My PEM seems to have changed its character from last year

I have decided that my postexertional malaise has changed compared to last year. There is less malaise and less of the feeling of overstimulation. Fatigue and weakness are the main symptoms now and are maybe even stronger than before. The effects on sleep, thinking and orthostatic tolerance seem unchanged.

What has changed compared to least year? The only thing that comes to mind is that my heart rate seems more normal.

Is it possible that the malaise / overstimulation component of PEM is especially related to processes that also affect the heart rate?

 

Over the years new symptoms have been added to my ME, and they now re-emerge during PEM. However when I am in a period of relative remission not all the symptoms reappear in every PEM episode.

I usually consider two options in relation to this variation,

1. how well overall am I managing my activity, does better management allow some spontaneously improvement, though I suspect the ceiling of any such improvement has gradually lowered over the course of the last 25+ years?
2. is there some variation in my underlying ME, that is in an hypothesised biomedical process [or processes] that is [or are] up stream of all my presenting symptoms? (Presumably this is what you are speculating about in relation to this thread @strategist .)

[added]

 

An other question I wonder about is there a hierarchy of symptoms, or even several hierarchies of symptoms. For example do some symptoms only appear if you already have other specific symptoms, in which case specific symptoms or symptom patterns may be indicative or associated with the severity of the underlying condition. Consequently variation in the underlying condition may reflect changes in symptoms seen.

When at my worst most symptoms are continuously present, but when not so bad most symptoms may only appear when in PEM, though this might be explained by ‘being at my worst’ really meaning ‘in continuous PEM’.

Answering these types of question is part of what I keep referring to as ‘the natural history of ME’, we do not yet even have an adequate description of the symptomatology of ME. I guess in part in the UK this arises because so few of those supposedly treating ME have much interest in actually listening to the patients or actually knowing what it is.

I think it would be interesting and perhaps helpful to have a full list of possible symptoms, and to establish what patterns if any there are between individuals and within individuals over time.

 

I find that my experience of PEM can be altered when I need to adjust my daily dose of levothyroxine. This happens at least once a year - usually a couple of times.

If I need more then my heart rate is lower, fatigue will be more pronounced (for me fatigue is.a much more secondary symptom), background aches and pains will be worse. The excruciating PEM induced pain in muscles that have been used will be less because I am.less likely to overdo.

If I need less then the wired symptom is more pronounced, the background noise of muscle pain is reduced, HR goes up. I am more likely to trigger PEM & the delights that go along with it.

I don't know if this is relevant to you @strategist, for.me.the most marked differences occur depending on how well my hypothyroidism is managed & the switch from summer to winter.

 

I have found that over the years the nature of PEM has changed. During the severe years, any overexertion would result in flu like poisoned feeling, light sensitivity, worsening orthostatic symptoms, pain, increased heart rate, insomnia, a general feeling of overstimulation. Now it’s more like needing to sleep more, dizziness, tiredness, muscle weakness.

 

My PEM has remained the same until I developed autonomic impairment years later.

 

Yes that's my feeling as well. The impression is that there is an interaction between dysautonomia and PEM that affects the symptom profile of PEM.

 

My PEM has always been relatively mild these past 30 years. That all changed in April after having my first covid vaccine. It doesn't take much to set off my PEM these past few months. I just hope that this is a temporary situation.

 

Possibly related to this: I had a very substantial improvement for a few days. I was able to do strenuous physical activity for an hour or two (walking uphill for several kilometers in the summer heat). There was barely a next day worsening. There were some unpleasant orthostatic intolerance symptoms during the walk.

With a body that seemed to function much better than normally, I felt capable of taking on everything.

Then, several days later, one day after swimming (much less intense compared to the walk) I started having next day weakness again and walking uphill for 50 meters to buy groceries became unpleasant, climbing 10 stairs made leg muscles burn and lose strength. This shows again that deconditioning cannot possible explain what is going on.

 

I wasn't surprised to learn recently that POTS is now being referred to as 'deconditioning' too

The Dysautonomia folks posted a recent tweet highlighting an Olympic swimmer dx with POTS as not having 'deconditioning'.

 

My resting heart rate is elevated slightly when I'm in PEM (I alway get immune-type symptoms and overstimulation), going from around 55-56 to 60-62. Not a drastic difference, but the RHR increase often appears ahead of the PEM and serves as a useful signal to go straight into rest mode.

In my case, I haven't noticed any other HR differences.