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Michelle's Story

Michelle is 30 and lives in London. In January 2000, I started noticing my fingers getting stiff; I wasn't too worried at first but was aware that something didn't feel right. I seemed to be very tired in the mornings, which was very unlike me as I'm very much a morning person and I couldn't understand it. I was also getting quite down and would just cry for no reason at all, I kept asking myself why am I feeling like this I've just got engaged I feel so happy with my life it just doesn't add up.

There would also be days when my shoulder would seize up and I couldn't move it but then the next day it would be gone, I would get a pain in my jaw and then two days later it would be gone. It is only now that I'm able to put all of these symptoms together as at the time I thought they were all individual little "niggles".

In March 2000, my partner and I went on holiday to South Africa and had 10 glorious days basking in the sun. My shoulder seized up a couple of times when we were there but I just thought I must have strained it. Two days after we got back everything started to go wrong and my joints seemed to seize up on me. From the moment I woke up I was in agony, I couldn't lift my leg to get in the shower, I couldn't twist my neck, my hands were really sore and I felt absolutely dreadful. By late morning I seemed to loosen up but by late afternoon it had started again and I would turn up at my boyfriend's house in tears on the doorstep as he bundled me into a hot bath. I went to see the GP as soon as possible and they did various blood tests and gave me some painkillers. Nothing showed up in the blood tests and when I told them that the pain killers weren't doing anything they gave me anti-inflammatory drugs. On one occasion I wasn't able to see my usual GP and instead saw a locum, by this point I was pretty desperate and broke down crying explaining that I was finding it very difficult to cope. Her response was "Come on pull yourself together you just need to get on with it". When people respond like this you automatically start asking yourself, is this all in my head, maybe I should be stronger?

I was then referred to a rheumatologist who diagnosed me with psoriatic arthritis and prescribed a course of treatment but said that it would take about 6 months for the drugs to start working. I felt relieved to think that there was light at the end of the tunnel but still quite daunted by having to cope feeling the way I did for another 6 months. A couple of weeks later I woke one morning and couldn't get out of bed to go to work. I took a week off and my mum came down from Newcastle to look after me. I then took another week off as I felt no better. My rheumatologist upped my medication but my symptoms seemed to get worse, I had fevers, cold sweats, chest pains, constantly nauseous and I was finding it difficult to breathe. My rheumatologist thought that the difficulty breathing may have been caused by one of the anti-inflammatory drugs and stopped them straight away. My breathing got worse so we called the rheumatologist at which point he said call an ambulance and get to hospital as soon as possible.

When I arrived at the hospital they gave me oxygen and said my temperature was really high. All I kept thinking was my temperature had been far worse the week before and we had managed to bring it down with Haagen Dazs! I felt so relieved the whole time I was in hospital as I just kept thinking at last I'm in safe hands and being looked after. They cranked me up with steroids so my joint pain disappeared, it was sheer bliss all I had to do was lie there and rest. They tested me for everything but it was only on the last day that they actually told me that I had pneumonia, fluid around the heart and psoriatic arthritis. I went into shock as all I kept saying was how could I become so ill? I'm never ill and nobody could explain it. I had a follow up appointment with the consultant that did my heart scan at the hospital and he said that he thought I may have Lupus.

Everything started to get easier from that point. When I first saw my rheumatologist after I got out of hospital he said he was very relieved that it hadn't been more serious as he'd thought I may have had a collapsed lung. He also told me that because they were treating me for psoriatic arthritis, the drugs they'd used had aggravated the Lupus and caused it to flare more badly. My rheumatologist was then able to treat me with the correct medication and keep a constant check on me. I was able to read up on Lupus and take much more responsibility for my own health and after two months later I was able to go back to work. I joined a support group and felt that wonderful release of being able to talk to people who understood. My appointments with my rheumatologist were always quite brief and I didn't really feel that all my questions were explained so I asked to be referred to St Thomas's. It was the best move have ever made as from my first appointment I felt in such safe hands and all of my questions were answered.

I've had a couple of flare ups since but only involving my joints and fatigue and have adjusted my lifestyle according. My employers are very understanding and have allowed me to reduce my hours when I've needed to and have never let it stop them from giving me promotion. I have a wonderful husband and very supporting family and friends who help me cope on a day to day basis! Nobody bats an eyelid if I'm in bed all afternoon or need to rest, it just feels normal. My GP has been a brilliant support and even if he didn't know the answers would listen, sympathise and do the best he could. When I have appointments with him now and if I say I'm tired he'll say at least you've got an excuse! That's the way it should be and he's right I'm the only one out of all of my friends who has an excuse for going home early!

On a daily basis the symptoms that bother me are fatigue and joint pain but I'm very fortunate to have a mild form of the disease and by making sure I rest a lot, give in to my bad days and generally take it easy I'm able to control the disease without it controlling me