Hi my name is Clare. Sorry in advance this is going to be long! I'm a mum of 2 children (5yrs and 2yrs). I'm new to this site and really quite nervous about posting. I've read too much on the Internet that had put the fear into me and I've not openly spoken about what's happening to me outside of my family.
About a year ago I got a swollen little finger and went to the gp. He just said I'd strained it and it was a trauma arthritis it would go down in a couple of months. Despite telling him didn't recall hurting it or doing anything to strain it he insisted it wasn't anytjing to worry about. I wIted patiently but about a month or so later I got a swelling in my wrist and a slight pain in my feet. The doctors though I had a Mormons neuroma in my foot and said to try better foot wear. Not muchconcern for the wrist and again a possible strain. Then a few weeks later I got a sore shoulder and a tendon swelled up on my leg/knee area. This time a different GP sent me fur blood tests but these turned out normal - so no action required! I pushed as I was now struggling with stiffness and pain in my wrist and hand and shoulder so she referred me to the Rheumatologist. One GP tjought i had reactive arthritis do prescribed antibiotics - then almost immediately more things flared in my hands, a tendon and 2 more small joints. I was finding being active with my children stressful and distressing me. I pushed again for a sooner appointment with the Rheumy as it was now October and my appointment was for January - I got to see him in the November and he suggested Psoriatic Arthritis as a possible diagnosis. My bloods were all normal, I didn't and still don't have psoriasis only a slightly flakey scalp, and my nails were and are fine. I was confused and wasn't sure what this was at all. He told me not to Google but of course I did. I panicked! Everything I read was very depressing. I had a steroid injection in my wrist which settled it quickly. Everything actually seemed to settle. When I went back in December my Rheumatologist was pleased and said he'd see me in 4-5 months! I felt elated - maybe this was only temporary! But then 3 months later it crept back in a couple of fingers. I took ibuprofen but it slowly crept in and got worse. I managed to speak to Rheumatologist nurses (thankfully someone independently gave me the number - the hospital didn't). They were a comfort but it seemed ages to see the Rheumtologist. I finally got a cancelation and saw him in April this year. I was expecting methotrexate but he prescribed hydroxychloroquine. He said my bloods are totally normal with no raised inflammatory markers. Again I was sent away and to see him in 3 months. But 3 weeks later I was back in to see the nurses as things were just getting worse in my hands and feet. She's now given me a steroid injection so it's all settled again but I know it's just a mask. I've never read anyone only taking hydroxychloroquin and I'm worried they're just not taking me seriously cos they just keep saying my bloods are normal. I'm very confused as to why they're just not going for the aggressive treatment I keep hearing about cos I just keep worrying I'm going to be on this road for an unnecessarily longer journey than needs be! I still find it very hard to understand this disease as do many people write different things about it. I know everyone is different but I can't relax my mind and my childen really need their mum back. It's had a real impact in our family as no one an grasp it. My parents think it'll just ho away and my sister is just too busy . I think my partner is afraid of it but just says "what are you worrying about it's under control and you're on medication" but hediesbt get that the steroids will wear off and the hydroxychloroquin is likely to not work alone!!! Please be kind I'm really feeling isolated and alone. Thanks Cx