u/SleepAmazing4367

Ich hoffe hier finden sich vielleicht auch einige Reddituser aus Deutschland mit Me/CFS.

Meine Neurologin hat mir jetzt schon zum zweiten Mal eine Reha empfohlen. Allerdings kenne ich Rehas nur mit dem Konzept der Aktivierung.

Dass Maßnahmen dort gemacht werden müssen und dass das nicht zusammen mit Pacing funktioniert.

Hat jemand Erfahrungen mit Kliniken die sich damit wirklich auskennen und den Patienten die Ruhe geben, die sie brauchen?

Hatte jemand bereits eine Reha?

Ich überlege ob das wirklich sinnvoll für mich ist..

So there was this girl I befriended for months okay. We had fun for quite some time. The last time was yesterday.

Today she invited me to a fishing event she started and got really mad because we weren't friends anymore and thought I unfriended her. But I never did!

Now all of our friendship level is just gone!

Is this a common bug or something?

Now I wonder if this happened to others I had on my list and haven't seen for some time..

I often get flare-ups in my legs lately. They feel extremely hot. Like they were burning.

I can't remember if I had this kind of feeling with only fibromyalgia..

One example:

I was at the zoo with one of my friends and their kids on saturday. It was mostly sitting at the playground really. For about 4 hours.

I had the usual muscle aches I always have and a small headache but nothing major.

I was the whole friday lying in bed so I was able to go on Saturday.

Sunday felt quite normal.

Monday was awful. I was feeling more and more exhausted as the day went on. At noone I felt dizzy and light headed. It was like I really had to lay down somewhere.

And as soon as I was lying on the sofa I fell a sleep for over 2h. In the evening the leg burning starts. Then I felt like I got a cold.

Tuesday I felt like I was getting the flue. I had a really mild fever and I knew I had to take it slow but I couldn't. I had to take my kids from school and bring them to their Ballett classes.

After that I was so exhausted, everything hurts at ones. My legs were on fire and got worse at evening when I finally come to rest. Still mild fever.

Now is Wednesday and I not able to do a single thing.

I tried do make breakfast but my arms felt too weak to even hold a knife.

I can go to the toilet but have to lay down afterwards.

Do the muscles hurt under MEcfs? Or is my fibro getting worse? Is there something I can do to release the pain?

How long do your crashes last?

I didn't know I had ME/CFS since this year and was always told to push through so I did. But everything was getting worse and worse since last I wasn't able to do anything anymore. This was last november.

Now I tried to not overdo it anymore. Watch out for pacing but sometimes I still get crashes. I was an active person before and not being able to do anything is making me depressed.

I was finally starting to loose weight and loose 20 kilos last year. But know I can't do any exercising or I will end up in a crash.

I'm only mild I think, but I don't move that much as before. I walk like 40 minutes a day, to take my kids from school.

But I'm not able to cook or clean or do much more. I mostly lay on the sofa.

But with this, my weight is getting up again. I tried to figure out how much kcal I can eat without moving much and it's only like 1300kcal which is like nothing!

I cope with snacks and I feel like if I'm not able to eat chocolate any other day I get more depressed than I already am.

How do you guys manage this?

I don't want to lose all the effort it took to lose weight.

I never bought a ticket with real money but everyone there where new gachas I was able to get 1-5 for free. I can't remember where I got them from, weekly log in? Codes?

But ever since the cinematic event I wasn't able to get even one ticket.

Did you experience the same?