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Calcinosis and sclerodactyly

Any advice on this?

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#1 marlene

marlene

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Posted 24 October 2011 - 03:48 PM

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

#2 Amanda Thorpe

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Posted 24 October 2011 - 04:06 PM

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
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