Advocates on Steps of Congress 2013
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Diagnosed at Age 67

Diagnosed in 2014 at age 67. Happy with my rheumatologist. Hoping to connect with others who were first diagnosed over 60 and to share stories/symptoms.

I was diagnosed with scleroderma this year (2014) at age 67. I have had breast cancer twice with a lumpectomy and radiation for the first time and the second time decided to have a mastectomy and autologus reconstruction surgery to avoid more radiation. That was in 2010. In 2011 after working hard to get into shape, I walked across Spain on the Camino Frances for 25 days of walking with a 20 lb. backpack. Due to time constraints I had to bus it part of the way, but ended up walking 2/3 or the 800 miles. Now, I am back to doing little exercise. I don't sleep well and have gone through knee pain with PT and it disappeared, then lower back pain with PT. I still have that, but don't know if any of this has anything to do with scleroderma.

This past year I noticed the bottom of my feet turning purple if I sat for any length of time at my computer with bare feet. Then my fingers swelled to where I could no longer wear my wedding ring or any other of my rings. Reynauds caught up to me this winter and I suppllied myself with gloves for the car, when I sat and watched TV and in my coat pockets. I also purchased those hand warmers which helped a lot this cold winter.

I am fortunate to have been referred to a wonderful rheumatologist in Richmond who knows his stuff and he suspected scleroderma on my first visit given my blood work and the Reynaud's. I had my second visit with him yesterday and with the build up of tissue in my fingers and the red dots on my face and lips, scleroderma is the diagnosis. I do not know if it will stay localized or become systemic. He said to check my blood pressure on a regular basis to see if it spikes. I am also due to get a pulmonary function test and a heart sonogram to see if any problems are starting in these organs. I feel I am being treated in a proactive way, so I am happy with how things are going.

I would like to correspond with others who were first diagnosed over the age of 60 as it seems most folks are diagnosed much earlier.

In the past year I have had sharp knee pain that comes on like a knife like pain and disappears as quickly as it came on. The orthopedic doctor had no answer on this. I liken it to something floating around and it hits the wrong place and then moves on. Does anyone else with scleroderma experience this? I am curious.

I have trouble sleeping as I toss and turn and awaken each time I move. My lower back has pain and I have lower right abdominal pain which is more of a discomfort, but standing and walking irritate the back to the point I need to sit to get relief. Again the orthopedic doctor found nothing wrong.

I look forward to hearing from others and to find answers if possible. I realize each person experiences scleroderma differently and nothing is predictable.

Praying for all those suffering this rare disease to have good care and a good mental outlook!

 

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