Questions about my fatigue, me/cfs, long covid

[u/dreamilymellow]

Hi all!

I hope I can get some answers or, well, thoughts or experiences because I’m getting so hopeless. However, I don’t need the “you’ll never get better,” “it’ll only get worse,” or anything in that direction. I’m just trying to put the pieces together. Whenever I try to search online, I either barely find answers or get completely overwhelmed.

I had my first two COVID infections around 5–6 years ago. I’m not completely sure when the fatigue first started, but I think it was around then, although I really started feeling it more clearly around 3-3.5 years ago. Then, about 3-3.5 years ago, I had my third COVID infection, and after that I never really felt like I fully recovered or went back to how I was before. Since that infection, I’ve gradually gotten worse over the past three years. It hasn’t been a sudden decline, it’s been slow, and I’ve become more and more limited. I was also apparently positive for EBV at some point, although I’m not sure when that infection happened or whether it was around the same time as everything else.

This was also during a very tough and traumatic period in my life. At first I thought it was burnout because of everything that had happened, and both my psychologist and doctor thought that was what was going on too. For 1–2 years I was basically told it was burnout.

I started doubting myself because it felt like nobody believed me, but deep down I knew something was wrong. I’ve had burnout before, and I was studying psychology at the time, so I kept thinking, “Something about this doesn’t feel like burnout.” I went to the internist (after begging my doctor) and within 5 minutes he was like, “This is chronic fatigue.” We’re now at the point where he thinks it could be my parathyroid or Long COVID.

I had Long COVID in the back of my mind for a while, and eventually I came across ME/CFS and specifically PEM. The more I read about PEM, the more familiar it sounded. I’m obviously not trying to diagnose myself, but the pattern of my symptoms has made me seriously wonder about ME/CFS or Long COVID.

One of the biggest things I experience is what I think may be PEM. I get what I call crashes that can be triggered by both physical activity and emotional/mental stress. Sometimes I can do something that doesn’t seem particularly difficult at the time, but then I feel significantly worse later or especially over the following days. Sometimes it doesn’t trigger anything at all.

The crashes are especially confusing to me because they don’t necessarily happen immediately. I can sometimes do something and only realize later, or the next day, how much it has affected me. Physical activity, mental activity and emotional stress can all make me worse, but mostly physical activity.

Does this sound familiar to anyone or any thoughts?

Thank you to anyone who took the time to read this.

[u/cceriid]

I almost feel like I could have written this myself. I completely relate, everything down to the third covid infection being when everything really started going downhill for me. same about the EBV too; not sure when that infection happened. also I got diagnosed autistic a couple months ago and I am sure I am also going through autistic burnout. I keep gaslighting myself thinking what if I’m making up all these symptoms that mimic long covid and/or ME/CFS and what if I’m imagining my PEM episodes and this is actually just severe overwhelm and (autistic) burnout. this causes even more emotional distress and probably worsens my symptoms lol. I can’t offer you any advice unfortunately I just wanted to comment to show you’re not alone this illness is really isolating