PXE LAB

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.

Running hurts!

Elizabeth Terry's picture

Topic

I was diagnosed with PXE when I was 5 and have always struggled with my weight. I used to try to get fit by running. I wouldn’t last long because of really severe leg pain. I learned that it was called “intermittent claudication” and it was caused by PXE.

I used to run with my friends and last about 5 minutes because the pain was so bad. It was stop me in my tracks on the treadmill. A few months ago I decided to sign up for a Half Marathon (Disneyland! Best motivation right?). I started running to train for the marathon. It hurt. I decided that I wasn’t going to let it stop me. I kept running and it kept hurting. Until one day I could run without pain! It was amazing. I actually ran 10 miles last weekend!

I think it would be amazing if we could do a study about exercise and how long it takes to be pain-free while running/walking.

Have you experienced leg pain while exercising? Have you noticed it go away? I’d love to know more!

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Sharon Terry's picture

This is a great question.  I know many other PXEers have complained of pain in their legs - have any of you gotten through the pain and how did you do it?  How long did it take?  Thanks all!

animal's picture

I started jogging last year and had pain in my legs too. I kept going and after 3 months, the pain disappeared. I run approx 7km three times a week and I am fine. I also used to have injections in my eyes and became vegan a year and a half ago and since then have had no need for any injections, plus my meals are completely guilt free :-) As an ex smoker (which is super bad for us), this has been great news for me!

Elizabeth Terry's picture

Thanks so much for your comment! Would you mind sharing your Veganism with the main discussion? Just say "share your idea" I'd love to get some discussion around plant based diets. Also the smoking thing! We can all be reminded of it's dangers. Thanks again for sharing!

animal's picture

Just shared in the vegan thread :-)

Stacey Mokalis's picture

How many times were you injected in the eye?I live in Greece and I delayed getting the injection.My doctor suggests I get another shot in the same eye four months after bleeding occured.Did you do something similar?

H

animal's picture

Hi Stacey, 

I had two courses in my left eye and one course in my right. My doctor does one injection every four weeks (three times), then out to six weeks, eight weeks, ten weeks (a couple of times for each) and then stops and checks to make sure everything is "dried up". Hope this makes sense.

Stacey Mokalis's picture

i again!Thanks for answering.I live in Greece and things are a bit difficult.I am South African.I never had any problems with my health I think because as a child didn't consume dairy products..I love fruit sad be goes!I am a teacher and I had a lot of pressure last year and I think that led to the bleeding.Do you feel stress worsens your health?

Alex's picture

Hi, I live in America.  I have decided to only get shots when I see a change or the doctor sees a change.  I see the doctor every 6 to 7 weeks on average.  Right after an injection, I might see the doctor after 4 weeks to see if I need another.  I don't think there's any research that shows that a series of shots prevents re-occurrence.  So, my doctor and I take a watchful waiting approach.  My theory is that while the shots stop bleeding, they also can inhibit the healthy state of the retina in general as it inhibits some of the growth that is necessary for the eye.   I've had injections since 2004 and probably have had 25 to 30 shots. So far, this has worked well for me.  I am visiting Greece again this fall.  What a wonderul, courageous country.

Stacey Mokalis's picture

Hi! For  some  reason  I  had  not  seen your  comment! Have  you  lost  your  eye  sight ?I  had  an  eye  bleed for  the  first  time  last  year  and  I  have  lost  partially  my  eye  sight  in  that  eye.Have  the  injections prevented  eye  bleeds  in  your  eyes?

Josanne McLean's picture

Exercise definitely improves the pain of intermittent claudification.  My ABPI's have improved 2 years running.  I have improved enough to consider running but am worried the impact of running will have a negative result on my joints.  I have always had weak joints, straining many ligaments over the years etc.  How are your joints feeling after taking up running?

Anne's picture

I have been running for years and only now I am running less due to winter time and a bit of older age.  I exercise daily and do all that I want to do.  I was told not to lift heavy weights.  If you find the type of exercise that works for you it will reduce your pain.  I often wonder what part of pain from over doing exercise is just that and what part is a result of having PXE?  

It seems my pains from exercise are not unique to me, others expereince the samethings and do not have PXE. 

 

Kirk Waters's picture

I would like to do a research study on "The number of PXE  people who are children or Grandchildren of Vietnam/Korean veterans  that where exposed to early military chemicals like  "Agent Orange"Has anyone done a a Quantative study to see any relevance?

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