Posted 09 January 2008 - 06:25 AM
Any suggestions? I use a presciption creme and must admit I am guilty of taking hot baths to warm up.
Posted 09 January 2008 - 12:56 PM
Posted 09 January 2008 - 01:01 PM
I have the same problem, specially in my hands. It's painful most times and there are things that I can't do because it hurts. I can't even smack my kids anymore. I have a 13 year old that sometimes deserve a slap in the arm. Well, I tried that, what a mistake that was. I don't slap to hurt my kid, just so he knows I'm serious about something. I was bent over holding my hand with pain.
Also little things like opening jars can be painful.
By the way, you mention hot baths? I had no idea that the hot water could hurt the skin. I don't take baths, but I take very long and hot showers.
Well, stay warm,
Posted 10 January 2008 - 10:49 AM
Once a bath or shower is finished, instead of toweling off, cover your skin with baby oil (mineral oil also works) and it really helps.
I also end up with an exzema-like rash on the tops of my hands... more in the winter than summer months. It's very painful...
Posted 10 January 2008 - 07:00 PM
It is what it is...........
Posted 11 January 2008 - 05:01 PM
My skin sometimes hurts too - mostly in winter. It feels tender and raw. Even my scalp hurts.
Try a collodial oatmeal bath but not too hot - even though hot feels SO gooooood...
Posted 12 January 2008 - 05:48 AM
I want to start a walking program but I am so uncomfortable it is difficult. By the way, I have diffuse sclero. I know skin involvement is a big thing but wondered if anyone else's skin hurts like mine does. I have been wondering if I might be getting contractures but my PT says my range of motion hasn't changed.
Posted 12 January 2008 - 06:15 AM
I am just now experiencing the same thing! It's on my neck and face. It made me a bit freaked out because as so far I don't have much skin involvement. My normal complaints are joint pain, muscle pain, and severe fatigue. But just last night I was trying to pucker my lips as if you were going to give an exaggerated kiss and it was so tight and pull all around my lips. The skin between my top lip and my nose looked really thick and was having a hard time puckering...... it brought tears to my eyes as so far I've been able to hide most of this illness. (Physically by appearance) My neck skin is also feeling very taut and tight and if I stretch it - it hurts....
I've never had any skin scores taken, so perhaps that is something I'll talk about at my next rheumatologist appt.
Hang in there!
Posted 12 January 2008 - 11:04 AM
I have been in "remission" for the last 8 months and my skin had become mostly normal again. Then I had a reaction to another medication I was taking and I think it flared the skin back up again. I had forgotten or blocked out how painful the tightening skin was. It is one of the only things that wake me up in the night. Getting dressed or leaning over to pick up the newspaper makes me want to scream sometimes. It just feels like someone is trying to rip my skin off and it hurts to touch the more problematic areas. I wonder if this is what a burn victim experiences?
I get some relief with massage and lotioning and stretching, even though the latter seems counterintuitive. I spend time at the therapy pool slowly working all the problem areas. It hurts, but I think this (plus the right medication) is why my skin had become so flexibly when the sclero quieted down earlier this year.
I made an appt with the doctor to discuss whether this is a temporary set back or if we need to adjust meds again for a while.
Hang in there.
Posted 13 January 2008 - 12:32 AM
Better late than never. I have diffuse and my skin in my upper body: chest, arms, neck and face are tight. Miocean, wow a rodman skin score of 45!! wow! Mine is 20. I use a pumice stone on my elbows and knees because the skin breaks. My face and chest are slightly shiny.
Cyclophosphamide really softened my skin. The girls at my doctorâ€™s office say compared to my first visit (the exam where I was first diagnosed) I look so much better. Before cyclophosphamide, the skin on the back of my hands was so tight I couldn't move it; now it's pliable and even wrinkles a bit.
Are hot baths bad??
I wonder if motility has anything to do with contractures. In my hands the tendons are weakening. I have fairly good range of motion thanks to hand PT but they get weaker everyday. Some days I canâ€™t open bottles of water or cut carrots with a knife.
Hope & health,
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 13 January 2008 - 06:06 AM
I know cyclophosphamide is good for making the skin softer. I was on a short term IV treatment and it made me so sick I had to stop. I'm sorry to know that others have the pain and discomfort that I do but then again, misery loves company! It feels so terrible being in my skin. And my skin looks terrible, too. thanks for all your replies.
Posted 13 January 2008 - 07:43 AM
You'll always be beautiful in sight and soul.
It is what it is...........