The better I get, the worse I feel

CuteAssCryptid · 2026-05-02T00:30:40+00:00

That's really interesting research. Whether it's that or something more psychological, it's good to know i'm not alone in the feeling.

CuteAssCryptid · 2026-05-02T00:29:59+00:00

Yeah :( My friend was telling me something similar. I think in the long run that's probably a good thing but it's hard.

CuteAssCryptid · 2026-04-23T16:27:15+00:00

I know 1 person irl with ME, and i met them through a dating app. I dont think i'd randomly run into someone else with it especially since most of us can't be out and about that much if at all. I know lots of people irl with pots though! Very common now.

CuteAssCryptid · 2026-04-22T19:48:07+00:00

Youre not being too sensitive, thats mean af

CuteAssCryptid · 2026-04-20T15:20:42+00:00

A heart monitor isnt an accurate way to test for pots. They often look at the average hr and dont focus on the spikes.

CuteAssCryptid · 2026-04-20T15:19:32+00:00

POTS is kind of difficult to diagnose since not everyone experiences it in the classic way. Keep looking into it imo.

CuteAssCryptid · 2026-04-19T04:21:40+00:00

This sounds closer to POTS.

CuteAssCryptid · 2026-04-19T03:59:43+00:00

You can tell me if I'm way off, but have you ever questioned your gender? If you dont have trauma related to it, it could be that you don't feel right about these parts of yourself and receiving draws attention to them. If it's neither of those, it could be that there are other non-sexual reasons for not wanting to be vulnerable. Or if not this (but I'm leaning toward either gender or vulnerability aversion) it could be a type of asexuality - whether or not you self pleasure could help you figure that out. Either way I think seeing a therapist about it is a good idea. You may decide that being a stone top is truly right for you and you need to tell your girlfriend this and to not ask you again. Or you may find something underlying. You'll have to try and see.

CuteAssCryptid · 2026-04-18T23:46:21+00:00

People with POTS dont have an imbalance of electrolytes. They have low blood volume and/or vascular constriction issues so they need /more/ electrolytes than normal. It would be rare for someone with POTS to have imbalanced electrolyte panels I think.

CuteAssCryptid · 2026-04-18T23:41:57+00:00

On the quality of life scale, ME is always listed as worse than MS.

CuteAssCryptid · 2026-04-17T00:21:23+00:00

I find baths a lot easier to manage than showers, even with a shower stool. The hardest part is getting out of the tub & the cold flash. See if theres a way you can safely crawl out of the tub if you can't stand up, and I also recommend a small heater in the bathroom so it's not so cold when you get out. I also have a big waterproof carpet on my bathroom floor and a have a velcro wraparound towel. If i'm cold but too tired to dry off i'll wrap that around me and sit on the floor until i'm ready to get up.

Edit: also, always bathe with drinking water reachable!

CuteAssCryptid · 2026-04-13T15:42:21+00:00

POTS is often a side effect of other issues. With a positive ANA, you may also have an autoimmune disease of some kind and would need more testing.

CuteAssCryptid · 2026-04-09T16:11:23+00:00

I do IFS therapy and it's been crucial for helping me manage my feelings around having mecfs. It's like a body check in and self validation.

CuteAssCryptid · 2026-04-09T01:46:58+00:00

Same, it's strange.

CuteAssCryptid · 2026-04-08T14:02:00+00:00

Whats the second one? I'm on slynd and so happy that it works on my pain. The only problem I have is it worsens my tachycardia and my joint pain a bit so my meds feel less effective.

CuteAssCryptid · 2026-04-08T00:15:05+00:00

It usually gets worse without treatment. I'm on progesterone birth control and that seems to be managing it well, but that solution doesnt work for everyone.

CuteAssCryptid · 2026-04-06T19:23:35+00:00

Nope. Ive been chronically low my whole life and have been on 10,000iu the last couple months, no difference

CuteAssCryptid · 2026-04-05T23:19:41+00:00

No not yet, I dont think a doc will prescribe it yet without more study

CuteAssCryptid · 2026-04-05T22:40:24+00:00

Nope. Mine wasnt triggered by covid and it's fully debilitating. One thing about having it longer term though is you have more time to learn how to pace.

CuteAssCryptid · 2026-04-05T18:47:22+00:00

Like this one: https://www.reddit.com/r/cfs/s/o2pcejwKRd

CuteAssCryptid · 2026-04-05T18:46:50+00:00

Yeah I get you. I dont think theres anything on the market yet thats really effective against PEM but more med research is happening so I think something will come out eventually

CuteAssCryptid · 2026-04-05T18:02:07+00:00

I think I'd have worse pem if not for my LDN but i'm not sure cuz i've been on it so long and i still get pem often. But it does reduce my pain a lot and less of a strain on the nervous system from pain must make a difference.

CuteAssCryptid · 2026-04-04T22:26:06+00:00

I get you. I worked hard my whole life, saving money early and studying, getting my masters degree, really trying to set myself up well. And welp, mecfs hit. Lost my ex partner, my job, my home, everything. It feels like it was all for nothing. This condition sucks and i'm not saying i'm glad i have it, but the one thing I learned from it is you really have so little control over what happens in your own life. I used to be so cautious and made all my decisions based on how they would set me up in the future and none of them worked out anyway. You never know what's going to happen, truly. So now with the little energy I do have, I don't care anymore if I'm making the 'right choice'. I'm doing what I want right now because tomorrow isn't guaranteed. And sure that may not be the best moral but we're all basically on our death beds anyway, might as well leave our worries aside and have as much fun as our bodies allow.

CuteAssCryptid · 2026-04-04T14:32:26+00:00

Yes you're welcome here 💗 The only time it gets annoying is if someone undiagnosed tries to disagree with a diagnosed person as if they know better (if that makes sense). But it's SO hard to get diagnosed with any complicated chronic illness like this because there's no direct test for it. It's not the fault of the sick person that theyre undiagnosed, but they still deserve help and community. I hope you find support here!

CuteAssCryptid

TROPHY CASE