Limited Scleroderma or CREST Syndrome: What helps?

@gkuntz114hayden Many people are treated in different ways. Treatment depends on the symptoms and their severity, co-existing medical conditions, and the patient’s overall health, plus what the doctor feels is best. I have clippers (lesions on the brain) and I’m surprised that others with clippers get different treatments
What has your doctor suggested as best treatment?

Hello Amanda, I am so sorry you have been diagnosed with limited scleraderma. I have had it for now 23 years. I would advise you to find a good rheumatologist, a woman would be better. I have had no luck with men drs. All the symptoms you describe are a part of my life. I have learned to trust myself and know how to handle things with my doctors. I have hand picked all my doctors and finally have a team of drs rom same hospital I can trust and know they trust my instincts and my own disease. If there is anything you need to know or ask please do. I would love to give back to someone since I was helped alot. I am Also a nurse so I have alot of knowledge about disease processes

Amanda there are many different types of treatments to help with your symptoms. It's all about your symptoms. I am taking plaquenil for the skin bumps that are the size off a hazelnut. When I started taking that medication 3/4th of my bumps shrunk. I am still on it after all this time . Also on viagra to open up the blood vessels so I don't get the ulcers on my fingers, especially in the winter. I take a few other meds and used to do steroid injections for my back and leg pain
Since I lost 55 lbs I haven't needed injections because alot of my pain went away. But have tremendous amount of joint pain
I started exercising on a daily basis. That has helped so much, I still walk with a cane but the exercising and my meds are my main treatment. I also take protons for esophageal reflux. And cannot eat past 5pm or I will be unable to get sleep. I never knew that others have so many of the same symptoms. I have learned what works and what doesn't. But I know preventative is also the key to maintaining a good healthy balance for myself.

I may be taking Humira soon. I'm lining up phys therapy too. The warmer weather now has helped my hands and feet. I'm still having to "come to grips" with CREST since there is NO CURE??

Hi, I also have CREST, and I agree with the above learn to eat healthy stay away from sugar exercise exercise we have to keep moving or we will stiffen up and not be able to move. I have a team at doctors also that I haven't seen for a while because there has been no need since I changed my diet. The one thing I'm still struggling with is fatigue any suggestions?

My fatigue has gotten worse within the past week. When I walk I get short of breath quickly. I do most of the cooking, so some things have improved under my control.

Ditto on fatigue. I could not move yesterday after everything I did the day before so today I'm doing slow but sure. I think the only real way to fight fatigue is to keep moving even if it's a little bit at a time baby steps.

Absolutely...I plan activities daily and get out of the house more often because the weather is nicer now. Last winter I was mostly confined.

How did you change your diet??? Friends of mine are trying to get me to do a glutin free diet. And I cannot give up my dairy I've given up meat mostly.

There is no cure. I had a difficult time with that for a long time. But I wake up every morning thanking God for giving me another day. Others have it worse than me. I had a friend who is blind tell me she would rather have what she has, macular degeneration than what I have any day. To say the least I shut down on her. People can be so very rude. Each of us have our own cross to bear, but I don't want anyone to feel sorry for me. I don't want pity.