Recently I came across sclero.org while researching my illness that has not been recognized neither in my native country (situated in the North of Europe) nor in Italy, where I moved twelve years ago to escape from cold winters which have destroyed my skin.
I learned that a lot of people all around the world have the same experiences and symptoms as me. I was a teacher of English in my town of origin and was rather healthy when suddenly I began suffering from the cold. I must say that the temperature was somewhat about -35 degrees Centigrade. My nose was swollen and a red spot appeared on the tip of it, which further became an erosion.
I always caught anything and so I thought that it was a sort of nasty cold which was manifested on the skin. But the time passed and nothing improved. More than that, my body began to change and deform. My hands and especially the fingers were affected (rheumatism, as one of the doctors told me). They were no longer thin and the skin was no longer elastic. They started to become deformed, white, always cold, and stiff in their movement. The feet were also cold even in warm fur boots.
Then the disease extended to other parts of the body, always involving the skin, with the formation of lesions and hardening of the skin, with swelling of fingers and toes.
By 1994, when I was thirty-seven years old, I really was not feeling well. I could no longer live in the country, where I was born, because of long winters and that is why I decided to move some where in the south. I thought even of going to Africa, so hard was my pain!
To facilitate this transfer I made up my mind to marry and made an advertisement. Soon I got married and moved to Italy. However, almost nothing has changed. Only the erosion on the tip of the nose appears not so often, but it is always present when the temperature falls below zero.
Worse than that, anemia has appeared and I began to lose my weight (early it was 62 kg). I went to an endocrinologist complaining of spots on the skin, weight loss (it reached 48 kg) and extreme sensitivity to cold. The doctor ignored those symptoms saying that I had nothing. He advised to use a shampoo for delicate skin only.
After going from one endocrinologist to another, I decided to study myself how to get rid of the illness that nobody could recognize. By that time my periods were very irregular. I decided to control my thyroid. The analysis of TSH was out of norm. It was 46 units which is ten times more than normal (normal is considered up to 4 in Italy), and my doctor could not understand how I was even walking around. Although he never did a complete examination, he prescribed thyroid medication against the autoimmune disease called Hashimoto's thyroiditis, which was diagnosed, because the positive antithyroid antibodies were found.
After a few months on it, I felt better, but it did not help with the cold the same and the fingers were worse. I returned to the doctor every six months without any result. The doctor ignored the symptoms that did not enter in the symptoms of the thyroid disease.
Worse of all is my throat now. No medication can help me. After going from one endocrinologist to another, I went to the ears, nose and throat specialist, but neither he could explain the symptoms I have. So I decided to investigate my symptoms myself one more time, because all the doctors only told me, "You should start to feel better once you take the right medication for hypothyroidism."
To my mind, my medication seems to regulate some things only like I am as tired like I used to be before the medication. But the spots on the skin remain, my weight does not increase, the persistent cough does not cease, general fatigue remains, sensitivity to cold continues, and my skin thickness has worsened.
I should mention that now just walking up a flight of stairs is almost impossible because of the strong pain in my hips and in my back. Recently I started having digestive and severe swallowing problems. The doctors had no explanation to that fact.
Two years ago a brown mark (10 cm long) appeared on the hip, small marks also appeared on my face, almost certainly this is another manifestation of the same disease. I consider anemia normal in me. I have had dental problems and the dentist cannot tell me what is wrong with me. I began to have spasms and morning stiffness, so that I cannot move even the head from the pillow.
I gave up teaching and became a housewife. My husband recently told me that I am lazy not to work. He wants me to be a perfect wife. I coped with my illness, yet nobody seems to understand me, neither my husband nor the doctors. It makes me very frustrated.
I waited twelve years to seek help to understand what I suffer from. My life has totally changed for the worse. Now, having read the information on sclero.org, I am trying to find out if I have scleroderma.
What is the real cause of my sufferings? Please, write to me.
Story edited 12-01-06 JTD
Story posted 03-30-07 SLE
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
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