Scleroderma in feet

Anyone out there live with scleroderma in their feet? My feet are swollen and ankles tight.

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My feet are definately affected. The second toe on my right foot has contracted. The top of my right foot feels very tight and sometimes bothers me when I walk. I take lasix (40mg) daily and I think my ankles would be more swollen if I was off of this med. Have you been checked for pulmonary hypertension? I have had it since 2004 and one of the first symptoms was mild shortness of breath and swollen ankles.

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I was just released from hospital for pnemonia and a pulmonary embolism, much to my suprise. On a lasix for 10 days. Bad news is skin on ankle is tight tight tight . Both feet are swollen and tight. Will check on pulmonary hypertension........They did a heart test on me in the ER and it was fine....
Thank you for your input.

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My feet were very painful every time I went for a walk for about a year before I was diagnosed. One ankle felt sprained for months. My shoes did not fit right around the toes. I didn't realize that my feet were swollen because it happened over time.

Now I know because the swelling has gone done and the pain is greatly reduced most of the time.

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Hi Debbie-G,
My feet were one of my first complaints, which started years ago. I have no fat pads left on the bottoms of my feet and havent since I was in my 30's. Can not go without shoes well padded. My feet hurt everyday, all day long. They will feel swollen, like the laces on my shoes are tight but will not look swollen. My ankles will also feel tight along with my toes and my lower legs. I walk like herman monster, or at least feel like I am. It will be worst if I sit for a while and get back up, then my feet and legs are worst. I now have the tingly, numb, aching going on all the time too. Such fun. Last year at this time my ankles were much worst, felt like they were sprained. They have been a little better since starting my meds for the scleroderma.
Susie

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I agree, hard to get going but once your are moving things are fine! Unfortunately we do have to stop to drive to the store, sit for a few minutes! I find that at first when I start to walk, I am unsure about being stable and when I think I am some wierd sensation happens. I tend to walk on my heals for support at first. Hard to manuever sometimes with swollen hands and feet!
Thanks MaggiMay and Susie

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DebbieG,
Do you have a pulmonologist? If not, I think you need to see one who knows about pulmonary hypertension. My heart is ok, it's the pulmonary pressures in my lungs that are too high. I go to a PAH support group and I've heard that PAH is often completely overlooked in the Emergency Rooms. I'm still on lasix and two PAH meds and will be long term.

Ten years ago when I first had swollen ankles, hands and was short of breath, I had no idea I had a medical problem: scleroderma and then PAH. I was working full time and had a child at home. I thought if I got more exercise, lost weight, and took a little better care of me I'd be fine. It wasn't so simple...

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Appreciate it. I will check it out.

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Yes I have it on left foot. Swollen, tight, hard, thick and itchy.

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Debbie, Yes, swollen feet were among my first symptoms, way back in 1985. The EKG was always fine. Since it never was followed by skin hardening, I've come to the conclusion that it was due to my heart problems which were finally diagnosed by echocardiogram just over a year ago, And apparently now I also have at least exercise-induced pulmonary hypertension, probably due to that heart problem. See this article on the heart problems that can go along with scleroderma: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2361099/ .

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I don't have the swelling but I do have the loss of padding on my feet. The skin feels tight and dry and it feels like I'm stepping on marbles. Ouch! And like you it takes about ten steps to get going once I'm on my feet and I'm not stable either. (I always wonder if people think I've been drinking!)

Glad to know I'm not the only one with these challenges!

Love,
G

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Oh yes, both my hands and feet were so painful and swollen until they didn't even feel like part of my body. My feet, ankles and lower legs looked deformed. I could only wear house slippers, which helped, but didn't help with the pain that I got when I had to put weight on my legs and feet. In addition to the pain, my feet (and hands) would turn beet red and so hot until one time I actually open my sliding glass door and stuck them in the snow, which did feel really good until the Raynaud's pain took it's place (...not fun at all...LOL) Only after several months of being on my treatment plan that they have gone down, I also take Lasix every other day to keep the edema under control. When I start retaining a lot of fluid I have SOB.

I kept my feet moisturized with Shea butter and Cetaphil cream to help with the tightness and and tried to elevate my legs as much as possible.

Best of Luck to you!

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yes, my feet are affected...

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My Sclero started on my right foot, so it's been there almost my entire life. Can't remember what the symptoms were then since I was so young.

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The first symptom I noticed was swollen ankles over 3 years ago. My feet would often hurt when I walked. Now my feet are very dry and dark brown. When I have shoes on, they are often prickly hot on top and sometimes feel cold at the same time. I suspect the scleroderma was active before then. I have had a cough for about 5 years that won't go away. After seeing several doctors, I was told it was caused by acid reflux. I never really had much problem with heartburn so I found that diagnosis a bit hard to swallow, no pun intended. Now I think it makes sense.

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Hi Debby-G,

Oh yes, my feet are definitely affected. They are swollen, bright red and brownish, tight, and so stiff I can hardly walk because my ankles and feet won't bend. I too look like Herman Munster trying to walk after I've been sitting for a while. I try to keep my legs elevated as much as possible but I'm a really hyper person and I have a hard time sitting still for long. I sometimes take Lasix for the swelling but it doesn't really help that much. I feel like I'm stuck with this problem as nothing helps.

I'm sorry to hear you have this problem as I know what a pain it is.

Kathy

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3 of my toes are crooked and have hard red knots on the knuckles. I also have a blister on my one foot that will not heal. It's been over a month and just gets deeper and deeper.

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When people ask me when I was diagnosed with scleroderma I realize my feet were the symptom of the desease and this was 11 years ago! I wasn't officially diagnosed until 3 yrs. ago when I had the same symptoms in my hands and my arms started hardening. When I went to doctors regarding my feet long ago they could not find any explnations. They are also dark and stiff, cannot go without shoes! Good Luck out there!

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A big yes

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To what do you contribute your symptom-free feet? My feet and ankles are so swollen and tight that I can hardly walk, especially after sitting for a while, getting up from bed is absolutely a nightmare!

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I have it on my left leg, linear morphea.above my ankle is sunk in, used to be discolored. The top of my foot has a patch that seems still active the hardening is faint but there. Ive had it since elementary.

I to this day have issues with my foot. It'll swell, no injury required, it'll turn pinkish, and feel like I have a sprained foot. Then if I keep walking on it ive ended up with a hair line fracture. Its not fun, and you are not alone.

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