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marlene

Calcinosis and sclerodactyly

2 posts in this topic

Hi Guys,

 

I am starting to suffer quite badly with both of the above. I have the calcinosis on both knees which is painful and is restricting my movement a lot, and it's on both elbows, pelvis, nose, wrists, knuckles and bottom of my spine. The knees and elbows are close to growing through the skin.

 

I am taking really bad with the sclerodactyly as this is progressing at an alarming rate. The physio and the rheumatologist seem shocked at how tight the skin has gone is such a short time. I can no longer grip anything in my right hand.

 

Any advice?

 

From Marlene

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Hello Marlene

 

I am sorry about the calcinosis, I don't have this so can't comment but do know many members having to cope with it and they will no doubt join in. From what I understand it's not a nice thing to have and can be very painful.

 

With regards to the sclerodactyly I can't sugget anything other that what you are already doing. Having sclerodactyly myself I do know what a hinderance it can be and the only thing I could do about it was to come to terms with it. My hands are now deformed resulting in limited mobility, whatever I may feel or think about it makes no difference to this fact.

 

Like most things with scleroderma I thought it would be the end of the world if "it" happened but when "it" happened it wasn't as I adjusted. Over the 4 years I have had scleroderma "it" has been many different things, from sclerodactyly to ulcers, and each time "it" happened I adjusted, I had to.

 

Get a catalogue from a good mobility shop and have a look at the various aids that are available for people with limited hand mobility, every little helps.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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