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Hi everyone,

I have not been on this site for a couple of years as had very little trouble apart from osteoarthritis. I am 38 year old lady living in the UK. I am a mum of 2 lovely children and work part-time.

My symptoms starting around 3 years ago. I broke out in a itchy hive throughout my body. It was whenever I was in contact with tap water (strange, never had a problem before!). I was starting out in a self-employed business and under stress. I started to develop joint pain and felt worn out, I have back issues but these were work related from another job, I was getting thumping headaches and my memory was rubbish. The joint pain would move around but mainly shoulder joints, hands & fingers, knees with no obvious swelling. I started to comfort eat as I felt very depressed as I was in pain. I gained 4 stone and made the mobility worse. Anyway, I had various drs appointments to try and find why I was having pain and fatigue. I had a low ferritin level with small red blood cells, positive ANA (not sure the ratio as information here is not widely given) and that was about it. I saw a neurologist who strongly recommended that I see a rheumatologist. Somewhere along the line I had two more weak positive ANAs - again no info on pattern or ratio.

Fast forward a few months and I got my rheumatologist appointment. The rheumatologist was very thorough, she went through my whole medical history. She said that my ANA was suggestive of SLE but she needed to test further. The rheumatologist did say I didn't fit with the classic symptoms of SLE, having no rash, fevers, etc. Blood tests still revealed a weak positive ANA and a weak positive ANCA and nothing further. The rheumatologist didn't want to see me again and it was left at that.

I started to develop cold and nasal sores during the past 3 years, hayfever (not had it like this before) and dry flakey areas on the face after being in the sun. Last year wasn't too bad with symptoms (we had a very wet summer in the UK).

Since the past month my scalp has started to get sore when being out in the sun (even for the shortest time). It doesn't always happen straight away, maybe a few hours later. My hands and feet get cold easily but don't turn blue but pale and cold - these have started to hurt deep in the muscle. Yesterday I was briefly outdoors and today I feel like I have been hit by a truck. I am so achey and tired. I have struggled to keep up with the housework and just holding things hurts. My brain feels like it doesn't want to work and I just don't know what's wrong with me. I saw a dr yesterday and she is testing me for Phorphria (hope I spelt that right) - there is no family history of this and she is writing to the Rheumi to ask for what further tests can be done.

Sorry to vent, I feel like so many on here just wanting to find out. One good thing is that I managed to loose all the extra weight (4 stone) and down a very healthy weight.


Clare x

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