Scleroderma Support Group
Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.
Hi everyone! I am hoping that coming to this site and speaking with others who are dealing with Scleroderma. I am newly diagnosed. Had the Avise test done and I have zero overlaps. Just scleroderma. This Wednesday (2 days) I have my second rheumotolgy appointment to discuss the results of the Avise and what she wants to do moving forward. I am so confused with this dx. I do not have the obvious physical signs. As my doctor put it, I have early onset. I deal with severe joint pain, intense itch all over, insomnia, depression, weight gain, and slowly not being able to get up my stairs in my home. No clue which type of scleroderma I have or what my future entails. I hope to find support and friendship here. There is only 1 support group in my city and they only meet once a month on a Tuesday while I am at work.
I am here to listen, learn and get advise as a newbie. Thank you in advance fellow friends.
I have a huge list of symptoms that correlate with the disease but nothing that anyone else can see which brings a lot of baggage of it's own to my life. I find it best to focus on the things I can do instead of going into that dark place of despair which is easy to slip into.
Take one step at a time or it can be overwhelming. Maybe you do this already but here's what has helped me a lot. A clean diet, gluten free, sugar free and no starch (as much as possible,) I cut out processed foods, canned foods, eat as much fresh fruits and vegetables as possible. I struggle with this diet but I try as hard as I can and don't beat myself up when I fall off the wagon so to speak. If it looks daunting just try to cut one thing out at a time until you feel comfortable doing it then choose another one to try. I have studied gut health for a long time and have come to believe that our gut health is connected to our overall health. I'm not a doctor or have a degree in the health field so everything I say is opinion or my own experience.
This disease is treated symptomatically and what type you have so it's hard to give one clear cut answer to anyone on this.
I hope you find relief with your symptoms and best wishes to you. I'm glad your reaching out.
So sorry to hear that you have scleroderma, it's awful but your not alone. I've had it for over 30 years. I'm here if you want to chat