Exercise Intolerance Paradox

[green]

I have almost completely recovered from my OI that onset as a teenager. I am now 33.

I rarely feel dizzy. I still get really tired and weak from standing around. I still feel tired a lot, but I have a lot of trouble sleeping, and maybe some sleep apnea so I blame that. 

My biggest complaint is exercise intolerance. I'm actually having trouble wrapping my head around it.

I'm noticing, from my personal records, that periods of non-exercise correspond to productivity gains and a subjective decrease in fatigue. Often there's a 1-2 day delay between increasing exercise and losing productivity / becoming more fatigued, or, a 1-2 day delay between backing off and feeling better. But, it's hard to not see when I'm looking at spreadsheet data of my workouts / productivity. 

Part of me thinks - oh gee, I should quit working out, because I've been working out regularly for 10 years and look at how much I benefit from stopping! 

Part of me thinks - if you do that, you will slowly regress and end up worse than before.

Any thoughts? I ran a half-marathon in Fall 2015, and almost ruined my Ph.D. work - did nothing for months training up, and hardly noticed the correlation at the time. Then again, this summer, I have a leg injury so I cut out running and starting lifting weights again. Suddenly, again, two months ago by and Ph.D. work is noticeably stalled. This is VERY frustrating!

I would love a way to manage the cruel exercise intolerance - I often start up a new exercise regimen in response to psychological stress - and this is a kind of profound cruelty that my reward for trying to cope in a healthy way is to be set back further. 

I'm thinking of trying mestinon again, I did it for awhile and I just don't have records going that far back about whether it helped with post-exercise OI. I'd like to up my tolerance of exercise without becoming dependent on a new drug though.

Water, of course, is a big helper.

 

[Katybug]

I am going through a new phase where I am truly more ill when I exercise. My migraine pain is spiked within the hour, my fatigue is worse for days, the following 1-3 days my tachycardia/dizziness/GI issues are all worse. I've tried pushing through hoping that after a couple weeks of exercise, my body would readjust but it actually gets worse, like a cumulative effect, instead of better. I see the neuro at the end of the month and the endocrinologist this Friday. I'm hoping one of them has some feedback. I truly hate being sedentary. 

Edited August 11, 2016 by Katybug

[Lily]

Maybe you're overtraining, given that you're in grad school.  Been there and done that.  It's a lot of stress, and ecercise adds morw.  Maybe back off a little and see if that helps.

[angelloz]

Same delayed reaction here. Hot weather or very cold weather increases this reaction a great deal.

[m@t]

19 hours ago, Katybug said:

I am going through a new phase where I am truly more ill when I exercise. My migraine pain is spiked within the hour, my fatigue is worse for days, the following 1-3 days my tachycardia/dizziness/GI issues are all worse. I've tried pushing through hoping that after a couple weeks of exercise, my body would readjust but it actually gets worse, like a cumulative effect, instead of better. I see the neuro at the end of the month and the endocrinologist this Friday. I'm hoping one of them has some feedback. I truly hate being sedentary. 

Katybug that is exactly how I have been. In two years I have gone from running and cycling for hours a week to sedentary. Any attempt to get going again regardless of how slow I have started has resulted in this cumulative effect where it just builds up until its intolerable.

I am now starting to play with my propranolol dose and am having a degree of success.

Normally I take 20mg a day and directly after exercise I am taking an additional 40mg. This certainly seems to have some beneficial effect for me but I guess ill see how it goes. Ill be very interested what your team have to say.

[Katybug]

I'll update if my docs say anything useful.  I am, unfortunately,  not hopeful right now.

[m@t]

Katy, sorry to hear that. I know that feeling all too well, sending many positive thoughts.

[yogini]

When you say exercise, what kind of exercise are you doing and for how long?  Non-cardio exercises (like yoga) and exercises in non-vertical position (swimming) work the best for me.  For cardio I have to pace myself and go at less than full capacity - I really prefer other forms of exercise to cardio.

[SarahA33]

green -

We're all glad to hear your OI symptoms have improved greatly! When long time members com back to report how they are doing, even despite their challenges, it gives the new members hope to see how far you've come and how much progress you've made. Keep up the great work.

Just a thought, do you wear compression gear when you exercise - adbodem, thigh high support stocking's, might be working talking to your dr.  about. Good luck!

[Jan]

Have you tired a more limited exercise routine? Like just walking or swimming.  Or exercise that doesn't raise your heart rate as much because you aren't as upright.  Like a recumbent bike or swimming.   Maybe just do the more strenuous exercise every 3rd day?

I think even people without our issues can wear themselves out and feel tired for days after a heavy workout and feel better after resting for a couple of days. 

I would think it shouldn't have to be all or nothing. There are a lot of ways to exercise that don't involve marathons.  

 

[green]

You know what hasn't helped? Sometimes I use my infrared light on my legs to try to enhance mitrochondrial function. And this, does not seem to help.

Gah!

[Chaos]

Same thing here.  Any exercise, but especially cardio type exercise like walking or swimming definitely results in PEM for me. 

With the IOM report, this is now a cardinal symptom of ME/CFS. 

I love to exercise so this being sedentary is killing me.  But when I fell better, I immediately want to start exercising again and as soon as I do, I am back to square one.

NIH is starting to look at this symptom so hopefully they will get some studies designed soon to figure it out.