Posted 13 October 2009 - 04:40 AM
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.
Posted 13 October 2009 - 05:02 AM
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 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!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 13 October 2009 - 08:42 AM
Posted 13 October 2009 - 09:06 AM
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!"
OH! By the way, hugs ARE welcome today!
(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
Posted 13 October 2009 - 10:10 AM
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