(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

Erica R: Raynaud's Syndrome and Telangiectasia

It felt like I was placing my hands in a pot of boiling water.

It all began my junior year in college at UCSD. I was twenty. It was right before Thanksgiving break. I had one class that was at 6:00p.m. I noticed that in the middle of class my hands would go numb. I had to run out to my truck to turn on the heat. The blood would circulate back through my fingers and I would feel this intense pain. It felt like I was placing my hands in a pot of boiling water. I just thought it was due to the cold winter weather.

I went home for Thanksgiving break. Over break, I woke up one morning with my left thumb and index finger completely swollen. My mom and I thought it was a spider bite. It was better after a few days. However, the hand numbness continued. I freaked out during one class when I looked at my usually numb hands and noticed they were completely purple.

I went to many doctors to see what was going on. One doctor told me I should not worry, that I had just probably ovulated twice that month. All the others simply had no idea what was wrong. My mother was a nurse and was inquiring about my symptoms at work. Another nurse, who had Raynaud's, told her about her diagnosis. My mom relayed the information to me and I then relayed it to the on-campus doctor. It was like a light bulb had gone on in her head. She said, "Of course!"

I went to a different doctor to treat ulcerations on my left and right index fingers. Medical students oohed and ahhed at the sight of them. My ulcerations took about six months to heal. I was just glad they did because the doctors were talking amputation. I had positive ANA counts from ages twenty through twenty-seven. Other than the Raynaud's and the positive ANA, I felt normal.

When I was twenty-four, I was pregnant with my daughter. Pregnancy brought on a condition called telangiectasia. I have red spots all over my neck, face, hands, and chest. Not cute! I have now been seen by the same rheumatologist for about four years.

In the past seven years, my symptoms have included Raynaud's, telangiectasia, a numb right hand for a month, one severe fever followed by severe body and muscle aches (the soles of my feet were even sore), and two severe dizzy spells (one of which I went to the emergency room for).

My condition continues to baffle me. It seems that every case is different. I am just curious as to what my future holds healthwise. My doctor continues to do blood work. My last visit was my first visit in seven or eight years where my ANA was in the normal range—high normal, but normal nonetheless. I am also currently seeing a doctor who is familiar with the elos laser and treating telangiectasia. I am concerned about the treatment because I am afraid the spots will come back with future pregnancies.

If my story sounds at all like yours, I would be interested in hearing your story, even if it's just to have someone to talk to and who understands.

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 is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: