Can Someone Tell Me What It Feels Like To Have
Posted 03 December 2007 - 03:00 PM
Posted 03 December 2007 - 07:54 PM
I thought you were supposed to see your sclero doctor this morning because you had waked up in pain Saturday night or early Sunday morning. What happened? Didn't you get to go, or did I miss-read something?
I don't have a lot of skin tightning, except on my fingers, so I can't say much about that. Good luck on getting some answers and some help with your pain.
Mary in Texas
Posted 04 December 2007 - 03:20 AM
Posted 04 December 2007 - 02:01 PM
Do you remember those ads for those close fitting jeans? And how tight they were? Well, it's kind of like that ! Only we can't take them off to get relief!
Now, on a more serious note. If you ARE experiencing tightening in new places, you need to start some GENTLE stretches. To keep the mobility that you have.
Make sure you report ANY changes to the doctor. None are too minute to mention.
Warm and Happy to you! Vee
Posted 04 December 2007 - 02:45 PM
First off, thank you for replying to my post.
I have total body skin involvememt.
It started with my hands , moved up my arms , then went from the shoulders down.
The test is the pinch.
I can't pinch up my skin anywhere. And it shines like I've been buffed. I can't make a fist or close my hand . A simple bump can cause it to split open . No rubber maid trash cans tests here. LOL
This is kind of hard to explain but it isn't smooth under the surface, looks like cellulite. my rheumatologist tells me this is called woody.
The pain is hard to explain. Maybe like a skin/muscle sunburn.
Can only where the softest of clothing .Cotton sheets feel like sand paper.
I use silk. And they are slick and cold and cost to much...........
Posted 04 December 2007 - 04:10 PM
I just got off the phone with my doctor (at the urging of my neighbor). My right leg (amputation site) is twice the size of my left. There is no pain, but in the calf, it feels like a Sclero symptom. There s no pain, just a very thick feeling. He wants me to contact him if it remains the same. This disease seems to only affect my right side for some reason.
It is what it is...........
Posted 05 December 2007 - 03:16 AM
I feel bad that your children still haven't responded to your needs. I am happy your ex cared enough to stop in and see you. Do your sons still see there Dad? I am surmising that if you haven't seen there father in 20 years then maybe they haven't. If so, what happened that he found out you had surgery. I guess that isn't my business but I'm trying to put things together about why your boys are acting like they are. They are going to spoil their holiday season with you. Make sure you plan a few fun things with some of your friends. Even if you can't get out because of the healing of your foot, you can have others come do things with you. Find a place to be invited. Just don't be alone if you can help it. You won't be home waiting if they deem to show up on your doorstep. Keep your spirits up. Someday they will come around. I don't what you being alone and lonely at holiday. This time of year and memories of the past are hard enough to get through. Hugs to you for your strength in spite of all that is happening. I hope you get through the next several weeks with your strength and dignity. My thoughts are with you at this time. Sheryl
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 05 December 2007 - 03:29 AM
I forgot to mention,
Tru reminded me,
but the right side of my body is worse than the left at times.
Interesting, wonder why. any one know?
Posted 05 December 2007 - 11:20 AM
Thank you for your kind words. Seeing the doctor tomorrow morning. I think it's water build up, when I got up the leg was normal and then began swelling again during the day.
I've been beaten in the past and have always resounded. I will resound again and I intend to be back at my desk by the end of January!
It is what it is...........
Posted 05 December 2007 - 02:22 PM