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.

Frozen Shoulder

Samantha Goldman's picture

Topic

I have PXE and was diagnosed in my 30s.  I am now suffering with my second frozen shoulder.  I am wondering how many other PXE'ers have experienced frozen shoulder and whether this is connected or an anomoly.  Due to previous retinal bleeding I am not taking any anti-inflammatoeies or pain killers so living with chronic pain isn't fun!  Anyone else suffer frozen shoulder and how did you cope with the pain?

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Josanne McLean's picture

I've had a frozen shoulder for the last year.  I had a steriod injection and prescribed physio which didn't help at all.  I finally got a formal physio assessment which identified that the pain was not caused by the shoulder but issues with my neck.  I have had 4 sessions of physio where my neck and spine have been manipulated and for the first time in over a year I am pain free!  We are still working on the shoulder to return it to full mobility.  It had reduced to around 30% range and is back up to 90-95% range.  Ultrasounds should there was no calcification in the area so I don't attribute it to PXE.  But the stiffness of joints is possibly a higher risk factor for us pixie's?

Stacey Mokalis's picture

had a similar problem with my shoulder but after physio sessions was much better.For the past two years though I have a problem with my thumbs.Both are stiff and they hurt me.Does anyone else have a su

milar problem?

Christi M's picture

Agree.  Same drama.  PT for 4 months.  Dr even added Botox in December.  I am using a posture brace in the arms, shoulders.  Mine does stem from nech and base of skull.  Super painful.  

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