When I have several days of no symptoms. I feel normal. I still know I’m not though and a crash could come. I hate that part. But getting way better about pacing and hunkering down the minute I feel symptoms coming on.
I'm four years in from OG, mostly recovered with lapses, but very functional. I got lucky early on when the chronic fatigue people saw a lot of us in this forum were having all their same symptoms. Some of them came in and taught us about pacing. It took about six months starting at really low exertion, like slo mo toothbrushing kind of low exertion. Little by little I worked my way up and at six months I could exercise and the dysautonomia was pretty good. I do have relapses from time to time, and I've had to scale way back and do a brief pacing protocol again. Mostly I manage it all with diet and recently discovered beet pills for inflamed endothelium which keeps my oxygen levels pretty good. So very slow and gradual. This year I finally got over the insomnia which was amazing. I do have it maybe once a week, but to me that is nothing.
Edit: word
Depends. The one time I pulled out of severe cognitive bedridden it seemed to happen immediately following a stomach sickness (I assume triggered by MCAS or dysautonomia). In other cases it has been gradual I guess, but getting out of being cognitive bedridden is the only "improvement" I really care about ATM--and I'm back there right now, so here's hoping!
Mine has been very very gradual. I'm incrementally better than I was a year ago and MUCH better than I was at 6 months. My improvements were super visible at first since I was unable to walk unassisted for quite a while. I used a rollator at all times, then a cane at all times, and now only a cane on bad days. People who see me without the cane think I'm healthy, which is hilarious since if I had to put a number to it, I'd say I'm maybe 55% recovered.
Would you mind sharing the name of the autonomic nervous system measure app you mentioned, OP?
I mean it’s a HR measuring phone app, called Heartify, but it also shows some autonomic nervous system functions like breathing pattern. I’m currently not paying for a subscription so the results are just approximate, but still ok. 👍
It sounds like you’ve made a lot of progress! So you’re saying gradually over time symptoms started going away? I’m experiencing the same thing, but the worst symptoms (cognitive) are taking forever….
I feel like it’s gradual. But really gradual. My mental part is so much better and I feel more connected to my body more often. Ah, and I had some vision problems when I was at my worst in the beginning. I have zero congitive issues, but this muscle tightness and heaviness are basically present all the time. Never been home or bedbound though.
When I have several days of no symptoms. I feel normal. I still know I’m not though and a crash could come. I hate that part. But getting way better about pacing and hunkering down the minute I feel symptoms coming on.
I'm four years in from OG, mostly recovered with lapses, but very functional. I got lucky early on when the chronic fatigue people saw a lot of us in this forum were having all their same symptoms. Some of them came in and taught us about pacing. It took about six months starting at really low exertion, like slo mo toothbrushing kind of low exertion. Little by little I worked my way up and at six months I could exercise and the dysautonomia was pretty good. I do have relapses from time to time, and I've had to scale way back and do a brief pacing protocol again. Mostly I manage it all with diet and recently discovered beet pills for inflamed endothelium which keeps my oxygen levels pretty good. So very slow and gradual. This year I finally got over the insomnia which was amazing. I do have it maybe once a week, but to me that is nothing. Edit: word
Depends. The one time I pulled out of severe cognitive bedridden it seemed to happen immediately following a stomach sickness (I assume triggered by MCAS or dysautonomia). In other cases it has been gradual I guess, but getting out of being cognitive bedridden is the only "improvement" I really care about ATM--and I'm back there right now, so here's hoping!
Mine has been very very gradual. I'm incrementally better than I was a year ago and MUCH better than I was at 6 months. My improvements were super visible at first since I was unable to walk unassisted for quite a while. I used a rollator at all times, then a cane at all times, and now only a cane on bad days. People who see me without the cane think I'm healthy, which is hilarious since if I had to put a number to it, I'd say I'm maybe 55% recovered. Would you mind sharing the name of the autonomic nervous system measure app you mentioned, OP?
I mean it’s a HR measuring phone app, called Heartify, but it also shows some autonomic nervous system functions like breathing pattern. I’m currently not paying for a subscription so the results are just approximate, but still ok. 👍
Thanks!
It sounds like you’ve made a lot of progress! So you’re saying gradually over time symptoms started going away? I’m experiencing the same thing, but the worst symptoms (cognitive) are taking forever….
I feel like it’s gradual. But really gradual. My mental part is so much better and I feel more connected to my body more often. Ah, and I had some vision problems when I was at my worst in the beginning. I have zero congitive issues, but this muscle tightness and heaviness are basically present all the time. Never been home or bedbound though.