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Renae B: CREST with Sjögren's and Raynaud's

I had always attributed it to "getting older."

I was diagnosed with scleroderma about four years ago at the University of Iowa Hospitals in Iowa City, Iowa. I was referred there by my doctor after undergoing an endoscopy for problems with swallowing and keeping down food as well as severe acid reflux. I was unaware at that time that several problems were being looked for.

After my second endoscopy, the rheumatologist asked me questions about the past several years, including how my hands and feet reacted to cold, and if I had noticed any stiffness and pain in my hands, joints and muscles. My answers were of course positive, but I had always attributed it to getting older, and the blue fingers, which I thought were signs of carpal tunnel, from years of being a secretary. The rheumatologist asked if he could perform a little test on my hands with cold water, and I agreed. He then had six resident doctors watch as he dipped my hand into a bowl of ice water. After about fifteen seconds I had to remove my hand. My fingers were white and painful. Then they turned blue, then red.

The doctors were excited and examined my fingertips under a magnifier and also mentioned a narrowing of the fingertips and tightness of the skin on my fingers. I left the hospital being told that I most likely had scleroderma. They wanted me back the following week for blood work and a stomach emptying study.

I drove the ninety miles home by myself worrying and fighting back the tears. I had no idea what scleroderma, and all that had taken place that day, meant. The next week, I learned more, and I have since received most of my information regarding my diseases from the Internet web sites and from questions asked of my doctors.

I have suffered many complications with the Sjögren's. I have had both tear ducts in both eyes cauterized due to extreme dryness. I have had oral surgery for ulcers on my tongue. I have a stone in my parotid gland which causes severe bouts of pain and swelling. Dental problems have been constant and severe. I am lucky to have a dentist who has researched Sjögren's in order to treat my condition. I have severe dry skin and problems with rashes, as well as internal dryness.

I am treated with medications to help alleviate some of the dryness. Constant liquids are necessary to help me swallow food and keep the mouth moist. Nighttime fluids are necessary or the dryness causes my tongue to stick to the top of my mouth, whereby my sleep pattern is usually disrupted. Special toothpaste helps with oral care, as well as daily fluoride treatments.

My Raynaud's is mostly apparent in colder weather and when air conditioning is too cold. I am treated with Nephedrine 20mg daily. I take special care to protect my fingers and toes from the cold.

The esophageal problems are quite severe. I am treated with medications to protect from acid reflux. I must continually drink water to push down my food, as one third of my esophagus does not function. I do not eat after five or six o'clock at night because of food coming back up when I go to bed. I have a problem with constipation, which is ongoing. Stool softeners have become a daily necessity.

I have many days of pain. My hands, arms, joints, and muscles in general are painful, and even Ibuprofen does not help. I am treated with hydroxychloroquine (Plaquenil) and I also often go on low dose prednisone when pain episodes become severe. Being tired is a constant problem; it seems I run out of steam often.

I have spots on both legs, around my shin bones. They are red and circular, indented, and hard on the surface. My rheumatologist said they are localized scleroderma. I was given an ointment to ease the dryness, but sometimes the spots are very painful and it feels as if the pain goes into the bone.

Recently my blood pressure has been very high, and my rheumatologist had advised that I be treated with medicine for that. After four weeks the dose was increased, which has brought the blood pressure under control. This has been a concern as my blood pressure has been on the low side my entire life, and I worry about the possibility of pulmonary hypertension.

I do not know if heredity is a factor in scleroderma or not. I have a very dear younger female cousin who has CREST scleroderma. She has been recently diagnosed with stage four pulmonary hypertension. I pray for her everyday. She is a mother of two teenage girls who need her so much. She was diagnosed about twelve years ago, and I do not know the extent of her treatment.

Basically, though, I consider myself to be very lucky. I still continue to work every day, and rarely miss work, except for my doctor appointments. I am grateful for good doctors who care, and I continue to be thankful for all the good days, as well.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.