Sunday, January 28, 2007

Scleroderma and my skin

The most common symptom of scleroderma and where it got its name is what they call hardening of the skin. The immune system is tricked/confused into thinking that it needs to generate collagen which is what causes the skin problem.

I initially noticed it in my hands swelling which is what got me to the doctor in the first place. My hands continue to be the most impacted part. They remain swollen and sore with the skin being very tight and the fingertips extremely sensitive. When I wake up in the morning, I can't make a fist. As the day goes on, I usually get more flexibility in my hands, but they are never "normal". My fingers don't bend enough now to actually make a fist but I can usually get them to touch the bottom of the palm of my hand. I actually use some therapy putty which often helps loosing the joints up. I hope my hands won't get any worse and I try to stretch them multiple times a day. I have no hand strength and often ask someone else to do something as simple as crack open the top of a water bottle.

One of the oddest feelings is when it started to effect the skin on my face. I could actually feel the skin on my face changing. Each time I felt something, it lasted for 2 days. It felt like when you have sunburn on your forehead and wrinkle your forehead. when it occurred, my skin was very oily. I felt it on my forehead and on the top half of my face. I haven't felt any changes in a couple of months but the skin is still very tight. I can smile and it might not be noticeable to others, but the difference is very noticeable to me. I guess I don't have to worry about wrinkles.

Another place on my body that I felt a change occurring as it was happening was on my chest. I felt it for a few days between Christmas and New Years. The tightness on my neck and now chest prevent me from lifting my head very high. As I lift my chin up, even a little, the skin is so tight that you can see the skin on my chest move. Sometimes it makes my throat uncomfortable - at least I think it's the skin causing the discomfort. It feels as if you put your own hand around your throat and try to swallow.

I have no noticeable skin issues below my chest until you get down to my legs. I'm not sure if the skin is impacted on my legs or it's my hip and knee joints that are impacted from the disease but many days my legs are very sore. My ankles used to be swollen but that has seemed to have subsided. Bending my knees and lifting my leg to put a sock on in the morning is often an effort. Standing up I feel like an 80 year old man and not a 40 something man that was in excellent shape. My knees often feel as they "pop" when I stand up. Walking any significant distance is usually something that is painful too. There are days though where it bothers me much less, but those aren't as often as the days where it does bother me.

My feet were probably the 2nd place I noticed a change when this all started though I didn't feel it happening. My feet were swollen and the bottoms of my feet were always sore, just as my hands/fingers are. When my wife or kids rub my feet, at first they are so sensitive that a little pressure hurts, but after a couple minutes, it feels great!

The skin change is obvious to me, but maybe other then my wife, it's probably not noticeable to folks that see me every day. My mouth is a bit tighter which I think has to do with the skin on my face. My teeth feel a bit more sensitive which is also common with folks diagnosed with scleroderma.

Well enough about my skin. Next I'll talk about how scleroderma is represented on the Internet.


kenny said...

It is amazing how much our symtoms are a like. If I were describing my pain it is just the same.

Jeanne said...

I was just diagnosed 5 days ago and am finding your blog quite informative and familiar to some of my symptoms. Thank you so much for sharing!

mary norton said...

yes Helo I am almost shure I ve had this since i was 28..Under high stress Have any of you had the edges of ears hurt like i have. for eighteen months I am a medical professional and have been argued with for 18 years on the tired and joint poping!Do you have thick oil like wax in ears that feels like it is running when you fist wake up? I have swelling and was hair dressor I find sswelling in hans is deminishe with uuse of all natural shea butter with Frankensense and Myrh like the two items given to The Very Jeasus I pray to ..I also read As I am vet That people who live by Airports are more likely to have this..AS I am former AF and lived on and near base for 3.5 years than in landing pattern as civilain for 4..5 yeears..Also I suspect tropical fungi and or one very expensive beauty product used by me and two other very famous women...I am not famous but I have suspected for years a wheat fungus or bacteria as my symptoms flare when I cheat with wheat. THe doctor who specializes in Fibromyalgia give his patients a no gluten grain diet and the 14 century doctor who discovered sD also sad in his writtiiing he realized a grain free diet help those who suffered with tis disease or aleinment!!! I was trying to statre nursing school..?

Dragonweaver said...

This is way after your post but I've just been diagnosed with scleroderma and I find that the symptoms you describe are dead on with mine the only thing I do have a question about for you if you could answer if you get this does water bother your skin say after taking a shower my forearms feel like they're going to rip apart and especially after I get out of the shower even if I try to put lotion on it doesn't soak in so I just thought I'd try and see if you had that same thing happening or happened then I really don't have anyone here to talk to about this so finding your blog was pretty much the coolest thing that's happening all day thanks