u/Safe_Task7712

dear all,

I’m in for 3 years now and I am really at this point where I don’t want to deal with it anymore. No med is fully working, everything is do fucking expensive, this pain and fatigue takes everything from me everyday.
I am afraid of accepting this illness, afraid that once I accept that I will never heal again, that this is my life now, with everything it took from me, that it will be my end. Nobody around me fully understands what it means and how it works, I have no medical support, everything is selfmade help I give to myself but in no way that feels enough.
I wish i had a doctor to just tell me what to do, family with enough money to hold me above water, a partner to comfort me and fight with me.
But waking up everyday with my hope smashed, having good days to then having such shit days, it made me drop so deep into depression that I feel like a rigged nervous system and this sadness is everything there is left.

Hallo liebe Langzeitbetroffene,

Ich bin kürzlich auf jemanden gestoßen, der diese Medikamente gegen ME/CFS nimmt. Ich glaube, es sind Antidepressiva, aber ein Arzt behauptet, dass sie weitere Symptome lindern. Weiß jemand etwas darüber?

Hallo liebe alle!

Ich kämpfe heute nach einem Arzttermin gestern mit einer Symptom Verschlechterung (solange ich nicht komplett k.o. bin weiß ich immer gar nicht ob ich es PEM nenne). Haus verlassen und etwas anderes machen als Körperpflege & Essen sind auf jeden Fall heute nicht drin.
Was ich aber stark merke - heute Morgen im Bett war ich so krass von der fatigue knocked out, im Laufe des Tages ist das etwas besser geworden.
Ich habe das Gefühl, das lese ich hier häufiger: dass die morgende besonders doll sind und dann wird es besser.
Gilt bei mir natürlich nur wenn ich mich dann nicht überlaste.
Ist das bei euch auch so?

hello long haulers,

wishing you a mild day and asking you for advice:
my baseline shifted and I struggle to find out where it is.
I might be in rolling pem, cause I have constant pain, which was not the case before.
I never was as bad as I am now - normal living was somehow possible before.
So I would be thankful for advice what helped you figure out your baseline and also how long it took you.

My ideas so far/ tips I read:
- strict routine for sleep, food, pacing
- cutting everything 50% (but here I wonder - what it that’s not enough)

Longer explanation to make it more clear:
I have symptoms all the time, I’m afraid and I suspect that my crashes/pem are not super strong but they are there all the time so it’s hard for me to make a difference between low baseline/permanent slight pem.
If you have also experiences with that, I’m super thankful!

thank you guys!🎀

dear strong longhaulers,

I hope you experience a mild day!

I’m in the phase of my LC/meCfs journey, where I start to really look into my body and not just push through.
And here comes the catch - I’m not sure if I experience (rolling) pem right now cause I can’t remember what healthy feels like.
I just feel completely fatigued, the famous picture of feeling like not sleeping for days and no amount of rest helps. BUT I feel like I COULD push through (not that I want to). But I read so many stories of people absolutely collapsing with pem. And I saw a post here the other day saying pem feels similar for everyone, it just depends on how long it stays.
Maybe you see where my confusion comes from (also I’m autistic, so it’s hard for me to understand something like that).
Is there a difference between pem and just feeling shit all the time?
I was wondering what it feels like for you?

all the best wishes for you guys!!🌹🌹

Hallo!

Ich würde gern ein Gerät zur Vagusnerv Stimulation ausprobieren. Die gängigen (Neurosym, Pulsetto etc.) sind ja leider extrem teuer.
Habt ihr mit den Geräten Erfahrungen?
Ich habe auch gelesen, dass Leute ihre TENS Geräte mit Ohrenclips benutzen. Hat das für jemanden positive Effekte beim pacing gehabt?

Danke und einen milden Tag für euch 💞

Hello guys,

maybe its a unusual question but I got to know so amazing people via the long covid Reddit spaces, that I want to have trust in internet strangers!
I live in Germany - visible is not available here. I know that I could ship it via a company, but that feels too complicated with my brain fog atm.
Also I don’t have a credit card (it’s not that common in Germany to have one).
Would anyone be open to get money from me via PayPal (for example) and order it and then ship it to me?

I wish you all a mild day!

Liebe Community,

wie oben erwähnt wäre ich sehr dankbar für erfahrene Hilfe.
Ich bin in meinem Studium erkrankt - habe somit nie gearbeitet (bis auf Studijobs) und bin nun arbeitsunfähig durch me/cfs.
Ich habe in den letzen Monaten gemerkt, dass ich mit diesem dauerhaften Zustand langsam irgendwie umgehen muss, auch, weil diese große Angst wie ich mich versorgen und damit langfristig leben soll, mich unfassbar stresst.
Bis jetzt habe ich nichts mehr als die Diagnose.
Ich bin kaum an dem Punkt angekommen wo ich Bürokratie irgendwie durchblicke, noch weiß was für Leistungen nun für mich in Frage kommen und worum ich mich kümmern muss.

Ganz konkret frage ich mich:
- durch welche Sozialleistungen kann ich finanziert werden?
- was muss ich sonst noch abklären, welchem Ant Bescheid sagen
Und bestimmt noch so viel mehr, was ich jetzt gar nicht auf dem Schirm habe…

FYI: ich kann weder familiär noch aus eigenen Rücklagen finanziell irgendwie abgesichert werden

Kann mich jemand an eine Beratungsstelle verweisen?

Ich danke euch sehr und wünsche euch eine milde Nacht!

hello dear all,

I’m in a worsened state for some weeks now and I start to wonder if it’s my new baseline or ongoing pem/pene?
How do you guys know the difference? And how do you then handle it differently when you don’t feel good for such a long time?
Cause I’m in constant fatigue and pain, which used to be my biggest pem signs, but also they were always a bit there.

I appreciate you answers & big thank you and good recovery all!

hey guys,

I recently started dating a 42 y.o. wonderful baddie, she is caring, funny, sweet and hot in all ways there are.
I am 31 (both f) and in a really respectful way (I know you guys are not all the same haha).
Are there any tips on how to make the time with me even better for her? I know, it’s a weird question, but happy about all you have

hey guys,

I was wondering if we know, if the thing that throws us into pem also relates to what the pem symptoms will be/are.
Hope it clear what I mean.
But that would mean going over the baseline with physical activity causes more physical symptoms and cognitive activity cognitive symptoms like braun fog?

Edit: also if that would influence what brings us out of pem - pacing „more“ physical or cognitive

Would be interested in official research but also your personal experience.

hope you have a mild day & thank you!

Hello!

My most severe symptom is persistent muscle pain (which gets worse during pem).
I’m managing the rest, but I thought maybe some of you here might have a tip or two!

I’m currently taking these dietary supplements:

50 mg NADH
300 mg Coenzyme Q10
500 μg iodine
500 mg L-tyrosine
200 μg selenium
300 mg magnesium taurate
300 mg magnesium malate
500 mg quercetin
480 mg vitamin C
25 mg vitamin B6
25 µg vitamin D
20 mg bilastine
lactoferrin
iron
15 g D-ribose

Thank you!

Hallo!

Mein stärkstes Symptom sind die anhaltenden (bei Pene schlimmer werdende Muskelschmerzen).
Den Rest bekomme ich gemanaged, aber ich dachte vielleicht gibt es hier den ein oder anderen Tipp von euch!

Diese NEM nehme ich zur Zeit:

50mg NADH
300mg Coenzym Q10
500 μg Jod
500 mg L-Tyrosin
200 μg Selen
300 mg Magnesium Taurat
300 mg Magnesiummalat
500 mg Quercetin
480 mg Vitamin C
25 mg Vitamin B6
25 µg Vitamin D
20mg Bilastin
Lactofferin
Eisen
15g D-Ribose
1-2x täglich Elektrolyte

Edit: Medikamente:
0.5g LDN
1mg Ketotifin
4mg Famotidin

hey guys,

I was wondering if we know, if the thing that throws us into pem also relates to what the pem symptoms will be/are.
Hope it clear what I mean.
But that would mean going over the baseline with physical activity causes more physical symptoms and cognitive activity cognitive symptoms like braun fog?

Edit: also if that would influence what brings us out of pem - pacing „more“ physical or cognitive

Would be interested in official research but also your personal experience.

hope you have a mild day & thank you!

hello all!
I’m slowly climbing out of a very severe crash and wanted to share my experience, in case it includes smth that might help another person. It’s nothing completely new - but who knows!
I came from mild to severe a few months ago.
The last two weeks I was so desperate, that I tried everything that I could get my hands on and hadn’t tried so far - it worked, but now I don’t know what exactly it was (🤡).
I know it was not smart to start it all together, but my depression got too dangerous to wait with those things individually.

I am not sensitive to meds, so take this with a grain of salt - it might be too much for some bodies to do all together.

- D-Ribose (3x5mg per day)
- Sanopal Forte liquid 1x per day
- LDN 0.5mg
- nicotine patches 7mg/day
- new introduced iron supplement
- electrolytes 2x day
- Ketotifin 1mg/day

LDN was crazy - it started working immediately with my pain and energy, I know that that’s a privilege!

dear community,

I asked something quite similar a while ago, but I am now I a rather difficult situation.
I try to cut it very short:
Background to this case: The access to doctors in my area is really bad and risky, so I always need to double check with you guys for safety.

I’m either in rolling pem right now or in a worsened state since two month to moderate/housebound (I can’t tell the difference anymore)

I was put on Ketotifin and Famotidin last week.
Now I got access to LDN - I got it today.

I have an important meeting in 6 days - I would need to be there for 4 days for my final exam, otherwise my phd program was useless and I would need to pay it back.

I’m questioning if it’s smart to take LDN now with the possibility of it kicking in (0.5mg dose).
But I don’t know how risky that would be right now.

I know this is desperate and we all have better things to do than helping random people all the time. But this it really overwhelming decision to be alone with right now and I need and appreciate help.

I thank you so much

dear community,

I asked something quite similar a while ago, but I am now I a rather difficult situation.
I try to cut it very short:
Background to this case: The access to doctors in my area is really bad and risky, so I always need to double check with you guys for safety.

I’m either in rolling pem right now or in a worsened state since two month to moderate/housebound (I can’t tell the difference anymore)

I was put on Ketotifin and Famotidin last week.
Now I got access to LDN - I got it today.

I have an important meeting in 6 days - I would need to be there for 4 days for my final exam, otherwise my phd program was useless and I would need to pay it back.

I’m questioning if it’s smart to take LDN now with the possibility of it kicking in (0.5mg dose).
But I don’t know how risky that would be right now.

I know this is desperate and we all have better things to do than helping random people all the time. But this it really overwhelming decision to be alone with right now and I need and appreciate help.

I thank you so much