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My Mom Has Scleroderma


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#1 sharon

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Posted 30 November 2006 - 12:19 PM

Hi,
I wanted to talk with others that are going through the tough times, and understand what you are talking about when you say the word scleroderma. My Mom was diagnosed in 1999/2000. She had it mostly in her hands and to her feet. Was put on d-penn right away by Dr Medsger in pittsburgh. She has been doing pretty well up to this year, she just retired in August from the Post Office and around Sept. she started to notice symptoms again. She since has had tightening in her arms, legs and stomach. She had kidney problems, and was in the hospital and put on meds to keep the blood pressure down to help with the kidney. They stopped all her other meds for now till they get the kidneys and blood pressure under control. Since, she has been having terrible pain in the knees, ankles and her elbows. Tired and loss of appetite.
Has anyone experienced a " flare up" like this after many years? Can stress cause things to act up? She will be seeing the rheumatologist & Medsger next week, but she is only taking Tylenol for the pain now.
Can the diffuse form come back so strong like this & is there a period the pain may subside and the skin may soften?
I know this is long, but I would love to hear from others!
THANKYOU!
Sharon

#2 Sweet

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Posted 30 November 2006 - 01:02 PM

Hi Sharon, *hugs*

Welcome to the board. I'm really sorry to hear that your mother is suffering so. Kudos to you right off the bat for trying to find more information in order to help her, you, and other family members. Knowledge of the disease can really help you through the rough times.

First I want to give you a link to check out. It will give you basic information about scleroderma itself.

What is Scleroderma?

Next, you've asked some really good questions and I'll try to answer a few of them. I'm sure others will chime in that have had similar experience as well.

It is possible to "flare up" after any given amount of time, so don't let this alarm you too much. And YES stress plays a large part in it. I can't stress enough how important it is to have her rest, and keep her stress level down. And again yes, the skin can soften over time. So, take a deep breath, realize you are among friends here and we will help you in anyway we can. We aren't doctors by any means, but we're here to support you.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 janey

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Posted 30 November 2006 - 01:38 PM

Hey Darling,
I'm sorry to read that your mother is starting to have new symptoms after having had a few years without them. However, as Sweet said - don't let this alarm you. There are so many new treatments that weren't around 8 years ago that could help your mom today as the d-penn did back then. Has she gone back to Dr. Medsger? I'm sure he is on top of all the new stuff.

Sweet is so very right - stress plays a large part in this disease. In fact, it is believed to be possibly a contributing factor to the onset of sclero. Here is a link to some information on Causes of Scleroderma: Stress.  I love the one about Drinking Black Tea may soothe stress. I used to drink a lot of green tea and now I alternate it with black tea especially if I'm doing something stressful. It may all be in my head but it seems to work.

I certainly hope that they find something to pull your Mom out of this flare up. Please keep us informed on how she is doing and please - do not hesitate to visit us any time, ask questions and just reach out to your new friends for a hug.

Welcome to the forum Darling!

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)