• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
sandra

Achey Joints-

5 posts in this topic

I just want to know with all the ACHEY writsts and ankles - knees hips etc. out there, what is the long term appearance, I don't know and I want to know honestly. Because the aches are continual and it must be doing something in there?Right?

I will have a good chat with my Sclero specialist when I see him next appt. I am strong and not asking this to worry myself, it's more of a worry not knowing the "could be" long term effects or hearing from people who have had this long term. Please I welcome your feed back.

Thanks everyone always appreciate your opinions & advice.

Achey Sandra

Share this post


Link to post
Share on other sites

Hello Sandra

 

If you are asking whether scleroderma can change your appearance the answer is yes, if you're asking if it will change your appearance the answer is wait and see. Not the answer you want but it's the only accurate one because everyone progresses so differently.

 

I have diffuse systemic sclerosis and have tight skin on hands, arms, feet and legs and these parts of my body are disfigured. They may stay this way or improve with time. My mouth is also smaller and my lips thinner, only time will tell if this is going to stay as it is or progress to microstomia (small mouth). Weirdly I'm not as bothered by these changes as I thought I would be at the beginning of my illness.

 

When I first saw my current rheumatologist I asked if it would effect my face and he could not say either way. You see 2 weeks before being diagnosed I saw a film about a woman with sclero who ends up disfigured and dead :crying: so I thought this was where I was headed when initially diagnosed. Needless to say I am alive and kicking as are many other sclerodermians!

 

Do talk to your specialist to see what they think, other than that it's a case of watch this face! :VeryHappy:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sandra, Good question and I'm anxious to see the answers you get. I have read a lot in the past and I know that we are all differant. Keep us informed as to how you're doing.


Gigi08

Share this post


Link to post
Share on other sites

Hi Sandra,

 

Amanda's answer was spot on - it's really a wait and see kind of game.

 

I've had painful joints for much longer than I've had my diagnosis (3 years) and there isn't any visible change at all. It really kind of depends what is causing the pain. For instance, if you had co-existing rheumatoid arthritis, you'd probably have a greater chance of having visible joint damage than if you 'only' have inflammation. This question bothered me too because of all the aches and pains but it turned out although, for instance, my one shoulder was extremely painful, it was tendonitis that was causing the pain.

 

It seems like when so many joints hurt so much and for so long that it ought to show, but I'm guessing that more often than not, it doesn't. There have been times I felt like I wanted to put little red caution flags on my clothes or hang a sign around my neck that says "I do not shake hands!" or "Hugs not welcome today!" wink.gif

 

OH! By the way, hugs ARE welcome today!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

Share this post


Link to post
Share on other sites

Hi Sandra,

 

Like you, I also like to know what to expect. However, this is not as easily answered, since we're all like snowflakes...each of us so very different.

All most of us are able to say is "watch and wait". So sorry we can't do better than that.

Yet, Amanda and Jeannie both answered with how they are effected, which is help when we have similar afflictions.

For me, my fingers have really been effected, in that I have bone reabsorption, which has caused my fingers to shrink in length, as well as each joint to become much more pronounced. Along the way, this process was very painful and began nearly immediately. All of my joints are effected (knees, elbows, wrists, ankles, neck), as I also have Psoriatic Arthritis, as well as Rheumatoid Arthritis.

A plus, is that my skin "softened"(back to how it was "pre-effect"), for it was effected for eight years, when I could not bend my knees, walking more "stiff-legged. I definitely could not get down on my haunches, nor on my knees. Now, I'm able to bend at all joints, due to regaining elasticity.

Yet, my face, though smile/laughlines have returned, I do have microstomia/thin lips, which I think is here for the duration.

I don't expect my joints to improve, but "some things" do, for some of us.

 

I hope, that with our various experiences, we have given you an idea of what CAN happen.

It's always good to ask, so I'm hopeful there will be more thoughts/experiences posted here.

 

Hope you're staying warm...our temps are FINALLY "warming" a bit..."up to" 33 degrees :emoticons-yes:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0