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Swelling Ankles And Feet, Please Help


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#1 kks

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Posted 21 June 2007 - 06:15 PM

Hello, I am a new member, however, I was previously a member three or four years ago, but had to resign because I could not remember my username or password.

Anyway, I have swollen ankles and feet with pitting and am wondering if this is a common symptom with any of you. I have not been officially dxed with sclero at this time but I do have a lot of problems: hyper thyroid with goiter, gastroperisis, acid reflux, constipation, ulcerative colitis, joint pain, numbness in hands, weakness with continued use, heel pain, thickened fingers, and now this swelling. I think that is all, hum.

I would like to know if this swelling of the ankles and feet is common with anyone here that has sclero.

It is nice to be back on board.
Thanks
Kimberly

NOTE: I found my old account, so you can contact me as kks - see reply below.

#2 Elehos

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Posted 22 June 2007 - 02:08 AM

Hi Kimberly,

I do get the swelling of the ankles and feet, and when it's bad, the pitting starts. Sodium worsens it for me, and when I lay down at night I can tell how much water I've retained by the number of trips to the bathroom! It sounds fairly common with most of us, but others can chime in and let you know their experience too. I'm sorry you haven't received an official diagnosis yet, but hope you get one soon, and also have a doctor that can help you with the symptoms!

Best wishes to you, and welcome back!

Elehos

#3 janey

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Posted 22 June 2007 - 03:52 AM

Kimberly,
Welcome back to the forum! We're glad to decided to join us again. I'm sorry you are having to deal with so many issues. I know it's frustrating not to have a diagnosis with so much going on. Are you seeing a rheumatologist? What kind of tests have you had thus far to help determine what you have?

In reference to the swollen ankles and feet, there are a lot of things that can cause that - obviously water retention, but also kidney problems and heart problems. If you don't see improvements or it gets worse, I would definitely see your doctor and have it checked out.

Please keep us informed on you are doing.

Big Hugs,
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Sam

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Posted 22 June 2007 - 04:59 AM

Yes I get that too, I take a diuretic for it. so maybe you should call your doctor and get on one too. Glad to see you joined again. Sam
Sam

#5 Sweet

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Posted 22 June 2007 - 09:53 AM

Hi,

Welcome back!

I do have swelling but not sure if it's sclero related. I take a diuretic about once per week. I don't have the problem everyday, it seems to build up.
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#6 kks

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Posted 22 June 2007 - 10:26 AM

Janey, thanks for your response. Yes I do see a rheumatologist. Have been for about 4 years now. He says I have UCTD and could be sclero due to the fact that my fingers and feet are really thickened. I have had lots of tests done. SCL70 has always been negative. My CRP and SED rate are elevated slightly from time to time. To diagnosis the ulcerative colitis, gastroperesis, tests have confirmed those. I had one positive ANA, but others since are negative. I had a biopsy on my thickened finger and it showed slight changes with scar-like fibrosis but not enough for a diagnosis. I know I have sclero, but I still want a confirmed diagnosis! It is painful on a daily basis. You know how it feels when you exercise or do work that you are not used to and then the next day you pay for it with pain and soreness . . ., that is how I feel most of the time. Don't get me wrong, I am not in that bad of shape, or I know it could be a lot worsel I want a confirmed diagnosis for all those non-believers. One of my best friends does not believe there is anything wrong with me. She does not want to hear about my health problems. That really hurts and just lately I have realized that she isn't as good of a friend as I thought she was. If she was, she would want to know how I felt! By-the-way, I am 46 and have been on disability for 2 or 3 years now.

I really appreciate this site and hope to hear from others regarding swelling of the feet and ankles. It does sound like it is a part of sclero. Thanks to all responses, I really appreciate your responses!
Kimberly

#7 Elehos

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Posted 22 June 2007 - 02:36 PM

Hi again Kimberly,

It's frustrating to have people you love not want to hear about it, but some people just don't know how to deal with a chronic condition, and since it's so unfamiliar to them, it's hard for them to believe that someone can always have something going on with their health. I'm so sorry that your friend doesn't believe that the diagnosis of UCTD means anything, even with medical proof. Although you want a diagnosis that's more definitive, at least the doctors aren't saying you're a hypochondriac and sending you to a shrink, which would be worse than just a friend being in denial. There are others that have gone that route with doctors, and although mine never did that, I was puzzling for a while, even to myself!

Hang in there, and keep in contact with all of us here--you'll definitely find that it's like a second family, and what others might consider "complaining" isn't taken that way at all. Actually, talking about your symptoms helps the rest of us out since we don't feel alone, and hopefully you won't either.

Best wishes to you,

Elehos

#8 Piper

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Posted 22 June 2007 - 03:32 PM

Hi Kimberly, Welcome Back!

I just wanted to say that I know how you feel. :( I've been in this limbo for a long time too. It's a nightmare to not feel good and not have a diagnosis or be believed by friends or family.

UCTD is a real diagnosis. I don't even have that. My Dr. calls mine grumbling disease but now that my ana pattern has changed to speckled & nucleolar I believe that I'm inching closer to a diagnosis. I hope!

Hang in there and be good to yourself.

Hugs, Piper

#9 bookworm

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Posted 23 June 2007 - 08:14 PM

Any doctor who told me I had "grumbling disease" would no longer be my doctor.



Mary in Texas

#10 relicmom1

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Posted 25 June 2007 - 07:29 AM

Hi Kimberly!
I'm sorry your friend has turned out not to be the friend you thought they were. This disease is an "invisable" disability. Most of us look perfectly fine to the world, however WE KNOW how we we feel. I know the heartache I went thru as I had to stop doing things the way I used to. As my "name" says, I'm the mom to everybody. My kids' friends have always considered me to be their Mom#2. I had (and still have) a mini van and when my kids were too young to drive I was thie one with the van load of kids going any and everywhere! A lot of people would say " I don't know how you can staned to go wth all those kids where you go". My answer to that was always, well, I KNOW where MY kids are and WHO they are with and WHAT they are doing, can you say the same about yours? That ususally put an end to it. Theyare now 17 and 22 and even though they don't need the chaufeer (?sp) I STILL know where they are, my "adopteds" still keep in touch with me and come by to see me. My family knows how bad I feel and they do everything they can do to help. Most of my "friends" have also gone by the wayside. I finally had to give up working in 2004 and I don't honestly know how I kept working as long as I did. As for the original question you asked, I have terrible swelling from time to time. I have some swelling ALL the time and I'm on a diuretic rx for it. The swelling is from my knees down and my hands/fingers. Hang in there!!
Peace :)
Barbara aka relicmom1