u/Aggressive-Use-6522 — reddlx

Hello, I've been dreaming of writing this post for over 2 years (I'll try to keep it as brief as possible).

I (F30) would say I'm at least 90% recovered. I had 3 flare-ups in the last 5 months.

I know, it sounds like many setbacks for someone who is nearly recovered BUT the flare-ups were very mild, lasting 2 days max, which is good enough for me. Also, I haven't been pacing for 5 months. I do sports whenever I want. I had a stressful week a while ago, filled with socialising, work challenges and exercising, and I didn't crash.

The timeline

February, 2024 - caught a cold, went to work anyway, caught a virus which I believe was covid, spent 2 months being too fatigued to sit up, then returned to normal
April 2024 – went back to doing intense sports, experienced my first PEM flare-up a week later
The rest of 2024 - felt normal for about 7 days at a time, then like I had a flu for 7+ days after, my longest flare-up lasted 3 months, which lowered my baseline and I no longer felt normal outside of PEM

I didn't pace in the first year at all and basically continued living as if I didn't have long covid (yup, big mistake). When I sum up all the PEM days in my first year, they amount to 8 months in total of feeling like shit.

2025 - I still had terrible PEM but the flare-ups started to shorten, my cognitive abilities got better, the POTS symptoms disappeared, every step forward still felt like it was followed by 4 steps back, decided to do meditation regularly

Symptoms

I was never severe but I generally had less energy than my 90-year-old grandma...

Here are all the symptoms I experienced:

- fatigue
- malaise
- feeling out of breath
- temperature intolerance
- exercise intolerance
- POTS symptoms
- cognitive difficulties
- brain fog
- head pressure
- sore throat
- dizziness
- sleep problems

What was my PEM like

Like being poisoned or slowly dying, way worse than flu. I had a sore throat, head pressure and a terrible malaise. I wasn't always fatigued though. Sometimes I had to stay in bed because I had no energy, other times I could walk and do things but felt too awful to enjoy anything.

In the first year, it felt like PEM was mostly triggered by exercise and cognitive effort. In the second year, emotional effort and stress. Even when I was excited, it felt like my nervous system was in overdrive. My most recent flare-up was due to getting triggered by a toxic family member (cut them out of my life now and continue working on my mental health, so I expect to be at 100% at some point).

Things I've tried (which probably didn't help)

Creatine, taurine, codeine, magnesium, prolonged fasting (made me crash), stellate ganglion block, antihistamine diet, low sugar, gluten-free diet, being triple vaccinated, cold showers, CBD

Things I’ve tried that might have helped

COQ10, intermittent fasting, wearing compression stockings, electrolytes during exercise, acupuncture, massage

THINGS THAT MADE A DIFFERENCE

Yoga nidra - no, I don't think long covid or CFS/ME is just in your head but I believe meditation gave my body space to heal. I also have PTSD so it was beneficial to me either way.
Mirtazapine – it helped me sleep better. It also acts as an antihistamine, which might be why it made my PEM less miserable.
Iron tablets - my iron levels have always been normal but on the lower end. From reading Reddit, I found out that most people function better when their levels are at least 100 but I was kind of reluctant to do anything about it until I was 1,5 years into my long covid. At that point, I said fuck it, got iron tablets and within 2 weeks I finally had my energy back (but PEM persisted).
Nicotine patches - again, I was reluctant to try these as I've been conditioned to think nicotine=bad, but I got desperate, so I put 7.5mg on during a flare-up and woke up fine the next day (October, 2025). I've put them on a few times since then, they always shorten my PEM and help me sleep better. I've never worn them for longer than 2 days at a time. Also, the patches gave me a sense of security - I stopped worrying if doing this or that would cause PEM because I knew I finally had something that could get me out of it.
Getting off Reddit - reading posts about symptoms, trying to follow research and finding new things just overwhelmed me and made me spiral. At some point, I decided to worry less about finding the cure and focus on my mental health as it was something I could control. I was also determined to prove the doctors that they were wrong about it being anxiety.
Daylio - This app is amazing! It gave me a visual representation of my progress, which was a lot more motivating than just crossing something off a list. I logged in everything I did like meditation, I tracked my mood and symptoms, which kept me motivated and helped me develop a healthy routine. 5 months of meditation made me anxiety-free for the first time in 15 years.
Gentle pacing – taking frequent breaks, especially to meditate, but still doing things to the best of my abilities.
Time – the above things helped for sure, but the biggest factor might have been time, unfortunately. I think many people just have to wait it out, but it’s worth supporting your body as you do. In November 2025, I finally felt a shift and that’s when things started improving without many setbacks.

How am I now?

These days I look back on the last 2 years and can't believe that long covid happened to me. It seems like a bad dream, like I’m struggling to believe it’s possible to feel this ill with this little support from the doctors… it’s just insane! I’m feeling extremely fortunate.

And yeah, I'm not 100% back to normal. I'd think twice about doing a strenuous exercise on little sleep and after a stressful day, for example. But you know what? I don't want to put my body through that kind of stress anymore. Now and again, I experience head pressure or a mild sore throat, and I take it as my body telling me I need to relax instead of pushing myself. And once I do step back, the symptoms go away.

So yeah, I’m hoping this post can give you hope. I read many of these myself when I was ill. As you can see, I did many things ‘wrong’ in my first year, I didn’t pace, I doomscrolled, I got drunk, I exhausted my mind and body and still managed to get better. I believe it’s possible to recover for many people; it might just take time.

If you have any questions about my experience, feel free to ask.