u/Safe_Task7712

Hallo Hallo!
Ich befinde mich seit Mai in einer stark abbauenden Phase und rutsche langsam in schwere ME ab. Ich habe noch immer große Schwierigkeiten zu verstehen was genau zu viel ist und befinde mich vielleicht auch in rolling pem?
Ich habe keine Kraft mich online selbst zu belesen, schaffe es kaum längere Zeit am Stück wach zu sein.
Ich habe das starke Befürfnis nach einer Person die sich auskennt und mir helfen kann. Die mich betreut und mir sagen kann was der nächste Schritt ist vielleicht - das wäre auf jeden Fall das Wunschdenken dahinter.

Mir fällt da das Thema Coaching ein etc. Hat jemand Erfahrungen damit? Gibt es das überhaupt für uns? Ich bekomme auf Insta und Co. oft Werbung für Leute, die dem Reactive Programm ähnlich sind (kurzer disclaimer - habe keine Ahnung davon, schaffe nicht was darüber zu lesen). Aber das ist ja auch eher GET und eigentlich nicht empfohlen.

Vielleicht habt ihr ja ähnliche Erfahrungen oder es geht euch ein anderer Gedanke dabei auf.

Dankeschön und ich hoffe, ihr habt einen milden Tag :))

First of all - a big thanks to the wonderful mods here! You helped me and a lot of people so much already, I really appreciate it.

I would love to get some community help on my situation rn:
I started LDN in July (going up 0.5mg every two weeks). Everytime I went up, I had some awful days, but they went away. When I first started I had the feeling that LDN helped me directly after the first dose (it was the first morning in months that I woke up without pain.) But other than that I couldn’t say if it helped my over all ME/CFS condition tbh.
After trialing up the past months, last Saturday (8 days ago) I went up to 3.0mg. I had those first really really awful days, and then it got a bit more easy. But I still have a lot of symptoms, maybe even pem, I don’t know. (That’s also the shit - I don’t know it it’s because of LDN upping or if it’s pem or whatever)
What should I do now? Should I go down again or just wait? Or should I go to 3.5mg next week?
How do you know it’s too high if you feel shit all the time?

I appreciate your help, thank you!!💘

Hallo!

Entschuldigt falls es diese Frage schon gibt, dann habe ich sie leider nicht gefunden!
Ich habe eine ME Diagnose, frage mich in letzter Zeit nun aber oft ob MCAS bei mir auch mit rein spielt.
Wie unterscheiden sich bei euch die Crashes der beiden Krankheiten?

Ich nehme schon Ketotifen, Famitidin, Allegra und ernähre mich Histamin frei. Ausserdem bin ich auf LDN und diversen NEMs die für die Mastzellen helfen sollen.

Ich bin langsam echt verzweifelt, weil einfach nix zu helfen scheint.

Vielleicht noch als Bonusfrage: mein Ärzte bemühen sich sehr, machen aber keine richtige MCAS Diagnostik - was wurde bei euch gemacht. Dann kann ich danach vielleicht direkt verlangen.

Ich danke euch!

hey guys,

I prefer this sub much more than the other ME/CFS subs - maybe we all do.
Lately I came across many people that got better here, but most of them “just” a few months after Covid or EBV or another trigger.
So I wondered - how it the hope for the longer ones? I am 3 years in and went from mild (and not knowing stuff) to moderate (housebound, symptoms all the time).
I wonder what’s your experience? Is it possible to get better still?

Lots of love!

Hello dear all,

I wonder what your experience is with that and would be really thankful for your help!
I had a big crash in spring and I assume that my baseline got significant worse (went from mild to moderate).
Now I have a weird rhythm of feeling fine one day and worse the next day and so on. I try to not get into a push/crash cycle by not overdoing it on the „good days“, just a slow short walk in my pace points and maybe a bit more talking to my family.
I don’t feel completely awful on those „bad“ days, but my muscle fatigue is stronger and my other symptoms are just a bit more there.
Now I wonder if it’s still considered pem or if it’s a flare because my body needs to get used to the activity again after not moving for a longer time?
It’s been in this two day rhythm for weeks now and I am really feel like I face a wall with my own knowledge how to deal with it. Also sometimes if I do nothing, except going to the toilet and really minimize everything, the rhythm stays as well.
Am I going insane?

Thank you so much and I hope you have a mild day!
☀️☀️☀️

Hello dear all,

I searched for similar posts but couldn’t really find one, so I hoped to get some help!

For me the mornings are the hardest, not only body symptom wise, but with a lot of anxiety.
I can manage more during the day, but it feels like a huge amount of fear hits me in the morning right when I wake up. Not only about my health not coming back, but about my career, my parents dying, something bad happening to my loved ones, ending up alone and without help, not being able to take care of myself - I think that’s the big big fear under all of it.
In a healthy or more stable state, I would take a walk and feel better. But this anxiety came up since I am housebound and with that really disabled.

I feel like nothing can touch it in those moments, meditation is hard.

I am a bit without tools here, so would love to get an insight if someone has a tip :)

All the best for you!

hello dear all,

I’m usually a person who gets a lot of help by talking about stuff with my mum or my friends. But when it comes to me/cfs related stuff, that’s just not so possible all the time, bless them, but they just can’t relate.

So I would appreciate some help and some advice or just thoughts about what would be good to do. Or honestly just someone to talk about this. It’s a fucking isolating illness <3

I started LDN a month ago on 0.5, went up every two weeks, so now on 1.5
I don’t know if I really saw a difference just because of LDN or also serious pacing, but I think it already took some pain away and gave me a bit more energy. I assume I had no side effects.
I just came out of a really bad crash and I still don’t feel really stable, I started in this crash and it made me go from not able to cook for myself and ugly painful days24/7 to sometimes really okay days (all while being housebound ofc/moderate and not more than 900 steps a day). I still have pem kinda days every other day, but funny enough it does not knock me out completely, it usually stays for a day.
I heard that 1.5 is quite low, so I thought about starting to up it every week.
I had okay days this week (just two pem like days).
I’m a bit afraid that it’s too much for my body and I should stay with two weeks, but also I would really like to experience some more relieve and hope 2mg would do that for me and heard 1.5 is hardly to notice.

I hope you all have a nice day. Thank you for this community. It’s truly something that makes it easier.
All the best for you!

hello dears,

I’m usually a person who gets a lot of help by talking about stuff with my mum or my friends. But when it comes to me/cfs related stuff, that’s just not so possible all the time, bless them but they just can’t relate.

So I would appreciate some help and some advice or just thoughts about what would be good to do. Or honestly just someone to talk about this. It’s a fucking isolating illness <3

I started LDN a month ago on 0.5, went up every two weeks, so now on 1.5
I don’t know if I really saw a difference just because of LDN or also serious pacing, but I think it already took some pain away and gave me a bit more energy. I assume I had no side effects.
I just came out of a really bad crash and I still don’t feel really stable, I started in this crash and it made me go from not able to cook for myself and ugly painful days24/7 to sometimes really okay days (all while being housebound ofc/moderate and not more than 900 steps a day). I still have pem kinda days every other day, but funny enough it does not knock me out completely, it usually stays for a day.
I heard that 1.5 is quite low, so I thought about starting to up it every week.
I had okay days this week (just two pem like days).
I’m a bit afraid that it’s too much for my body and I should stay with two weeks, but also I would really like to experience some more relieve and hope 2mg would do that for me and heard 1.5 is hardly to notice.

I hope you all have a nice day. Thank you for this community. It’s truly something that makes it easier.
All the best for you!

Hello!

I mean in general, I’m not really at a stable baseline right now. Everyday is a gamble and it’s awful.
I just got out of the bed after 11h of sleep and I feel awful. Which is depressing cause the only thing I did was go to a doctors appointment 3 days ago. Resting in bed the other days.
But what I always notice - I feel so much worse in the morning than the rest of the day (given that I’m homebound). Even when I feel awful in the morning but have to get out for a doctors appointment or because they delivered my order to a neighbor, I sometimes feel slightly better.
I would even say, that every morning I wake up, I would guess I’m in pem or at least see it coming. That’s luckily not always the case.
But I really wonder why is it hell in the morning?

Hallo! Ich will gern mit Psychopharmaka beginnen um die begleitende Depression zu managen, die sich bei mir breit gemacht hat.
Hat jemand von euch eine Empfehlung/ gute Info Quelle?
Ich kann mir vorstellen, dass ich besser dran bin, wenn ich mit Vorschlägen zum Termin komme! Danke schonmal :)

Hallo liebe Community,

ich würde als Nächstes gerne das Thema Sauerstoff oder HBOT angehen, da ich jetzt doch einige Menschen getroffen habe, denen das hilft für die ME/CFS Symptomatik.
Wenn ich online Suche komme ich vor allem bei so privat healthy kliniken raus, die ein Vermögen kosten.
Ich habe schon do viel Geld für andere Behandlungsversuche ausgegeben, ich muss jetzt etwas sparsamer sein.
Habt ihr Erfahrungen mit Sauerstoff - evt. ärztlich verschrieben und von der Kasse übernommen?

Vielen Dank!

Hello dear all,

Sorry if it’s a basic question and the thought is wrong, but I wondered if there are different study fields to focus on for us, if we have specific area symptoms?
I know that it’s a combination of immune system, mitochondria, nervous system -
I for example have almost no neurological symptoms (no brain fog, no problem using screens) and my sleep is good and constant. Just a lot tired and wired during the day. And constant anxiety + alarm.
My biggest problem ist the fucking extreme pain and of course pem.
Also my blood showed spike proteins (and quite a lot!) but not this G-Protein Receptor thing (sorry, I forgot the right term, there it got too high in medical language for me).

Soooo I wondered it that means one of those ares (mitochondria, immune system, nervous system) is more in distress than the others?
Or is that not how it works? Are we all fucked up randomly and the symptoms are a gamble?

Thank you for your help!🎈

Hey guys,

I guess this is just venting, but I just feel defeated at this point.
I tried so many meds (I have moderate/severe ME with strong PEM), I had high hopes for LDN!
The first night after starting with 0.5 I had the feeling that my pain was a bit better the next day, but that never happened again.
I stayed on every dose for two weeks, now I am on 1.5mg (6weeks in total) and it’s not doing anything.
I am really sad. I hate this constant hope crushing with ME! I don’t wanna feel so fucking shit anymore!

Hello dear all,

I wonder what your experience is with that and would be really thankful for your help!
I had a big crash in spring and I assume that my baseline got significant worse (went from mild to moderate).
Now I have a weird rhythm of feeling fine one day and worse the next day and so on. I try to not get into a push/crash cycle by not overdoing it on the „good days“, just a slow short walk in my pace points and maybe a bit more talking to my family.
I don’t feel completely awful on those „bad“ days, but my muscle fatigue is stronger and my other symptoms are just a bit more there.
Now I wonder if it’s still considered pem or if it’s a flare because my body needs to get used to the activity again after not moving for a longer time?
It’s been in this two day rhythm for weeks now and I am really feel like I face a wall with my own knowledge how to deal with it. Also sometimes if I do nothing, except going to the toilet and really minimize everything, the rhythm stays as well.
Am I going insane?

Thank you so much and I hope you have a mild day!
☀️☀️☀️

Hello dear all,

I am 29 and 3 years in, I try to take a different approach to my healing journey now and read about nervous system work here a lot. What is it? Is it brain retraining?
And could someone give me good examples to start euer nervous system work?

Thank you 🎀

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!🎀