Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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The original was posted on /r/cfs by /u/microwavedwood on 2025-01-20 17:17:59+00:00.

Disclaimer, this is not a post making fun of religion. Don't turn it into that and don't comment about turning it into that. Everyone is entitled to their own beliefs. Don't hate on others for theirs. Maybe this disclaimer seems unnecessary but I've seen enough of those religion hating Reddit atheists, I don't want to attract them lol. If this post attracts controversy I'll take it down. I'm happy to hear the views of religious and non religious people here, do not attack anyone.

When people say their god will heal me it always rubs me the wrong way. I'm not exactly sure why, I just don't really like it? Reminds me of when they say it's part of god's plan or everything happens for a reason.

Like if their god was going to heal me couldn't they have done it by now? Or prevented the sickness in the first place?

I understand that it's a gesture of good will. There is nothing they can do so they pray for me. I thank them and move on, but I'm not sure why it makes me feel so weird.

Maybe it's just because this condition has made me lose any faith I had. Anyone else have experience with this?

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The original was posted on /r/cfs by /u/Safe-Trainer-441 on 2025-01-20 17:01:18+00:00.

I got my first PEM episode / rolling PEM out of nowhere (but maybe now in hindsight I could see years back I had small signals but you put it down to just usual life tiredness).

When it happened I genuinely thought I had covid / flu / ebv (but all tests were negative). Then it started to “go away” and you think you’re getting over it, then it starts up again! And you think wtf is this? Why is this virus not going away? Genuinely thought I had a virus for 4 months!

Little did I know it was good old rolling PEM! I was ignorant and thought MECFS was a syndrome where people slept/were tired a lot. Had no idea it was multi-systemic and PEM felt like flu or I would have picked it up sooner.

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The original was posted on /r/cfs by /u/Lunabuna91 on 2025-01-20 15:11:08+00:00.

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The original was posted on /r/cfs by /u/Jukarii_ on 2025-01-20 12:44:40+00:00.

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The original was posted on /r/cfs by /u/Minute_Profile_769 on 2025-01-20 06:21:48+00:00.

Unfortunately it’s not just hard on us to be this sick but it’s hard on the people around us.

My diagnosis and decline are relatively recent, and my parents are now my caretakers. While I know they’re trying to be “strong” for me, I can tell that watching me decline and watching my future slip away is destroying them. They try to hide it from me but I can see that they’re devastated to see their child bedridden and grieving.

I love them so I’m of course sad that they’re sad, so is there anything we can do to support those around us?? I know it sounds like an insane question but really is there any way to make this better for everyone?? Is there family therapy out there with someone who understands this condition specifically, maybe?

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The original was posted on /r/cfs by /u/tvajoan on 2025-01-19 23:16:12+00:00.

i have been thinking more and more about getting a pet, the want for companionship and company being the main reason, but having ME obviously makes that a challenge! what pets do you guys have? would you recommend any pets? pros and cons? im UK based and just looking for a discussion!

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The original was posted on /r/cfs by /u/OneNapToRuleThemAll on 2025-01-19 16:18:28+00:00.

Hi everyone,

I’m looking for advice on how to make body lotion application easier. I have super dry skin and can’t shower often, which makes moisturizing even more important—but also more challenging. I struggle with fatigue, pain, and limited mobility, so any tips, tools, or techniques to make this process more manageable would be greatly appreciated.

Additionally, if you have any general life hacks for managing daily tasks with limited energy or mobility, I’d love to hear them too.

Thanks so much for your help—I really appreciate it!

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The original was posted on /r/cfs by /u/conpro1224 on 2025-01-20 08:33:20+00:00.

sorry just venting rn but i can’t comprehend that the summer of 2021 i was playing semi-professional soccer & by the summer of 2023 i was completely bedridden. like wtf happened? :((((

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The original was posted on /r/cfs by /u/whimsicalme on 2025-01-20 00:09:00+00:00.

Are they ever worse than a mild sore throat/fever? Or can they intensify enough to look like a full-blown flu/covid/strep throat/whatever?

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The original was posted on /r/cfs by /u/wyundsr on 2025-01-20 02:16:48+00:00.

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The original was posted on /r/cfs by /u/Cute-Cheesecake-6823 on 2025-01-19 22:59:05+00:00.

I LOVE Unpacking. Everything about the pixel aesthetic (brainfog not sure if this is the right word lol), the slow pace, and subtle story telling. Ive replayed it countless times on my Switch but now I'm ready for something new. Im bedridden with severe OI and head pressure, and pretty severe cognitively so I can't be upright to use my computer or play more intense games. I already had it on Steam but missed it so much, I bought Terraria on my Switch..it was WAY too much. So are BOTW, TOTK and Dont Starve. I have a feeling Stardew would be similar (and tbh I could never get into it even before this).

Any suggestions on the Switch for simple and cozy games similar to Unpacking? Memento looks neat but it isnt out yet. My budget is pretty small so anything more than $20 CAD is a stretch for me.

Thanks! ❤️

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The original was posted on /r/cfs by /u/OldMedium8246 on 2025-01-19 22:36:36+00:00.

Google can only take me so far. My geneticist told me straight up that often times, management recommendations from others with the same illness are more useful than a doctor’s recommendations. Wondering if the same applies to ME/CFS comorbidities.

I have Loeys-Dietz Syndrome, which is a rare connective tissue disorder similar to Ehlers-Danlos and Marfan Syndrome. I’m guessing it’s the source of pretty much all of my health issues. My other official diagnosis is POTS. I have a ton of other symptoms, but ultimately chronic pain and fatigue are my biggest issues.

What are your comorbidities, and how related do you think they are to your ME/CFS, if at all?

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The original was posted on /r/cfs by /u/microwavedwood on 2025-01-19 20:46:11+00:00.

TLDR - Family member is convinced I'll get better after explaining countless times that it's extremely unlikely and I don't know what to do

I don't know what to tell them. I've already told them countless times that it's chronic and that I'm very unlikely to get better. I've explained that there is no official treatment and how 5% ot people get better. But they keep talking about me getting better.

I got sick in 2023. I'm not getting better. I know that. Maybe it's denial? I guess watching the kid you've watched grow up become so sick they spend the majority of time in bed by 16 is rough. But it's hard for me too.

I hate that I think like this but sometimes I don't always want to see them, because I know the conversation will always become about me becoming better. The conversations always upset me afterwards. It's not fun explaining over and over again that I won't get better and this is my life.

I don't know what to do. I've explained that I probably won't ever get better but they're so insistent that I will.

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The original was posted on /r/cfs by /u/the-sound-ofsilence on 2025-01-19 18:46:20+00:00.

I”m feeling very alone today wish there was someone to give a hug anyone else feeling the same?

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The original was posted on /r/cfs by /u/Safe-Trainer-441 on 2025-01-19 19:06:17+00:00.

Is it because you’re pacing/resting so doing less permanent damage?

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The original was posted on /r/cfs by /u/Cold_Confection_4154 on 2025-01-19 17:02:31+00:00.

I have empathy for really bad stuff happening to people, but not every day, trivial shit.

For example, my mom is one of those people who constantly craves attention (covert narcissist.) She's 73 years old and has loads of energy. I'm talking active social life, loves to shop just for fun, takes trips several times a year, etc. She messaged me a few hours ago complaining that her flight was delayed for an hour. I said that's not bad at all. She replied "to just sit there?" I said you don't have to sit, you could walk around if you want. Then she said she's hungry and light headed. I said so eat something (is it really that hard to figure out???) She said something about i was being short and I said what do you want me to say? She replied that I should say I love her and will miss her. I literally just yesterday asked why she has to be gone for two months (even though when shes here she does nothing for me except offer to take me out to eat.) But nothing I say is ever enough. Meanwhile, I'm expected to take the bare minimum, emotionally. She has very little empathy for me and has insinuated that I lack motivation, among other hurtful comments. Another irritating thing is that she claims that she reacts to gluten, yet she keeps on eating it off and on. What I wouldn't give for my symptoms to be resolved just by avoiding gluten! (It gives me headaches and rashes and I do avoid it religiously.) Does anyone deal with such a person in their life? It's clear she wants sympathy just because she's getting older, in spite of the fact that she has way more energy and functionality than I do. She's always telling me I should have more faith, too. She's never had to deal with a chronic illness, much less one this debilitating. I never even said that I don't believe in God anymore, I was just simply expressing my frustration, which anyone would. But negative emotions are not allowed (unless it's her throwing a tantrum about a minor inconvenience, of course.) If I cuss it's the end of the world--but she herself cusses on a regular basis. She likes to say "I'm tired too"- as if a normal person's "tiredness" in any way compares to ours. I've said over and over that it's like the flu and I guess she thinks I'm just exaggerating. It's getting really old and I know I just have to shut up about my illness because I'll never get the support I need from her. By the way, she's the only family I have. My dad passed away and I'm pretty sure she talked bad about me to all my relatives because they don't talk to me. Cutting her off is not an option because I'll be cut out of her will and I'm single and I don't know what's going to happen to me. When my kids are 18 ill have zero income unless I get better. I guess I just have to suck it up with her but it's just so irritating and hurtful.

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The original was posted on /r/cfs by /u/CriticalMouse4965 on 2025-01-19 15:41:00+00:00.

I went from being my healthiest ever 3 years ago to my absolute worst. 3 years ago I got pregnant with my second baby, and at 5 weeks I got what was probably COVID. It only lasted 4 days but it was pretty bad, I almost brought myself to the hospital but did a bunch of breathing exercises to clean out my lungs and I was alright in just a few days. However the tiredness that I attributed to the first trimester never went away. I've never been so tired. My life completely fell apart, because at the same time my husband's alcoholism basically consumed his life. My daughter just turned two and I am STILL struggling with fatigue. My mom suggested maybe it was long covid and it dawned on me she's probably right. It comes in waves, for example I somehow found the energy to plant my huge garden and fight weeds while working full time and caring for the kids, but then I got the flu or something in July and energy went straight back down to zero, taking months to recover, tho I still haven't. I got a bunch of supplements and I was like yay I guess it was just a nutritional deficiency but it's like progress is always temporary. I'll have spurts of energy and normalcy then revert back to wanting to sleep all day. Anyway that's my back story. I have shrugged it off as just being under a ton of stress, mood disorder, depression, postpartum depression and having two littles but the level of tiredness I feel is not normal and I have to figure this out.

What scares me is reading about fibromyalgia and CFS or seems like I'm getting really mild symptoms of these illnesses. Extreme exhaustion after doing something I felt I had the energy for. II will randomly have what could be described as fibromyalgia like pain but only occasionally and very localized. I have recently learned that I absolutely have myofascial pain syndrome in my neck and shoulders and that has been present since i was a teenager, not sure if that's relevant but it seems related to fibromyalgia.

Tldr: Did any of you develop symptoms gradually? Or was it just overnight? Reading this sub is absolutely terrifying the level of debilitation it causes. If I can catch this early I will do literally anything to not have it get any worse.

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The original was posted on /r/cfs by /u/Spottedfrog111 on 2025-01-19 09:25:58+00:00.

If I can't do my meter readings, have a sink full of mouldy dishes and survive on snacks and ready meals how the hell do they think I can exercise?

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The original was posted on /r/cfs by /u/Asrj02 on 2025-01-19 08:09:34+00:00.

My pem used to be delayed 2-3 days but now it’s happening immediately. Today I did some cleaning as I have been having more energy and immediately my muscles got sore and shaky. Does anyone else get this way? If not pem could it be something else?

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The original was posted on /r/cfs by /u/Traditional_Baby_374 on 2025-01-19 06:27:16+00:00.

This looks to be from the late 80s or early 90s. It's amazing how little has changed in the attitudes toward this illness. The town and doctors in the area wanted it to be suppressed as not to affect tourism. We have long haul covid now that is a political hot potato and no one wants to talk about it. It's a great watch because it validates the experience of every person with this illness and the situation of the illness.

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The original was posted on /r/cfs by /u/Diana_Tramaine_420 on 2025-01-19 07:01:20+00:00.

I have had cfs/me 28 years now 😬. I’ve been very severe then moderate for many years. Had a few bad years recently with Covid effecting my mental health.

But I saw a new specialist in nov 2024, started new medications (3 new ones). And I decided to try nicotine patches.

So I’ve been feeling pretty good, definitely moving into the mild range.

How do I know? Normally I don’t have much cognitive range so I watch the same thing on my iPad (on repeat) and I look at the same stuff online. Since Christmas, I have watched 11 new movies and 2 new tv series, listened to audio books which I’ve never done in my life and put the radio on 😳😳. My cognition and able to think beyond basic self care is extend. Oh and I’ve been showering standing up 😌.

But how do you not over do things??

I’m trying to keep a strict routine. I get up same time. Work from home or do hobby stuff. 12 until 2.30 I sleep. Then I do home stuff until bed.

With my energy increasing I’m so tempted to do more.

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The original was posted on /r/cfs by /u/m_seitz on 2025-01-19 01:35:20+00:00.

First things first: FUCK!

Also: This is probably not going anywhere, but it did anger me a lot.

Our "worker's" party (Arbeiderpartiet) is very keen on getting people to work, whether they can or not. Who could have thought that a former Left-wing party would embrace Right-wing populism in the age of Trump? Today, our public media company, NRK, published an article about a Long-Covid patient who was healed miraculously within a week. A new company, SafeChoice (1984 Newspeak anyone?!), found "The Cure™" (sorry, more sarcasm) and is now trying to get funded by our unemployment office NAV.

Here is the "cure":

• Corrections, challenges and someone to talk to.
• When could you push herself a little harder?
• When did you need to rest?
• What was dangerous for you?
• What can help?

Here is the Google translated article, which starts with an AI summary (click "Got it" when Google annoys you with an error message after clicking on "Show more"):

Of course, this 5-day treatment is supported by a Psychologist who invented a 4-day treatment against OCD (currently under review). Idk, I'd like to joke that they probably have a 6-day treatment against autism or LGBTQ+ somewhere too. But we live in a time where reality has outrun sarcasm. And conversion therapy was legal in Norway just a year ago!

I am not worried about myself, as I see this new miracle treatment as just another scam. But I fear that some people will experience some very difficult months of finding out that they weren't healed after all, and that newly diagnosed might have yet another hoop to hop through to get disability support.

Edit: My rant about Arbeiderpartiet, which is ruling currently, was added due to the article pointing at the government's efforts to reduce unemployment. I found it important to point out that a former worker's party can look like our (Enlightened) Centrists (SP), the Right (Høyre), or far-Right (FRP) in important aspects of life. These are the people who decide whether the likes of SafeChoice will be funded or not.

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The original was posted on /r/cfs by /u/Flashy_Shake_29 on 2025-01-18 17:40:45+00:00.

After a year, I think I finally reached my breaking point and my mental health is tanking. I’m ready to talk to my doctor about a SSRI. Are there any that are known to be more or less helpful for MECFS symptom management as well? My biggest pain point is cognitive PEM and not being able to talk to my family. I could continue being bedridden if I could just regain my communication.

I’m already taking LDN Valtrex, Celebrex, Zyrtec, and oxaloacetate. Currently trailing LDA. Even with all these meds, I’m close to being very severe

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The original was posted on /r/cfs by /u/Dumb_Goldie on 2025-01-18 17:39:18+00:00.

So one of my roommates wants help organizing one of the rooms in the apartment. It is her extra room that is for making online content. It’s mostly sitting and moving stuff like her makeup around and figuring out where to put it.

I’ve told her that I don’t mind helping and that I will help, but most times I end up feeling unwell when it is time to do it. I hate that I feel this way but I can’t help it.

Yesterday she told me that I always let her down and I’m never there when she needs me. She also said that I dip whenever there is work to do and basically made me feel like I use my condition as an excuse not to do chores when I’ve been working really hard to help keep the house clean and nice after she and my other roommates have told me they need me to do more.

I’m really hurt because I have been working really hard for the house, even as my condition gets worse. I go to school Monday to Friday and when I get home I try to put any clean dishes away if there are any. Once a week I either have to clean the bathroom or vacuum the carpet, and I have been doing them interchangeably throughout the weeks in a month. I’ve been sweeping the whole house other than bedrooms. I’ve helped feed all the cats (there are 6) and I have even given the diabetic cat his insulin shot quite a few times.

I just don’t know what to do. I’ve been working SO hard despite everything. I have been making myself worse and still been positive despite it all. And then to have her just say I’m a let down and I never help… I’ve felt so horrible that at one point I had to take one of my clonazepam to calm down enough to sleep last night because I was crying and feeling so much emotionally that it was making the pain worse.

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The original was posted on /r/cfs by /u/CornelliSausage on 2025-01-18 13:37:22+00:00.

Did anyone else attend the Remission Biome Update webinar yesterday? I was only able to stay for about an hour before starting to feel a bit spacey so I left to prevent overdoing it, but thought I’d share some of what they mentioned.

These are super preliminary findings and not published, but they are interesting nonetheless. If you’re not familiar with the project, Remission Biome was founded by two people who both experienced temporary remission events (TREs) from MECFS while taking antibiotics, and subsequent improved baselines. (Bedbound to years of mild.) They are trying to recreate TREs on a larger scale and learn about why they happen. They have developed a protocol which not only involves taking antibiotics but preparing your system for them by stabilising people as much as possible before they start.

• Their new protocol is going to be released at one of their meetings next month. A lot of people in the project have been able to increase their baselines just by following the protocol without antibiotics so it will be interesting to see what is in it.
• Infections, hormones, and mechanical issues (like CCI) affect the effectiveness of the protocol.
• In one subject there was a clear reduction in REM sleep during their TRE and for a period thereafter.
• In other subject (or maybe the same one - they didn’t specify), the lactobacillus population in their gut biome exploded into dominance right before their TRE.
• So far 60% of those who did the full protocol have had a TRE. Some people had a baseline increase even without experiencing a TRE. Not everyone who had a TRE had a baseline increase.
• Some genetic alterations have been found which are more common in the study population than the general population, including genes that affect glycogen storage, carnitine transport, and glutamate receptors. These differences not only may increase susceptibility to the disease, but may account for the huge differences we see in how MECFS patients respond to various drugs and supplements.
• These genetic alterations appear at a higher rate in those who have been very severe for a very long time.

I’m sure there was more but I had to stop there!