#exercise intolerance

I decided I felt okay enough to change my bedsheets by myself—so I did! And I was right, and I feel not awful afterwards!

Brain: But why? Your asthma’s behaving, you haven’t hurt yourself, and you haven’t even broken a sweat!

Me: Dude, I’m itchy.

Brain: Only a little! Other than that, it actually feels good, right? Keep going!

Me: Friend, aren’t you forgetting about something?

Brain:

Brain: Are they behind me?

MCAS: Hi! 😇

Brain: AHHH!

Me: I’m already relaxing and having some water. You can go now.

MCAS: …

Me: I banish you with a dose of rescue meds. Put down the exercise induced anaphylaxis and be gone!

I've read online that deconditioning usually happens when a person has been bedbound and not able to move for an extended period of time. I have IST which does admittedly share symptoms of deconditioning. But I've been exercising in some way my whole life and still can walk around my house, with symptoms this whole time. I have tried and failed my whole life to decrease my exercise intolerance. I'm still at the same level of exercise intolerance I was 22 years ago. And there's no anything out there for "failure to decrease exercise intolerance".

i have chronic muscle pain (hips + knees) and have already done 4 months of pt for supposed pfps (turns out i don’t have it) and it did absolutely nothing to help with any of my pain (i did a lot of stuff for strengthening muscles around my hips). i told the doctor that exercise doesn’t help and that i’m in pain the whole time and they didn’t care

god i’m so sorry you’re dealing with that, myself & tons of others have been through this experience & i so wish i had better answers for you. unfortunately as far as i can tell you’re at a juncture where your decision is basically whether to become a “noncompliant patient” or not –

you can try doing what the doctor suggests & continue putting yourself in pain through physical therapy with the hope that eventually the doctor or physical therapist will be like okay this is doing fuck all let’s try something else

if you’re in a position where this is an option, you can go to a different doctor, but they might just do the same thing

you can keep going to this doctor without continuing pt, with the knowledge that they’ll probably label you noncompliant & will likely treat you more like shit

i wish so badly that there was a certain response that would make them respect you, it’s a shitshow & a crapshoot & you don’t deserve this. you shouldn’t have to put yourself in more pain to receive healthcare & i’m so sorry the system is so fucked. it is always okay to stop going to physical therapy if that’s the decision you want to make, i wish it didn’t carry so many potential punitive consequences from physicians who think their word is god.

the best resources i can suggest are around resisting medical gaslighting; community support + experiences + theory around both noncompliance & exercise intolerance have been very affirming for me wrt like, i’m not making this up. it can also be helpful to journal or whatever to document how you remember your symptoms being worse after exercise, pt, etc so that if later you’re doubting you were “actually” in worse pain you can read back over your experiences.

the mindset that’s also been helpful for me is that even if pt would help, it’s okay not to do it. i don’t owe anyone an able (or less disabled) body, & not exercising doesn’t mean i deserve medical neglect; no one deserves to be in pain even if they’ve “brought it on themselves.”

Today: