours a week. It kills almost all the drive I have for my hobbies, but I’m still slightly functional. Just because someone’s able to do certain things doesn’t mean they don’t have ME… the ableism I’ve seen recently is gross. You are not a doctor, you do NOT know these peoples personal medical history. It’s incredibly rude and invasive to assume someone’s faking.

I am very lucky to have the ability I do have, but this doesn’t mean i don’t have the illness. I need a wheelchair, I spend most my time recovering, and I’ve had to pause a lot of things I enjoy (especially outside hobbies like bone collecting) cause they throw me into PEM. I definitely sympathize and care for those who have a more severe form of the illness, but this doesn’t give you a right to assume others are faking. I’m sorry, unless you are a doctor actively treating that person you have no right.

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The original was posted on /r/cfs by /u/Senior_Line_4260 on 2025-01-27 17:10:52+00:00.

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The original was posted on /r/cfs by /u/Usernams161 on 2025-01-27 10:46:53+00:00.

Having a boyfriend who understands what it's like to be chronically ill is often so validating and wholesome. They know your special needs, you know theirs and you can take care of each other and be good to each other, depending on who's doing currently better and who is doing worse. But right now it's one of those situations again where we both are in pain and having a bad phase in general. It really sucks to not be able to help the other person when you see they're clearly suffering. And it's equally awful to reach out for the one you need and want in this situation but you're just grasping at nothing. I feel so incredibly lonely and down... And I really wish my support network was bigger than just him but most of my friends are really struggling themselves or don't really get what I am going through so I reaching out to them ends up making me feel lonlier than before.

EDIT: I forgot to mention that we live 20min apart from each other using public transport

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The original was posted on /r/cfs by /u/Internal_Candidate65 on 2025-01-27 14:09:39+00:00.

GIVE IT TO MEEEEEEEEEEEE 🥲

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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.