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It's a part of me and my life

After having gone through a stressful time from aged 10 to 14 years, when my family moved and I had to go to 3 new schools, I developed a facial rash and scaly scalp. I had never had skin problems before, although my mum said that I had dry, scaly ears as a baby! Eventually, my mum took me to the GP. and I was sent away with some special shampoo and some cream.

Over the years I would get a little rash on the side of my neck or around the scalp line but it was nothing that I couldn't handle or hide with make-up. During my four pregnancies my skin was clear but would flare up, mostly on my face, after each birth. During my second pregnancy my thumb joints were very inflamed and painful and I was given NSAIDs after I had stopped breast feeding but nothing seemed to ease the pain. At that time, I also tried a dairy free diet which seemed to help the pain. Eventually, the pain went but my  thumb joints were left disfigured.

After I hit the menopause at 53, I started to get pains in my arms and legs like knitting needles being stuck in them, fatigue and stiffness in my legs and back and a little rash on the top of both arms. I was referred to a rheumatologist but did not get a diagnosis.  A few months after this, I went through a very stressful period of my life and my skin exploded in a rash. The rash was of various sizes and a bit flaky in places.  Also under my arms and in the genital area. It was everywhere, except my face!  I went to and fro my GP who gave me cream but it was impossible to cover the rash and the cream seemed to make the rash worse and more widespread. Meanwhile, a few months later, I had a follow-up appointment with the rheumatologist.  He could see how bad my skin was and referred me to a dermatologist.

I was diagnosed as having "eczema crossing psoriasis". I was referred for UVB treatment, twice a week, over 20 weeks, which completely cleared my skin. I was also advised by the nurse to use emollient creams every day, a.m.. and p.m..  By now, I had also developed very painful Achilles tendons, knees, inner elbows, shoulders, some small joints in toes and fingers and overwhelming fatigue.  On a follow-up appointment with the rheumatologist he diagnosed me with psoriatic arthritis and enthesitis (inflammation of the tendons and ligaments).  I was put on a 6 week course of NSAIDs and physiotherapy.

I felt so much better and got a job as a support worker working with vulnerable adults within a complex which involved several miles of walking every day up and down stairs, bending, stretching and helping people in their day to day life.  I really enjoyed the job for two-and-a-half years but recently made the decision to leave as I felt worse than the people I was caring for.  I've been so fatigued and have had a flare-up of psoriatic arthritis in my ankles.  The right one became swollen, after crouching down to do some gardening and I couldn't walk for days until the NSAIDs kicked in. The rash has come back on my arms and a little on my back but I was told at the end of my UVB treatment to get out in the garden as much as possible and get some sun on my skin. I'm reluctant to use any creams except the emollient creams on it for fear of making it worse. I know that I can be referred back for more UVB but my skin is not bad enough at the moment to do so.

I seem to be in more discomfort with the psoriatic arthritis side of things and have always got stiff ankles which makes it difficult for me to crouch down to do gardening and housework.  I try not to use the NSAIDs too much as my GP says they can give you high blood pressure and kidney problems. I know that I can always be referred back to the rheumatologist if need be. I feel "down" a lot as I love walking, and some days I can't do much more than a short walk to town and back, but I try to just get on with it.  It's a part of me and my life. I get good days and bad days but I've always got the fatigue and discomfort.  The rash goes away in the winter and comes back in the summer, just when I want to wear short tops.  It's as if it's craving for the sun. My husband is very good but my parents can't really understand what it's all about as they've never heard of psoriatic arthritis. I'm one of five children and I can't understand why I've got this and my siblings haven't.

Submitted by a 57 year old female living in England

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