Exercise Intolerance and PNH

[eyennyGlimmer]

I was wondering I am really sore all the time, arms, legs, back, shoulders..ok ok my whole darn body..Anyway I read this article and this is what it says

Exercise intolerance may also be observed as a physical aspect of PNH. This might become more evident when constant twitching is focused in and around the larger muscle groups. This persistent activity would in essence, subject the muscles to a form of perpetual self exercise, uninterrupted by the required rest that is necessary for the muscles to function normally. Therefore this would leave little capacity for the extra workload in the form of physical exertion. Add to this the problem with fatigue in the form of permanent tiredness and it would seem natural that the body was unable to tolerate exercise.

I feel bad if I workout...I don't want to put my muscles through anything more. Is it ok to workout. I am one of the ones that has constant movement, pretty much through whole body and I hurt from this. Today I am so sore and I have had those small twitches running through body for days. What do you guys think, should I workout still????..Jenn

 

[CandyM314]

Jenn

I teach middle school kids, mostly English and drama but have one day a week teaching physical education

On Friday, I got the kids warming up, stretching muscles very carefully and slowly and then did some general pulse-raising activities

I woke up yesterday morning as stiff as a board! Could hardly move my legs, my arms felt like they had seized up, even my toes were painful!

Now I'm someone who has run for most of my adult life and like to consider myself fairly fit.

I guess you just have to follow your body's lead. Mild discomfort is normal after stretching your muscles, pain isn't

Take care, Julia

 

[Carrilicious]

Jenn,

I too think about the whole catch 22 thing when I work out.

Everyone says continue doing what you did before but I don't feel like I did before. I do notice that when I exercise I am extremely twitchy and nervy. Everything feels like it's firing away. My muscles are also very sore. Maybe though with time it will subside.
I can continue to sit on my butt and pay attention to my twitches or I can work out for a couple of hours, forget about my twitching them come home and focus on them again. )
One way I'm going to be big as a house the other I'll be an in-shape twitcher.
Which evil it greater? My hubby might rather the second of the two.

Carri