Posted 10 April 2011 - 02:00 PM
I am currently on steroids and have gained back all the weight I lost a year ago(about 40 pounds!!). The weight loss was unintentional at the time, and my husband was very worried. Now I have a tremendous appetite and keep gaining. I can't seem to win!!
One of my concerns right now is that recently the skin on my forearms has taken on a weird ripple effect. Is this common with this disease? I have only been diagnosed for about a year or so, before that, for 5 years, they thought I had RA.
Thanks so any input
Posted 10 April 2011 - 03:21 PM
How nice to hear from you again although I'm so sorry that you've been suffering with depression. I've included a link to Depression and Scleroderma which I really hope may be of help to you.
I must admit that I haven't experienced the rippling skin that you're describing so I'm unable to advise you from my own experience, as although I have Systemic Sclero, I have minimal skin involvement (merely the tips of my fingers.)
However, one thing I can totally empathise with you is the weight gain due to steroids! I've been in them now for 21 months and despite my very best intentions, I've put on weight! They do increase my appetite, but I can deal with that by saying to myself "Do I really want that bar of chocolate/ piece of cake/ another biscuit/ etc. etc. or do I want to be able to fit into my clothes?" which I find tends to concentrate the mind wonderfully!! It's very difficult though as the pounds seem to roll on regardless, so I can understand your frustration.
I do hope that you're on as low a dose of steroids as possible as among other things they can precipitate a Renal crisis in Scleroderma, so they're not a drug that should be prescribed without due care.
I expect some of our other members with more skin involvement than I, will be along to advise you further about the rippling skin.
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 10 April 2011 - 03:43 PM
How lovely to hear from you again and I am sorry that depression has kept you away. Living with scleroderma is a struggle that's for sure and some days it is just overwhelming. Presently pain is my main issue and I have certainly felt overwhelmed by it of late. The one thing depression makes you shy away from is the one thing that can help...talking.
I have skin involvement but the only thing I have that I could be considered sort of rippling is where tight skin that as started to soften meets soft skin. Any help?
Take care and keep posting.
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 10 April 2011 - 03:53 PM
I hate this latest sign of my disease!! It feels like the disfigurements just keep on coming. Hands, wrists, arms, face, etc, etc. Sometimes it seems like it's all too much!! I try to keep a brave face for my family, but at times I just want to sit in a room and cry.
Anyhow, enough whining. It does help to talk to other sweet people like you guys. Thanks !!!
Posted 11 April 2011 - 04:53 AM
I am fairly new to these forums and to Scleroderma as well. I was recently diagnosed with Limited Systemic Sclerosis/Scleroderma in January, and boy has it turned my life upside down! So I can definetly relate, I have some skin involvment with my Scleroderma though and I do have that ripple affect in some of the areas. I have thickening of the skin on my wrists and under my arms, which my Dematologists says is caused by the Scleroderma. It can get quite painful and swells up and the skin around it seems to ripple. I have Lichen Sclerosis as well, which causes painful lessions and sores in the groin and rectal area, as well as causing the skin to become very thin and I treat this with a topical ointment and I use this on the areas where I have the thickening of skin when they become painful.
I can also relate to your depression, I suffer from it chronically as well. I was working at a job I loved up until May of last year, at which time I was let go due to health problems caused by the Scleroderma, although at the time I thought everything was a result of the Lichen Sclerosis. Going from feeling important to sitting at home and staring at the walls and just feeling sorry for myself all the time has been incredibly difficult. I can talk myself out of it at times and feel all right and ready to take on the world and make all the changes I have in my head that would make life better, but then a bad bout of the Scleroderma hits and I start getting pains and cramps in places I never thought you could get cramps, or I can't get away from the loo because of gastric problems and I am right back at square one for the depression!
I have suffered from depression caused by a chemical imbalance all my life and have seen Psychiatrists and have found, for me, that they aren't always helpful as the ones that I have seen just want to up my depression meds until I am a walking zombie, Night of the Living Dead in Leeds LOL! I'm sure this is not all Psychiatrists though just the ones I saw. I had given up getting any help until I met a friend whose husband was a Psychologist and boy what a difference, he talked to me and helped me with techniques to help me get through the depression and face the reasons I have it! As I said I have been having bad bouts of depression now since the diagnosis, and thought I could just go back to the techniques that I learned and it will be all right, but I guess Scleroderma is a bit more than the chemical imbalance, as it wasn't helping any. I have been referred to a Psychologist, as I requested this, and have been getting a lot of help, it helps to talk to people that you don't care about, as with me I feel so guilty for what I put my husband and family through that I don't want to whine to them about my problems any more than I already do! It may seem hard at first but once you get there and get talking it all just spills out.
I really hope that things start looking up for you and there are more positives than negatives in your life! And know that there are people here that care and are willing to listen and it isn't whining here as most have gone through this all before and that getting help from someone on the outside often helps you to get a new perspective on things! And if you want to 'talk' to someone you can always PM me
Sorry for the book this just really hit home for me and I thought I would share and heres a hug to help!
Posted 12 April 2011 - 04:42 PM