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Marie: CREST Syndrome

Not knowing what that was, made me start researching while he ordered blood work.

Bud & Friend Cameo Ink Stipple  Copyright 1994 Shelley L. Ensz All Rights Reserved Hello, my name is Marie. I am forty-six years old, married for twenty-eight years to a very special man, and have three daughters.

I was first diagnosed with Hashimoto's Thyroiditis, about ten years ago. I had a nodule on my thyroid which was biopsied, and Hashimoto's was diagnosed. I really did not have a whole lot of trouble with my thyroid, but was put on Synthroid and the nodule did sort of disappear.

About eight years ago, I noticed my fingers were going numb, turning white, while shopping in grocery store ( freezer section) and if it was cold out. I was also having trouble swallowing my Synthroid at times. My migraine headaches had also worsened and I was put on Elavil in hopes of stopping their occurrence. My headaches did not go away, and my doctor at the time suggested I go to an endocrinologist to evaluate. He said my swallowing problem, which had escalated to choking on liquids, might be early scleroderma. Not knowing what that was, made me start researching while he ordered blood work.

It turned out I had a positive ANA centromere pattern, CREST syndrome. No one knew what it was and that made me feel very alone. I was sent to a rheumatologist, he did a nailbed capillary test and looked everything over and confirmed I had CREST syndrome. No medications were given except I was taken off of the Elavil, it was suggested it worsened the swallowing problem.

I was pretty good for several years, but the headaches were horrendous. Could not stop them, got them for days, and the Raynaud's got some worse, but only when cold or stressed. The swallowing problem seems to come and go. Some days there is a lot of hesitation before I can swallow, which makes me fear choking, but other days, no problem. I have had a flare up of Hashimoto's, much worse this time, the fatigue was relentless. Still have it at times. The nodule reappeared and was very painful to touch this time, so they increased my Synthroid, wanted me to take Prednisone and I was too scared to, so I settled for Naproxen. It took five weeks for improvement, and I may have compromised my recovery.

The chronic fatigue is my worst problem at the moment. It seems to grab on and not let go. I do not know what to do. I work full time as dental office manager, which thankfully is a sit down most of the time job, however, to come home and have more work to do, dinner, dishes, laundry, etc., puts me in a horrible mood. I am usually too tired to even think about doing any of it. Any suggestions for help with the fatigue will be appreciated.

I want to add that since I have started taking antioxidant vitamins, lots of them, I have noticed improvement in all the problems related to my diagnosis. Maybe it is a temporary thing, however, my rheumatologist and my primary doctor both think that I look pretty good for having had this as long as I have, and my nail bed capillary test had improved so much that the doctor ordered a new ANA test which showed my disease had actually escalated and become more active, but I had not noticed any changes. Is that possible? Does anyone else have any suggestions?

To Contact the Author

[email protected]
Story posted 3-21-99

Story Artist: Shelley Ensz
ANA test
CREST Syndrome
Hashimoto's Thyroiditis
Swallowing Problem
Voices of Scleroderma Volume 2

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