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Living with Polyneuropathy CIDP, GBS, & CMT

GBS Respiratory Issues - Will Exercise Help?


#1

Dear Friends,

Out of the hospital for 2 weeks now with a relatively mild case. Nearly impossible to find answers in Vietnam and my searches here and on the web have not ended well.

I feel like my lung capacity is half of what it used to be. A little walking or emphatic conversation leaves me breathless. Should I exercise? Should I rest and let myself heal? Not sure what I should do.

Thanks for your replies and special thanks to Tarhealing for directing me to this site!

Cheers,

MBSaigon


#2

I started working again, just 1.5 hr per day, coaching my swim team. Yesterday my voice felt stronger and I knew it was clearer and I was much more active. I was winded a couple times and sat down to rest. I had 2 groups for 2 hours total and was very tired afterwards. Woke up this morning with slight difficulty breathing and tightness in my chest. Am I overdoing it or is this normal?


#3

My hospital sent me home with an inspirometer and I was supposed to use it every two hours to increase my lung volume. I didn’t use it that often but it did help.


#4

Thanks. I guess I can infer that a little strain and tightness isn’t going to kill me.


#5

I often wake up in the morning coughing and short of breath but it gets better as the day progresses. I have no idea if this is normal or not but its my normal.


#6

I do too Mark. It’s normal for us. Best of luck!


#7

So glad you found the site! Hope everything continually improves. I think you have to gauge your activity carefully. Sometimes your workout is just trying to do a little of what you did in your previous “normal” life. I would gradually go longer or add a little as time went on but my body would quickly tell me when that was too much and I had overdone it. I have tried to stop that ahead of time but I am notorious for missing the mark and paying the price for a couple of days after.

The good news is that the point at which I overdo things is so much further than it was initially. It happens so slowly bouncing back and forth that you don’t even see the progress sometimes until you look back. I feel like most of us have this in common just at different levels depending on the severity of the damage.

I’m 2 years out this week and I never would have believed I could have recovered this well so far. It’s funny how I still focus on deficits instead of what I can do but I like to fix what needs fixing. I feel that exercise should come slowly and not as previously defined. Don’t get discouraged and keep trying like you are doing. You will build back just back off when you need to and move forward again when you can. Good luck with your coaching!


#8

Hi GBSin

I am Vietnamese too. My wife got CIDP two years ago when pregnent. Now she begin to do yoga everyday and it hepls her more heathy. Try to do yoga or taichi or swimming. The free yoga on youtube with Master Kamal. You should try supplement as welk. Supplement helps a lot. Currently we use turmeric extract from Gaia herb . You can find them on amazon.
Best regards