Scleroderma? Me? It sounded like an exotic Italian food. I imagined being in an Italian restaurant and the waiter asking me, “Will you want breadsticks with that sclero primavera?” But I was not in an Italian restaurant; as far as I know, there is no such thing as sclero primavera. My rheumatologist was not saying “scleroderma” and ordering lab tests to determine how far this disease had progressed in my body.
Thinking back, remembering how the different symptoms appeared and not realizing that perhaps they all could be related to each other, I guess I may have had limited scleroderma for the last year and a half to two years and did not know it.
It probably all started in the latter part of the year 2000. I am a pharmacy technician and after over twenty-three years (at that time) of doing the same repetitive motions of typing prescriptions, making change at the cash register and the like, my wrists were beginning to give me problems.
I went to my primary care physician (PCP). She thought perhaps I had carpal tunnel syndrome, the occupational hazard of repetitive motion. I was told to buy wrist braces to wear at work, which I did for about a month. Besides making me clumsy, my employer told me not to wear them as they interfered with my work performance. So I worked and am still working without them.
As I remember, time passed with little changes. Occasionally, my fingers would stiffen, become numb, or both. Within a few minutes, they would return to normal. I always thought it was the carpal tunnel syndrome flaring up.
In March or April of 2001, I noticed some changes in my face. It began to feel tight, but not all the time. It also would go away, like the stiffness and numbness in my fingers. I also noticed a couple of hard spots in the jaw area on each side. Silly me, I thought it was just due to aging as I am in my late forties. My face did not bother me as far as discomfort was concerned, at least not at that time. So I did not really think much of it.
In June or July, while I was at PCP's office for a routine visit, I mentioned the condition of my face. By that time, the hard spots had grown to include both of my cheeks. The doctor felt and examined my face, then wrote out an order for the first of many lab tests to find out what was wrong. There was no mention of scleroderma.
August and September consisted of lab tests that showed nothing. At one point, my PCP thought it might be my thyroid. It was not. Another lab test was ordered in mid-September: something different from the others for what the doctor called a “long shot.” This was when the word scleroderma was first used. Those tests also came back negative and scleroderma was ruled out.
September was not over when my face suddenly flared up. The skin became very tight and pulled with every movement. At times, the discomfort was unbearable, and I could actually feel it spread down the sides of my neck and up to my temples. I was on the phone with my PCP and her staff almost every day for about two weeks relaying the symptoms. My condition was still a mystery and out of desperation, my PCP referred me to an endocrinologist.
After a couple of weeks of waiting, my health insurance denied the referral with a reason that, still to this day, makes my PCP's staff laugh when mentioned. The insurance company suggested that I go see a gynecologist! My PCP tried to help me by prescribing pain pills. One brand literally knocked me out; just one tablet before bed kept me drugged all the next day, which I did not like. Another brand worked better and caused less drowsiness, so I take it when I am at home on my day off work. Over-the-counter pain relievers had little effect on my discomfort taken singly, but my PCP's nurse suggested combining several of them, which helps me for work because they don't make me sleepy.
October brought another lab test and I noticed reflux (heartburn) problems during the night while trying to sleep. It became so bad that in the morning, I had the sensation of something stuck in my throat. Over-the-counter medications did not help much, so I asked my primary care physician for a prescription for heartburn medication, which seems to have solved the problem. Along with the reflux, I noticed my hands were swelling and stiffening more, and staying that way. The ability to grasp things like coins and pieces of paper was diminishing. I could no longer pop open a soda can without using something to pry the tab up for pulling. I still thought that it was due to carpal tunnel syndrome.
Yet another lab test took place in November and my PCP submitted to my health insurance a referral to a rheumatologist. She honestly was at wits' end with the obvious conditions ruled out by all the lab tests. After all, the tests proved it was not my thyroid, or scleroderma, or any other disease. So why did I have all these weird symptoms?
In mid-November, my health insurance approved the referral. The earliest appointment I could get was over two months away in January of 2002. Surprisingly, there were no lab tests in December. By then, I had learned to deal with the facial discomfort, as well as the stiffness and swelling in my hands. It did no good to complain; it did not make any of the symptoms decrease or go away. So I dealt with them as best I could. I am still dealing with them.
As my appointment grew closer, I became more anxious. What was this rheumatologist going to find? What was actually wrong with me? Was it just my imagination? I began to doubt myself. I did not want the rheumatologist to think I was a hypochondriac. Yet, I really needed to know what was going on with my face and hands. I did not sleep well the night before the appointment. My imagination was racing through all sorts of images and by morning, I was still tired.
I arrived thirty minutes early to fill out background paperwork that had been mailed in error to another “Susan Andrews” in another city. By the time I finished, forty-five minutes had passed. I turned it into the receptionist and waited for the doctor to see me. About five to ten minutes later, the rheumatologist called me into his office. We discussed all the paperwork I had filled out. He questioned me on some of my written answers and took notes on everything I said. After ten minutes, he directed me to an examination room.
I will always remember this room as the pretzel room because this is where he examined me to see what movements I could and could not make. I was gently twisted and turned into different positions. I felt rather like a contortionist at the end of the session. He took out what looked like a jeweler's loupe to examine my hands. He seemed most interested in the tips of my fingers. He checked my feet. He measured how much I could open my mouth, as the tight skin had affected my mouth and jaw. Throughout the examination he took notes. He asked where on my body I was sore or stiff. The entire examination took maybe fifteen minutes. Afterward, we went back into his office to discuss what he had found.
According to the rheumatologist, everything pointed to scleroderma: the tight, hard feel of my face; the stiff, swollen hands; the stiff neck I had been experiencing for the last two weeks; the tenderness of what he called ulcers on the tips of my fingers; the dryness of my hands I thought was due to the cold winter weather; and reflux (scleroderma had affected my esophagus). In other words, he deduced systemic, limited scleroderma.
He gave me a pamphlet put out by the Arthritis Foundation entitled“ Scleroderma.” He also gave me some samples of a fairly new drug for the reflux and asked if I needed any prednisone (steroids) for the pain and swelling. I declined that offer as I wanted to last as long as possible without having to depend on steroids. Steroids always seem to make me blow up, especially one to two weeks after finishing a course. I did not want to deal with that. He wanted to see me again in March.
I sat there with a strange feeling; I was literally numb inside. It was a sensation I hope never to repeat. I had been told I did not have scleroderma. Now I do. I was sent for more blood tests. The rheumatologist's handwriting was hard to read, but one test looked like it involved either RNA or antinuclear antibodies Antibody Tests (ANA). As of this writing, I am still waiting to hear the results and probably will not hear until I am seen again in March.
The following week I visited my PCP. We discussed my visit with the rheumatologist. She told me she really secretly suspected I had scleroderma, even though the tests she had done were negative. She also mentioned there might be changes in some of my medications for high blood pressure, heart rate, high cholesterol, thyroid, and high blood sugar. I am a borderline Type II diabetic. Yes, I have all these ailments. I was sent for more lab tests to check my cholesterol, thyroid, and blood sugar levels. She wanted to see me in February. I will find out those results then.
So let us see: First, I am told I have scleroderma. Then, I am told I do not have scleroderma. Then I am told I do have scleroderma. Talk about swinging on a pendulum! Of course, the mental highs and lows have been hard to deal with at times. Every week or two, there is a new ache or symptom. Most recently, some of my fingers turn blue for no apparent reason and for about a minute. Then they return to normal. My shoulders and right shoulder blade ache most of the time, and the back of my neck is stiff all the time. Despite these things, I am still following my normal routines and duties the best I can.
I have always had a rather unique sense of humor. This has helped and will continue to help me get through this. I figure I will not have to worry about face lifts, but if a cure is ever found and my face returns to normal, I may find that my sagging face is dragging behind me from as far away as two thousand miles in St. Louis, Missouri!
How do I feel about the other symptoms? Well, I guess it could be worse. I can think of worse diseases than scleroderma. But I was not stricken with any of those. Perhaps I am somewhat still in shock. It is funny, but I never thought I would ever get something like cancer or, until recently, some unknown disease called scleroderma. Or was that sclero primavera with breadsticks?
New email address needed 08-06-09 SLE
Old Email Prefix: soose
Story posted 2-10-02
Story edited VH1: JTD 8-12-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Antibody Tests (ANA)
Carpal Tunnel Syndrome
Dysphagia (Difficulty Swallowing)
Microstomia (Tight Face)
Raynaud's (Blue Fingers)
Sclerodactyly (Tight Fingers)
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: