Did your PEM change during your illness?

[fst]

I was wondering whether PEM is always the same for you, or whether it has changed significantly in duration, delay or character during the course of your illness. I imagine changes in PEM may track severity changes, or they may not.

I'll share my own experiences to illustrate what I mean.

In the short period of a few months when I was moderate, PEM was most noticeable.
When I overexerted, it felt like being out of breath, with aching muscles, but mostly overall miserable in that hard-to-pin-down way that is PEM. There was also a noticeable delay.

When I crashed to (very?) severe, it stayed the same at first. Sometimes it would hit me like a sledgehammer 24h after I did something, anything really, but more and more often it would also start right away.

Now I've been slowly improving, though still severe, and I have not had this feeling of getting "hit hard" for a while. When I do more than is good for me, I will notice that I am probably in PEM after a few days. Maybe I just learned to manage my illness better and avoid the most glaring overexertions. But I feel that things have gotten much more fuzzy. I haven't had clear, delayed PEM in months.

So I summary, when I was moderate and then almost very severe, PEM was clearer than now on the lighter end of severe.

Maybe the bad PEM was preceding my becoming severe? Or maybe it just showed that I was living beyond my means. Or maybe I am in constant PEM now, so I don't notice it clearly anymore (but why the improvements then?)

Thus, I was wondering whether you have had similar experiences, mostly out of curiosity, and hoping that maybe someone will find it interesting.

 

[Rick Sanchez]

My PEM constantly got worse for 20 years as I got progressively more ill. Honestly barely noticed it in the beginning.

Now my PEM is getting better despite the fact that I am still progressively getting worse. Especially noticeable post social situations. 5 years ago many of these situations would have wrecked me for days.

Maybe it has something to do with my MECFS getting a lot more stable as I have gotten worse. Or maybe my brain is just so cooked I can't overexert myself as easily in social situations.

No idea though. Very odd.

 

[Varda]

Since becoming severe PEM is always accompanied by severe anxiety. When I was mild or moderate I had some anxiety during PEM but it was nowhere near as bad.

I also get smth which I can only describe as ”it hurts to think”. It’s the absolute worst, way worse than brain fog. It’s the single most horrific experience of my life. Never had that when I was mild.

 

[Peter T]

I was not aware of the concept of Post Exertional Malaise or the possibility of Orthostatic Intolerance or become aware of my food intolerances until some years into my ME so I am less confident of my retrospective interpretations of those first years. Only once I had stopped work and eliminated foods that I am intolerant of that patterns clearly emerged. However … … …

My first episodes of PEM involved a resumption of the original acute EBV infection (glandular fever) symptoms: headache, swollen glands, sore throat, pain radiating from the larger lymph nodes, IBS type symptoms, memory issues, reduced attention span including hold information involved in more complex problem solving or reading that required integrating information between sentences.

Following my second major relapse it involved PEM that had the normal onset delay, but could going on getting worse over days or weeks, before it started to ease, but with an overall decline over a number of years. Further over the years, particularly with subsequent relapses, new symptoms have been added to PEM and as my overall deterioration progressed could become permanent: including more marked OI, stronger sensory hypersensitivities, nausea, more severe cognitive issues, increased pain, particularly what I miss label chostochondritis. Also over time though not PEM related the number of food intolerances I have had has increased.

After I stopped work suddenly unexplained drops in mood or generalised anxiety seemed to be an aura for PEM, but faded when the PEM hit, though this seems now to have gone away. Though I still get a sore throat more generally swollen and painful glands have faded.

Since my last significant relapse about ten years ago I lost being able to read books. I only read a book if it seems particularly important and it can take me up to a year with much rereading to get through it. Though my reading has more recently improved to some extent, I am anxious about next year when my goddaughter’s first novel is published, as I will feel
I have to give an intelligent appreciation, even though she does know that in her life time I have gone from reading four or five books a week to virtually never reading a book.

Overall my pattern has been an increase of symptoms associated with PEM over the 30 years of my ME.

 

[AliceLily]

@fst I'm out at the moment but your description is how it has been for me over the 30 years from early ME to very severe, severe and now moderate. Same experience with PEM.

 

[fst]

Thank you @Rick Sanchez , @Varda, @AliceLily and @Peter T for sharing your experiences!

My PEM constantly got worse for 20 years as I got progressively more ill. Honestly barely noticed it in the beginning.

Now my PEM is getting better despite the fact that I am still progressively getting worse.

Sorry to hear that you are getting worse. Your experience with PEM sounds similar to my experience, albeit on a completely different timescale.

Since becoming severe PEM is always accompanied by severe anxiety. When I was mild or moderate I had some anxiety during PEM but it was nowhere near as bad.

I also noticed anxiety in PEM when at my worst. Luckily, this was one of the things that improved!

 

[Mij]

I can't differentiate what PEM is for me because I have different experiences with exhaustion/stiffness/and sore muscles with or w/o over exerting.

I can only confirm delayed PEM which has always been distinctive, same onset pattern, same symptoms, and same recovery period of 3-4 days for over 28 years. Delayed PEM can be more severe if I go way over my energy limit.

 

[NelliePledge]

I was undiagnosed for 10 years didn’t know I had ME then like Peter after diagnosis it took me some time to grasp what PEM is. I was prescribed amitryptiline and pregabalin around diagnosis both of which had a sedative effect and hangover so quite difficult to separate out symptoms and side effects. Plus I was trying to keep working then when I stopped working I still had a lot to do organising moving house to be closer to family.
It wasnt until 5 years after diagnosis that I was in a more controlled level of activity. In more recent times my PEM rarely include bad laryngitis that I used to get really regularly before diagnosis/early post diagnosis. Because I stopped the sedating medications my delayed sleeping pattern/insomnia in PEM is probably worse now and I’m more aware of flu like body aches. But i prefer that to the sedative hangover. When I have quiet days when I can go with my own “natural” sleeping schedule and limited activity the PEM goes away and pain etc goes down. I have more of those quiet days now. My severity of ME was mild while I was undiagnosed but then got worse to moderate which was when I was diagnosed. I’ve remained at moderate since. The worst PEMs ive had in recent years was when I had Covid and another virus that I picked up, also when I’ve had work done on my house getting up early and dealing with workmen for consecutive days.

 

[Sean]

Far as I can recall and judge, both the character and degree of PEM has remained the same for me the whole time. It has dampened down due to being able to better manage it all through simple hard earned experience.

But if I push myself too far it all starts coming back just the same and just as bad. All that has changed is that I am much better at spotting the early signs of it and knowing what to do to reduce it again, and generally know my limits so I am better at avoiding exacerbating it in the first place.

Besides the overall feeling of being sick and the main ME/CFS symptoms (fatigue, pain, neuro-sensory-cognitive, general malaise, etc), the specific symptoms I watch for are the changes in sweating patterns and hot & cold flushes, how strong they are, how widespread (in the case of sweating), and how quickly they kick in.

I cannot stress enough how this is essentially an experience based learning. I seriously doubt that this can taught, beyond providing newly diagnosed patients a basic description of PEM, particularly the delayed component, and advising them to just listen to their body and let it be the judge of how much they can do.