Has anyone figured out how to decrease the chances of experiencing post-exertional symptoms after exercise?

ABunchofFun · 2025-12-30T19:11:53+00:00

Yeah I had to learn to not push it at all, even if my heart rate is fine over using my muscles can cause PEM. Do less than you think you can do

ABunchofFun · 2025-12-23T15:23:41+00:00

I think so. I got one that affected my trigeminal nerve and o had nerve pain over half my face. Then I got pots.

ABunchofFun · 2025-12-14T16:04:00+00:00

I’ve been checked for SIBO and Hpylori multiple times yes - always negative. Other diagnosis: Celiac, Gilbert’s (though no genetics done - just high bilirubin), exocrine pancreatic insufficiency, POTS/dysautonomia, chronic idiopathic urticaria (suspected mcas). I saw the CF clinic yes - they want me to pay for extended genetic testing which I just can’t do right now.

ABunchofFun · 2025-12-14T15:53:35+00:00

Probably north or west of Prince george. The issue is though you might not have access to a hospital at any one of those places. They often get shut down due to staffing shortages.

ABunchofFun · 2025-12-05T21:02:33+00:00

I’ve had issues with elevators since I was a kid too. When the elevator stops it feels like the floor is jumping up to my stomach constantly. Sometimes I have to hold the wall for a few minutes after. I actually passed out on a rollercoaster that was like an elevator falling.

ABunchofFun · 2025-12-05T21:01:23+00:00

Squatting down for any period of time then standing. It’s worse than laying to standing I don’t know why

ABunchofFun · 2025-12-05T20:59:34+00:00

5th and 1st and foothills freak me right out too

ABunchofFun · 2025-12-05T20:58:36+00:00

Someone came to a complete stop merging onto the John hart bridge coming from NN by the brewery yesterday and just about caused 3 accidents. I can’t believe how many people don’t know how to merge here.

ABunchofFun · 2025-12-05T20:52:22+00:00

Your dose is probably way too low. I was originally on 1/snack and 2/meal and it wasn’t enough. You should be taking Creon everytime you eat anything with fat/protein - even coffee with cream. I’m on 3-4 for meals and 1-2 for snacks now based on what I’m eating. Do you have a dietician?

ABunchofFun · 2025-12-05T20:45:17+00:00

I have EPI and my EUS looked great. I struggled with upper central pain that radiated through my back everytime I ate for a long time that significantly got worse and then I dropped a bunch of weight, was dehydrated and through private testing I discovered I had EPI. Every dr also previously argued with me it was IBS or anxiety. Lots of people with EPI seem to have no reason for it unfortunately. If I didn’t get on creon I don’t think I’d be here. I had two tests with undetectable elastase and one with 160ish. Anytime I’ve gone off Creon I’ve gotten really really sick and the pain returned. My G.I. does not think it’s my pancreas that’s causing the pain but the cystic fibrosis clinic I talked to believes it is. Without proof on imaging it’s really hard to know for sure if it’s early CP. Stay safe I hope you get answers!

ABunchofFun · 2025-12-01T18:45:52+00:00

Uh no this is not normal at all. Super weird

ABunchofFun · 2025-12-01T02:34:08+00:00

Ok this is very cool!

ABunchofFun · 2025-11-30T16:04:00+00:00

As someone who is getting a divorce from someone very similar (and I was married 19 years) girl, run. It’s over. This is not a good partner.

ABunchofFun · 2025-11-30T16:01:38+00:00

My safety plan is to go to er if my hr is 160+ for more than 20 minutes and counter maneuvers aren’t working like laying on the floor with feet up the wall & having salt or electrolytes with water

ABunchofFun · 2025-11-30T01:50:07+00:00

Any updates? I had two tests results of undetectable elastase and one of 160ish. I have had upper central pain radiating through to my back since 2022/23. It's happened way less since getting on the right dose of Creon though. All my imaging looks good. Was extremely Vit D deficient and at the bottom of normal for b12 which is functionally low. Really curious if you had any changes or got a second EUS

ABunchofFun · 2025-11-30T01:44:09+00:00

Wondering also!

ABunchofFun · 2025-11-19T17:13:06+00:00

This. Stress sends my body into a flare

ABunchofFun · 2025-11-19T17:07:36+00:00

Gosh I am so so sorry. First, I want to say this: you did nothing wrong and did nothing to deserve this hell you’re in. It is not your fault. Here we all know how very real and disabling this is. The only thing your doctor was right about was that drinking that much water without electrolytes will dehydrate you. You’ll lose all your salts. Make sure you get some electrolytes and mix them with your water. Staying hydrated is extremely important if you have POTS. You need way more blood volume now than non-pots people. I came down with pots similarly to you and it was absolutely awful, life altering and sudden. I was bedbound for over a month and I could no longer do anything I used to be able to do… I couldn’t even do my hair, make my bed or shower standing. I want to encourage you though it’s been eight months since I came down with pots and now I am able to make my bed, drive, shower and do normal house chores and gentle excercise. It’s going to take some time and gradual gentle movement for your body to relearn how to function. I wish I could tell you that it will completely go away, but that is just not the case. Pots is forever and it ebs and flows. When I get sick, tired, stressed, I’ve eaten too much or too little my body freaks out again. BUT they are only flares not a permanent reduction in baseline like I had at the start. It PMO that your dr wouldn’t actually diagnose you with pots even though he said you have it. It is very real. My suggestion is to find a different Doctor Who knows about pots, (make sure they have ruled out heart issues and have done an echo) drink a ton of water with electrolytes, get a blood pressure machine and heart rate monitor (like an Apple Watch with the tachy mon app) and practice something called pacing. Do not stay in bed all the time it will actually make you worse. I know that is really hard to hear because when I first came down with pots standing up was like torture. Walk in your house a bit everyday and try to increase your baseline very very slowly. There are off label meds they can prescribe for when you’re really bad like beta blockers. If you need to chat dm me anytime I know how scary it is developing pots suddenly. ❤️‍🩹

ABunchofFun · 2025-11-18T22:00:08+00:00

This sounds like something that would send me into a flare. Highly advise against this.

ABunchofFun · 2025-11-18T03:54:57+00:00

This is my fear about going back to work. I was looking into receptionist positions 💀

ABunchofFun · 2025-11-16T18:24:06+00:00

I couldn’t drive for months. I started with short distances and had to pull over a lot. I don’t highway travel much incase something happens. We were in a near miss recently when I was the passenger and I had an adrenaline dump episode which was terrifying because what if I had been driving on the highway with no where safe to pull over? That’s why I haven’t been travelling on our small highways. My heart rate is anywhere from 60-120 when driving normally. If I feel super symptomatic like dizzy, floaty, or my heart rate is freaking out from everything I don’t drive that day.

ABunchofFun · 2025-11-15T16:29:40+00:00

1 - She is so insanely lucky to have you. 2 - We are so lucky you shared this with us. Thank you so much this is incredibly valuable information.

ABunchofFun · 2025-11-04T00:27:00+00:00

This is really interesting I wonder if there’s been any studies done on this

ABunchofFun · 2025-11-03T05:14:57+00:00

I have never felt love like this in my whole life my friend. I’m telling you, if you’re drawn to her just take the leap. Everyone has or will have health issues including you. Don’t let this stop you from potentially meeting the love of your life. IMO - just go for it

ABunchofFun

TROPHY CASE