Jenny S: Morphea, Etc.

I have been off and on this site for over a year and finally found the guts to post.

After a biopsy, I was diagnosed with morphea at age fourteen. A small spot, size of a quarter on my lower back that progressed to the size of two of my hands. Being an obstinate teen, I did not really listen much to all that adult chatter, but wish I had!

I was on Potaba, twenty pills a day until my early twenties, when I decided I was going to take control of my life and heck with the scleroderma. I was going to do what I wanted when I wanted. I stopped taking scleroderma medicines, stopped going to scleroderma doctors and the worst rebellious decision was that I started smoking. No one was going to tell me what not to do. We all make dumb mistakes and that was my biggest one. I am now struggling to quit, with limited success.

I really did not have a lot of symptoms early on, just itching, cold hands and feet and low self-esteem issues due to everyone always staring when my back was exposed (in the locker room, swimming, etc).

Over the years the affected skin area continued to spread, then stop, spread, then stop, until one day my brain dinged... It always stopped in the summer. So one fall when it was spreading, I decided to test my theory and went to a tanning bed for a month, and sure enough it stopped spreading! Now every time I start itching and notice it spreading, I go tan. I have no clue if these are the same rays that I have heard talk about, and I am not endorsing tanning beds. I just know it has worked for me to stop the spreading. It does not help with other symptoms, though.

Other problems I have had as an adult is cold, cramped, tingling and numb hands and feet; acid reflux that I ended up having some kind of stomach wrap surgery for because medication stopped working; three broken bones in two years, diagnosed with Crohn's disease which my gastroenterologist chalks up to the scleroderma; two ear surgeries to remove excessive scarring and insert prothesises so I could hear at a normal level again.

The skin area now affected starts midway down my shoulder-blades, goes around my sides to my abdomen and clear down my lower back. I also have what looks like a map of the Hawaiian Islands in one area. It is all one large area except for my "islands". The skin is indented, kind of reddish and white, and looks to be thin with veins showing through.

After many years of not seeing doctors and thinking I could do this on my own, I have finally grown up (at thirty-seven years old) and have my first doctor's appointment with a rheumatologist in fifteen years. What woke me up is that I am also now having a lot of mid-back pain. I believe the scleroderma is affecting my back muscles. I quit full time work as an EMT because I was having a hard time lifting and having a hard time starting IVs and drawing med's with my cold, numb, cramped hands.

I have fears that I will lose the use of my back muscles if it gets too bad. I am afraid to see the doctor because I might get a diagnosis that I do not want (like what if I have systemic scleroderma, also).

I am tired of just dealing with the pain. I am tired of dealing with my family doctor who does not know anything and does not want to prescribe pain medications, even when I tell her that taking over-the-counter stuff is like eating skittles.

I fear I will never get back to work to the job I love. I am taking this step towards the rheumatologist because I know I have to, but I am afraid.

Webmaster's Note: Recent research shows that about 0 to 2% of people with morphea may eventually develop systemic scleroderma. About 25% of people with morphea may experience one or two symptoms beyond just skin involvement, without further progression. In other words, 75% of people with morphea will not have any other symptoms, and 98 to 100% (depending on the study) will not progress to systemic scleroderma. Certain antibodies may help detect those who are at risk for progression.