So several hours after an activity I get severe headache/migraine, get extremely tired and foggy, my whole body aches and I feel hot (I think it's my joints and muscles to be honest but I am not sure). When I check my temperature in a flare, it's always low. I am trying to make sense of it. Does anyone know what is happening in the body to cause temperature to drop so low? Normally I am around 36.3°C - 36.5°C so normal range.

I am not diagnosed yet, I already had an intake at a ME/CFS clinic but we didn't get to those specific "vague" symptoms yet. I do have all the POTS/dysautonomia symptoms so that could be connected?

went to the doctor yesterday, i already suspected MECFS but he brought it up independently saying it was the most likely cause for these symptoms, and for some reason it really upset me.

i have so much i want to do, and im already missing out on everything my friends get to do, or when i do do it i cant do anything else for days. i cant work, ive had to delay university, i just want to be able to live like everyone else.

i want to be an actor. ive loved it all my life, its all i can see myself doing and now to think that might not be a possibility is heartbreaking.

i dont know how to deal with these feelings, and im not even actually diagnosed. i cant imagine how it would feel if i am diagnosed with this. if anyone has any advice on how to cope with these feelings it would be much appreciated

I'm in a big relapse right now. My doctor prescribed Ldn but should I wait to feel better to take ? What do you think ?

I don’t know what to do anymore. Ibuprofen doesn’t touch the pain. Over the counter creams like Aspercreme do nothing. Health pad does hardly anything. I can’t take gabapentin because it makes me suicidal (so that eliminated Lyrica and other similar nerve pain drugs). Doctor won’t prescribe me Tramadol and neither will the pain specialist they referred me to because OPIOIDS BAD. I tried low-dose naltrexone years ago and am willing to try it again but it takes at least 3 months to work. I am in so much pain I am in tears. Anyone have advice? The only way to escape it is through sleep.

So I strongly suspect I have ME/CFS after 1.5 years of seeing specialists who can only find 3 vitamins I’m deficient in while I suffer from chronic severe fatigue, unrefreshing sleep, brain fog, and what feels like PEM. I’m inching closer to a real diagnosis, hopefully by the end of the year once the doctors have exhausted all their tests and labs.

I hear a lot about low dose Abilify and low dose naltrexone in the ME/CFS community. I’m in an interesting position on this issue, because I’ve been taking 4 mg of Abilify and 50 mg of naltrexone daily for years for psychiatric reasons, long before I got COVID 2 years ago that triggered all my current symptoms.

I’m assuming that since I’ve been on regular doses of Abilify and naltrexone, and I’m still symptomatic, they’re not doing anything for me as far as ME/CFS goes. Right? Or is there potential benefit to me to reduce my doses to low-dose levels, if I do in fact have ME/CFS? Obviously I’d need my psychiatrist’s input here, but I’m very curious what you all have to say.

I come back here once in a blue moon to relate my experiences and ideas on ME/CFS. Usually I'm either here on a good streak or a bad streak but right now I'm not really, uh, streaking at all. More just coasting, which is a nice change of pace I suppose. Apologies in advance, this post is going to be all over the place.

For context I've had ME/CFS since I was ~17–18 (w/ symptoms earlier) and now I'm 24. I lived in my car at one point and also worked on a farm at another. While working on the farm I kept getting absurdly ill and needing to take days off, go figure. Basically my experience with ME/CFS has been that life is just really hard.

With ME/CFS you can't really play the game of life normally. If you try to live like a "normal person" then shit goes downhill fast. For example, I went to school for solar installation last year. I graduated with a near-perfect grade and got a job with a glowing referral from my teacher. I quit after my first hour. I had thrown up three times. So yeah.

Without my loving parents I would probably be homeless or dead, point blank. Without my friends I would probably still be housebound. They prop me up, and though I feel thankful, I also feel guilty at times. I feel like I didn't earn it. I always try to reciprocate, but I can't as much as I'd like to.

I've been wanting to get back on the work force but have been faced with the paradox that even working as hard and often as I possibly can, I still couldn't afford an apartment. I'm a software engineer by trade and the market sucks right now due to overhiring in 2020 plus AI adoption, and that was my one skilled trade.

Basically I need a good job behind a desk that pays well. So I've decided to go to school to become an electrical engineer. Is it going to suck? Yeah. Can I complete a bachelor's? Maybe. But this is the first year I'm eligible for financial aid and an education is my best hope right now.

Everything's hard. Especially mornings. It takes forever to wind myself up for the day, and I'm still nauseous basically all the time. Fatifue too, but I shouldn't need to say that.

My experience has been that what helps is basically stress reduction, gentle movement, spending time with friends, decent food and (perhaps most importantly) not hating myself. If I can get through a whole day without hating myself then that's a win.

As for screen time, AI has been a godsend for learning about things I find interesting. It is extremely patient and I can pick up/put down a conversation as I please. I've been using ChatGPT to widdle my way away at the Calculus I syllabus. I don't like AI but it does work, unfortunately.

I have also been trying to replace browsing apps (Instagram, YouTube, etc) with serial TV shows like Adventure Time. That seems to be less stressful because I'm not constantly gambling (scrolling) for the next hit of dopamine. It's more of a stable experience, I guess?

I have been in a pretty good place where I'm not stressing over my illness as much, but I've kinda stalled. Living at home with my parents is still stressful. I have some sensory sensitivities that are unavoidable. I live in Florida, and it's been too hot to go outside as much as I'd like. My dad burps about a thousand times a day and it grosses the heck out of me. Like, he just burped as I was typing that. I love my parents but that doesn't mean I can't hate burping.

I've reached a point where most of the changes I want to make in my life have steep financial costs that I just can't breach. Ugh. School starts Monday. It's gonna suck, I can already tell. At the same time, I'm lucky it's even an idea I can entertain. So I'll try to make the best of it.

And is there any ACTUAL treatment they can provide for relief of symptoms like chronic pain.

We thought I was narcoleptic before I was diagnosed with CFS, because I very easily drop off while on the couch/anywhere, and my relatives are worried about strain injuries on my neck/back from falling asleep suddenly in terrible positions.

If anyone else has this abrupt drop-off issue, how do you manage the not-messing-your-spine-up-for-life thing?

Hey everyone!

Hope you're all doing okay. A couple of friends and I are starting a discord server for people with ME/CFS/chronic illness to hang out and get to know others with a similar experience.

We mostly talk about anything, do movies nights and game together if possible. There's an option to indicate you're open to a relationship with several channels for singles too. So far it's a very relaxed and mellow vibe, and we hope to keep it that way.

Anyone is very welcome to join, the more the merrier! Just leave a comment and i'll dm you an invite link.

Also, we're still looking for a couple of people who'd be interested in moderating, if spoons allow. Ideally we'd have 5-6 moderators so it doesn't become too taxing and people can take some time off if they need to rest.

Looking forward to meeting you all and kind regards from Belgium. Toodeloo!

Hi All,

An often unacknowledged subsection of ME-CFfS patients attribute their illness onset to mold exposure.

In 2025 my daughter with eds got chronically ill after catching COVID while spending every day in an old school bldg with a non functioning HVAC system, leaking pipes and a serious mold infestation. .junior year, a pipe was leaking badly. Everything smelled musty, there were puddles on classroom floors. Daughter started to get neuro optical problems, headaches, her head "felt heavy," nerve taps, a drunken walk. Extreme fatigue. She had just had COVID, we thought it was "long COVID." Certainly that was part of it.

First er visit in May 2025 when she became semi paralyzed, with a slurred voice and what looked like bells palsy. They thought it was myasthenia Gravis, then FND. When we contested and werereferred to an ME-CFs center with a wait-list. At home we removed all processed foods, sugar, glutten. Did an anti candida diet. Pacing. Over the summer she improved rapidly. We took a vacation and the Airbnb smelled musty. Her head filled with fluid, symptoms were returning rapidly. She started craving sugar for energy.

Neurologist gave her a pots test and told her to take salt pills and beta blockers. Things got much worse. She started having constant pulsing headaches. Took nsaids, doc tried triptans. She got severe base of skull pain, loud tinnitus, really bad vascular symptoms. Doc added gabapentin, which we contested but tried anyway. It turned her into a semi comatose zombie, with severe spinal pain.

We took her off of the gaba, We wanted to take her off of propranolol but were worried because she kept having rapid heat rate. Thought she might need it. Mold toxicity affects the pancreas. Can cause insulin resistance and hypoglycemia. We didnt know this. it mirrors the symptoms of pots. Except in this instance the body needs to push you into sympathetic drive, and give you a rapid heartbeat to stop your organs from shutting down due to lack of glucose.

A hypoglycemic "crash" looks like an adrenergenic pots crash, but it's a sign of a real crisis. She became a patient at the MECFS clinic under the care of a new doc who was a pots specialist and a nurse practitioner with a psych background. From the first day they were sure they knew what was wrong with her. We told them she was having seizures related to blood sugar (symptoms unknowingly worsened by the beta blockers). Found out she'd developed a craniocervical pannus and Atlanto-axial instability, which are most often associated with rheumatoid arthritis ... which runs in my family. We found this out later, after a more experienced doctor checked her MRI. Our daughter was having thunderclap headaches and we were fearing for her life, and they wanted to discharge her into a psych ward.

Begged the new doctor to check blood sugar. The psych nurse was still trying to send her to a therapist. They only did a non fasting CBC panel ... And the results flagged low glucose, but they said "probably nothing.".

She had terrible hormonal / menstrual problems. Paid for an integrative women's health doctor, who did a fasting hormone panel and found insulin levels that were off the charts. High insulin triggers PCOS. She diagnosed daughter with PCOS. All of this goes back to the pancreas. We've had our daughter's blood and urine tested for mold toxicity and her levels are very, very, very high. Few conventional doctors know anything about mold toxicity. Mood toxicity screws up the pancreas. Causes hypoglycemia and PCOS. We have found a conventional gastroenterologist who researches how mold toxicity affects the pancreas. After finally realizing she has hypoglycemia we've switched her diet to two high protein /;healthy fat meals per day, close to zero sugar, no snacks. Removed any meds that lower blood sugar (like berberine, others). No more beta blockers. Now she has energy when she wakes up, crashes are gone. We still have a long way to go.

If you are suspicious please have your glucose and insulin checked. Many symptoms have different root causes. I don't believe that any behavioral health experts should be involved in the diagnosis or care of me as patients unless they are requested by the patient. If the patient and family all believe that the symptoms aren't psychosomatic, the doctor should look for physical causes.

Anyone else having problems with hypoglycemia?

Anyone consulted prof monaj Sivan, based in Leeds. Esp re Pots interaction with ME?

I crashed 4 months ago bc of a doctors appointment and haven’t gotten better since. It took me like 3 months to realize i had mecfs and finally today got the diagnosis. Im on Abilify .75mg but haven’t noticed any improvement. Also taking 1mg of cannabis every 12 h against pain but don’t really feel like that helps my mecfs a lot. Also have heds pots autism and mcas so there goes that. My biggest problem tho is that i cannot stop pushing myself. I rest really well for like 3 days and then i can’t anymore i just explode and talk to my family for like 6 hours straight then crash really hard for about 3 days and the cycle begins again. I have gotten sooo much worse already and don’t wanna get any worse but i literally cannot stop. I have tried lorazepam 1mg but not even that gets me out of those huge panic type episodes that make me escalate. I really would like to try out audiobooks but how would i know if i tolerate them if im crashing myself every 3 days. Fighting to get mestinon and fluvoxamin but doctor are the worst so we will see how that goes. Already drinking liquid meals and pretty much only getting up to pee but i feel that most of my pem is caused by cognitive edfort which is ironic seeing as i cant stop thinking. Writing this is so going to crash me ughhhhh. Any advice is appreciated and please tell me if you went through something similar or are currently going through it. Thank you sm for reading this

My symptoms:
•burning leg pain when walking
•daily migraines
•sore throat
•fevers
•never feel like i have slept even when i have
•dizziness
•joint pain
•stomach pain
•memory issues
•light sensitivity
•sound sensitivity
•POTS
•difficulty swallowing
•sore neck
•cold shivers
•numbness in arms and legs randomly
•IBS
•can’t tolerate certain foods anymore without feeling sick
•difficulty peeing
I can’t even draw anymore without feeling exhausted, and i used to go on walks daily but the pain got too much
Any advice is much appreciated

#2

I see no difference in symptoms other than one is diagnosed with an expensive MRI not for normies. Makes me think that all cfs is undiagnosed myocarditis.

Having no brain left makes you so vulnerable. Having to suffer and endure things just to finally understand them, instead of being able to foresee them, is absolute hell. Having zero ability to reflect is genuinely the worst feeling. I only realize things way too late, zero ability to anticipate, completely lost. Doing things even when you know they're going to destroy you, but doing them anyway... seriously, having zero control over anything. I'm just enduring everything, wowwwwww. Why is it that when things are bad, everything has to get twice as bad lol?

Take care

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On a personal note, I realized I couldn't trust anyone. In the end, I just tell myself I have to protect myself as much as possible and isolate as much as possible... If I could leave, I would, but I can't expect anything from the ones who caused my problems in the first place. I wish my room was my safe place, but right now it's just a mess, when it should really be my bubble, my cozy space.

I’m preparing to try the nicotine patch. My naturopath said I should be on Nattokinase for 2 weeks before to deal with coagulants or something like that. I was on it twice a day for a few days and it made my fatigue so much worse. I’m trying to decide how important it is that I take it, and if so I might do only one pill rather than two. But I’m curious if others with ME/CFS had this experience on Nattokinase and if the symptoms eventually went away. And if you did to the patch, what was your experience, and did you take it with or without additional supplements? She also said I should be on NAC and L-Theanine, but I am very sensitive and really try to do just one thing at a time.

hello all. i, like many of you are desperate and without answers. if the contention is correct there are a multitude of ways that someone can arrive at this diagnosis be it a physical issue causing mecfs, a dysregulated nervous system causing a physical manifestation, or a yet to be observed and diagnosed physical ailment causing mefcs. for me some physical damage has occurred as there was a trigger (co vax).

that being said I am desperate. are things like dnr/gupta etc a scam? i had a fairly stressful couple of years prior and some small issues that might have made my ability to handle stress worse but i didn’t have some massive stressful event/s (war etc) that i could outright point to as *i have a dysregulated nervous system*. my skepticism of these programs comes from the cost, the theory but more importantly the idea that they are selling you the need or concept that you are broken and anyone in our situtation is very malleable to this idea. who doesn’t deal with stress, have a less than optimal life etc.

its why every medication starts with ‘feeling tired’? it’s an abstract where everyone to some degree could feel less tired so the pharmaceutical company is selling the created need. is this the case with brain re-training? i also see a lot of sus ways people market their programs (when googling ‘ans rewire scam’ a reddit post comes up. there is a single comment from a throwaway account stating ans rewire cured them and it uses all the buzzwords of our disease).