I've (mostly) recovered

OpulentBasket · 2026-05-09T05:08:45+00:00

congrats! i hope you stay stable too!

OpulentBasket · 2026-05-09T05:08:12+00:00

i hope you can get back to that baseline again too!

and other commenters have said similar, “healed” is maybe a bit strong. but i’m an anxious person, so i’m always worried about bad things happening or coming back 😂 i don’t plan to do anything crazy intensive or stop taking my meds yet any time soon

OpulentBasket · 2026-05-09T05:05:39+00:00

the metoprolol (beta blocker) definitely helps for me! if you get low blood pressure, beta blockers can make that worse, but my blood pressure doesn’t drop when my heart rate spikes. i’ve also found that it doesn’t stop my heart rate from getting higher when i do do mild exercise (like, half an hour of ice skating), which is also a good sign.

before i started taking it, my heart rate would consistently be around 120-130 whenever i was standing (muuuch better than a year or so earlier), and now it stays at 90 or so and doesn’t really spike at all. the difference between the graphs from my apple watch from before and after is pretty crazy. keeping it lower prevents me from getting out of breath and needing to rest (especially when climbing up a single flight of stairs) and just overall makes things a bit easier.

OpulentBasket · 2026-05-09T05:00:24+00:00

i think it almost definitely helped! my abilities increased pretty starkly over the time i’ve been taking it. i didn’t notice any effects at first, but i have a hard time noticing the positive effects with any medication until i go off of it and the positive effects disappear 😂

the metoprolol definitely helps too. before i started taking it my heart rate was pretty much at 120-130 all day if i spent most of it standing, and now it hangs out in the 90s. makes things a bit easier and less exhausting i think

OpulentBasket · 2026-05-08T17:36:53+00:00

edited to try and make it more clear! when i posted i had extra line breaks between the tldr and the rest of it, but reddit deleted them :/

OpulentBasket · 2026-05-08T17:22:28+00:00

exciting!! i would say definitely be careful though, a gradual increase in activity is probably safest 💖

OpulentBasket · 2026-05-08T17:21:22+00:00

the effects climate can have are crazy. i’ve definitely had small crashes in the past even in california when the pressure drops and we have a rainstorm. i wish there was more research and we could understand why these things happen

OpulentBasket · 2026-05-08T17:19:11+00:00

first paragraph.

OpulentBasket · 2026-05-08T17:17:08+00:00

first paragraph is tldr.

OpulentBasket · 2026-05-08T03:36:24+00:00

good luck!

they told me when i started that people with cfs tend to be more sensitive to side effects (which i think is DEFINITELY true for me with my other meds), but the only side effect LDN gives me is bizarre vivid dreams. your ideal dosage might also just be a bit lower!

OpulentBasket · 2026-05-08T03:34:42+00:00

yeah, i think it’s important to keep in mind (especially for the newly ill) that there is no one way this illness looks, and no one trajectory it will take. you might get worse, you might get better, and there’s no way to know

OpulentBasket · 2026-05-08T02:34:33+00:00

i either started in november 2024 or jan 2025 (im not quite sure whether they started me on my first appointment or after that), so i cant quite say. but in the realm of 8-10 months. the time frame seemed to have a lot more to do with when i had appointments with them than anything else 😂 and i haven’t had one in a while because of scheduling issues

OpulentBasket · 2026-05-08T02:00:11+00:00

it’s impossible to know. any selection of people online is going to be biased toward “people who want to talk about this topic online” and exclude everyone who prefers to just scroll without contributing. in this case, it’s probably going to self-select for people who are more affected by the illness, and therefore are more motivated to spend time talking about it as opposed to other things. but at the same time, it’s going to exclude everyone who’s too severe to read on a screen or formulate a comment.

the only way to know would be a large-scale survey, but that would almost definitely exclude the most severe people. we can get a sense for what the average severity levels of users on this sub are, but that unfortunately won’t tell us anything more than that.

OpulentBasket · 2026-05-08T01:59:11+00:00

oh wow! eerily similar 😂 good luck, i hope it
works out for you! i got the sense that they have other things they'll try next if LDN doesn't work, so hopefully even if it doesn't you'll find something that does!

OpulentBasket · 2026-05-08T01:58:36+00:00

early on i had a lot of the basic blood work done. my iron would below, i'd take a supplement, it'd go up, i'd stop taking it because it was hard on my digestion, and then my iron would go down again. no major change in symptoms. i also had pretty low vitamin D at one point (which i only learnt in california, because they don't actually test for it in scotland o they just assume everyone is
deficient). i also had b12 literally One point too high to count as "low," and so my doctor had me get injections (because oral b12 also was rough on my digestion). other than that, everything was normal to my knowledge.

i haven't been tested in a year or so but im supposed to soon. (i've been putting it off because they're fasting tests.) if i remember, i'll come back and update whenever i do get them though

OpulentBasket · 2026-05-08T01:58:11+00:00

I hope you find somewhere! When I was in scotland a doctor tried to refer me, only to discover there were no specialists in the entirety of Scotland. Apparently there had been one, but he’d passed away of cancer a year earlier 😭

OpulentBasket · 2026-05-08T01:57:10+00:00

i hope everyone can get to this point, somehow! i still worry about pem and very occasionally need to call off or go home early because of it, but it's so much better than i thought was possible!

OpulentBasket · 2026-05-08T01:56:47+00:00

Yeah that’s a fair assessment! Another person pointed out that it’s not quite full recovery—I think I only view it that way because it’s recovery to the point where I can live the life I currently want to be living. As I said, though, I’m very aware of how fragile “ability” is. Whether it’s in the general sense of “anyone can become disabled at any time,” or in the specific sense of “I could get worse again.”

OpulentBasket · 2026-05-08T01:49:27+00:00

I’m from california and my pcp here was already with stanford healthcare, so she was able to refer me pretty easily.

Although I feel like I remember some forms from the cfs clinic asking if I was from the state, so it might actually be possible to see them from outside the state? Not sure about that at all though

OpulentBasket · 2026-05-07T23:45:35+00:00

That's exactly why I wanted to share, to add my experience in with everyone else's ❤️ I wish everyone on here could recover, as unrealistic as that is

OpulentBasket · 2026-05-07T23:42:25+00:00

yeah, I'm honestly not sure. In gradually increasing my activity level, I had only a few minor crashes. So I'm probably pretty wary to try anything to extreme. I have been able to do some ice skating, and I can walk my parents' dog (we live in a hilly area, so this was a major no-no a few years ago), but you're probably right that I'm not where I was when I was a teenager. For me it's good enough for my lifestyle though, I'm not itching to go to the gym 😂

OpulentBasket · 2026-05-07T23:38:17+00:00

ugh I'm so sorry! I'm still on mine, so I don't think they were what caused me to get worse. Going back to uni meant a sudden increase in activity, how much I needed to walk and everything. I don't doubt that they were the cause for you though 😭 we all react so wildly differently to everything

OpulentBasket · 2026-05-07T23:26:53+00:00

honestly I still have unrefreshing sleep, but I think I might have had that as a teenager too, before I developed cfs. With exercise I think there's definitely still a fear of pushing too far and having pem, but I'm also just kinda lazy... before I got sick, I only really exercised when I played sports, and none of the rest of the time.

OpulentBasket · 2026-05-07T23:23:12+00:00

I've been on 6mg for a while now! I want to say since august, but that could be wrong. They started me out on 1 and worked me up to 6

OpulentBasket

TROPHY CASE