Limited Scleroderma or CREST Syndrome: What helps?

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.

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.

Curious how have you changed your diet

I'm so sorry to hear this but I have lived with crest since 2001 and have control of my care and yes there are times I'm still scared. But having drs you can cIynt on and that take you seriously and treat you with respect is key. Don't back down on your care. I have switched drs multiple times because I didn't like their tone or bedsidemanner. Most of my drs are women
I have 3 male drs but I depend in my team aND am not shy when I need help.

One of the dangerous side effects of CREST is that collagen can thicken your heart valves. I get an annual echocardiogram to see if there are changes in heart valve morphology. I've experienced more joint pain in hands and feet during the last 2 years, and attribute this to CREST syndrome. CREST was "weakly expressed" since I was diagnosed 15 years ago, and symptoms have increased during the last 2 years. I take only an NSAID (Aleve) as needed (not daily), and (1) 300 mg Gabapenten tab occasionally only at night for relief of pain and twitchiness. I was also prescribed Nifedipine to improve circulation, but I don't take it at all because I don't like the "high blood pressure" feeling. You can't take Nifedipine if you already have high blood pressure. I am 66 years old.

Yes, scleroderma is the disease that keeps on giving! All of your issues seem to be treatable. Find a doctor or doctors that can help you. I have had systemic scleroderma for 25 years. The doctors seem to be treating symptoms in their specific realm. You need a good GI Doc for your GERD, a good dermatologist/rheumy for your hands (may benefit from physical therapy by a hand specialist), and a good cardiologist for your heart. You should also be seen by a pulmonologist (to rule out lung fibrosis and PAH). There are now drugs for dry eyes and mouth, heart burn, lung issues and many other things you are complaining about.

Like others have said, be your own advocate and look for a good doctor!

@birdieca Welcome to MayoClinicConnect! This is a great group of people who try to help each other. I can see that you will really fit in! You have the right temperament and experience! How did you find Connect?

I found this accidently while searching the Mayo website.

Thank you for your kind comments. I look forward to participating on this site. I have had scleroderma a long time and am 74 years old. I find that my journey helps those who have had scleroderma for a shorter period of time as some of the web sites make it seem like you are going to die in 5 years!