Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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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.

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The original was posted on /r/cfs by /u/SnooCakes6118 on 2025-01-24 20:30:07+00:00.

Yeah so as we all know going from a young person who can do anything to a piece of meat on a wheelchair is ...hard! (Understatement of the year)

And we have to tolerate family members and acquaintances acting weird on top of that?

So a person loses their everything except for her soul

And you act like I'm odd?

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The original was posted on /r/cfs by /u/shuffling-the-ruins on 2025-01-24 20:21:42+00:00.

It felt amazing and freeing to be heard. This friend does not have ME and they were genuinely curious. They asked more clarifying questions and showed they were truly hearing me. We talked for like 30 minutes about it.

Afterwards I took a nap and slept better than I have in ages.

I can't help but wonder if some tiny portion of this burden could be lifted if the people in our lives took the time to hold our stories with loving attention.

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The original was posted on /r/cfs by /u/Big_brother2 on 2025-01-24 18:59:21+00:00.

I am not sure whether I have CFS or not, however I have very close symptoms. I am a 24M.

I have always been trying to work or study despite all, even for very little hours a week, but I feel it still hurt my health so much and that I just need to rest.

I feel so much guilt with telling people I am once again about to quit ( I did quit soooo many time in my life ) to take a year off ( I already took a 4-month break - which helped a bit in the past but it was too short ) + telling them I am taking a year off when I will be.

I feel like a failure and I am afraid people will think I am lazy / a looser too.

How do I deal with that ?

Thanks

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The original was posted on /r/cfs by /u/j3st1cl3s on 2025-01-24 18:42:12+00:00.

I just wanted to come say thanks. I use this sub to ensure I'm not losing my mind with symptoms.

I wish all of you all the luck with everything you endure.

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The original was posted on /r/cfs by /u/Avzgoals on 2025-01-24 18:25:27+00:00.

This might be an incredibly stupid question so please don’t come at me if it is, but I’m genuinely wondering… Considering resting/pacing is our only “treatment” across the board, and it seems that the #1 way to improve is to avoid PEM so your baseline increases over time, would getting a medically induced coma help you improve? Obviously there’s a ton of factors that go into this, but theoretically, if your body is put to rest for a while you wouldn’t be triggering any physical, mental, or emotional PEM. Therefore “energy” will be built on over time. Maybe your brain could also have the ability to focus on healing as well. I’ve read plenty of stories of people going to mild or even remission from completely avoiding PEM for 6months-1year, not even doing anything if they felt well enough.

I came up with this because sometimes I just want to be put to sleep because the symptoms get so excruciating and it’s living torture.

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The original was posted on /r/cfs by /u/littlewolf on 2025-01-24 17:03:30+00:00.

Hi everyone.

On another post I saw someone mention they wish this illness was called something else. I have always agreed because Chronic Fatigue Syndrome is so easily dismissed since people mix up being tired and fatigued.

So I’m curious, if it were to be renamed what would you want it to be called?

This can be joking or serious and is mostly meant to be a post to bring community together on something we all probably agree on.

Hope you’re all having a low symptom day 💛

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The original was posted on /r/cfs by /u/TechnicianFlat2132 on 2025-01-24 14:27:02+00:00.

I talk to like one or two people and one I got really close to, they talk to me every day but I feel like I’m forcing stuff and I started seeing red flags ages ago when they started being rude for no reason then I bring it up and they act like nothing happend. They just said to me in text something like this in a sentence I forgot the rest but “When you talk on call you sound so tired and it ruins my vibe” I straight up said are you fking serious? “How many times do I say I’m so appreciative for you and so much other stuff” And I don’t get the same stuff or energy said back to me. Oh yeah and only when I said something he goes “sorry man I didn’t mean to say it like that” and there’s been many times I apologise for no reason and he never apologised for something he did. Even on my birthday they just said happy birthday bro when It was his birthday I sent like 3 sentences including how appreciative I am for him. I’m not taking this disrespect anymore even though I have no other friends, I would rather be by myself than be treated like that and I know I’m better than that and he doesn’t deserve me. So I deleted Snapchat and I’m gonna ghost him, I also said once do you really enjoy calling and playing games or are you just bored and he just he’s just bored so gets on like do people not have fking brains? It’s actually insane. But it’s okay because I’m not going to stoop down to his level, if I ever get better, I am going to become a fighter and follow my dream. I also don’t know who he thinks he is talking to me like that, this doesn’t matter at all I know but I know I would destroy him for talking to me like that but I’m just leaving it and not saying anything else. So yeah now I don’t really have no friends just talk to some people sometimes but yeah I rather be alone and I know he’s just insecure about himself because he weighs 25kg under me in muscle and jealous of me and you can tell. Sorry if this made no sense but people treat you different when you’re sick.

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The original was posted on /r/cfs by /u/Neon_Dina on 2025-01-24 08:58:13+00:00.

I am in awe of how smart the internal processes in the body are (with all these various feedback loops). I think I developed long COVID around 2021, and I am currently severe (can’t work or do home chores; bedridden), waiting for an ME/CFS diagnosis.

1.5-2 years ago, I started gaining weight out of the blue and ended up with 20 extra kilograms. At the time, I had no idea I might have ME/CFS. I was trying to stay active even though I could no longer work, which only made my symptoms worse.

Fast forward to now, and my health has deteriorated to the point where even attending offline doctor appointments or procedures leaves me with awful PEM for days after. Recently, for the first time in my life, I struggled to eat despite being ravenously hungry. I was so nauseated that I was throwing up for three days.

What’s struck me through all this is that I owe my body an apology. For so long, I’ve treated it like a broken, uncooperative alien for not functioning how I wanted. But now I realise that it’s been doing everything it can to keep me alive against all odds.

Even the unexpected weight gain, which frustrated me so much at the time, has probably saved me from being even more miserable now. It’s clear to me now how finely balanced all these internal processes are and how hard my body is fighting.

I guess I just wanted to share this as a kind of epiphany. If anyone else is struggling with their health and feeling at odds with their body, maybe this perspective might help. You’re not broken, your body is trying its best to protect you.

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The original was posted on /r/cfs by /u/Senior_Line_4260 on 2025-01-24 17:10:54+00:00.

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The original was posted on /r/cfs by /u/uncreativeusername75 on 2025-01-24 15:49:44+00:00.

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The original was posted on /r/cfs by /u/microwavedwood on 2025-01-24 10:42:47+00:00.

I'm constantly exhausted but I still feel exhausted after sleeping. Oh but if I get an hour less sleep than usual I'll feel terrible for the day

Hunger makes me weak and shaky but I now have stomach issues that make eating painful

I get cold really easily but if I try to warm myself up I overheat

I'm more emotional but if I feel more emotion it causes my symptoms to worsen

I can never tell if I'm shaky because I'm cold or if it's my body just acting up

Migraines. That's it, that's the entire point

If I don't exercise/be active I say goodbye to muscles, but if I do exercise/be active I say goodbye to most things I can do for who knows how long

My body hates when I overdo it but it's not always obvious when I overdo it

It's like PLEASE just make up your mind. My body is ridiculously indecisive lol

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The original was posted on /r/cfs by /u/Patriot98765 on 2025-01-24 09:06:13+00:00.

I acknowledge that stress and anxiety can make my pain worse, but he was saying fibro is a cycle and alluded to fatigue as a mental health issue. It seems that GPs in the UK are taught that this illness is a mental health issue, and I believe it's to peddle more SSRIs and pain medication.

He's prescribed me gabapentin, but I don't want to become reliant or addicted to it. Has gabapentin benefitted anyone long term?

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The original was posted on /r/cfs by /u/KindestSheltie on 2025-01-24 02:46:27+00:00.

MODS: I did a search and couldn't find any posts about this article. My apologies if it's a repeat.

This would be awesome protection.

Quote: "Researchers from the Institute of Science Tokyo and Osaka Medical and Pharmaceutical University said that they have developed a peptide that can bind to the spike proteins of SARS-CoV-2 to prevent COVID-19 infections.

"The peptide, which is a short chain of amino acids, has shown effectiveness in experiments involving various coronavirus strains attempting to infect human cell lines and hamsters.

"Researchers hope to conduct a physician-led clinical trial for possible preventive and therapeutic treatment.

"'The peptide comprises 39 natural amino acids, and it is inexpensive and easily synthesized,' Institute of Science Tokyo Distinguished Professor Yoshinori Fujiyoshi said. "'It only binds to spike proteins, so it can be considered to have no side effects.'"

Source:

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The original was posted on /r/cfs by /u/Hello_ME_23 on 2025-01-24 02:05:39+00:00.

Earlier today, I left my boyfriend to spend time away from home, thinking it would be good for me. Last weeks we had a lot of tension, pointledd discussions and everyone told me to leave him. I cant just leave him, so I tought of a break, just some weeks apart. So last night I came to my parents house.

But now, I’m in so much pain, and I feel completely overwhelmed. I haven’t experienced this level of pain in months, and I’m really struggling. It feels like I made the wrong decision. I think I focused too much on what wasn’t working in my life instead of what was going well

I’m dealing with a ME flare-up and a PEM crash, and it’s been a lot. Earlier today, I was in such a panic when I said I would leave him and packed my stuff. I had a full-blown anxiety attack, something I haven’t experienced in a long time. I couldn’t even speak, I kept breaking down into tears and gasping for breath. It’s terrifying to feel like this, and now I’m realizing how much I miss the comfort of home. I know realistically that my partner would be here for me, helping me breathe, comforting me through the pain. Why did I leave? I feel so stuck right now.

Has anyone else experienced this kind of situation, where after making a decision, you feel like you’ve made the wrong one? How did you handle it? I just want to find some peace right now.

Can I go home tomorrow? Or is that just to bipolar? The whole purpose of this was to do what I wanted to do, what felt best for me. But this doesnt comes close to even feel good, obviously I have reasons that I wantrd a break, but this situation is less ideal What should I do? I feel completely lost and stupid

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The original was posted on /r/cfs by /u/Croque-Madame7 on 2025-01-23 20:11:38+00:00.

Does anyone else feel in a constant state of panic and anxiety? It does feel very physically triggered. but can also be accumulated bc of stress and insomnia.

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The original was posted on /r/cfs by /u/b1gbunny on 2025-01-24 05:19:31+00:00.

We’re monogamous. He’s been my caretaker and rock while dealing with becoming severe the last 2 years. We’ve been together since before I was ill. I am a fraction of who I used to be and who he fell in love with.

The sexts were graphic, detailed and there’s tons of them. Everyday for at least two months. Some while laying next to me in bed, when I was too severe to really notice. Some pictures too. Lots of suggestive implications that they were going to be physical at some point. I’ve reached out to the woman and she denies it ever was actually physically and that it likely never would be. He said the same thing. Hard to believe with how many times they told each other they “just wish I could touch you right now.”

I could vomit.

I have no one else. I have nothing else. I don’t know. I love him so much and I’ve never been so hurt - “hurt” doesn’t even describe it. I understand why he did it. But it can’t be undone. I have nowhere to go.

Any thoughts or insight or advice? I don’t know I just. No one else can understand. I am completely reliant on him in every way. I also love the fuck out of him. But now I know he’s capable of betraying me like this… we even spoke about his needs not being met and discussed multiple times we’d talk before it got to that point and he denied it every time.

I’m lost and broken and alone.