What PEM is like at relatively high physical function

I improved significantly in the last year and I have much less PEM, and when I do it's milder and different. I'm also physically fitter than before. PEM now feels primarily like a brain problem. Exertion triggers some kind of bad response or problem in the brain. This seems to happen within hours, but it doesn't peak until later.

Also, spending too much time upright continues to be a problem. It's much more stressful than say, riding a bike. Luckily I can use a bike to get around.

 

My PEM always felt like a brain problem. I'd been wondering whether I still got PEM from cognitive exertion, but the last couple of trips to town, with stressful slippery driving conditions and where I had to interact even briefly with people, resulted in feeling PEM-like the next day, so I think I have to accept that it is PEM.

 

Yes, mine's always been the same too. Oddly, the severity of PEM symptoms doesn't change nearly as much as the threshold for triggering them.

 

Before I became fully bedbound, my PEM was more typical, for maybe about 10 years - flu-ish feeling, like I was running a fever but with a normal temperature, crushing fatigue and brain fog, sore throat and headaches.

Becoming bedbound was horrific - I'd never had dysautonomia symptoms before, but suddenly my heart rate was 150 lying down, blood pressure sky high, whole body convulsing, terrible tinnitus and sound and light sensitivity, absolute inability to sleep no matter how many sedatives I took, alternating chills and overheating, inability to speak or chew.

Since then, my main symptom has been shaking of various muscles and insomnia. I basically stopped getting the typical PEM symptoms at that point. The threshold kept falling - so eventually I was unable to lay on my side at all because it would make my back and tongue start shaking wildly; I feel as though getting to that point puts me in a state of constantly, slowly getting worse. Like there's a feedback loop or something happening.

I've noticed that once I develop a new type of shaking, it doesn't go away (barring the strange and miraculous improvements I had after each one of my suicide attempts, the first lasting about a month and the second one about 5 months. Those seemed to wipe the slate clean until something triggered another relapse.)

 

Same here. Transitioning from moderate (flu-like malaise PEM) to severe (extreme dysautonomia) was a terrifying experience. It occurred rather suddenly too, which made me think I was dying.

 

The intensity of delayed PEM is only affected by how much I go over my energy limit. Whether I'm 'mild' or 'moderated' doesn't make any difference.

My cognitive impairment only started after exercising again in the earlier years.

 

Interesting! Did your dysautonomia persist throughout being severe? I found once I was hospitalised and given liquid nutrition and bedpans, the heart rate and blood pressure stuff settled after about a month (so it had been about 3 months of extreme dysautonomia). Everything was stable until I had a major deterioration about 8 months later - and then stable again between two more deteriorations 6 months apart, so I'm starting to see it as the first thing that goes majorly wrong in whatever the process of getting worse entails.

The other thing that seems to only occur while getting worse is myoclonus, which can be quite severe for me - like my whole body jerks up into the air like a fish from the water. It's a bad sign if it's happening at night, even worse if it's happening in the day.

I feel quite powerless and hopeless when faced with these symptoms. Once they start I'm rarely successful at getting them to go away, and it just becomes part of my daily (terrifying) suffering.

 

man the myoclonic jerks are horrible its like being possessed or something! i hate them.
interesting you say it happened getting worse because i had periods of having them, & then they disappear completely, my decline has been so gradual as to only notice in hindsight. I only get the shaking in very bad PEM, but it is scary huh, i always think "oh shit, i am in proper trouble now!" never had tongue shaking that must be vile. So sorry you are so very bad Horton

 

I can't do tasks because you simply don't have the energy. I try to start things, but tell myself I will rest a few minutes first, and then hours pass. (Often, time seems to pass quickly.) You have the motivation and drive for things but just can't start them or stay on track. However, you don't always feel tired or awful, which leads you to attempt or plan more than you're capable of. Doing the smallest task that requires effort or concentration requires substantial motivation. Mental and physical PEM are distinct. Physical PEM makes me very debilitated, but I feel emotionally well, except for distress at being unable to do stuff. Physical PEM is less scary because it is less distressing, the duration is somewhat predictable and recovery is sudden. Mental PEM is worse, because I feel overloaded to the point of extreme discomfort. It feels like I'm frying my brain. I can get irritable or moody. I just want to rest, and depression and demotivation may occur. Recovery is more unpredictable and gradual.

PEM doesn't last long, from 12 hours for minor triggers (e.g. walking up hills) to 2-3 days for major triggers (intense exercise) and 4-5 days for
extreme events (traveling). Despite a smaller number of symptoms, PEM is highly debilitating. You may do some things, some of the time, but you can't sustain consistent levels of exertion, making planning and routines futile. Its effect on my overall quality of life and emotional wellbeing is severe.