r/cfs

Basically i had my conclusion appointment at a specialized ME centre today and got told this. They diagnosed me with mitochondrial dysfunction and POTS. An internist diagnosed me with CFS at the beginning of this year, she just called it CFS not ME/CFS. But now this seems to override that? I’m just quite confused. The ME centre is a very reputable “they know what they’re talking about” kind of centre that has worked with and has studied ME/CFS for 30 years. Yet i’ve seen a lot of people online talking about having been diagnosed with ME without them having a viral onset. For me the onset was a year of extreme anxiety. I don’t know i’m just a bit confused and i don’t know how to feel about it yet. Basically i have CFS but they can’t call it that because mine is not viral? I think i’m a bit scared of not being taken seriously since mitochondrial disfunction sounds so vague.

As per the title, does anyone else experience this? I can suddenly be barely able to keep my eyes open and in the other direction, my energy levels can increase (although the change in this direction is always far less marked) and is only a small/medium improvement in energy. It's how quickly my energy levels change that I find bewildering. Anyone else?

ETA: It really feels like my body is possessed. I've experienced life without these symptoms so I know what something reasonably normal feels like, but this isn't it.

I have both ME/CFS and idiopathic hypersomnia, and I’m wondering how wakefulness medications or stimulants have affected other people’s physical symptoms.

I have constant flu-like malaise and a feverish feeling at baseline, along with bad neck pain/heavy head feeling, and these symptoms worsen during crashes. However, my daytime sleepiness is really bad and makes it difficult to stay awake at all and get anything done during the day, so I definitely could use some help with that. Because of this, I was first prescribed modafinil, I tried that a few times but sometimes it gave me a horrible headache, and the most recent time I took it I got SO sick like nauseous and dizzy and felt like I was dying and haven't taken it since then.

After getting a sleep study and new sleep medicine provider, I recently tried Sunosi at 37.5 mg on Thursday and Friday. Both days, I felt noticeably more sick and feverish than usual, and I still needed to nap for several hours.

I didn’t exert myself at all on either day I took it. However, I had school Monday through Wednesday, so this could also be delayed PEM. I can’t tell whether the medication contributed or the timing was a coincidence.

Has anyone experienced worsening flu-like malaise, feverish feelings, or neck pain from Sunosi, Wakix, modafinil, or other stimulants? Did it settle with time, persist, or vary depending on the medication? Did any medication help your sleepiness without worsening those symptoms?

I’m contacting my prescriber for guidance, but I’d appreciate hearing people’s experiences. I could REALLY use something that helps the sleepiness but does not trigger the feverish feeling. I know that stimulants do often trigger PEM because they cause people to overexert, but are there any that don't trigger it, as long as you don't overexert?

Thank you

I’ve been using a manual toothbrush because I never liked electric toothbrushes due to sensory issues, both the noise and the vibration in my mouth. However, I’m wondering if it’s time now. Dentists recommend them anyways, and it’s less hand movement involved which is more exertion, but I’m wondering if the exertion of being overstimulated for 2 minutes is a worthwhile tradeoff for the exertion of manually brushing my teeth. Or if there is an electric toothbrush that doesn’t make too much noise?

I’m moderate/severe btw, but to play it safe I just consider myself severe.

Today I saw a neurologist who presented himself as an expert in complex conditions and had written about PEM.

After I mentioned my diagnoses of ADHD and depression, he described my problem as mainly psychiatric and social.

I wanted to understand my symptoms, but once again, I felt I had to defend myself.

Some experts seem to feel threatened by patients who know their symptoms and ask questions.

This has happened to me before, but this time, the difference between what he advertised and how he treated me was hard to miss.

Thanks to this subreddit, I know I’m not alone in being treated this way. Without that support, it would be much harder to cope with this medical gaslighting.

I’m severe and bedbound with ME/CFS, and one of my biggest problems is what I call wired PEM.
Unlike the more typical descriptions of crashes, my PEM often starts with only minor symptom exacerbation. I often actually feel better initially, even though I’m accumulating exertion beyond my limits. I might feel slightly more alert, energetic, motivated and mentally engaged.

I become almost compulsively drawn to stimulation, especially using my phone, researching things and engaging in conversations. I know intellectually that I need to rest, but actually disengaging feels incredibly difficult. It’s almost like my brain refuses to let me rest even though my body desperately needs it.

The particularly frustrating part is that I often don’t fully recognise the wired state while I’m in it. I might suspect it, but I find ways to explain away the warning signs because I genuinely feel capable of continuing.
Eventually, after weeks or months, my worsened neurological symptoms become more obvious, but by then I’ve already overexerted myself and headed for a crash (which will always lower my baseline).

My deterioration has been largely cumulative rather than caused by individual major crashes. I can exceed my energy envelope a little every day without realising the consequences until it’s too late. Over time, this has repeatedly lowered my baseline.

I’ve tried strict screen-time schedules, which can help when I’m stable, but become much harder to follow once I’m wired (when I both feel fake better and also my impulse control is lower)

I’m curious:

Does anyone else experience PEM as a state of increased drive and stimulation-seeking, rather than immediate exhaustion?

Do you find that your ability to recognise overexertion or control your behaviour changes during these episodes?

Has anyone found anything that actually reduces the wired state itself, whether medication or something else, rather than just relying on willpower to rest?

I’m especially interested in the possible neurological mechanisms behind this and experiences from others with severe ME.

I'm currently messing about with my smartwatch, with a view to getting it to provide the sort of alerts and insights that I might get from the visible armband if it was available in my country (Australia).

I'm curious about the technology visible uses. Is it based on an optical sensor like many smart watches have, which you'd see as a flashing light on the inside of the armband (photoplesythmography)? Alternatively, I gather it's made by Polar, which makes me wonder if they're reading electrical nerve signals? That would presumably show up as electrical contact areas on the inside of the armband, which probably just look like rubbery areas on either side of the measuring device?

If anyone is interested, I'm working on a Pebble Time 2, which is an open source smart watch with a battery life measured in weeks (depending what you get it to do that might tax the battery). Once I've made a bit more progress, I'm likely to be back with more questions about what people find useful or would find useful in an app for ME/CFS, POTS and related conditions.

I also have a Polar H10, and may make use of this also, or instead, though it's non-rechargeable batteries make it somewhat less appealing for long term use.

Less obvious things I'm interested in doing with this include making use of the roughly 0.1 Hz swings in heart rate with POTS, and investigating possible hardening of arteries over time with long term high salt diets.

tw si mention spoilered

my parents are helping me survive rn by bringing me food and water and meds. but they won’t help me take care of my hygiene and i don’t really want them to either because of the humiliation of it. all im capable of is sitting in the tub and letting water run over me for a few minutes once a week right now. i can lazily brush my teeth with an electric toothbrush once a week too, also in the tub because i can’t stand at the sink.

i use bathroom wipes on my armpits and genitals whenever i can, about every other day or every three days. i change clothes once a week. i’m disgusting and >!i want to kill myself out of shame over how disgusting i am.!<

i cannot afford a full time caretaker nor do i have the energy to go through that application process and i don’t think they’d believe me anyways. what are my options to hire someone professional to help bathe me once a week? even once every other week? is that possible? i’m scared and ashamed and humiliated and disgusting. i just want to be clean. i miss having the agency to wash my body.

edit: thank u for all the advice, im sorry i dont have the mental energy to respond to everyone rn but im reading them when i can. thank you ❤️‍🩹

i know repressing emotions/stress is bad in general, but feeling them can cause me to crash - they’ve been the main source of my deterioration actually (mostly emotions triggered by outside stressors). i’m obviously extremely sad, angry, and scared about my condition and loss of function, and i’m not sure if it’s more harmful to allow myself to feel these things or not. when im in PEM my emotions are uncontrollable, but now that my baseline is settling i just don’t know what to do. i’ve been repressing like my life depends on it, and it probably does unfortunately. i can’t do therapy because i can’t talk and i can’t risk starting any new psych meds bc im super sensitive to almost all of them and could cause another crash. any advice?

i’ve had the fitbit inspire 2 for about 4 years and ever since they switched to google health it’s basically useless. i’m looking for a replacement that will track my sleep and heart rate and help with pacing. the visible armband is outrageously expensive and the subscription program feels pretty exploitative to me. the other one i’ve seen highly recommended is garmin, but they look so bulky, especially since i’m used to wearing a fitbit. does anyone have alternatives that have worked for them?

Ich (23f) bin vor einundhalb Jahren erkrankt, die Diagnose lautete einmal Post Covid, dann Postvirales Syndrom, und Kreislaufdysregulation wurde auch diagnostiziert. Seitdem hab ich die Dinge ziemlich schleifen lassen bzw war dann in Psychotherapie etc, war aber jetzt seit ner Ewigkeit nicht mehr beim Arzt. Mein Status is aktuell der einer Studentin, ich reiz es aus, aber das hat demnächst auch sein Ende, und ich mach mir Sorgen was danach aus meinem Status wird, weil meine Diagnose ja schon recht alt ist.

Seither hatte ich ne Zustandsverschlechterung und kann eigentlich gar nicht mehr das Haus verlassen. Ich bin letztens zu meinem Bruder gezogen, und hab hier keinen Hausarzt, und zugleich nicht die Ressourcen zu einem zu kommen. Meine Familie und ich suchen jetzt seit Monaten schon nach nem Arzt der Hausbesuche macht, aber ohne Erfolg. Keiner hat Kapazitäten und will mich nicht aufnehmen. Was mach ich jetzt? Wie find ich nen Arzt? Und kann man den Status auch mit der alten Diagnose ändern?

Ich bin aktuell in Frankfurt am Main übrigens.

I meant to say resting in the title… I spilled my lunch all over the floor and I’m trying to clean it up my heart rate kept going up - I stopped and rested- started again- heart rate went back up…. etc…. I just threw my phone and cleaned it u. I was crying and was so frustrated and I just didn’t even care anymore!!!! it’s been a month and I know I need to keep going, but I just got a wall! Now whenever my heart rate goes up i feel light headed and my eyes get heavy.

I just gave up on those moments and racked up many many minutes over my threshold. Not sure how long this pen will last now! I think I’ve been in rolling pen for the last 20 years but now that I have finally learned what it is, I am trying to heal. It is hard!!! it is hard to do nothing… it is so hard staying under 94 but I have to. I allow myself to have a minute at a time of going over the threshold, but it is sooo hard and it takes constantly watching the hr and I am not even living. I still want to do it because I think it will help-it just takes time. I used adderall for for about 15 years and finally stopped in July and I now know my true baseline, which is very low!!! I wash my hair only once a week now and I use the shower chair and put my feet up. I no longer wear makeup or fix my hai. I have not been going anywhere and I now have groceries delivered. I am ok and am not lonely but I wish that I could see some improvement. Ive only been doing this for a little over a month, so I know that it is too soon, especially since I’ve had this for 20 years. I would love to hear other‘s journeys - just so that I don’t feel alone in this. I feel so blessed that I don’t have to answer to anyone and am able to be independent- I keep reminding myself of that. Hugs to all!!! 🥰

TL:DR
I’m housebound struggling with walking but my doctor said mobility aids will deconditioning me and I have to force myself walking painfully.

Situation brief:
-I’m mostly housebound and will become bedbound after going outside (any amount)
-Normal day I can walk from bed to bathroom and if I have to go outside I can also walk (with pain of course, but I can tolerate)
-PEM/crash day I might have to crawl to get around or need some help
-My worst day I will vomit just because sitting up too long, walking just 1 sec

Yesterday I brought up about mobility aids to my doctor, but he said absolutely not. He claimed that mobility aids will deconditioning me and I’m not disable enough.

He recommended that I should force myself to walk, like it will hurt and tiring but you have to do.

I don’t know what to do. I’ve been thinking about getting some mobility aids for months. And from my research, deconditioning is not real for ME/CFS. So I don’t know what to do :( I just want to have my life back. I miss outside. I was so excited to wheel around.

plus I’m afraid that it’s wrong to get mobility aids without doctor’s order.

I’ve had a really rough day today and I’m wondering how other people with ME/CFS manage this.

I had to rush to a GP appointment to get a wound/mole-removal site checked, had a horrible interaction with a receptionist that made me cry, and then basically couldn’t stop crying throughout the appointment.

But once my nervous system gets into this state, it doesn’t feel like a normal short panic attack. It can turn into hours of intense anxiety/restlessness/doom, sometimes lasting most of the evening. My brain gets completely stuck on whatever I’m worried about and my body feels incredibly activated even though physically I’m exhausted from ME/CFS.

I have diazepam prescribed PRN, and sometimes it feels like the only thing that actually interrupts these really prolonged episodes is enough for me to rest or sleep.

Does anyone else here get these really long anxiety attacks/nervous-system spirals when going outside?

If you have diazepam or another benzodiazepine prescribed, how often do you actually end up needing it? And have you found anything else that genuinely brings your nervous system down when breathing/grounding techniques just aren’t touching it?

Not looking for medical advice about dosing, mainly interested in other people’s experiences.

There are now 2 studies that have been published about the use of weekly Rapamycin (LDR) for MECFS, with encouraging yet small results.
But:
- Other studies about the use of LDR for dementia show there is an increase of neurofilaments (Nfl), a biomarker of neurons destruction, associated with a lower decrease in brain volume (which is very different from neurons quantity).

- They claim it *might* be the result of autophagy, i.e. your neurons clean the Nfl, instead of the classical conclusion of neurons destruction. Which means le Nfl level should eventually settle back to normal... which has never been observed with LDR.

- High-dose rapamycin used for immuno-suppression has proven to not be toxic to neurons over years, nor to elevate the Nfl levels either. And contrary to higher doses, LDR stimulates your neurons and may activate something fishy that could mean the elevated Nfl are indeed the result of brain damage.

The ongoing trials about LDR never measure the Nfl, which is bad as this might be the indication of a ticking bomb for the millions who may want to try it.

1. Low dose abilify
2. Ldn
3. Amitriptyline
4. Ketotifen
5. Dipyridamole
6. Plaquenil
7. Metformin
8. Celebrix
9. Memantine.
10. Valtrex

This is just what I'm personally familiar with. Please feel free to add more that you are aware of in the comments section. I am just posting this for those who are on the wait list and wondering what to expect or for those considering this clinic.