PXE Leg Pain Study

How does exercise impact the pain of intermittent claudication (lower leg pain)?

Through PXE LAB, Facebook, and email, many of you expressed interest in understanding your leg pain better – those calf cramps often caused by exercise for people with PXE. This is called intermittent claudication, which is one symptom almost everyone with PXE experiences but has not been widely studied.

Let’s design a study to figure out how to improve leg pain!

What “treatment” should be tested in this study? What do you think would lessen the pain of intermittent claudication? Running more often? Walking a few times a week?

Share your ideas and comment with what has worked for you!

If you’re someone affected by PXE, you can be part of this study. We want YOU to plan this study with us! If you are interested in becoming part of the Leg Pain Research Team to plan this study, email Eliza at eduvall@pxe.org.

Ideas (10 total)

Displaying 1 - 10

Vibration Plates

Josanne McLean's picture
Increases blood flow and builds bone density

i have used vibration plates at the gym, which I also felt helped.

They increase the blood flow and also increase bone density so I can see this being very beneficial for PXE with the wrongly processed calcium factor.

Rolling

Al Ditheridge's picture

Has anyone though/ used a rolling teqnique to help relieve the pain and aches? There are all sorts of implements available and they certainly help to relieve muscle sorenes. Would the process of rolling help to break down/ relieve claudication?

Yoga

Robyn Matthews's picture

yoga has helped my vascular claudication immensely. And by yoga i don't mean crazy yoga. Just simple stretches but doing them daily along with some simple inversions. 

tried many things

from quebec's picture

I have tried a lot of ideas and still am working on it, so far all I found that works is having a friend or someone at least doing pressure on ym legs like a strong pressur and a warm  heating pad. I can't walk long it increase the pain or stand long it makes it worst. I can't walk long distance. Exercise for me is not an option. So only thing I found was to reduce some fo the pain is pressure and also some medicinal maryjuanah, I got a prescription.

Statins and Walking

Josanne McLean's picture
Walking proven to work for PXE.

I got down to about 70 meters walking before onset of pain.  I was referred to vascular surgeons who diagnoses the intermittent claudification at age 32 despite having the symptoms since early childhood.  Surgeons weren't interested but did refer me to a Chemical Pathologist who started me on statins.  I have been through most of the statins available (Pravastatin, Simvastatin and now Atorvastatin) but have only ever been able to tolerate the lowest doses.  With Atorvastatin being taken at 10mg 3 times a week, as anymore I get accumulative build up of side effects.

Distance runner

Littlenatt's picture

i have always engaged in sport and continue to do long distance running. I am 61 years of age and was diagnosed with PXE when I was 25. I do get tired legs at times, and consistent leg cramps at night or when stretching. 

Work out

Beverley's picture

When I work out, especially, walk or run on the traidmill I feel less pain. When I feel the pains I know I miss my workout or I forgot to take my magnesium. I take the daily dose of magnesium and I have no cramp.

Walking the pups

doublescorpio's picture

I walk my two dogs about 4 times a day usually at leas 1/2 mile each time.  I didn't notice any difference between when I started and when the leg cramps started.  However, I've always taken a potassium supplement.  I was taking 2 a day NOW I take 4 a day.  two in the morning and two at night.  Taking 4 seems to have helped a LOT and the leg cramps have for the most part stopped.  Just a few times a week, I get the start of a cramp - the worst are in my upper inner thigh and are so bad  that I couldn't walk!    This is one of the most painful parts of PXE.