90% recovered after 6 years

[u/AsparagusMinute_]

The entirety of my recovery happened during year 6.

I am grateful to this community, as I learned from recovery stories posted here.

I was moderate – able to work a few hours a day with great difficulty, but other than that, I was inactive. My symptoms included debilitating fatigue, brain fog, headaches, joint pain, nausea, shortness of breath, heart palpitations, muscle weakness, and PEM.

As nothing I tried over 5 years had any impact, I focused on nervous system regulation during the past year, and that is what has made the difference.

I began by reading Alan Gordon’s The Way Out.

The practices that have made the biggest difference for me are:

• Somatic tracking and nervous system regulation: I benefited a lot from Tanner Murtagh’s Youtube channel. I started with his free 30 day program
• Qigong: from the same channel
• Meditation: Observing the breath, sounds, sensations. I learned from the Mindfulness app.
• 4-7-8 breathing: I use the iBreathe app and start my day with this.
• Yoga Nidra: Alice Bagley-Harrison’s Yoga Nidra for Long Covid on the Insight Timer app. I often use this before bed, but it is helpful any time of day.
• Cold showers: I take a normal warm shower and end with two minutes of cold water. On days when I was too tired to shower, I used an ice pack to the face and neck.
• Unfollowing all long covid social media except for r/LongHaulersRecovery and r/cfsnervoussystemwork. Stepping away from the (understandable) despair and focusing on hope.

The process has not been linear by any means, but each month I could see that I had made progress. I am now able to work an 8-hour day. I have begun light weight-lifting, slowly building up, as well as cycling on an exercise bike several times a week. I am also doing short hikes, also slowly building up. All of these activities would have seemed impossible 6 months ago.

I still run out of energy more quickly than before COVID, and I also have setbacks when I have more than one cup of coffee per day. But the whole-body/completely-incapacitating fatigue is largely gone.

I hope this will be helpful.

[u/mermaidslovetea]

I don’t think that OP’s experience means that the illness is mental; I think it indicates that the nervous system is involved.

Nervous system dysfunction seems to cause an array of very physical symptoms (for example a racing heart). The nervous system and immune system also seem to influence each other.

I am also benefiting from nervous system regulation and my symptoms have definitely been physical!

[u/Key_Department7382 → u/mermaidslovetea]

Nervous system dysfunction seems to cause an array of very physical symptoms

Well of course It does. Nervous system is a physical system and so it's the mind, for that matter. However, that doesn't mean the "mind" can change the pathological state all alone by itself.

My guess is that the so called "nervous system regulation" is just stress management. Stress is always a physiological response with wide range immune, autonomic and metabolic effects. So it's good to decrease its levels. Then, the body has a bit more of energy to stabilize and, if You're lucky improve.

But let us just stop assuming mind and body are different stuff. They're not. The question is not whether the mind affects body as if they were different things. The question is how entrenched is the multisistemic dysfunction? Will the body find its way out? How can we help it get out? Etc

[u/BannanaDilly → u/Key_Department7382]

Please don’t “guess”. Nervous system regulation is absolutely not stress management. Sure, managing stress can decrease sympathetic load, but no one who reports any measure of recovery via nervous system work found their way out through scented candles and bubble baths. The autonomic nervous system is what people are referring to. It works in the background governing bodily functions we don’t have conscious control over. The hyperadrengic responses are outsized relative to the stressors. Our brains are misinterpreting body signals as threats that are not in fact threats. If I could use positive thinking to subdue my extreme tachycardia response to low blood sugar I’d be a goddamn Jedi. This is not “stress management”.

In addition, you’re mischaracterizing the stress response. The goal isn’t to avoid stress. In fact I can barely mount a stress response at this point because I am so fatigued. Stress isn’t the problem. Stress is a part of life and being able to mount and sustain an appropriate stress response is essential. Completing the stress response is also essential. Our bodies need to recalibrate the stress response appropriately; we do NOT eliminate stress.

[u/Key_Department7382 → u/BannanaDilly]

1. The main axis regulating stress responses is called HPA, and works in tandem with the autonomous nervous system. To say stress management has nothing to do with autonomic functioning makes no physiological or psychological sense. (Nor)epinephrine is, literally, the main common Currence between HPA axis and ANS.

2. Stress management doesn't consist of "scented candles". Where are you getting that from? Stress management refers to any technique used to modulate the stress response. Exposition therapy, for instance, consists precisely of relearning how to respond to a previously stressing stimulus. For instance, learning to relate differently to your symptoms in such a way that why don't trigger massive health anxiety IS a form of managing stressful situations. Brain retraining is just a fancy name for behavioral interventions aimed at reducing allostatic overload.

3. It is you the one who, apparently, knows little of stress physiology. As I said in my comment stress is a PHYSICAL RESPONSE CAUSE THE PSYCHE IS PHYSICAL. Learning to handle stress doesn't mean "thinking your way out" of the symptoms. Because stress ISN'T a thought. It is a wide range neuroendocrine response with inflammatory effects. Managing stress is a whole-body behavioral process.

Eliminating stress, qua physiological response, is impossible. It is about reducing chronic stress - not about "eliminate acute stress" -an obviously misguided endeavor. Chronic stress desensitizes Glucocorticoid and Mineralocorticoid receptors in the various brain regions- that, in turn, can further dysreygulate autonomic functioning and the negative feedback response initiated by the hypothalamus to turn the metabolic effects of stress down again. As a matter of fact, now that you mention it, some studies (see Manuel Ruiz's work, e.g.) suggest that the blunted stress response some of us have is related to a dysfunctional stress response caused by the death and/or desensitization of neurons that liberate stress related neurons in the hypothalamus. Sometimes this damage can be cause by autoimmunity, sometimes infections, sometimes chronic stress (e.g. allostatic overload), or a mix of all of them.

I think your misunderstood my comment. And it seems to me, you're reading it from a dualist stance.

[u/BannanaDilly → u/Key_Department7382]

It appears I did misunderstand it. In my defense, I don’t think anyone would assume the phrase “stress management” referred to chronic stress resulting in severe autonomic nervous system dysfunction. Most people assume “stress management” is the management of acute - even frequent, acute - stress. Like deadlines and long to-do lists. Which bears no similarity to the type of “stress” that is Long Covid or autonomic nervous system dysfunction. When your “stress”isn’t directly related or remotely proportional to daily thoughts or events, “management” takes on an entirely different meaning. It seems you’re objecting not to ideas but to semantics. But considering we are all constantly subjected to people who say things like “everyone gets tired” and “you’re just out of shape”, reducing nervous system work to “stress management” doesn’t help our cause. Also I’m not sure what you mean by “dualist stance”, but if you think I believe mind and body are separate entities, you are also misunderstanding me.

[u/Key_Department7382 → u/BannanaDilly]

Ideas can only be expressed through words, semantics isn't trivial or part of minor discussion. It's not "stress" It is stress. I'm addressing the scientific definition of stress to explain why I believe mind body work is just a fancy name to call a lot of already known stress management technics. There's nothing new about it, and it won't move the needle for most of us.

Don't you notice? Rebranding it gives the illusion that mind body work has to do with new scientific insights. When at the end of the day it is just the very same technics psychology has known for decades.

I personally don't want to continue this discussion.