I can't speak to whether it will help me persistently but I bared my teeth and followed this advice after being couch bound for two days (triggered from taking a 30 minute casual walk).

I started out in a super hot bath, then drained the water and initially matched the temp for about 3 minutes, then slowly adjusted it colder and colder so I'd adjust. Sustainable, I know, but after getting out I couldn't believe it—I felt completely reset.

I could barely get in the bath and when I was in I thought I was going to be stuck there for awhile. But felt completely different after the cold.

I made sure to get my head cold specifically because I had in mind trying to trigger the mammalian dive reflex. A neurological mechanism that's activated when we submerge our heads under cold water for several seconds. This helps bring people out of emotional crisis and anxiety and I sort of wondered that since CFS/ME is neuroimmune maybe it'd have some effect.

Seemed to work in my case but I can't speak to a general pattern of effectiveness as I've only done it once. I might find out differently in 12-48 hours. But I'm curious as to if other people have tried this.

Sleeping only 4 to 5 hours with minimal deep or rem phases. I'm feeling like an undead.

But I can't get no sleep (reference to a great song...).

The days have also been overcrowded with external stressors that I couldn't influence. I'm really starting to lose it, it's really intense.

Sorry for the whining, but I can't go crying to my wife every day ;)

Is anyone else's brain fog so bad that you can't like process your symptoms, or even remember them?

Long covid sufferer here, my doctor has said I fulfill ME/CFS diagnostic criteria although I don’t have that diagnosis on paper.

A week ago I had a colonoscopy so a really big activity outside my baseline (i am housebound and spend most of my time laying down). The day before was already strenuous fasting and preparing for the procedure. I was expecting a huge crash afterwards but my experience has been really weird.

Tuesday-Wednesday I was feeling completely fine and normal. On thursday I had some slight headache during the day but that’s it. On Friday morning I had an osteopathy session (at home) - this usually makes me feel better and relaxed, she’s an ME/CFS specialist.

Saturday and Sunday I was definitely feeling worse: noise and light sensitivity, headache, sore eyes, simultaneously feeling restless and tired. Now I am really confused - is this still pem caused by my doctor’s appointment almost a week ago? Can the onset be more than 72h?

Another weird thing is that my nightly Garmin data has been stable. Usually in a crash my HRV drops significantly, but now it’s been normal. So confused by this disease.

Hi, all.

From what I understand, the main way to win your LTD case -- whether upon initial application/request or on appeal -- is to have strong documentation from your physician that you indeed have CFS.

It seems some on here recommend either of the tilt-table test, CPET, or both in order to have an "ironclad" diagnosis. May I ask if anyone can relate to this? Perhaps you had a case initially denied but won on appeal after you agreed to one of these tests...or a different one? Or you know from experience that the claims examiners had weighted a certain test very highly?

Thank you.

How do I know if I have ME?

I have had almost EVERY test on the list in the “please read” intro page. The only ones that I haven’t had are the pulmonary function ones. I’ve had brain MRIs, in-hospital sleep studies, 72 hour cardiac monitoring, every blood test out there.

I have an autoimmune disease and I take Plaquenil for it. But I absolutely crashed in the year after I first had COVID. I’ve been unable to work more than a few hours a week and I can no longer sustain physical activities. I have seen a psychiatrist, a cardiologist, a gastroenterologist, a neurologist, and I have an annual visit with my rheumatologist. I see a naturopath too.

I can’t beat the overwhelming fatigue. My short term memory is a mess. My concentration is shot. My muscles fatigue and hurt after ordinary things and I can’t even manage to make food or bathe or walk up stairs for days afterwards (I tried planting a few flowers one day when I felt well, I tried painting a room one weekend).

My iron, Bs, D, thyroid, etc. have all been tested. All are actually good. My IgGs are usually high because of my autoimmune, but even those have gone up. My IgA were high this year. My CRPs are normal.

My doctors have put me on antidepressants and anti-anxiety meds. But the fatigue and memory and weakness is still the issue.

This has been 18 months of testing. My doctor has said “I don’t know what else we can do for you”. They seem to think its a mental health issue. But the only thing that’s giving me mental health issues is the fatigue and brain/memory issues.

I’m in Canada, getting a different doctor isn’t an option in any way, based on the shortage of doctors and the way our system is funded.

I don’t even know what to do next. I’m not crazy. I’m not attention seeking. I’ve never been a sick person. But I have to go to work and raise my kids and look after my house and live a life. I’m divorced and can’t depend on anyone else. My body and brain won’t cooperate.

How do I even know if this is ME? I’m running out of possible answers for why I feel like this. What experience do others have to share?

for a while now i’ve been wanting to go to college and get a PhD in biomedical sciences, but i’m pretty limited in doing so because of this illness. is it feasible to get a high level of education with how rigorous it is with an illness as debilitating as this? i usually moderate range of ME/CFS, but can oscillate between that and mild on the rare occasions this illness lets me live a little lol, and even then it’s not much.

Had it over 10 years saw many doctors so obviously there's no treatment for CFS..and I can barely walk, debilitating brain fog 24/7, unable to even concentrate, struggle to shower etc so the last time I went to my primary care doc was 4 years ago she did diagnose me so did others before her but she was the last I saw.

I then had to quit my job because I wasn't able to work anymore. I got a jury summons maybe 6 years ago was new to it didn't know what to do ended up having to go to jury selection day which destroyed me I had to sit up hours couldn't keep my eyes open so I had to drink caffeine which I never touch caffeine with cfs and that didn't even work I just felt severe heart palpitations and I was blacking out a lot. Showed them paperwork for my illness but was told it was too late so had to endure the selection process thankfully wasn't picked

Now I got a summons again and I am no longer able to walk or leave my home. I dont know if one day ill be able to again I hope so but currently not now which is miserable. What do I do? Do I call an office for it and tell them I'm unable to go? I don't have any paperwork for the last 4 years because no doctors can cure me so what do I do?

I'm in the US

Thanks in advance

This is stupid but I’m really really upset. My sister was hosting a party for her husband yesterday and I originally didn’t know if I would go b/c of my cfs but I pushed through and went. I had been trying to take it easy all week to ensure I could at LEAST try and make an appearance. I have a bedroom at my sister’s house and will often just go there to sleep if I get overwhelmed - like I literally live here for half the week because my work is 5 minutes away. Anyway, at the party, my BILs friend, who I told them last time I didn’t like because he wouldnt fucking leave me alone the whole night, kept coming over to find me and join every group I was talking to and kept trying to subtly touch me. (Weeks earlier I told my sister this guy bothered me bc he was too pushy and she agreed) I went to the party around 8 and went to my room around 10 b/c I was tired and wanted to get away from that guy because he wouldn’t leave me alone. I thought removing myself from the situation would help :( I called my mom and vented to her and she said she’d come get me (I’m 24 lol) but I said I’ll just leave early in the morning to avoid everything. I took my sleep medicine and went to bed but at 2 am my sister came into my room and said I need to leave my bed so someone else could sleep there b/c they were staying over. I was like “wtf?? I’m already sleeping in my bed! I took my meds and I need to sleep dude” And she just said “yeah I know it sucks but you’ll be fine”. I felt really dejected and slept in her bed with her that night and then I left at 7 am. I found out my BIL was insistent his friend(not the scary one) get my bed even though this friend always stays over in the family room pullout couch. I would’ve had less of an issue if they didn’t wake me up out of a dead sleep and make me immediately pack up and move. I felt like I was removed from my safe space and it really upset me :( my sister apologized for putting someone else first and not listening and I appreciate that but I guess it bothers me that she KNOWS how important my sleep schedule is and she KNEW I found that guy scary. I had to leave my previous job due to harassment. All she said about the guy was “his gf just broke up with him, he’s probably just awkward” :/ I’m very sensitive to this shit. I didn’t feel safe / respected in a house I’ve lived in forever and it’s just upsetting. Sorry for the rant.

Also some people need more or less dosage than others depending on a lot of factors such as weight, health factors, skin colour, exposure to sunlight and others. I am not particularly large and so my doctor has recommend 3,000 IU per day to reach my goal of 100 nmol/L blood levels. Vitamin D poisoning is real so you cannot mega dose this vitamin either. once you get the right levels I guarantee you feel at least slightly better. It has helped with reducing my PEM severity, allergies and hormonal imbalances.

I'm 95% sure i have ME, a lot of my symptoms match up. (Tested for diabetes, sugar levels were normal)

-PEM (recently all it took was a shower and a trip to walmart to have me feeling real fucked up for the day, when I had to stop working it took me weeks to recover)
-Muscle soreness
-Refined carbs are very bad for symptoms
-Worsening over the past 3 years, can't go out of the house much at all anymore and rarely talk to friends
-Crazy brain fog
-Dizziness
-Trouble sleeping
-Weakness

But I don't have excessive tiredness, a trait that seems to be shared universally among all ME/CFS patients as far as I can tell. I know this might sound like a stupid question to ask but I'm just trying to find answers and possibly get back to my life.

Update: crashed 45 minutes after posting while reading responses and doing some research from thinking too hard. this is fucked

I’ve had long covid /ME for 3.5 years now.

Covid 2020 November 2021- was ROUGH I worked my way up to being stable all of 2022 I avoided crashes I was so careful in how much exertion I was doing, no gym or anything like that. Just going from A to B day to day like to the shops, cooking dinner, going on holidays was all ok for me, I was doing 5k steps a day and sometimes even 7k -9k steps . A lot of rest in between and this was working for me Then jan 2023 started getting shortness of breath ( lc symptom I think) didn’t connect it to anything as it wasn’t one of my common symptoms I had all my lungs and heart checked was all fine then as the months went on I started getting insomnia and crashes from minimal exertion. Then Re infected covid in November 2023. Don’t think it even really affected my baseline as I was in a pretty bad way before the infection, I’m housebound mainly bedbound to be honest, it’s been months I’m doing all of the resting that I done in 2021 , nothing is letting up. I feel absolutely terrified if I’m being honest, I feel like I’m slowly getting worst and I have no idea why?

Has anyone had this happen to them? I feel like I’ve completely screwed myself up and when the shortness of breath started happening in January 2023 I should of stayed at home and completely rested but I didn’t know :( as the months went on and I kept trying to go out and do little things I started crashing, I did reign it in after I started crashing again but then I still had crashes every 2/3 months cause I didn’t no what I could or couldn’t do. Sigh I feel to blame :(

Ive been housebound from October 2023 but now I feel like I’m more bedbound, I’ve started getting headaches and sinus pressure which I dunno if it’s because of the reinfection or what. I’m not sleeping I keep waking up with my heart racing, still have shortness of breath, I really don’t know what to do here .

I guess if anyone could let me know if anyone has got severe like this for a long time and been able to get back to a functional baseline again I need hope at this point .

Anyone know of historical (1800's or earlier) writings, artifacts, or records that point to CFS-like illness during those times? I would think it could potentially be more prevelant in the past because of a lack of modern medicine and vaccines?

Also physical activity and heavy labor seem to be more common in the past so it would seem like if it was a thing, CFS would be very disruptive and more visible?

What is your weight after developing severe/very severe ME/CFS?

View Poll

i'm in the process of getting my diagnosis but I think it's likely cfs. I get PEM multiple times a month when I overdo it on exposure to lights and sounds. right now i'm taking one college course online and i only work on it while i have the energy. with all the posts around here saying you want to only do 50% of what you think you can do, i'm getting nervous. i'm definitely not pushing myself when i'm fatigued but i am using all of the energy I have on either school, chores or socializing. the class that i'm signing up for for summer is 5 hours of week. does anyone here have experience with taking part time online school with this condition?

My legs, from the muscles in my butt down to my calves, hurt. Every single day. Glutes, hamstrings, abductors, gastrocnemius, and anterior tibialis (symmetrical) have constant cramps/knots. No amount of stretching, massage, PT, rest, walking, magnesium, meditation, etc. changes anything. It is only getting worse the further and further I get in this disease process. It's been 13 years now. If you have constant pain, what do you do and have you been able to reverse constant muscle knots?

I have ovarian cyst which are causing urine retention (letting out little bits of pee at a time, not being able to fully empty bladder, having to pee every 15 minutes, literally living hell) I go to bed with a full bladder and have to drag myself out of bed in the morning to pee. I am not peeing in the middle of the night. I am incredibly exhausted and haven’t had real sleep in a year. Could this be the cause of my CF? People wake up to alarm clocks so I am starting to second guess and worry it could be something else.

Been considering suicide lately over some shit I legally can't talk about.

A little birdie told me a secret about my mom. Saying she plans to get rid of my rabbit, my only reason to live. Apparently I cause such a problem and embarrassment about being unable to clean my room, myself, work, do chores, drive, walk, and everything that it'd be better off if I were dead.

I've spent years endlessly fighting for someone to believe me and to get me help, to no avail. I graduate in 2 weeks and there's so many things I'm supposed to be doing, but I can't because of my illness. And no one believes me. No one ever has. No one will help me or believe me.

I have some affairs to get in order first, but I think my time is just about up.

If you managed to get help with cleaning and other things, how did you do it? My loved ones don't believe me so I don't have any help. I haven't received a diagnosis from a doctor. Everyone else blames mental illness and tells me I have to get over it. If there's no reasonable timeframe to expect help or anyone to start the process, I'm killing myself. Hate to make it sound so blunt but it purely is hopeless. I can't continue with people treating me like I want to live this way. This is no way for anyone to live. I won't continue on like this anymore. I can't.

I have moderate CFS with episodes of being severe. On days I have moderate CFS symptoms, I have very bad stomach issues, light and noise sensitivity, cough, sore throat, shortness of breath, POTS flare ups, chronic pain etc. My resting HR during these times is usually about 85-90.

However, when I dip into severe CFS, which I consider to be when fatigue is the most predominant and overwhelming symptom, making me mostly bedridden, my other symptoms usually reduce and my HR dips to about 70bpm. It's not unusual for me to sleep for more than 20 hours a day during these times, which can last up to 4 days.

Does anyone else have similar experiences to this? Everything I read is that people get higher HR during crashes. Mine only gets higher when I am fighting an infection or virus (which unfortunately is very often).

Does anyone know how adhd meds such as adderal or vyvanse affect cfs? As someone with adhd, I sometimes can't tell if the fatigue is executive dysfunction, or both?

I've been recommended meds (for adhd) and am curious to know if they would also affect cfs, like fatigue, heart rate, temperature/exercise intolerance, etc. Thank you!

I’ve been sick for about seven years now. Housebound except I get to leave the house a couple of times a month for very short period. That’s a good month though. Mostly I am housebound and bedbound and always have pain. For the most part I’m very upbeat for my family, I try to always look on the bright side and appreciate what I have. But now and again I get really really depressed.

Just like the rest of you guys, I lost almost everything that made me ME with this illness. I used to be a hairdresser, volunteer in my children’s school and at the local dog shelter and I was an avid fitness enthusiast. Now I spend weeks and months in bed while I watch life go on around me.

I have been really fighting depression this last week, but I have two daughters and they both rely on me exclusively for their emotional and mental health. They love their father and he is wonderful and goes above and beyond helping me and supporting me in the sickness. But my girls come to me for support. They have both been fighting depression on and off for the last couple of years and I have taken them to Therapist and listen to them for hours while they vent. And honest God, 80% of the time I am happy to do it. Because literally it is the only thing I can do for my kids. So I never, say no or I am emotionally and capable when they tell me they need me. but I’m having such a hard time this week

I’m just exhausted. I just don’t want to talk to anybody or see anybody. I just wanna curl up in a ball and grieve and not have to pretend like I’m not furious and deeply depressed.

I love my family more than anything and I’m so grateful for them, especially since I know some of you have no support whatsoever.

But sometimes I just want to scream please leave me alone! Can’t you see I wish I was dead?

Thanks for letting me vent guys. I hope I didn’t upset anyone. And I hope you’re all doing as well as possible today.

It's driving me crazy, usually once a day, mostly in the evenings/ at night I get goosebumps on my entire body and a widespread stinging sensation on my body. On some spots the stinging goes away and then comes right back or stays the same for a couple minutes. Does anyone else experience this? Could this be hypersensitivity to the clothes I'm wearing?

I am severely sick with ME and I had a completely rotten wisdom tooth in my jaw that started to hurt really badly. It had to be taken out already weeks ago. But I had to reschedule it atleast twice due to my severe symptoms and extremely low baseline

Now I finally made it. 2 days ago it’s finally out. I was so full of adrenaline that I could even sit on a bank outside the dentist office for a while, what I normally can’t. I normally can’t leave the house as I am to sick for car rides and sitting/ standing.

I was just so relived that I survived everything. It was honestly really traumatizing and during the procedure I thought that my body couldn’t endure this as it was extremely stressful for my body.

Anyways…the days after I‘m trying to recover again and the first night after was really bad, high heart rate etc so I really haven’t slept well. I try to get in recovery and rest mode.

What does my mom do? It’s my brothers birthday today and she told my brother that I‘m gonna go and get ice cream in the town with them as I could leave the house now. She thought because I managed the dentist appointment and sat on the bank for a few minutes that I‘m now able to join them??? She said :" See it’s doable. You can get in the car and leave the house just like you did on friday"!

I was at loss for words. After all those years she still treats it like a mental condition or like a anxiety disorder is the reason I can’t leave the house and socialize. Oh man, just really don’t know what to think or say anymore

Hi, I suspect I have SIFO or an overgrowth of fungus in small intestine. I also suspect heavy metal toxicity. Which would be better to treat first? Thank you.

I don’t know for certain if I have CFS, but I’ve been dealing with severe exhaustion,fatigue, brain fog for 3 years now since the COVID vaccine. Tons of tests, nothing has come of it. I’m lost on what to do. What pisses me off is the doctor I’ve been seeking help with for 3 years asks if I’ve taken a vacation recently because maybe that’s what’s causing this. I haven’t had a vacation recently. Doesn’t matter how much I tell family I’m suffering. Must be depression and therapy would be the fix. Debilitating fatigue that makes it so I can’t stand? Must be because I haven’t seen a therapist or taken vacation in a year. It’s been years and still the same shit.

Time for aggressive rest. Who else is aggressively resting on a beautiful day in your area? Let's cheer each other on!

My goal is three hours, no screens, eyes closed either resting, napping or at most listening to a podcast.

We can do it. We need to do it. Let's do it!

So, a little bit of background to start: I got covid in early 2020 and from that developed ME/CFS, with all the usual symptoms (fatigue, migrating muscle/joint pain, brain fog, PEM, insomnia, depression, etc) although I was comparatively mild to what I am now. I was reinfected with covid in December 2022 and was able to get Paxlovid, and after I got over the acute covid symptoms, I feel like my long covid symptoms lifted a little and my baseline improved for maybe two months, but then started going back downhill, and every time I got sick with a (non covid) virus my baseline got even worse. I'm currently housebound and spending about 14-16 hours a day in bed.

Immediately after my covid reinfection, my period become irregular, which was not too surprising because covid is known to mess with people's hormones, and also I have previously had short cycles after stress, and getting covid again was definitely physically and emotionally stressful. So I had short cycles for about three months, and then it was back to normal, and whenever I caught some other virus I'd have another short cycle and then back to normal, and so I was assuming for the better part of a year that it was just some post viral hormone weirdness. But then more recently I've had both longer than average and shorter than average cycles with no known viral precedent, and now I'm wondering if I'm in perimenopause. (I am 44, btw.)

But the thing is, I'm not really having any other "classic" perimenopause symptoms (like hot flashes, night sweats, vaginal dryness, loss of libido, etc). And the specific symptoms that have been getting worse the past year (insomnia, fatigue, depression, PEM) are all super super common for long covid. I mean, hell, even changes to your menstrual cycle are common post covid. I also haven't noticed any obvious or consistent connection between my symptoms and whatever my period is doing.

Obviously it's possible to have both long covid/CFS and to be going through perimenopause, and maybe my covid reinfection triggered the start of peri for me. I guess I'm just at a loss as to what to do about it. Would it be worth it to try HRT--would that even help things like insomnia and fatigue? I'm honestly hesitant to try because I've always been sensitive to medications and that's only gotten worse after getting sick.

My mom and one aunt had a really rough time with menopause, but my grandma and another aunt had almost no menopause symptoms at all, so, uh, my family history is a pretty broad spectrum. Maybe I'm having (comparatively) mild perimenopause and a coincidental worsening of ME/CFS?

I'm overdue for my yearly physical, and whenever I can manage to drag my butt into the doctor's office, I'll ask them about this. But I'm hesitant to do that, too, because I've yet to find a PCP who knows anything about chronic illness, and I'm afraid that if I bring this up that they are going to try to blame all my symptoms of the past four years on perimenopause despite there obviously being some post viral/immune system crap going on here.

I guess I'd just like to hear about other people's experiences and if HRT helped your ME/CFS symptoms at all. I've been lurking in the menopause subreddit for a while, too, but they are so rabidly pro-HRT that I'm afraid to ask my questions over there.

Hi, so I joined this sub because my GP (I live in the UK) said that she would refer me to a CFS help group after having bloods done, an EKG, therapy, three antidepressants. Nothing helped or revealed any cause for my exhaustion and lack of functioning and I'm at a loss and terrified that this is all there is and I just have to deal with it.

I've had pretty awful mental health and am frankly extremely traumatised for a bunch of reasons and I've heard many times that can lead to chronic fatigue-like symptoms that aren't exactly the same as actual CFS/ME but I don't know how I'd know? What if it's both? I got mine really bad after I got sick a bunch at the start of COVID so it feels like it might be that???

Anyways, I'm really scared I'm going to be missing out on something but she seemed to think that there's nothing else I can test for and I'm just gonna have to learn to cope which is so depressing. I don't know if anyone else is in the UK and can help me out :(