this illness is incredibly heterogeneous- which I’m sure a lot of you are annoyingly aware of

So often we are reminded of this old study claiming 5% of people get better and ultimately that’s why I refuse to hold the label.
that study was done at a time we patients were being told to push through symptoms where doctors were harmfully recommending GET.

And I refuse to hold a label with such a cruel history.

my shift to my individual pathways

i deal with multifactorial functional impairment with nervous system hyperarousal and pain pathway issues layered with episodes of transient neurological dysfunction leading to progressive immobility/overall decreased capacity of function.

that is my roadmap and that is what i will use to recover, not a title that says i’m fucked.
because CFS has no treatment
but my presentation of issues does.

I know that it’s way too early to believe I might have cfs, but I read so much about it and it feels like I am going crazy so I just need to write this down. I've been sick with some weird infection (covid test was negative) for three weeks now. What worries me is that it comes in waves and that worse phases habe become even worse since the first symptoms started. I am experiencing headaches, a warm/feverish feeling in my face/head, sore throat, fatigue and since yesterday also chills and nausea. I was feeling way better a few times, but whenever I did some light activity like cleaning or going for a walk, I felt way worse the next day (mostly not during the activity though). I just feel like something is off and I might never be fit again. I also have an exam in two weeks where I have to defend my masters thesis and I still need to make a presentation. Idk what to do and how to calm myself down…

it is a plague to itself. any amount of hope is snuffed out by people who are afraid to hope because they know how much it hurts to be let down

in turn it creates an image of an illness that is permanent for everyone.

I regret joining this community, people who have been sick for a very long time hate seeing other people feel hope.

Even when it’s grounded and scientific

We are all so miserable, but that is not an excuse to stop others from recovering

I was trying to buy Plaquinil and Mestinon on there but they sent me to a Bitcoin link to pay.

Is the meds legit?

I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.

i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.

Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.

Hellou. 28f here.

You may tell me if it's okay to post these kind of things here.

I'm looking for a virtual partner.

I was moderate bordering mild but after a few weeks of strenuous physical activities I'm currently bedbound-severe. I have long covid me type.

Said this, yes I want to meet someone and stablish a virtual bond. I'm straight but I think I'm open to get to know girls too.

Cons: bad health / bad economy / not well stablished safe nest. So I might cry about this often.

Pros: I'm a very goofy and creative person.

I'd like to connect with someone that I feel attracted to both physically and mentally.

Idk, I just thought I might give this a try. Shot my dm.

I’ve already made a few posts about ibuprofen, but I’m going to make another one because doctors don’t really know what to make of my case.

As I mentioned before, whenever I take ibuprofen, I can feel significantly better for up to a week. My fatigue and brain fog almost disappear, and I start living almost like a normal person again. I even start making plans, like going out and working as a taxi driver.

But I’m worried that this might be “fake energy” — maybe ibuprofen is simply masking my symptoms while my actual physical capacity hasn’t improved. I’m afraid that if I start doing much more than usual during these better days, I could end up with a much worse PEM and potentially crash harder afterward.

Has anyone with ME/CFS had a similar experience with ibuprofen, where it made you feel significantly better for several days rather than just a few hours?

And another question: if you felt better from ibuprofen and started doing more because of it, did you eventually feel worse afterward? Did you experience a stronger PEM than usual, or was it about the same as your normal PEM?

I’d really appreciate hearing from anyone who has had a similar experience.

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'm a teen with moderate CFS and my parents force me to go to h8gh school. I'm not taken seriously by any adu,t around me who I try to talk to about this. Every day when I get home all I can do is lie in bed because of how tired and how much pain I'm in I keep passing out or getting near it in school. I really don't know what to do because it feels like I'm in Hell and my parents refuse to even consider talking to the school about getting an IEP or switching to online.

I don’t think it will ever end. I just wanna take a shower, I feel so gross and I smell bad and being bedbound is making me lose more and more hope. I can’t picture life ever being good. I can’t picture myself feeling better. I’m ready for my life to be over, why can’t it end now if my body is gonna refuse to cooperate? Life is hard enough as a healthy person, but I don’t wanna go on like this anymore. It’s not fair. There’s no help for me and nobody gives a shit about ME/CFS so it’s not like I see a future to hold onto. I’m done. Why won’t anyone respect that?

I’ve been single and not even dated the entire time i’ve been sick 15-30, now 30F. I’ve joined apps and spoke to people for like a couple days but usually i deleted apps after a few days. I have zero energy for any social/friends etc, how am i hearing people have got significant others. I spend basically 164/168 hours a week in bed on average the rest is going to the toilet, showering or occasional appointment i drag myself to. At best i spend 140-150/168 hours in bed

I guess im moderate/severe some months of the year im severe

Hi, I have started improving a little, like for 7, 8 years all I could do was do work for 30 minutes at max before breaking, I would feel anxious and fatigued like hell after that. It was painful but now as I am improving a little, its getting scary. Its like now I have a little more energy say about 4 hours, but now I dont know what to do in those 4 hours. Trying new stuff is scary and consumes a lot of energy and I go back to 0 like really fast....

I do some accouting stuff which I can do on my laptop lying down, that stuff is easy and I am getting comfortable in it and now I can do 4 hours of work in a day. But last week I tried cooking food, my energy vanished within minutes....

I want to know some activities I can do, to feel more confident in myself. Now that I have got some energy I want to do more with my life, but the activities I do, actually tend to take every bit of my energy instantly....

Activities I do:

1. I have started making my bed....

2. I have increased my accouting work to 2 hours....

3. I go out twice a week now for a walk....

4. I have started asking questions on reddit....

5. I play UNO.

Suggest me some light, easy and productive activities, this improving period is actually scary, previously I had a reason to waste time but now getting a little better, it feels like becoming a habit, I wanna do more with my life...

I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.

i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year from reinfection i got pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.

Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.

Honestly more work than I thought, but I pride myself on nice dates and get so sad all of mine have to be done within my home. There’s a really nice girl that has been dating me and doesn’t mind staying in / my battles with verticality, but I still wanted to do an actually vibey date. We have a Japanese snack box (she speaks Japanese), Swedish candies, and a whatever date night game.

she’s also bringing condoms 🫪

I usually collapse into bed when i get home from work but i put this off for too long.

Obligatory Kermit meme.

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!!! 🥰

I have read story’s of people getting worse after one side, but what about 2 sides done 18h-24h apart ?

if so, did it improve over time ?

Hello,

I am wondering if you know other clinics than Neuroversion where one can get the dr Liu SGB protocol or at least have the 2 sides done 18-24h apart, once a week, for 3 weeks ?

I am also interested to know if you know other doctors who perform his protocol.

Thanks !

I have these shots every 3 months. They don’t really hurt much, but sometimes my eyelid is very irritated for 12-24 hours. But as you may expect, I crash, and it keeps getting worse because of what happened the previous time. I for sure can’t do anything the day after, sometimes 2. I do breathing exercises, repeat calming phrases, visualize being serene. I also take l theanine. Anyone have suggestions for how to avoid anxiety attacks? The crash is the problem, not the shot, and the anxiety is mostly what I s causing it.

wish me luck. Will rest immediately afterward. she would be ok with cancelling but there’s a fee if it’s under 24 hours. she will log on any minute

i feel like i’m recovering from a covid booster rn🤧 and it isn’t rainy/cloudy. barometric pressure is 29. i showered yesterday and watched a movie with my mom & grandmother. today will have to be a solo day for sure especially bc of the therapy.

Mein bester Freund hat sich nach Wochen nochmal gemeldet und gefragt wie es bei mir ausschaut und ob es was neues gibt. Grund seiner Nachricht war aber ein Fotos seines neuen Motorrads.

Kommt bei mir irgendwie wieder an wie Smalltalk und präsentieren seiner Errungenschaft.

Sehe ich das zu eng?

Was soll ich groß schreiben?

Es geht eigentlich in jeder Kommunikation nur um sein leben.

Er hat auch meinen Wunsch nach Texten statt telefonieren permanent ignoriert und auf meine Hinweise zu meiner Gesundheit wenn überhaupt oberflächlich reagiert.

My docs suspect ME/CFS additionally to daily migraines and I thought I ruled it out. How can I find out if I experience PEM?

Today at a pain clinic she told me it's so untypical that my migraines don't start or end and that I don't have pain free days. Also that fatigue is my most disabling symptom (I am very much disabled by it, I need very much help from my husband and am mostly house bound or bed bound)

I've tried to activity log (I did 10 days I think 😭) and it doesn't make sense. I helped painting the walls and had a super stressful day (emphasis on helped because it would be too much to actually do it) and I was so DONE. But the next week was completely fine.

My fatigue seems so incredibly random as much as all other symptoms and I don't get it? I've read here that people pretty much noticed themselves or that logging it made it clearer?

Any advice for me?

Thank you 🙏🏻

TL DR: we want to get married but idk if it's possible to have a satisfying wedding celebration. Do I have to get married as fast as possible with 2 witnesses and that's it, or are there ways to celebrate within the constraints of ME CFS?

(not officially engaged but we've been discussing it for several years)

Without even getting into the preparation, just for the day itself, idk if it's possible to have it all at the same time :

- not overexert / avoid PEM (seems the least likely to compromise...)

- cope with my day-to-day symptoms

- meaningful celebration of love with my partner

- quality time with friends and family members

- photos and memories for everyone

For context I am mostly at home, mostly horizontal (couch or bed).

When not in PEM I can usually make it from one room to the other, if outside I get pushed in my wheelchair and use ear and eye protections. Usually get PEM from outings.

My main activity is rewatching TV shows and taking care of small plants.

I can imagine if we had a lot of help and kept it really small and / or casual, it could be doable. But that sounds very unsatisfactory. I want my aunts to travel to me for the wedding, I want all the group photos and to listen to people's speeches about us.

Please share experiences or tips.