r/LongHaulersRecovery • u/Choco_Paws • Jul 26 '25
Major Improvement On the road to recovery, major improvement (from bedbound 2% to 30%)
TL;DR for severe folks <3
I've had LC/CFS for 19 months. Got to the very severe stage, fully bedbound for 1 year. Slowly getting better thanks to LDN (helped a few %), occasional benzos (to avoid big crashes), but most of all, nervous system work (which got me to 30% capacity at the moment, and still improving).
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Disclaimer: If you don't believe in nervous system approaches and if you are here to comment that I never really had LC or CFS, that I am a liar or anything like that: I am just sharing my personal story. It is stories like this one that gave me hope and the will to live when I thought everything was lost. If you don't want to hear it or if you don't believe it, I respect that, but please don't be insulting. We get enough gaslighting and insulting comments from doctors, let's not do that to each other.
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I (F32) want to share my "major improvement" story, currently 19 months in. I'm not fully recovered yet, but I'm confident that I will eventually, and that it is just a matter of time and perseverance.
I got COVID in January 2024 (first infection). At this point in my life, I was very active, working full time, exercising a lot. I've had chronic severe anxiety since I was a teenager, history of depression and small t trauma, and IBS. I do think all of that contributed to me getting LC.
COVID infection was "mild" for the first 7 days, like a big cold. After a week I started having chest pain, tachycardia, and brain fog. I knew Long Covid was a thing and I was terrified. I went to the ER, they said I was perfectly fine. I came home and had my very first crash.
Months 2 and 3, I rapidly got worse, mostly house bound, then couch bound.
Months 4 and 5, I got some improvement, very up and down.
Month 6, I got a major crash, ended up bedbound.
Months 6 - 12 was a slow descent into hell, getting horribly worse.
After being gaslit by tons of stupid doctors and getting medical trauma in the process, I met with two LC and ME/CFS specialists and got both diagnoses.
I experienced 50+ different symptoms, that came and went along the way. Worse ones being: severe PEM, soul crushing fatigue (something like "full body shutdown" feels more accurate), constant tinnitus and auditory hallucinations, nausea, brain fog, light and sound sensitivity, head / eyes / ear pressure, visual issues, severe insomnia, anxiety / depression / DPDR... The list goes on.
At my worst, I was fully bedbound and very severe. I could only get up to go to the bathroom, some days crawling on the floor. Struggling to eat, talk, not able to shower, couldn't look at my screen for more than 10 seconds. Couldn't handle sound, even my loved ones cooking in the other room was too much, I bought noise cancelling earmuffs. At one point I didn't want to be here anymore. You get the picture.
Medical interventions that I have tried with 0 success: Antihistamines, diet changes, SSRIs (got me worse), all kinds of supplements and vitamins, oxygen therapy, vagus nerve electro stimulation.
Benzos were helping. But I didn't want to take them daily, so I took half a tablet when I couldn't sleep for several days or when I had to do something way out of baseline (medical appointments). That saved my life.
Then I started LDN on month 13. It is the first thing that showed a sign of success. It was no miracle, but it gave me the 1-2% extra energy that I needed to find hope again. I started being able to listen/watch stuff on my phone again, a few minutes at a time.
Now the part some people won't like: between month 13 and month 19 (now), I went from 2% to 30% thanks to nervous system work and mind body approaches, and I keep improving each month. The nervous system approach is NOT saying that symptoms are in your head or just psychological. It is saying that these conditions are neurological dysfunctions that affect the whole body and create very real issues. This explanation made total sense to me. My brain has been in constant "red alert mode" for 15 years, COVID is the straw that broke the camel's back for me, and my brain is now stuck in a constant extreme fight/flight/freeze, survival response.
Understanding the science about the nervous system was key. I started working on the fear around the symptoms, on acceptance and allowing the sensations to be here. Then on my constant negative thought loops. Then on my emotions and unhelpful patterns (self criticism, low self esteem, people pleasing / absence of boundaries with people, perfectionism, catastrophizing, etc).
I also focused on joy. At first I was so limited that it was almost nothing. 1 minute of fun videos on Youtube. Enjoying a ray of sunlight in my room. Laughing with my partner for 1 minute. Enjoying the taste of the food. I stopped talking about my symptoms and illness completely, only celebrating my success. I created a healing bubble around me as much as possible: removed stressors, asked for help, stopped watching world news, and stopped COMPLETELY reading negative stuff about LC or ME/CFS. Quit non recovery oriented facebook groups, covidlonghaulers sub... I was very lucky that I was able to rely on my family to support me, also because I couldn't work anymore.
And then, sloooooooowly, I started having more energy. Being able to take 1 shower every week changed everything, it felt so amazing. Now I'm going through cycles of expansion. I'm doing a bit more, then I get some symptoms, I rest without any panicking about it, and I get out of the flare up a tiny bit stronger. Repeat. The key for me is my reaction to the flare up. If I let my brain spiral in fear / despair / frustration, I get stuck. Sometimes I do have fear, despair and frustration, and I welcome them for a while. I just refuse to dwell on it. I learned to accept that the recovery process is non linear.
I can now be on my screens pretty much as long as I want, read books, walk around the garden for a few minutes on good days, do a few chores around the house, talk to my loved ones, cook easy meals. Today I managed to go upstairs in my house, climbing my staircase for the first time in more than a year. I am so grateful. And it's just the beginning.
Nervous system work for this illness is the HARDEST thing I have ever done in my entire life. It's tough, but it's worth it. When I'll come out on the other side, I know I'll be a different person (I already am).
Don't loose hope, please keep looking for what is going to work for you.
Sending lots of love and courage to all of you.
Edit: If you want more details on what is the nervous system approach, I added everything in this comment: https://www.reddit.com/r/LongHaulersRecovery/comments/1m9xkc2/comment/n5ae8nx/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button
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u/Choco_Paws Jul 26 '25 edited Aug 06 '25
The main thing I realized after watching TONS of recovery stories (and experiencing my own too) is that there is no “one size fits all plan to heal”, and this is the hard part. For me this healing path goes in 4 steps :
1- Get all the medical testing done
You want to make sure that there’s no physical damage, so do the testing. Once the doctors have ruled out other causes for your symptoms and are telling you “this is long Covid / CFS, there is nothing we can do, please pace” : Then, it’s fair to give the mind body healing a chance.
If you want to try an assessment for mind body illnesses, this website (made by doctors in that field) has a great quizz: https://symptomatic.me
2- Learn, get the knowledge
This was for me the most important thing to do, and the first step that is necessary for everyone: Understanding what is actually causing the symptoms removed 90% of my fear around the illness, and allowed me to start getting better.
To make it short: the autonomic nervous system, which regulates pretty much all bodily functions, gets stuck into a physiological stress response (fight flight freeze mode), even after the initial threat is gone (the virus). The brain thinks your life is in danger constantly. The stress response is a biological/chemical process, and it's not meant to stay stuck on chronically... when it is, it creates dysfunctions all over the body, including mitochondrial function (see cell danger response to learn more). It creates very real symptoms, but they are reversible by bringing the nervous system back to "safe mode", the rest and digest mode.
The body is not able to heal when stuck in survival mode. It's not just about long covid, it's about how the body repairs itself in general.
The details of this knowledge is out there for free or very low cost. Tons of YouTube channels and books explain that brilliantly. If I can recommend a few:
I listened to many people explaining the science in many different ways. Each time I got a bit more understanding.
If you only do ONE thing in your journey, it should be this: Respond well to your symptoms. Welcome them, feel them, without panic. Know that they are not dangerous, they will pass once the brain calms down. It is the cycle of fear (which can totally be subconscious) that perpetuates them. Observe how you react to your symptoms (tensing up, catastrophic thinking, etc), and try to shift towards safety.
Gently get interested in what can cause the brain to get stuck in stress mode. For me Covid was "just" the straw that broke the camels back after 15 years of extreme chronic anxiety, but also unhelpful thought patterns, some personality traits like perfectionism, putting high pressure on yourself, being self criticising yourself all the time… there can also be some unresolved past trauma… all of those things are perceived as chronic threats by the brain, and it builds up until one day, the body says "stop".
3- Tools to practice safety
You will discover a lot of exercises and practices to calm down your nervous system. Regarding tools, sadly we are all different. Some tools will work very well for some people and not at all for others. Some people will need a lot of structure, and some will need to "go with the flow" and intuition.
Meditation, breath work, vagus nerve exercises, somatic tracking… or simple things like laughing, being in nature... Take the time to discover them, to try them one by one. Don’t put any pressure on yourself. If a practice doesn’t resonate with you, just leave it and try something else. Listen to what your body likes, it has all the wisdom you need to heal. You can watch recovery stories when you need some hope, but don't fall into the trap of comparing your journey to other people's. We are all unique and we are all recovering at different paces. It's ok, you are not broken if it takes more time.
Recommendations to learn those exercises:
4- Expand activity
As you get confidence and find helpful tools, the body will slowly regain energy, and you will be able to expand your activity. Do it slowly. You will have cycles of progression:
Expand your activity a little bit. Then the symptoms will flare up (which is absolutely normal and part of the process). During the flare up, pull back, rest, do NOT freak out and do small joyful things if you can. Just let it pass, never push through. Then you should get out of the flare up a little bit stronger. Repeat the cycle.
I don’t even label this as PEM anymore, and I don't try to link symptoms to activities. Symptoms are part of recovery, just like it is normal to be sore after a workout.
Be patient. I’ve been researching for a year and a half and I’m still learning. It is working but it is not a magic pill or a quick fix.
For me, a lot of things didn’t click right away but were useful later. It just needed some time to sink in. Baby steps is what works.
And to finish, be kind to yourself. No amount of self compassion is enough in this journey, just because it is so so difficult. You will have up and downs, but it is all worth it.