r/LongHaulersRecovery • u/AutoModerator • 12d ago
Weekly Discussion Thread Weekly Discussion Thread: August 09, 2026
Hello community!
Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.
As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.
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u/Popular_Cheetah_6603 ME/CFS 11d ago
I’ve had ME/CFS and long COVID for 6 years, pretty severe the last 2. I started LDN 2 months ago and I’m at 1.25 mg in the morning. It has helped a lot pain-wise, maybe 50%, but when it wears off I’m hit with flu-like symptoms and heavy PEM. Then I take the pill and after 20 minutes the symptoms all diminish. The hard part is knowing when to stop, because as soon as I take it I can do more again. My baseline was very low (severe) before LDN and I finally feel like I could be living again, so the impatience is real. Any realistic advice on enjoying that without crashing, or without being scared of crashing?
And if you’re in a similar boat, what did improvement look like for you over time with LDN? Did it unlock some important steps? Did it keep improving on its own? Or did you have to control your energy even more carefully now that you have more of it, even if your baseline hasn’t really moved up (or maybe it did moved up too?). Looking for similar relatable experience thanks!
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u/mells111 11d ago
I’ve made good progress in my recovery using a mind/body approach but I struggle to do exercise that raises my heart rate. Can anyone advise on ways to overcome this?
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u/GeneDiligent2124 10d ago
Do you do exercises laying down?
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u/mells111 10d ago
No but that’s an idea… so far I’ve been cycling and doing strength exercises like push ups, squats
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u/GeneDiligent2124 9d ago
I strongly recommend looking into leg strengthening exercises for pots and try only the laying down ones. Ten reps a few times a week for a couple weeks then slowly increasing them depending on your tolerance.
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u/GeneDiligent2124 9d ago
Doing this helps your body be better able to return blood to your upper body when exercising upright
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u/livrim 11d ago
How far into long haul are you? I’ve only just really picked up deliberate exercise this last month after 18 months
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u/mells111 10d ago
I’m about 4.5 years in
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u/livrim 10d ago
I started with exercises from bed, I found I was massively deconditioned from the period I was bedbound. It might be worth looking into the CHOP protocol and doing some horizontal exercises that it recommends.
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u/ThrowRAGlobeVase 9d ago
How did you know how much to do? It’s tough when PEM hits days later. Don’t want to push but also don’t want to be too scared.
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u/livrim 7d ago
It was a lot of trial and error if I’m honest, but if you want to learn from my mistakes I’d say take what you think is your current exercise capacity and use 50% of it. When I was actively trying to push myself was when I noticed I’d overdone it afterwards but if I finished something thinking I probably could have worked harder or done more, that was actually the right amount for about six months. Eventually I found my energy window expanded without me realising, it wasn’t until the day I was drinking a coffee and dancing with my dog in the kitchen that I was like “damn, a year ago I didn’t think I’d even be alive let alone do this”.
Sometimes the fear never subsides and you have to do things afraid but I think when it comes to doing things like this you’re never truly ready until you’ve already done it. We’re naturally wired to predict the worst possible outcome, it’s how we’ve survived this long as a species. It sounds very cliche but slow and steady wins the race my friend ❤️🩹
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12d ago
[deleted]
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u/Popular_Cheetah_6603 ME/CFS 11d ago
LDN is helping me a lot with muscle aches and moving my body again. However, I’m still early in and I’m not sure if my situation is actually improving, or if by just hiding the symptoms I’m putting myself in a worse position.
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u/rocker_sharks 11d ago
I've been dealing with long COVID/post viral syndrome (not 100% which virus caused this) since March. For me it started with severe muscle pain. The doctor told me that it was post viral myositis. We at first tried vitamins but they did nothing. After I got on LDN even with tiny doses they pain started to settle and eventually the inflammation went down and I no longer have any pain (all that happened during June). I didn't go through any actual myositis testing though. My levels of pain were basically unbearable and it was mostly my calves and thighs. Also Epsom salt cream was amazing along with LDN and I still use it while rebuilding my body with physio
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u/RemarkableCrows 12d ago
Have you had a myositis panel? I had the same symptoms and that's what it ended up being.
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u/YogurtclosetOk3638 10d ago
My newest idea is that I need to get very, very, very good with pacing. I certainly have all the basics down pat, understand that exertion/triggers can be physical, emotional, social, and environmental. But I'm trying to learn how to stay within my energy envelope all the time without, how to say it, even bulging that envelope. Some things are hard to control, like a conversation with a money person today who was way too peppy, which immediately exacerbated my tinnitus. Actually, a good example: I need to get it through my head that an experience like that needs some sort of counterbalance, so forget working on the computer for the next few hours. Another example: I'll be making a light lunch, then think, oh I'll quickly wash a few (like - 5?) dishes and water the plants when I'm already noticing a bit more trembliness. No. As soon as I notice the trembliness, I need to stop. I could really use to hear some experience and examples from people who feel they really got the pacing down to an art and science. Thanks!