u/KlutzyTemperature439

Just wanted to throw some hope out there for others, as I know how horrifying my life and outlook were 18 months ago.

Long story short, I developed PEM type of long covid in March of 2025. Truly, it was a living hell. There was a day when my wife had to come home from work because I was slumped over on our couch basically unable to move- total weakness, fatigued muscles. Horror.

From there I experienced many more days of hell- mostly cyclical reruns of exertion, poisoned muscle ceiling, horrifying PEM for week plus, DOMS, reset. Over and over again. At one family dinner during a terrible PEM cycle, I almost went to the hospital, again slumping over in my chair. Just hell.

I am lucky in that people at my work had some idea of what I was going through and were fairly sympathetic. Nonetheless, it derailed my work life pretty hard. There was stretches I was off for 3 weeks in a row. Obviously my social life went to zero, and my wife had to do everything for us and the kids. It was terrible.

I did a very careful exercise routine, and by exercise I mean like just doing some normal life stuff. I would go through the PEM cycles and each time I would get a tiny bit more resilient.

Each time I got sick with a household cold virus, it would set back my progress and my exertional ceiling.

Then about 8-9 months in….. I got shingles. It was horrifying. Nonetheless, this seemed to in some ways reset my immune system or something. All of my flat warts I had on my arm for years cleared up after. And then once I reached decent recovery, I could tell there was some hope with the way I felt.

Well then, at about month 14 or so, it seems as though my body’s ability to run on aerobic respiration, oxidative phosphorylation, finally clicked. Like I jumped over the threshold or something. At this point, PEM from exertion just didn’t happen anymore. Just went away. Now, what I did still experience was almost like a spasming of my muscles if I used them in a high intensity short burst type of way (type 2 fast twitch fibers). That slowly got better over time. Also what I did experience very roughly was just very intense delayed onset muscle soreness (DOMS). For instance, a day cleaning the garage or trimming the yard would make me feel like I just did a whole day of intense body building at the gym. This also slowly got better.

I would say I am about 90% now, and will consider myself 95-100% once I reach the fitness levels I was at prior to my illness.

Famotidine and loratidine seemed to help me- I took these since I suspected mast cell activation syndrome (MCAS) was playing a role. Also, to help my muscles and mitochondria, I stay up on my vitamin C for anti inflammatory reasons, and also keep up on my protein through eating meat and protein shakes.

TL;DR: I had long covid for 18 months, I’m not 90% recovered after thinking I was doomed for life. AMA.

For people recovered or far along in their LC, I’m trying to figure out where my progression goes from here. 1.5 years in. A lot of false recoveries, a lot of set backs from basic viral illnesses, shingles, a lot of hell. But for the past 5 months, my body has seemingly moved past the PEM phase.

After activity/exertion, I used to get 1) exertional ceiling and jello muscle feeling, 2) PEM next day for up to 10 days, 3) DOMS for 3-5 days, 4) recovery from the cycle. Then I’d repeat that process over and over and over again.

Well now, I don’t get exertional ceiling or PEM anymore. No more jello muscle failure. I thank god for this.

But I do in fact still get DOMS. So yesterday, big day- did a bunch of yard work and went really hard. Now today I have soreness throughout my body, highest in the muscles I used most.

I suppose this is just the next stage of metabolic capacity recovery. But I’d like to hear from you guys who are wiser than me, of what my body is actually doing and experiencing at this stage, how I can help it, and what comes after this.

I live at 1,000 ft elevation. I have to go to Denver for business soon and am really worried if I’ll do okay in the higher altitude.

My recovery is going decent. I have the PEM version of long covid. 14 months in now, and the actually PEM I used to experience after exertion has now stopped, I now experiences DOMS (delayed onset muscles soreness) instead. That’s been much more manageable for me than dealing with the poisoned muscle feeling of PEM for days after exertion.

Nonetheless, I am very anxious about this trip and what the lower oxygen could/will do to me. Anyone have any similar experience?