PXE International promotes research that is driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a research study on nutrition and exercise.

exercise recommendation

nini's picture


Hi I am new to this forum, I have extremely weak muscles, legs feel like lifting stone to lift and very sore - just had my heart and eyes checked and so far so good - my doctor recommended I start excercise, I have booked into a pilates class this evening - do you think I will be ok to do this?? or should I start by walking first? really confused and scared scared to start because of the pain I am going to feel after.  I still work full time (it is a struggle sometimes) but my doctor keeps pushing me to keep going!!!  



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Alex's picture

Yes, it's exremely important that you get exercise.  Most important is cardio.  Try to get your heart rate up.  Keep track and make a goal of how high you want to get it (depending on your age) and for how long and then keep increasing it.  Get a heart rate monitor to keep track.  You just have to keep going and then you won't fear the "pain" you will feel good about your muscles getting stronger and know that you are making progress.  Pilates is great for core strength but if you have limited time, walk or use an eliptical or swim but just get your heart rate up.  Talk to your doctor abourt what is a good goal  for your heart rate and then work up to 150 minutes a week.  Try to switch your fear of exercise fear to a fear of being unhealthy!

Josanne McLean's picture

Welcome!  Walking is very good for us PiXiE's.  It's free and can be done anyway for any length of time.  If you are struggling with pain, it can be very daunting just leaving the house to take a walk.  So I recommend looking up Lesley Sansonne on youtube.  She has some excellent walking routines that can be done in your living room.  They give a brilliant cardio workout but you have the ability to stop as soon as you need to!

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