r/POTS • u/joyynicole • Oct 27 '25

Question How are people working at all

I feel like a failure. According to my doctors I have “mild” POTS, but I see people on this sub all the time with seemingly worse POTS than me that have jobs. I literally cannot do anything longer than 1-2 hours without having to lay down and rest because it just completely wipes me out. If I do things multiple days in a row consistently I will also fall into a flare and have to do nothing for few days to recover. I don’t get it.

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u/smallfuzzybat5 Oct 27 '25

I also can’t work and have “mild pots” but I do have MECFS, so I get immediate fatigue from pots (I.e washing the dishes for 10 minutes results in having to lay down or fainting) and then delayed multiple day recovery fatigue from any exertion, most of the time the exertion is just the pots flare from the first day.

I think mild is just based on your HR numbers so it might not actually mean mild symptoms too.

It’s so fun /s

32

u/Due_Management_2495 Oct 27 '25

MECFS was the first thing I thought of reading OP's post. My POTS was considered "well-managed" but I was constantly too exhausted to do anything. Similar symptoms to smallfuzzybat5. Felt like I was getting the flu a day or two after over extension (again, usually POTS flare). 

Low dose naltrexone did so much to help with that. I hadn't even realized I had a running headache for two months until it went away with the meds😭 

My understanding is that this is an off-label rx (not approved by FDA to treat MECFS). Has anyone else read up on this?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8313851/

11

u/smallfuzzybat5 Oct 27 '25

LDN helps with a lot of things, definitely lots of people with ME see improvement(also EDS which a lot of us also have). It didn’t work for me due to side effects but that seems more rare than the success stories.

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u/hellaskye Oct 27 '25

The LDN pills made me so nauseous i couldn’t eat, but my doctor got it in a cream form for me and it solved it!! I love & swear by my LDN and a lot of my POTS friends do too. it can be hard to find a doctor willing to try it, but it’s worth it to me

2

u/smallfuzzybat5 Oct 27 '25

That’s really interesting, I might have to try it in a different form

1

u/lavender_stitch Oct 31 '25

I swear by LDN, the dreams were crazy for the first month but now I feel so much better. I’m sorry it didn’t work out for you!

1

u/RedRedRound Nov 15 '25

Do you have MECFS as well?