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Amy B: Limited Scleroderma with CREST

I am getting copies of all of my lab work and tests, and keeping them in my 'derma file'.

Medicine by Sherrill Knaggs, ISN Artist I am thirty-eight, a mother of three children, a wife and a full time pharmacist in a pediatric hospital. In February and March of this year, I began to be very intolerable of the cold. I live in the Northeast and it is not easy to get out of the cold here!

Within a few weeks of noticing how cold I always was, I started hurting all over, as if I had the flu. The fatigue, the muscle weakness and especially the shortness of breath whenever I tried to do anything remotely physical never got better, but only worse. It got to the point where I could not even lift a laundry basket of clothes and walk downstairs to our laundry room. My upper arms and shoulders ached when I would wash my hair in the shower.

I had seen my physician three times, and had gotten a tentative diagnosis of fibromyalgia. At the third appointment when I was getting fed up with how I felt, I was told I seemed a bit "nervous." Um, yeah. My body was falling apart around me, I cannot do the simple things with my children that just a few months ago I could, and no one had a reason.

He referred me to a rheumatologist, and I had to wait almost four months for an appointment. While waiting, I ended up hospitalized for four days right before Memorial Day. It was very hard for me to breathe, and I could not even walk up a flight of stairs at work without sweating and breathing very heavy. I got the million dollar cardiac work up that noted "mild restrictive" lung disease, but no one followed up any further, since I did not smoke. I left with an Advair inhaler and was told to maybe try to exercise a bit more.

My appointment finally came with the rheumatologist. He took one look at my edematous (swollen) hands and thick fingers and said he was going to do a full work up for lupus. He did not know what was going on, but he was sure it was some sort of connective tissue disease.

One month later at my follow-up appointment on October 10, 2003, I was told I have limited systemic sclerosis with the CREST syndrome variant. My ANA was high, and I had a very high anticentromere antibody titer. After I let it sink in over the weekend, I called the pulmonologist that read my pulmonary function test (PFT) reports when I was hospitalized in May and asked him to go over them again, now knowing that I have scleroderma. He called back and scheduled me for a follow-up PFT and a chest x-ray. He asked me how in the world I knew to follow up on this. I told him I had done some reading. He was quite impressed. I have since done a lot more reading, and have joined a support group. I am getting copies of all of my lab work and tests, and keeping them in my 'derma file'.

My family feels that I may be in denial about this disease. I feel more relieved to know that this has not been all in my head these last nine months.

Although I am not happy about what is to come in my life, I am happy that I know what it is I am fighting against. I know now why it is that I do not have a bowel movement for four or five days, then have diarrhea for two days! I know now why it hurts to walk after I have been sitting for an hour or two. I know why my hands swell and ache, and I know what these funky little red lines are on my chest and neck. I know why food gets stuck in my throat every once in a while, or why I cannot drink liquids very fast sometimes. I also know now why my bowling average has dropped like a rock…wish I could fix that!

~ Update-12-13-06 ~

It has been a little over three years since my original diagnosis and I am doing okay. I have a few hard patches on my legs, I have lost function of the lower third of my esophagus, but other than that I am feeling pretty good. I still have aches and pains and I have taken up running to try and just keep my joints moving. But all in all, I feel good. I still have pretty good energy. If this is as bad as it gets I am good with that.

To Contact the Author

Amy B.
Email: [email protected]
Old Email Prefix: abarr1
Story posted 10-24-03
Story update edited 12-13-06 JTD
Story update posted 02-08-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin

CREST Syndrome
Difficult Diagnosis
Esophageal Involvement
Limited Systemic Sclerosis
Pulmonary Function Test

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!

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