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Mary S: Diffuse Scleroderma

"I think I am sending you a patient with scleroderma, but I am not sure."

Cinerarias for Mary by Sherrill Knaggs, ISN Artist Hi. My name is Mary and I live in Louisiana. I am fifty-seven years old and was diagnosed with diffuse scleroderma in 1998.

In 1995 I was working as a supervisor at a local casino. I really enjoyed my job although it entailed usage of chemicals. Two years later in 1997, I began losing lots of hair and weight and I was always very tired. I blamed it on all the walking I had to do, although I would not lost weight before. My feet, ankles and legs had a very red rash that I could not get rid of no matter what I tried. They felt like they were on fire and I often had to sit down as I felt I would fall from tiredness. My feet and hands also tingled with the burning and the awful pain I was having.

I finally went to our family doctor because my husband was leaving for Venezuela in South America and I had to get a month's worth of his blood pressure medication. The doctor picked up my pants leg and told me to tell him what was going on. He immediately ordered blood work and fussed at me for waiting so long. I also had to monitor my urine output which was okay. He put me on Lasix for the bad swelling of legs. The blood work was faxed to him, and I went back two days later. I also have ulcerative colitis and it had given me a bad spell so I hadn't been able to go to work. The doctor told me he was looking for either a kidney or heart blockage and diabetes because it's very bad in my mother's family. He sent me to an older but highly regarded doctor and gave him all the information that I had told him.

I soon saw this new doctor and he ordered more blood work and a scan of my legs. He then did a biopsy in the deep tissue muscle of my right leg. That was one of the many times that I heard sedimentation rate and other things.

My husband left for Venezuela the day before the surgery. I was sent home after the surgery with Vicodin and told to stay quiet. Each time I went to the doctor my pulse was very weak and so was I. I asked when he thought I could go back to work and he said in ten to twelve days. That never happened. I had to walk on "tiptoes" to get around as the surgery site was very painful. Now the rash on the legs was a deeper color of red and scaly. My legs were tight and hurt badly.

In the next three weeks I went back and forth with the blood work and removal of stitches. The day I had the stitches all out the doctor put a gel on my legs and asked if I could feel it. I said no. He asked if my hands and feet were always so cold and I said yes. I asked if he had any idea what I had, as I had seen him many times now, but he still did not say anything about what was wrong with me.

By this time I was on 40mgs of prednisone, which drove me up the wall. I could hardly stand having anyone around me. One day he said I had some calcinosis. He also thought he knew someone better than him that could get to the cause of my problem and sent me to an internist.

The next two months were more rounds of blood work, X rays and CAT scans. I was still losing weight and hair! When he called the internist I was in the office and I heard him say, "I think I am sending you a patient who has scleroderma but I am not sure. She has a lot of the symptoms."

This internist asked a lot of questions too. He asked about my hair, and how much weight I had lost. I told him I could bring him some of my lost hair the next time I came for an appointment. It turned out to be a gallon ziploc bag filled to the top! He increased my prednisone to 60mgs. Wow! was not 40mgs enough? He said the blood in my legs was terribly inflamed. Yet still I had no answers. I just kept going and doing blood work and taking medicine for the pain. I had no reflexes at all in my legs. The colitis was really acting up, but it will do that with stress, and I was certainly stressed. I was taking metronidazole and hyoscamine for it.

The day finally came with some news. He told me I had lupus. I knew what that was and I was scared, but he assured me I could live with it. The other doctor who had done a biopsy had told me I would have to learn to live with it, if I had what he thought I had. He was right all along. My family would have to be prepared, too.

I then had to see a rheumatologist. The internist made the appointment. They of course ordered more blood work. When the time finally came to see him I was a bundle of fear and nerves. He told me I did not have Lupus, that I had scleroderma. I did not even ask him what it was, as I was so relieved to not have Lupus

Poor me. Once he told me what it was I had, I had a reason to be scared. He put me on Depen (penicillamine) and left me on the prednisone and the Vicodin for the pain. He told me to avoid scratching, to wear denim pants and to stay as warm as possible. ('In Louisiana?' I thought.) Then he told me there was no cure for scleroderma, either.

My next appointment was with my old internist. When I told him what the rheumatologist had said, he laughed and said the other older doctor was right about it all along.

Since that time I have gone to the emergency room with a headache that I swore would kill me and my chest hurting so bad. It turned out I was having a migraine and severe acid reflux. I also have fibromyalgia, and I had to have an MRI for a herniated disc. I have a lot of a degeneration in my left hip. I cannot wear my rings because my hands swell and hurt so much. My fingers and toes go into spasms so bad that I have to push them back into place because they hurt and are also at a funny crooked angle.

I had a barium swallow because I was coughing hard and felt like my throat would close up on me. That was also due to spasms. I have water with me always as I will literally "lose my breath." I have peripheral neuropathy, and for that I take Klonopin. I also have Sjögren's with dry mouth, nasal passages, lips and dry eyes, for which I use Refresh tears. I no longer have any hair on my legs or underarms, which I find strange.

I am fighting an inflamed tendon which swells my foot up to the size of a loaf of bread and hurts awfully. For this I used to take 10mgs of steroids, and I am glad now that I only have to take 5mgs, four times a week. I take Nexium for acid reflux, plus Procardia, Pamelor, Vitamin B-100, enteric (a coated aspirin), and Soma for pain and to relax the muscles in my ankles. It gets so bad that I cannot get on my knees. I can bend them but I can't get on them. I also have ear problems. The ever-present ulcerative colitis landed me in the hospital last year.

I truly believe that I was better last year than I am now. I find myself having more pain and more problems. My family has been my lifeline. My husband took over so much and it does not seem to bother him as much as it bothers me. He works in the Gulf of Mexico on an oil and gas production platform, so for a week at a time I am alone, but his family is nearby. Last year the doctor tried to give me Plaquenil. It did not work. Neither did methotrexate or quinidine so it appears I will stay on the Depen. I have big lumps in my legs and the rash is still there although not as bad. I find that the acid reflux is getting worse. My internist wants to see me every month now instead of every two or three months as before.

I walk with a cane and I have a wheelchair to use when we go to big places. I am grateful and thankful for my husband and children who care and do so much for me. I am also grateful that this has not yet progressed to my internal organs.

As the doctor had said, I have learned to live with it. I take it one day at a time. It's good to know that I am not alone in my struggle. I try to keep a positive outlook on things and laugh about some of the things that happen. A little humor each day goes a long way. I have plenty of cats to keep me company and dogs, too! They in themselves are something to laugh at. These days I would much rather laugh than cry.

To Contact the Author

Mary S.
Email:[email protected]
Story edited 10-16-02.
Story posted 10-24-02.

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Depen (penicillamine)
Diffuse Scleroderma

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Mary T: CREST Scleroderma

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.

International Scleroderma Network (ISN)