#exercise intolerance

[a-totally-reasonable-username]

I think the most annoying thing about having exercise intolerance and POTS is that i can't enjoy music the same way anymore. I'm not even talking about anything like dancing but moving to music while sitting down and also singing? Pulse go whoo and ta da i've collapsed! So mean.

[ebonyheartnet]

Me: Okay, I need to be a little gentler with my PT exercises.

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!

MCAS: Fine. 👿

[sunshinepassenger]

The notion that POTS develops due to laziness is so hurtful and comes from a place of complete ignorance. I’ve always been a very active person who loves being outdoors and eats well. I made it a point to prioritize my health, especially after I had my son. So, the sudden onset of debilitating symptoms that made me feel like I couldn’t even move or my heart would explode was definitely the scariest time of my life. I didn’t know what was wrong with my body and was dismissed by doctors writing me off as having “anxiety.” I finally had a wonderful ER Dr listen to my concerns, refer me to a cardiologist for further evaluation, and actually told me herself that she thought I might have POTS. This condition is so widely misunderstood, and I think that’s likely due to the fact that it affects far more women than it does men. Isn’t it interesting that there’s still no known cause, only speculation of cause?

[toomanyacronyms]

I'm so confused and I think the idea of deconditioning has gotten out of hand.

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've also heard the whole "Cure Dysautonomia with exercise" has been debunked to an extent because the patients were astronauts returning from space and didn't also have a dysfunctioning autonomic nervous system. I know exercise helps some people, this post is for the ones it doesn't help. I'm just tired of feeling like I can't be heard because no one, including doctors, want to believe I have genuinely tried exercise so much growing up. I always stayed at the same level of symptoms no matter how much or how little exercise I've done. If my exercise is doing my Activities of Daily living (ADLs) and technically aren't exercise, so be it.

[crippleprophet]

any tips on doctors who just try to push physical therapy on you?

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.”

again i am so fucking sorry. your pain is real, in the vast majority of cases if pt was gonna help there would’ve at least been some sort of improvement in 4 months, & so much current medical science including around physical therapy is rooted in ableist misconceptions. you deserve further testing & pain relief no matter the cause of your pain (or whether that can even be determined). my heart goes out to you & i can’t always respond quickly but feel free to talk about this more if you need to 💖💖

[consider-your-potatoes-mashed]

Fuck heat intolerance and exercise intolerance. I cant fucking sit without sweating my ass off and having a high heart rate, and when I just walk i end up dripping and with an extremely high heart rate. The fuck is up with that shit.

[sopranoentravesti]

Constantly fighting against deconditioning and trying to slow the osteopenia/ prevent osteoporosis is so frustrating and unrewarding when no matter what I do to build strength and endurance it’s like “walk 100 feet —> need to sit from being winded walk another 50 feet—> need to sit because winded” ad nauseum (literally).

Like I’m sure it would be worse if I stopped, and like, I’m doing better than I was before I got crutches/ my Rollator but my endurance is eroding and I just wish I could build myself up and see results from exercise / set and meet sustainable goals.

[loserkaleidoscope]

"Exercise makes you happy!" Good for you! Exercise makes me feel like I'm dying and I'm in pain for days after, so stop suggesting it to me to 'have better mental health' ╯︿╰

It's literally not a One size fits all thing, I'm happy when I can walk without getting dizzy. I will exercise when I feel like I can handle it!

[compassionmattersmost]

Redefining ‘Exercise’ for Severe ME/CFS & PEM: The Smallest Victories Matter

Please honor your own energy envelope as you read. Whether a sentence… a paragraph… or even a glance at the headings, whatever feels right for you in this moment is perfect. Compassion. 🙏 When we speak of “exercise,” what do we really mean? For most of the world, the word conjures images of jogging paths, yoga mats, or perhaps the thrill of surfing. But for people living with severe ME/CFS,…

[milfitinstitute]

What is Exercise Intolerance?

Introduction Exercise intolerance is a condition of inability or decreased ability to perform physical exercise at the normally expected level or duration for people of that age, size, sex, and muscle mass. It also includes experiences of unusually severe post-exercise pain, fatigue, nausea, vomiting or other negative effects. Exercise intolerance is not a disease or syndrome in and of itself,…

[flutter-of-pages]

In today's adventures of learning to live with dysautonomia/chronic illness, I have to write a one page reflection about my perspective on exercise, and since I'm not "engaged in regular exercise" I have to include how I "plan to shift your mindset to embrace a healthier, more active lifestyle". I don't even know what exercise is supposed to look like for me anymore to address this prompt. I really should have talked to my prof about a modification for this assignment, but it's now due in eight hours and it's Saturday so I don't think he'd reply now. 😭

[spookybasementbrain]

Update: My heart rate while on a walk it's so normal!!! And I felt so good?? Like it was actually easy?? 103bpm max is unreal. Every other time I have taken this exact route I hit a max of 140-150bpm. Also pre-meds my normal standing heart rate was 115bpm. So now exercise is easier for my heart than standing used to be. Wild.

You mean to tell me that I have been gaslighting myself into thinking I was just lazy and unfit????? And that I just needed to try harder! When this whole time. THIS WHOLE TIME!!??? It was the tachycardia!!!!

Guys my new meds do be medicating. I have taken two doses and now I have a standing heart rate of 78-83 bpm!!!

That's a solid 20-40bpm less than normal!!! Having no tachycardia feels real fucking weird.

[toomanyacronyms]

I'm going to do it, guys. Today is the say where I ask my job, "If I obtain a doctor's note explaining why I can't do certain tasks, how will that affect my employment status here?"

If I remember, I'll edit this post with how they respond.

EDIT: Well, I ended up chickening out asking my job. But I have a doctor's appointment next week. I'm still asking for a doctor's note.

[sawbuckplus]

[serethespider]

well, two more gen 1 antihistamines and an h2 blocker later and i'm still itching whenever i get up and do anything. no signs of antihistamine overdose, pupils and heartbeat are normal, no irritability, so i think i'm good, but i'm not gonna push it by taking any more so i guess i'll just have to suffer and do as little work as possible until i clock out

whoever said antihistamines cause drowsiness is LYING i have taken four clorpheniramine, one meclizine, two undyed benadryl, and two famotidine since noon today (it is 8pm) and i'm literally restless rn

[cutiecatsub]

me: vegetable matter pretty severely upsets my digestive system bc i’m reactive to histamines and my tissue is too thin

everyone: that’s weird. you should eat more vegetables and be healthier!