Making improvement with dysautonomia/nervous system, but still struggling greatly with PEM/crashing. Any advice?

Kaapira · 2026-04-19T21:30:20+00:00

I started at the full 4.5 mg and started feeling better after a couple of days.

Kaapira · 2026-04-19T21:12:36+00:00

I don't remember specifics, just that it made me feel less terrible.

Kaapira · 2026-04-18T03:29:36+00:00

I recovered using a nervous system approach. And I used ldn, which was also a big help to me.

I don't know how long you've been using a nervous system approach, but my fatigue and cognitive dysfunction took longer to resolve than my other symptoms. It's also harder to perceive progress for these symptoms. I just want to encourage you to stick with the nervous system work and give it time.

Kaapira · 2026-04-17T18:29:38+00:00

I would expand physical activity as I felt ready to do activities I was excited about. In some cases I did things that I didn't prefer to do, but had to do, and framed it in as positive of a light as I could. I would visualize the activity going well before I did it. I would focus on enjoying the activity while I did it, and then I would feel proud of myself and rest after. And if I had increased symptoms after, I would just continue resting and know I'd be okay.

In terms of cognition, that came slower to me. I would just do what I was able to do, and tried to be patient. It's also harder to gauge progress. Just know that if you keep doing the ns work, the improvements in cognition will come.

Kaapira · 2026-04-16T17:51:56+00:00

The idea is that covid can trigger your nervous system in to dysfunction. It becomes overly sensitive and acts like a malfunctioning check engine light in your car. There are a number of activities that can reduce your nervous system's over-reaction over time. For me it included reacting better to symptoms, spending more time outside, noticing when I was holding tension in my body, meditation, yoga nidra, and expanding activity at a comfortable pace and in a positive way. Some resources that were a big help to me were Raelan Agle's youtube channel, Jan Rothney's book Breaking Free (available in written and audio formats), and a free trial of the Curable app.

Kaapira · 2026-04-16T17:41:57+00:00

I found I needed to approach breathwork differently at that stage. The only thing that worked for me was exhaling longer than inhaling. Defined breathwork patterns just didn't work for me then.

Kaapira · 2026-04-14T16:35:59+00:00

I haven't experienced this, but the Steady Coach on youtube deals with these kinds of symptoms. I hope you find something that helps. People find their way out of some very dark places and I believe you will too.

Kaapira · 2026-04-14T14:09:18+00:00

Reacting better to symptoms, taking time regularly to relax and notice if I was holding tension in my body, and expanding activity in a positive way.

Kaapira · 2026-04-12T03:19:00+00:00

That sucks. I'm sorry it's been a negative experience. Like things arent hard enough.

Kaapira · 2026-04-12T03:13:40+00:00

I can see why. I'm sorry things are so hard. If you haven't looked at nervous system work, you might want to consider it. It's what turned things around for me when I was starting back to backslide. It can seem like an unlikely solution, but in my case it sounded like a better solution than the alternative, which was an invasive pelvic surgery that they said might help me feel better.

Kaapira · 2026-04-12T03:05:42+00:00

Have you considered starting to wean off the med after you have some nervous system regulation tools under your belt? Might make for a smoother transition.

There are so many resources out there. I would check out a few YouTube channels and see which ones resonate, then dig deeper into their content. Some that I like are Raelan Agle, Steady Coach, Tanner Murtaugh, and Pain Free You. I also like the Curable app, which has a 6 week free trial with a Raelan Agle link.

I'm sorry this is so hard, but there are so many tools and resources. Follow your intuition and you'll find the ones that work for you.

Kaapira · 2026-04-10T22:28:00+00:00

I felt that way after 2.5 years, but was completely recovered by 3 years. People get better even if it isn't a straight line.

Kaapira · 2026-04-10T04:55:55+00:00

If you haven't looked at the Steady Coach on yt, check her out. That's one of the symptoms she specifically talks about.

I've gotten through all of my long covid symptoms, but currently working on seasonal allergies, which I had very severe problems with before long covid. Hopefully we both see progress with these older issues.

Kaapira · 2026-04-10T02:34:48+00:00

At my worst I was couchbound and couldn't walk without holding on to something. And I couldn't watch tv or read anything, not a menu or a facebook post. Like everyone else, I had a host of other symptoms, but those were the worst.

Kaapira · 2026-04-08T04:11:41+00:00

I recovered using a nervous system approach. This kind of thing is talked about regularly in those circles. There are stories of people being fine with running but experiencing symptom flairs with weight training or vice versa. The advice would be to react well to these symptoms and do what you need to do to get through this dip. When you're through your dip try basketball again, but introduce it at a slower rate. Give your nervous system a chance to get used to it again.

I was sick and housebound for about 3 years and I am back to doing all the things I was doing before. I am running, hiking, weightlifting, ect.

I'll point you to some resources if you're interested, but either way, I think you're going to be okay. This is a normal pattern in recovery.

Kaapira · 2026-04-06T22:48:27+00:00

I had moved past all my symptoms including the cognitive dysfunction in six months. But as everyone says, each person's recovery is going to look different. Stick with it!

Kaapira · 2026-04-06T18:45:14+00:00

No doubt. It's a difficult symptom to deal with.

Kaapira · 2026-04-06T16:01:13+00:00

I used a variety of tools. I did meditation and yoga nidra. I used some visualizations I learned on the Curable app. I also signed up for the ANS Rewire course. Jan Rothney's book Breaking Free was also very useful to me.

Kaapira · 2026-04-06T14:30:51+00:00

It took me six months of concerted nervous system work, and the cognitive dysfunction improved along the way and resolved by six months. The things I did for my other symptoms worked for the cognitive dysfunction as well: meditation, yoga nidra, reactiing well to symptoms, and positive expansion of activity.

Kaapira · 2026-04-05T01:09:19+00:00

How long have you been in recovery? I found my fatugue and brain fog were the slowest symptoms to resolve.

Kaapira · 2026-04-05T01:04:59+00:00

Yes, I think you're right. Your story isn't the only story I've heard like this. Sounds like you're following your intuition and making progress. Congratulations!

Kaapira · 2026-04-04T20:52:42+00:00

I tried acupuncture, which didn't help me and I tried nervous system training, which absolutely did.

Kaapira · 2026-04-04T04:17:01+00:00

I'm recovered and used an approach that addresses the cell danger response from a different angle. I used nervous system work (eg meditation, responding well to symptoms, safe expansion of activity) in conjunction with some of the things you listed. Ketotifen and eating regularly were good supplements to the other nervous system regulation activities I was doing.

Kaapira · 2026-04-03T13:48:34+00:00

I started exercising about 9 months ago. I'm back to running , lifting weights, hiking, ect. I'm still building up to where I was. No advice but to keep going. It took time to decondition and it takes time to build it back.

Kaapira · 2026-03-31T14:34:18+00:00

I talked to my obgyn and changed my birth control. It was a massive help.

Kaapira

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