Joanne


I just discovered this site, and have been reading voraciously. My name is Joanne and I am 49 years old, married with two grown sons and a baby grandson. I've always been active and am told I look "young" for my age. I wonder why.

I've had Raynauds for 14 years, followed by a diagnosis of CREST about 6 years ago. I was hugely fortunate to see a wonderful Rheumatologist who immediately recognized two of the five conditions and who took the time to help me understand it. It turned out to be more information than I cared to know but I'm grateful to be informed.

Like some of you, I had seen part of a movie based on the life of Bob Saget's sister. She had Scleroderma and it absolutely terrified me. I remember thinking "That's the last disease I would ever want", and when I heard my diagnosis I was stunned. However, I count myself blessed because I so far am dealing with (I think) just three of the five -- Calcinosis, Raynauds and Sclerodactyly (with possibly the beginnings of esophegeal disfunction).

I have one finger with a large calcinosis lump. It has doubled in size in the last year and is now causing numbness and pain as it spreads. Sometimes I wish I'd taken the chance and had it removed when it was smaller, but with a history of not healing well and my Dr.'s concerns I decided to leave it. I am now waiting for a referral to a surgeon to see if anything can be done. How large can it grow? Anyone have a similar experience?

The Raynauds is a daily problem affecting mostly my hands, but also my feet in extreme conditions. I was initially told it was nothing, just an inconvenience. But over the years it worsened and I was referred to my Rheumatologist who then prescribed Adelaat XL which cut the episodes by about half. Like everyone else, I layer and bundle, often looking pretty ridiculous. I cope with reusable "hot pads". They come in a variety of sizes and shapes, but I use the smallest 4" x 4" type. I use them year round, tucking them into mitts on cold days, whether it's spring, summer, fall or winter, as my fingers don't seem to care. I highly recommend them. My niece discovered them by chance at a sidewalk sale thinking they would be great for my sister (who suffers from Sjogrens) and for my cold Raynauds hands. I've ordered them ever since. If anyone is interested in having a look, the website is www.thermo-pad.com.

The Sclerodactyly was diagnosed when I was referred to the Rheumatologist a second time after complaining of thick, swollen, "sausage-like" fingers in the morning. It took him no time to recognize the thickening skin. The skin on my fingers is stretched and tight, and sometimes splits at the joints, especially in winter. My forehead has smoothed, some of the furrows between my eyebrows are gone, and I don't have the same facial lines as others my age. Just recently I've discovered I don't have the normal elasticity of skin in my torso which was something of a shock.

I have had precautionary pulmonary function tests and CAT scan of my chest so any changes in lung function can be monitored. So far, normal. I have the beginnings of osteoporosis so I started going to the gym in fall to try to remedy that and keep my heart and lungs in the best shape possible. I am about to try Pilates to try and maintain and hopefully regain, some flexibility. I see some of you try massage therapy which seems to make sense.

Recently I've been plagued with sporadic itchiness which sends me clawing skin to the point of breaking it. An allergy pill helps relieve that but sleepless nights are the worst. I try not to use an actual sleeping pill more than once a week and use a low dose Trazadone other nights with little success. I sometimes wake up with a parched mouth so am being monitored for Sjogren's.

I read some of your many stories and see that my symptoms could be far worse. I thank you all for sharing your stories and shedding light on this very uncompromising disease.

Email snofvr@telus.net
  

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