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Does anyone else feel like exercising makes your symptoms worse?

Posted by stephbea @stephbea, Mar 22, 2023

Hi everyone! I have started to have some improvement after starting vagus nerve stimulation therapy and finally felt like I was able to start exercising again! I have a Peloton bike (leaderboard is @stephbea27 if you want to add me!) and I started doing 20 minute rides last week. The first day the ride itself felt amazing and I felt so good while working out, but the next day all of my symptoms were back and I felt terrible. When I take a rest day, I notice the symptoms feel better the next day but when I work out, I just don't feel good the next day. It's like my body is using all of it's energy during the workout and leaves nothing for other processes. Has anyone experienced this?

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lisadunlap | @lisadunlap | Apr 14, 2023
In reply to @athomason "I agree. I am one year out from my second round of LC, and have PEM,..." + (show)
@athomason

I agree. I am one year out from my second round of LC, and have PEM, POTS, and all the other vague symptoms that are autoimmune mediated. I was an avid exerciser, who was running, and doing HIIT classes 5-7 days a week. I am now back to where I was except having to really manage fluids and electrolytes. Yesterday was a bad day. I was already dehydrated from having a few drinks with friends the night before. I did not hydrate prior to my 5 mile run, and paid for it the rest of the day. After several rounds of liquid IV and rest, I felt much better. It will be lifelong I am afraid.

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You’ve made progress though. Bravo!!

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lisadunlap | @lisadunlap | Apr 14, 2023

I relate. It’s very tricky when you feel you have some energy and want to use it, then Baget blowback. Boy, it’s a real management process isn’t it?

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elizabethjoy | @elizabethjoy | Apr 15, 2023

Me, too! Gardening is my passion, my therapy, & now I can only do a few minutes . Even worse, if I pick up my 18-month-old granddaughter & walk a few minutes, I'm struggling with SOB. Grocery shopping means I have to collapse & rest of nap an hour or more. I want my life back! Thanks for listening!

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germang33k | @germang33k | Apr 15, 2023

It did for me for months-it's called post exertional fatigue. But there is hope. It is slowly getting better since July 2022. I had to really watch electrolytes even when I wasn't exercising, as that definitely helps with the fatigue. Doctors also recommend stopping an activity before you start feeling tired or you'll crash. Learned that the hard way. I am trying to do anti inflammatory diet (mostly low carb, no grains, no sugar or sweeteners) to help my brain, as well as acupuncture, healing meditation videos, qi gong/tai chi (great for energy) and massage. Those have been game changers to my progress.

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germang33k | @germang33k | Apr 15, 2023
In reply to @lisadunlap "You’ve made progress though. Bravo!!" + (show)
@lisadunlap

You’ve made progress though. Bravo!!

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Yes, celebrate the progress! It's so easy to get bogged down in the chronicness.

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germang33k | @germang33k | Apr 15, 2023

Also pace yourself. Sounds like you are learning what your body can handle and maybe daily workouts aren't the way to go at the moment. I know it's frustrating. Maybe shorter rides daily. Or gentle rides. Cardio workouts can exacerbate, even though that seems counter intuitive.

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silverfish0409 | @silverfish0409 | Apr 16, 2023
In reply to @lisadunlap "I relate to your comments. I guess we just need to do all we can to..." + (show)
@lisadunlap

I relate to your comments. I guess we just need to do all we can to manage our energy (I used to speed around doing everything) now I have yet yet gotten back up to 1/4 speed.
What a sneaky freaking disease! Sharing with others helps.

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4 months ago I was riding my bike,working all day now almost bed ridden,no more golf my stomach pain and gas pains are horrible, my blood pressure is different now,I have lost 23 lbs I am miserable.

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sherryoct11 | @sherryoct11 | Apr 16, 2023
In reply to @elizabethjoy "Me, too! Gardening is my passion, my therapy, & now I can only do a few..." + (show)
@elizabethjoy

Me, too! Gardening is my passion, my therapy, & now I can only do a few minutes . Even worse, if I pick up my 18-month-old granddaughter & walk a few minutes, I'm struggling with SOB. Grocery shopping means I have to collapse & rest of nap an hour or more. I want my life back! Thanks for listening!

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I have the same issues. My gardens all suffered last year as I could not do more than 15 minutes at a time. Grocery shopping starts out ok, then half way through (15 minutes or so) I am leaning heavy on my cart.

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anned22 | @anned22 | Feb 5 12:01pm
In reply to @rinadbq "The frustration, confusion and fear of these "crashes" is horrible!! For me, this is a leaden,..." + (show)
@rinadbq

The frustration, confusion and fear of these "crashes" is horrible!! For me, this is a leaden, overwhelming, incapacitating exhaustion (not fatigue) combined with headache/nausea/light & sound sensitivity, muscle pain (not aches), chills. I will loose an entire day essentially bed/couch-bound. LOTS of water with an electrolyte replacement (Propel or Gatorade), a dark room, and time gets me through. I learned abut pacing from OT. I keep a diary of my physical and cognitive activity each day. I started with limiting myself to only 2 hours of each per day. I can do 4-6 hours total each day now. Laundry, cooking, errands, wash/dry/style my hair count as physical work. Finance, legal papers, planning count towards brain work. I know from my diary that when I exceed these limits, I crash. For any kind of 'event' (social, entertainment, travel) I do nothing but shower, pick out my clothes and rest the day before, and nothing the day after to survive the occasion.
IM if you would like more details

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Hi, I see that you wrote this over a year ago, but if you’re still willing to talk about it, I would love to. It sounds like your situation back then is very much like mine for the last 3 years since I got it. I finally got much better last fall. I was able to be more independent and I adjusted to a new normal. However, I’m in a significant relapse now. I’m starting over, and having a hard time pacing - I keep crashing. I know all about PEM and I’ve had an OT, but still I am not getting my pacing right this time around. If you are willing, would you please IM me. I think it would help to talk it over with someone who’s actually lived it in a way that sounds very similar to my experience.

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alex7474 | @alex7474 | Feb 6 9:28am

Exact same thing for almost 1.5 years! Two consecutive rounds of prednisone finally fixed it. Now I'm recovering from covid round 2 and expecting similar long covid journey...

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