My story begins in January of 2004. At some point in that dreary winter month, I began waking up with swollen hands. I was mildly perturbed, but pushed it to the back of my mind. I thought it must be from the dry heat, and made a mental note to drink more water.
One evening in February, I was walking the dog. It was a chilly night, about forty-five degrees. I wore gloves. I had noticed increasingly that I could not stand the cold anymore. I thought that because cold weather is infrequent in Texas, I was just not acclimated. When I returned home after about seven minutes outside, I noticed that a fingertip was white and numb.
"Honey, I have frostbite!" I exclaimed.
"Uh…you cannot get frostbite when it is forty-five degrees. That is not normal." This, from a husband who usually reminded me that I was a hypochondriac. Now, he was telling me I am not normal. Uh-oh.
I quickly logged onto the Internet and typed in "fingers turn white in cold." I found lots of links about Raynaud's. Okay. Hmm. What about this weird swelling lately while I am at it? Keywords: Raynaud's and swollen hands.
Uh-oh. Link after link was about scleroderma. I called my primary care physician (PCP) and was seen the next day. An inflammatory panel showed a positive ANA, with a homogeneous pattern. The nurse said it could be lupus, according to the pattern. Well, lupus is not fun. But I can live a 'near-normal' life span with lupus. I had already read about scleroderma. I did not want to go there.
Two weeks later I saw my first rheumatologist. He was dry and nearly completely devoid of personality. He sat behind a large wooden desk while he asked me a million yes-or-no questions off a clipboard. They took several x-rays and tubes of blood.
During the two weeks between my appointments, I began to have flushing on my face and chest. On some days I felt like I was coming down with a cold or the flu.
In the first week of March, I found myself behind the large wooden desk again. He asked how I had been, and then seemed not terribly interested. He interjected, "Well, the labs show you have the SCL-70 antibody, so that means you have scleroderma. And the ANA means you have lupus. Your x-rays show some thinning of the bones, so you will need a bone scan today."
He began writing prescriptions for me and dictating his report to my primary care physician while I wept. He pushed some pamphlets at me and sent me off to get a bone scan. I tried to ask questions about what this meant. Does this mean I am going to have the scleroderma all over, or just in one area? He only said, "If it is in your blood, then it is everywhere."
I was sobbing while waiting in line to pay, and finally a nurse pulled me into a room and answered some of my questions. She showed me that the doctor had written down "mild scleroderma", so it did not sound all that serious. However, I had already read about SCL-70, and I knew that it likely meant diffuse scleroderma and possibly a more serious course.
I saw a second rheumatologist the following week for a second opinion. I am not interested in seeing the first doctor ever again. You simply do not give someone such a serious and possibly grave diagnosis in that manner.
The new rheumatologist examined me and said he was one hundred percent certain I did not have scleroderma. He also said it was highly unlikely I had lupus. He reordered all the lab work and said he would be extremely surprised if it still showed SCL-70 antibodies. At this visit, my complaints were flushing, swelling in the hands that came and went, some wandering joint pain and stiffness, and mild fatigue. He recommended I see a dermatologist about my face. The dermatologist could not determine if it was rosacea or a malar rash. He took a biopsy from my back and sent it to the Mayo Clinic. Although they biopsied normal skin in order to test for systemic lupus, the biopsy came back positive for subacute cutaneous lupus. It showed inflammation, to be sure. My rheumatologist has referred me to another dermatologist who specialized in these issues, to get a second opinion about the lupus diagnosis.
Meanwhile, the lab work came back still showing the SCL-70 antibody. So despite my rheumatologist's initial impressions of "no way", we may still be looking at an overlap syndrome.
So far, my complement levels, sedimentation rates, blood counts, urine tests and chest X-rays are all still normal, and I am thankful for that. I have been having some definite acid reflux problems. I have been laying off the junk food and sweets and chocolate as a result, and I have finally dropped those last five pounds, which is also something to be thankful for: the scleroderma diet!
My family has reacted in various ways. My sister has told me she is in denial. She is just not letting herself "go there" yet. That is fine. I feel like I am a complete bore. Like the little old lady who complains about her bursitis! I think my husband gets tired of hearing me tell him about my symptoms. I am thankful for the online forums out there.
I have had some people try to blame this on diet or Diet Coke, or on personal beliefs. I think it scares people to be reminded that some issues of our health are completely beyond our control.
I have had many strange symptoms come and go. I do not know whether they are from lupus or from scleroderma, but I suppose it does not matter. I have had unusual sensations on my skin, like someone sprinkling cold water on me. Sometimes I will touch my arm and look up, wondering if it was a raindrop or if the roof is leaking. One morning I woke up with a numb toe, and one day with a numb patch of skin on my arm. Sometimes my thighs get red and irritated, and they hurt when I walk. It feels like the vibration is amplified.
My tongue is really strange looking. It is very cracked in the front and splotchy in the back. My rheumatolgist just said, "Blech! Be sure to show that to the dermatologist!" The dentist just said, "Hmm…it does look weird. But as long as it does not hurt…"
I have also been having temporomandibular joint (TMJ) symptoms off and on, and pain and a nodule in my wrist. My ankles are very noisy, as is my neck; lots of crackling sounds. Everything with this disease or diseases seems to be off and on. One day it is this, another day it is that, another day it is everything.
The last few days, I have been feeling rather normal, I am happy to say. I have had normal energy levels and less swelling. I am trying to hold onto these days and keep them in my mind so I can remember when things go sour that they can get better. I am not looking forward to the changes that may be coming, but I am tired of worrying.
If scleroderma was a person, he would be the biggest jerk alive. He is not someone I want to associate with. He may make himself very hard to ignore, and he may beat me up a bit, but I am not going to let him get the best of me.
Let us all keep hope alive for a truly effective treatment and ultimately a cure for this hateful disease.
Email: Withheld by request
Story posted 04/30/04 SLE
Story Artist: Judy Tarro
Story Editor: Judith Devlin
What is Scleroderma? PDF Brochure
Judy Tarro, ISN Artist, created the digital photo to illustrate the story on this page.
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.