u/Available-Pepper5688

Can someone relate?

I just came home from hospital yesterday and the very first days have been soo strange as non of the docs knew anything about me cfs and they really didn’t know what to do with me as the lab results were good 😂

But luckily I was evaluated by a neurologist and now I have documented that I can barely walk a few steps anymore.

Shure, I‘ll still have to advocate for me a lot at different places in next time/years. But I‘ve been living with this condition for about 30y now, since 2017 I was mild, but I‘ve always been soo exhausted at my baseline and no one ever believed my.

Even after my first really big crash in 2017, when I declined to moderate-severe, I was told it was just depression and that I have to move more and just don’t try enough.

In between I was able to have a good performance at my job, but in my freetime, I couldn’t do anything but recover. I was convinced that I‘m just lazy, repeatedly failing and just don’t try enough.

Now that I‘m diagnosed and have a name for what’s been happening to me for so many years, I‘m somehow relieved as many people around me start believing me.

And I‘m very relieved that now I can start believing even myself, stop blaming and gaslighting myself and start to take this seriously and be more caring to myself and no more wanna push further.

Maybe it sounds really strange, but somehow there‘s a lot of stress just vanishing. As if I‘m allowing myself to be ill and stop fighting reality.

Tk;dr: I‘m too exhausted to eat, I get severe symptoms after eating and I‘m losing weight rapidly.

Now I‘m in hospital and I got weighed this morning and I lost 4kg since last week. Even since monday it was 2kg. I‘m no more hungry. Eating is such an exertion, although I already puree my food. I eat keto, so it’s really dense in macros.

I eat very slowly, small portion in 30min. Afterwards my system goes crazy, I feel nauseous for 2h, I get severe tachycardy and many extrasystole for 2-3h.

Most days I can eat two portions, yesterday it was just one. I‘m in rolling pem and I‘m so tired and so weak, I have to rest most of the day.

I think that could be due to MCAS. Next week we wanna start with H1/2, maybe that helps a bit.

I‘ve been worsening so quickly and got next crash yesterday from getting hair washed on monday. My doc and I decided to get first assessment as inpatient today.

I‘ve been experiencing so much medical gaslighting in the last 9y and I really worry about that to happen.
Next I have this strange pattern that I start to even gaslight myself and ask me if I‘m maybe just very dramatic and make things just up…

My doc is very caring and will send me a paper for the ER docs, that I need to rest a lot and need pacing even there. Hope that‘ll work out.

I‘m afraid of the outcome of my current crash and the followimg pem from the hospital.

Does anyone know this pattern?

I‘m worsening from severe and am in constant pem and have to shutdown from the world the whole day.

And when evening starts and day is over I get about one hour where my mind is increasing and I get a little energy.

As if I‘m relieved that I made the day and can prepare for sleeping time… 🩷

I‘m in rolling PEM and worsening quickly and I know I should rest, but today it‘s not working.

Yesterday I got really bad lab results, my thyroid is going crazy and we should check this properly and that means more doctors appointmemts…

Yesterday after beeing at the GP office I crashed instantly with sore throat and just rested. In the evening I got the first result and since then my brain is so restless, I have massive pain from last PEM and waiting it to get worse from yesterdays appointment.

I know I shlould rest am save energy, but it‘s not possible, my GP office wanted me to go there again this morning and as I ask for a call from my doc, they first refused bc „they don’t do this ordinarilly“. I’m still waiting for the call bc I wanna speak with someone about that situation…

I should get sth to eat and wanna take a shower. And I know I should rather rest.

Do you take sth and which are helping you?

I can’t start with LDN yet cause I‘m still getting worse since 4-5w now and I‘m afraid to induce a even more severe crash through starting too early.

Sometimes I take some Ibuprofen and sometimes it‘s helping for my headaches, most times not.

Nothing yet is helping agains my muscle and joint pain.

Hi folks!
Question is in the very last abstract.

I got newly dx with ME 3w ago and now everything makes a lot of sense what I`ve been experiencing the last 9y! I`ve been trapped in a constant push-crash cycle and it`s very important for me to learn that is`s actually ME, so I have to learn new strategies.

I was able to improve several times from moderate-severe to mild-moderate in the last 9y, everyone thougt it was just depressions and as soon as I got a bit of energy back, my ADHD kicked in and I pushed throug, until I crashed again.

Now I`m the very first time severe and bedbound since heavy PEM 4w ago. Cognitively I`m slowly improving, but physically I`m just getting weaker and weaker every day.

The last two days I had way less pain for the first time and yesterday I stayed in bed 22h, but I just had too much screentime and rested not enough and I already felt it in the evening and today I`m really bad again.

I`m so worried about improving someday bc I know myself and how my ADHD wanna go crazy with me as soon as I`ll have a little energy back!

Yesterday I`ve ordered the book: classic pacing for a better life with ME.

How do you handle situations like that? how can you force yourself to rest when your ADHD is kicking in?

Hi folks!

Maybe I‘ll find someone here who has any idea about my situation.

I started my ketogenic diet with a study I could participate in, with good dietary expert last year in August and I felt so much better after just two weeks in it. That time back I took a very high dose 180mg/d of Duloxetine and in ketosis I suddenly got more severe side effects and we decided to taper it down/out. After every dose reduction I just had mild symptoms and I was very impatient and tapered too quickly in 5w to zero and some weeks after I stopped it, I got horrible symptoms that just got worse.

In February this year we reinstated half of the dose again, but the withdrawal couldn‘t be stopped, just got a bit milder. During that time of severe symptoms my ketoses just crashed, we think bc of the immense stress load to my system.

In April I was again in a very nice deep ketosis and had a lot of energy.

Since May I‘m worsening again, I am just able to be in ketosis for 1-2 days a week, my auonomic system is out of order, I‘m hungry all the time, especially after exertion, I‘m eating too much and I got weaker and weaker and developed very strange muscular pain and headaches (I rarely have headaches).

Now I‘m in a severe crash since a month and bedbound and my symptoms still get worse. My doc things it’s ME/CFS, obviously I‘m having it since 30y, but mostly mild. In the last 9y I was in a push-crash-cycle and was told it‘s just depression.

I still have horrible hunger attacks, possibly due to autonomic dysregulation. I take MCT every day and some days I‘m in a moderate ketosis, most days I‘m not.

My dietary expert doesn’t know me to help anymore bc my situation is too complex and somehow she can’t imagine that stress can have such a severe impact on ketosis and that in ME/CFS there‘s a lot of mitochondrial dysfunction around.

I‘m taking a lot of electrolytes, ubiquinol, omega 3, Acetyl-L-Carnithin, NAC and I ordered niacinamide and betaine. As soon as I get a bit more stable, I‘ll start with LDN.

My doc is super supportive luckily, but my situation is so special, there‘s such a lack of literature with every single diagnose I have… so we‘re both doing a lot of research and discuss our thoughts about it.

Anyone any idea what else I could do? Any experiences with something like that?

Quiestion in last abstract.

Today I was discussing with my doc about starting LDN. It will take about a week to get it delivered from Germany as it’s way cheaper there.

Currently I‘m recovering from a crash 3,5w ago. Mentally I‘m improving a lot, still a lot of headache, but way less brainfog.

But physically I‘m rather deteriating, I‘m still mostly bedbound, I can be out if bed sometimes in the morning for 1-2h. Today I was shopping groceries and it’s nearly impossible pushing the trolley. That went better last weak!

I’ll start very low 0,125/0,25mg as I‘m a bit afraid of side affects and impact on my system.

So would you advice to start with the ldn as soon as possible, or rather wait some time hoping I could improve a bit before starting?

Hi I`m new here. I was diagnosed with mecfs just 3w ago and kind of happy that I found a doc who believes my story and takes me seriously!

My symptoms startet in my teenage years, some 35y ago, I got poorly vaccinated, had a lot of infections, am Autistic and with ADHD and cPTSD, so lots of possible reasons to get mecfs… I was a high performer for long time, I just pushed through until I passed a threshold in 2017 when I crashed severely and got moderate-severe first time.

For the last 9y I was told I „just“ have depression and should try harder. I managed to „recover“ to mild-moderate several times and was on sick leave most of the time, but as soon as I started in my job again I immediatly got worse and it never took long time till I crashed again.

In 2023 I got in menopause and my exhaustion worsened but I triet to ignore it due to my new job, in 2024 I had covid and one month after a severe herpes zoster infection and since then I`m moderate-severe again.

Since last year I have a severe withdrawal from duloxetin that finally unmasked my mecfs and my symptoms worsen gradually since then.

It`s so important for me to finally know whats wrong with my system because I never learned something about pacing etc… I`m a bit afraid of how long and severe the withdrawal will remain, because that`s obviously triggering a lot of pem and is worsening my in general situation a lot. I had never such severe symptoms like in the last 6 months.

Whats your experience with go-mecfs?

I`m new here and so happy I found this sub! I`m newly diagnosed with mecfs, although it began in my teenage years 35y ago, but I was mild-moderate for many years and I think I just could override my symptoms due to my ADHD. I was a high-performer for many years until I reached a threshold 2017 and crashed severely. I was told for many years that it´s just depression and I had sometimes bad depressive episodes, but mainly I was so fucking exhausted all the time. In the last 9 years I was switching between moderate and severe and as soon as I got a little bit energy, my ADHD is kicking in and my system wanna go crazy. So I was trapped in this boom-bust-cycle the very last years and always thougt and was told I just don`t try hard enough. Currently I`m recovering from my worst PEM ever and don`t have much energy left but I`m afraid how to handle the situation if enough energy should be back without crashing everything again. I`m so relieved I learned that I have me and that`s never be me trying not enough, but I need a new strategy. I try to force me to pause regularly and schedule not more that one task per day and sleep enough. I have to learn from scratch how to take care of me and to take myself seriously. I`m Autist too and not well connected yet to my system. And of top I`m in a severe withdrawal from duloxetine for 9m now, that finally unmasked my me and it`s impossible to differ what`s from what, but that will improve the next year I hope. Thanks for any advice.