u/AliveCalligrapher171

Hi all - please let me know if this is not the right space to bring these concerns. I am not sure on the rules around CFS specifically, and it may be that this space is reserved for discussion by people who have met the criteria for CFS, or at the very least been on this journey longer than me. If so I'm more than happy to take it down - I think having a space where a shared specific experience can be discussed is important and I don't want to disrespect that in any way.

I had a viral illness I first came down with 1 month ago from which I am suffering extended fatigue. I was very ill, worked very hard to entirely ignore all the signals my body was giving me to rest because I was away from home during my illness and sleeping in a tent, and had quite a traumatic experience of being unwell. I was probably the most ill I have ever been. I began making a recovery which stalled about 2.5 weeks ago, and I have not been able to get over the profound fatigue since. I am not bedridden, and my case is not severe, but I have not been able to work at all because I can't manage the bus journey or the social interactions of the workplace. I do feel like I have been experiencing PEM as a part of this, having a good day or two in a row and then the next couple of days barely functioning.

I know my own body and mind well, having suffered with anxiety which has left me unable to leave my house in the past. This experience is definitely different - the fatigue is new - but it is also very familiar. I was immediately drawn to understanding my fatigue as in part influenced by my predisposition to anxiety, and by how traumatic I found being so ill while away from my support network.

My question is if anyone has come across advice on how to address the nervous system this early on in the process. I understand that only one month in, my body is probably still doing some real work to heal after the virus, and I am keen to respect that. I understand that until I'm 12 weeks in, I'm considered within the normal range of post viral fatigue. I am also really conscious that I can already feel myself trying to make my life smaller in order increase certainty, panicking about whether I will be ill forever, not knowing whether I should be treating the PEM or not. Has anyone managed to turn things around this early on? If you were me, what advice would you give yourself to try and avoid spiralling? Is there a way to try and disrupt some of the more harmful behaviour early on?

Hi folks, I am fairly newly experiencing some post viral fatigue following a viral illness. I first had symptoms 27 days ago, did the worst possible thing and did a lot of very physical activity during my early symptoms, and got very sick. My doctor thought it might have been flu, but it also could have been covid. Had the worst fevers I've ever had in my life. Anyway, I initially began recovering as normal, but cannot shift this fatigue. I am not bed bound but for about 2 weeks now I have not been able to do much more than a 10 minute walk around my neighbourhood without crashing hard. I've been off work for the duration.

Something I am noticing is that since my appetite came back, I get very very hungry, like a deep hunger. Worse, if I fail to eat every 2-3 hours, I have a really horrible spike in symptoms. Heart starts racing, sweating, feel like I'll pass out, big waves of fatigue, often a headache. I just wondered if anyone else is experiencing this? I am learning to just keep snacks on me to ward off a crash, but I'm already a little overweight so not crazy about how all the inactivity and constant snacking is affecting me. Did anyone else find this symptom alleviated as they recovered, if they have recovered? Thanks all and solidarity in this difficult illness - so many people in this sub are exceptionally brave and kind and I am very grateful to have a community to talk to.

Hi all, looking for some ideally positive but mostly just honest stories if you suffered with some post viral fatigue after the flu. I'm in the UK for reference.

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I got sick about 23 days ago. I was on my way to work at a music festival, had fairly sudden onset body aches and chills on the way, but stupidly decided I'd be fine. I tried to do the work I was there to do, and obviously eventually had to give up. I was sleeping in a tent among other festival goers so obviously did not get any decent rest while I was there for 4 nights. I had a fever every day, one day so intense I had to go the medical tent, where they advised it was probably flu but there was nothing they could do except give me more paracetamol and advise me to rest. I later developed a very wet cough.

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Fast forward to today, fever lasted a couple more days after I got home, very slowly began to feel more normal about 10 days in, appetite coming back, derealisation fading etc. Around this stage I started to experience terrible fatigue. I was sleeping 12 hours a night and then needing a nap after lunch. The fatigue lifted somewhat, so I could manage to maybe take a 10 minute walk, with breaks, and cook one meal plus maybe do the dishes. That's it, rest of the day laid up. I also developed pretty bad insomnia at this stage, I suspect because spending all day indoors on my phone not exercising has been terrible for my mental health.

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The dial hasn't really moved since then. If I get less than 10 hours sleep I feel terrible. If I try to increase my level of activity, I crash and have to spend the whole next day in bed. I haven't worked for 3 weeks - fortunately I have a very generous sick policy so I am ok on that front, but its taking a huge toll on my mental health. I haven't seen friends in weeks, Im very frightened that this is going to go on for months, my anxiety is through the roof.

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I would really love to hear from others who have been through the same - your advice, positive stories, etc. Especially I'd love to hear if you had a similar experience and made a full recovery! And my love to you if you have been in the same position, it sucks.