katabasis
Senior Member
- Messages
- 178
I've been hanging out on the border between moderate and severe for a couple of years now. Usually, I would experience crashes/PEM mostly due to physical activity, like having to go to a doctor's office, or having to do a bunch of food prep for myself (such as if my girlfriend who I live was sick or something and couldn't do it). And these crashes would mostly consist of physical symptoms - extreme physical fatigue, severe muscle and joint pain, some cardiovascular symptoms like hypotension and/or palpitations, etc. I've sort of gotten used to this paradigm, and obviously it's best to avoid crashing as much as possible, but I've at least learned how to manage the crashes effectively - e.g. taking gabapentin before exertion helps quite a bit, and after the fact, extra magnesium, citrate salt, CoQ10 megadoses, and skullcap seem to improve recovery. It had become rare for a crash to last more than a week for me, usually just a couple days.
But now I've gone and screwed up. About three weeks ago I tried to do a little writing, actual looking-at-the-screen writing for a couple of hours, instead of the speech to text software I manage to work with most of the time. Didn't feel too bad, so I did it again the next day. And since then, I've been in a severe crash, except it's distinctly different - almost entirely mental. I have almost no impairment in my small daily physical tasks - I can still make myself oatmeal for breakfast, feed the dog, take a shower (using a shower stool), etc., and doing these tasks doesn't feel any worse than it did at my usual baseline - nor do they exacerbate any symptoms. But anything that requires mental effort has become pretty rough. I've also gotten a ton more sensory sensitivity - looking at a screen for more than a few minutes makes my eyes feel deeply uncomfortable, and it's hard to ignore background noises I wouldn't even normally be conscious of. Oddly, there do seem to be periods of relative remission from these symptoms (I'm in one right now), but they only last for like half an hour and the symptoms don't go away entirely - maybe 50% less.
To start with, I'm curious how many of you have experienced really distinct physical vs. mental PEM states, and what the general vibe of those states have been like. I'm obviously also curious if people have found any supplements or treatments they have found particularly effective for mental PEM vs physical PEM. Also. I should note that this mental PEM is probably distinct from brain fog - I experience pretty bad brain fog at baseline, but it doesn't feel bad to push through the way PEM does, it's just a general downgrade in mental capacity without any exertional consequences.
I'm wondering whether maybe some of this mental PEM is actually tied in with eye fatigue (which perhaps is technically more a physical thing). This would explain the visual sensitivity, and I feel like I tend to move my eyes a lot when I am thinking, regardless of whether I'm actually looking at something. I actually find it rather hard to stop moving my eyes entirely, even when completely resting, the movements are almost involuntary. I have been experiencing a dull eye pain, on top of all this, but in total, it's hard to say whether this is part of the root cause or whether it's just another symptom.
I've been trying a few new brain-focused treatments over the past week to try to handle this. Haven't noticed much from quercetin/luteolin for potential mast cell issues (note that I had to stop taking ketotifen a while back, long before this mental PEM episode). Clonazepam does seem to help, but only very, very slightly - it's weird, I seem to barely notice any mental effect from it at all. It does help me sleep longer, which is nice. Dextromethorphan didn't seem to have any effect, positive or negative. I dug out my old tub of ribose, which never did much for my physical PEM, and it only seemed to make me more irritable/sensorily sensitive.
This whole situation is super frustrating - I would much rather experience prolonged physical PEM. I've gotten real good at tolerating physical discomfort, so long as I can watch movies and listen to music to keep my attention off of it. After all these years, I felt like I had sort of vaguely figured out how to live with that sort of thing. I had reached a cautious detente with my condition, but now the terms have suddenly changed. And I have no idea how long this will last - could be forever, for all I know. Thanks for reading.
But now I've gone and screwed up. About three weeks ago I tried to do a little writing, actual looking-at-the-screen writing for a couple of hours, instead of the speech to text software I manage to work with most of the time. Didn't feel too bad, so I did it again the next day. And since then, I've been in a severe crash, except it's distinctly different - almost entirely mental. I have almost no impairment in my small daily physical tasks - I can still make myself oatmeal for breakfast, feed the dog, take a shower (using a shower stool), etc., and doing these tasks doesn't feel any worse than it did at my usual baseline - nor do they exacerbate any symptoms. But anything that requires mental effort has become pretty rough. I've also gotten a ton more sensory sensitivity - looking at a screen for more than a few minutes makes my eyes feel deeply uncomfortable, and it's hard to ignore background noises I wouldn't even normally be conscious of. Oddly, there do seem to be periods of relative remission from these symptoms (I'm in one right now), but they only last for like half an hour and the symptoms don't go away entirely - maybe 50% less.
To start with, I'm curious how many of you have experienced really distinct physical vs. mental PEM states, and what the general vibe of those states have been like. I'm obviously also curious if people have found any supplements or treatments they have found particularly effective for mental PEM vs physical PEM. Also. I should note that this mental PEM is probably distinct from brain fog - I experience pretty bad brain fog at baseline, but it doesn't feel bad to push through the way PEM does, it's just a general downgrade in mental capacity without any exertional consequences.
I'm wondering whether maybe some of this mental PEM is actually tied in with eye fatigue (which perhaps is technically more a physical thing). This would explain the visual sensitivity, and I feel like I tend to move my eyes a lot when I am thinking, regardless of whether I'm actually looking at something. I actually find it rather hard to stop moving my eyes entirely, even when completely resting, the movements are almost involuntary. I have been experiencing a dull eye pain, on top of all this, but in total, it's hard to say whether this is part of the root cause or whether it's just another symptom.
I've been trying a few new brain-focused treatments over the past week to try to handle this. Haven't noticed much from quercetin/luteolin for potential mast cell issues (note that I had to stop taking ketotifen a while back, long before this mental PEM episode). Clonazepam does seem to help, but only very, very slightly - it's weird, I seem to barely notice any mental effect from it at all. It does help me sleep longer, which is nice. Dextromethorphan didn't seem to have any effect, positive or negative. I dug out my old tub of ribose, which never did much for my physical PEM, and it only seemed to make me more irritable/sensorily sensitive.
This whole situation is super frustrating - I would much rather experience prolonged physical PEM. I've gotten real good at tolerating physical discomfort, so long as I can watch movies and listen to music to keep my attention off of it. After all these years, I felt like I had sort of vaguely figured out how to live with that sort of thing. I had reached a cautious detente with my condition, but now the terms have suddenly changed. And I have no idea how long this will last - could be forever, for all I know. Thanks for reading.
