My name is Jackie. I am 39 and married with 2 children aged 15 and 12. I was diagnosed with UP when I was 20. I was told by a dermatologist that there was no cure and to expect more spots by the time I was 30. I have a lot of spots on my thighs, legs, arms, feet, back of hands etc. Over the years I have had heat treatment (a lovely tan) which made no difference and anti-histamines. My legs change colour when I walk, go bright red and sting and burn. They settle down after about 20 minutes but are painful. I seem to suffer more in the cold weather, when my neck and face get sore. The itching is changing, it seems to be altering, I don’t itch as much as I used to. I suffer from a lot of headaches, feeling light-headed, aching all over, pains in my joints and very loose bowels.
I decided a while ago to go back to the doctor and try to get referred. After doing my own research on the internet I thought I am going to sort this out. I know there is no cure but there must be some medication I can take to ease the symptoms. I managed to get an appointment and I saw a haematologist who had heard of it and is going to help me. I had blood taken and have to go back. He checked my tummy and looked at my spots and asked me lots of questions. At times I was doing all the talking but he listened which was great. I said “do you believe me?”, he said “yes”. What a relief! I said “do you know much about this”, he replied “a little”. Which made me feel down again. But after talking some more he said he knew a doctor that he would e-mail. He also said that before my visit here he had been looking on the internet himself.
Well at least it’s a start as over the years I have been told I am depressed and need to see someone! That’s why I have left it all these years. I had a stay in hospital about 5 years ago with an unexplained stomach infection, they suspected gall stones but the scan was clear. I often asked the doctors are my health issues connected with my skin? Always the same answer NO! I believe they are, I am not mad, I know my own body! Of course there are days when I feel down and depressed but on the whole I do have good days, I keep busy but fighting against fatigue is no joke!
[urticaria pigmentosa, UP, skin spots, joint pain, gastrointestinal symptoms, adult]