u/Original_Name3690

I do have some positive changes and am hopeful there wil be more. That’s why I try to start this Reddit. (One is no more medication, only for shortcomings based on blood tests). Now I have slept normal for almost a week in five years of lc. Feeling so much more energy is coming back. My head feels on the one site much better but still problems with long and short memory. But at the same time I’m feel like I’m myself again, how I was five years ago. But the hardest part now is so weird: I have absolutely no condition. Can’t walk far. Dit better with medication but it’s time to try and test what I’m capable of and what I can handle. I’m so curios if anyone can relate to my short explanation.

I lost too much weight in two weeks. I can't stand smells, especially the smell of food. I just got a craving for salmon on toast with a Twix on top 🙈. In the evening, I manage four bites of dinner and that’s it.

I was on my way to sleep less, during the day, and less because of the lc, now I’m back to sleep half the day or more. And thank to medicine I sleep normally at night.

The PEM is worse than ever. The doctor said to rest completely for six weeks. I think it’s could be a lot longer. Lc is such strange condition.

During my week in hospital, I have had a few extreme crashes. When the nurses came in in the morning and asked me if I have slept well. I said yes pretty good. So they take me out of bed for walks in the hallway or practice sitting on the table for breakfast. After that I totally crashed. I started to explain to every one that came in (day doctors and specialists that do there checks etc..). That a good night of sleep isn’t a code for having an normal day. That I still can crash after being awake for just half an hour or a bit longer, and sleep for another three or four hours. I find it so strange that that’s not a known fact in the hospitals.

Thank you all for your time to reed my thoughts. I curious how people with lc recover after a huge surgery. Is it temporary or are starting over like I feel I do.

With normal day to day activities for my administration I mess up a lot numbers, dates etc. I can’t concentrate anymore. But before it was part of my job to be the most hyper focused person in the company. It’s all gone now. Its so weird, every time my hb need to correct my admin.. and does anyone know how to fix this?

To add:
I’m in my sixth year of lc. And my medication is Amitriptyline (and it works well for all kinds of nurve pain, headaches and I sleep much better and longer) and drinking al lot of water. The weird feeling of brain fog is long gone. But this is still here.

Question for anyone but especially for those in Europe. We recently had an horrible heatwave and the next one is coming in a day of ten or less.
Now my thing is this, during the heatwave I have taken everything slowly and didn’t do anything much. It was difficult and challenging but got through it. But now after I get heavy headaches and very sore muscles in my legs and hips. Hard to explain but it’s like my whole body is just sore and tired but I feel like I’m in an blender or something. Can get any grip on my symptoms and my normal way of getting through the day isn’t working. Does anyone else feel like this?

(I have asthma and lc to so it might not only costs by fibromyalgia, but probably most of it. The only thing I think is lc; I can’t really eat much food because I can’t stand any smell).

Reaction for all of you:
So many people respond to this so quickly. Thank you for sharing and I hope you find a way to the heat now and in the next heatwave(‘s). Wishing everyone well soon. And a virtual
hug from me too you all from The Netherlands.

I think I have read it somewhere on this Reddit before, but not sure. We have a heatwave and ever since I got the feeling of ants under my skin. It also feels like a small fly or something like that is on your skin. Is that a fibro thing or just something of the heatwave? It’s so annoying.

After five years of long covid I still have huge problems with smell but more importantly with taste of food. A sandwich cheese and cucumber tastes like fish? Same with marmite On any hing. Is there any way to get my normal taste back? I hope to find some ways here that can help? Thanks in advance.

Does anyone else have this problem with restless legs, but I have it all over. Once in a while it comes back. This night I can’t and won’t sleep because of this. My resent blood tests where al good. Tomorrow I will have some magnesium. That’s all what I can think of right now. Any tips for me are welcome. I can stand this feeling anymore.