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Pain and swelling in hands and feet

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#1 nan


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Posted 18 June 2009 - 07:03 AM


I had my check-up yesterday at Johns Hopkins. I told my doctor at this point my main problem is horrible pain and swelling in hands and feet. I was diagnosed with CREST without the S in 2006 and Sjogren's. I also have fibromyalgia. I can't do antiinflammatories or prednisone due to GAVE. She said that it could be a fibro flare because all tenderpoints were sore. I also have some mild pitting edema. She said to watch my skin closely because swelling and pitting can be a precursor to the skin hardening. At that point she said that she would be more aggressive in my treatment. I told her that I didn't plan on the skin hardening happening. She laughed at that one. For those of you with skin hardening how did it start? I know it happens differently for each person.

Take care,


#2 Shelley Ensz

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Posted 19 June 2009 - 04:12 AM

Hi Nan,

I think it was pretty savvy of you to plan on skipping the skin tightening. That would seem to me to be a pretty fair trade-off for watermelon stomach, alone.

Sometimes swelling is just swelling, due to many things including medication side effects or too much salt in the diet. And sometimes it is a phase of inflammation that precedes skin tightening. So do keep an eye on it, just like she advised.

However, I think you should stick to your original plan, to skip the "S"!
Warm Hugs,

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#3 Kathy D

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Posted 19 June 2009 - 08:03 AM

Hi Nan,

I am new to this and it appears pretty early in the disease. I have one patch of thickened skin between 2 knuckles and it is growing slowly. It appeared out of nowhere.........

My hands and feet have been very swollen for 9 months now.

I am concerned about my fingers and knuckles though, from the last joint to the cuticle on all of them and across my knuckles is now smooth and shiny. My cuticles are all red from tangled upset blood vessles.

The pads of my fingers are thick and hard from slow healing dead skin from digital ulcers I got last december (before I was diagnosed), but as they heal my fingerprints are returning:) didn't realize it would take 6 months for the ulcers to heal, will never help stranded motorists in the snow again but instead call for help and preserve my fingers:)

Cheers to skipping the "S"

Diffuse Scleroderma Diagnosed March 2009

#4 nan


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Posted 20 June 2009 - 05:51 AM

Shelley and Kathy,
Thanks so much for your replies. Shelley, I have been fortunate with watermelon stomach so far. I have only had two major GI bleeds since it was diagnosed in 2004. I have only had two anticoagulation plasma treatments and for the most part I am stable. YEAH!!!!!!! I know some people have to have the treatments monthly and get transfused also. They also have trouble keeping up the hemoglobin. So I feel very blessed.
Have a great day!

#5 betty32506


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Posted 20 June 2009 - 06:04 AM

I have been chasing swollen legs, one much worse than the other, for months. My Rheu is hesitate to put labels on me. Yesterday I had a sonogram on both legs I think to rule out heart problems. I don't have the results but the tech told me when she finds something bad they do not let the patient leave. So I guess that most likely rules out heart. :) But still what is it. Not only do I have swelling but it is discolored. I have Raynaud's but this is different looking. I also have PN. Mostly I have pain in my feet. :( I did not know about sclero and swelling and such. I don't know the source of the pain. Sure wish I did. I hope you can get a handle on your swelling and pain.

#6 Margaret


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Posted 20 June 2009 - 06:24 AM

<<I told my doctor at this point my main problem is horrible pain and swelling in hands and feet. >>

Hi Nan.....I am sorry to read that you are in so much pain. I wish there was something they could do for you. Would the stem cell transplant help you or is that not an option? I will keep you in my thoughts.
Take care, Everyone.

#7 Amanda Thorpe

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Posted 21 June 2009 - 02:30 AM

Hello Nan

Swelling of the feet and then the hands was one of the first symptoms, that an a waxy patch of skin on my shin. It was only a few months after the swelling that the hard skin came and to date has not left although it has softened in places. I didn't realise that once the hard skin began to wane that it could come back again! :huh: Yeah, well it had better think twice about returning to the places it's left matey! There's no room at this inn.

Take care.
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