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Limited Scleroderma or CREST Syndrome: What helps?
Autoimmune Diseases | Last Active: 6 days ago | Replies (89)Comment receiving replies
Hello, I stumbled onto this site this morning when I was looking up some other information and was happy to see this thread. I was diagnosed by a rheumatologist after every single doctor I went to blamed my weight for all my ailments. I had the beginning symptoms of dry mouth and not being able to swallow. I was prescribed prilosec which I never took. 5 years later the rheumatologist got it right. I chose not to do steroids. My symptoms weren't too bad then. Now, another 5 years later the symptoms are getting worse. Reynauds in winter is not fun. I just turned 72 so my struggle is not knowing when a new ailment begins if it's just an "old age" thing or if it has to do with CREST. I am not a lover of doctors. I don't go to them anymore because they don't help. My rheumatologist moved and I haven't found a new one yet. In the meantime I just do the best I can. I LOVED your reply to Amanda. You told her that she could ask you anything she needed to know. That's so cool. I'd like to ask you something as it's the main thing I'm confused about. If you could simply explain the difference between LIMITED and not limited, I'd sure appreciate it. I don't know which one I've got. I've read the internet answers but there's too many details. I just want a simple answer. Thank you.
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I'm sorry to hear you have had so many problems with Dr's but you need to find a new rheumatologist. The difference between limited and unlimited is distinct. Both of them are not able to be cured, but unlimited involves the organs including lungs heart kidneys, internal organs. Limited is usually skin esophageal involvement. And I was told that unlimited scleraderma has a survival rate of 10 years. I was diagnosed when I was 42 years old and it terrified me. They kept on doing lung scans every year for 5 ears until I asked to stop it's obvious it is limited or crest and my Dr agreed.
I am very careful with my hands not wanting to get a cut or sore that could easily get infected. Being a nurse I have been able to be the coordinator of my care. I have a team of drs that I myself have interviewed and they all know I am in control of my disease. I have 6 maybe more drs.
General Dr
Cardiologist
Rheumatologist
Eye Dr
Pain Dr
Gi Dr
And see them every 6 months. Not easy when I am still working full time. But it's important for me to keep up with them to get my medications and stay ahead of any issues that come about. Winter in Chicago is tough but I have alot of tools in my tool box to make sure I try my best to take care of myself and have a positive attitude. I don't want this disease to define me. I have other things that define me. I make sure I take all my vaccines. Wear gloves in the winter and wear my knit magic gloves in the stores and at home even it's important to keep your core warm. I even sometimes wear a knit hat in the house. I don't care what others think. I know what I need to do to stay healthy
I exercise daily, try to decrease stress, and learned to get rid of the toxic people in my life if possible.