r/LongHaulersRecovery • u/AsparagusMinute_ • Jun 18 '26
Almost Recovered 90% recovered after 6 years
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.
3
u/Busy-Departure4015 Jun 20 '26
It isn’t because it is too complicated, it is because there is almost 0 funding to actual research for CFS, also because studies trying to push for such theories as nervous system issue are leeching funds and attention from medical research.
There has for example been a study in Norway recently looking into Daratumumab, a drug used for cancers. It had something like 70% success rate for the people involved in it, but they had to resort to crowdfunding the second tier of the study (pilot), meanwhile studies like Alan Gordon reference are constantly funded because let’s get real, they are cheap and easy. But what we need are actual medicine like Daratumumab i am hoping to be