Subject: Hi ... Im new
Hello all. Just stumbled across this forum and so glad Ive found you all. My story is a bit long so please bear with me ... I was first diagnosed with RA back in 2006. I was going through a very stressful time in my personal life and working long hours. It first started with flu like symptoms and tiredness. Then one day while sat at my computer my right hand started swelling, then my other hand with what I would describe as a feeling of having badly sprained wrists. I was sent home and by the time I got there both my feet were in agony and I struggled to get to the doctors. He took one look at me and said straight off ... RA. However the test he did came back negative, but I was told this sometimes happens. He was brilliant and referred me straight to a rheumatologist. By the end of that week I had it in my knees, shoulders, neck and elbows. I couldnt walk, drive or even bare to have the duvet on me at night because I was in so much pain. Ide never known anything like it. It got so bad I went back to docs who put me on a low dose of steroids. This helped to a certain extent but I still couldnt function properly or return to work. I ended up on the sick for 4 months, eventually returning on a part time basis as it was all I could cope with. The Rhuematologist when I saw him put me on Sulphasalizine (Im sure Ive spelt that wrong!)and I also had a steroid injection into my right knee. Things ticked along for the next 12 months and seemed to settle. My main pain was in my feet and knees, the rest seemed to settle down but along with the awful fatigue I was suffering from I decided to give up work altogether in June 2007, one year after diagnosis. Fast forward a year and I fell pregnant at the age of 41 ... a shock to say the least. During my pregnancy I was taken off all medication apart from strong painkillers and I don't know if it was my pregnancy hormones, but my RA seemed to settle. I had pain in my knees and feet but it was bareable. Anyway, I had my son in July 2008 and almost immediately I started to deteriorate. Feet, hands and knees. I couldnt bare anyone to touch my feet and my fingers would swell up and go stiff one day and take 24 hours to go down again. I struggled to get up the stairs and the fatigue was back ... I know I had had a baby so lack of sleep added to this, but to me it was a different kind of fatigue to just lack of sleep, Ive had 3 children before and this was totally different. Anyway, I went back to the doctor who sent me back to my rheumatologist. Now this is where it all goes downhill as far as the NHS is concerned! He took one look at me and said ... I dont think it is RA. I think it is OA. because there is no significant swelling and no obvious deterioration since diagnosis. If it was RA you would be worse 2 and a half year after diagnosis... he then sent me for an MRI on my feet and hands. He refused to put me back on any medication apart from ibuprofen and sent me on my way to come back in 6 months. I had to ring the department to get my MRI results as no one had got in touch and was told all was normal. I felt so alone and rejected. I struggled on for 6 months on painkillers. Pain in my feet was continuing and every now and then Ide get inflammation in my hands and wrists and knees with stiffness. Next appointment with rheumatologist and it was a different consultant to the last one ... Im told its most definitely OA. That Im only tired because I have a baby (he was a year old by now and sleeping 12 hours through the night!) and that there is no swelling (despite me insisting I do get swelling) and the only thing he can put me on is ibuprofen. I felt like crying, as if he was calling me a liar and I was making it all up for attention. I was made to feel like a fraud and hypochondriac. Away I went again with an appointment for 12 months time. In that year I cant believe I struggled by on ibuprofen. Some days I could hardly walk with the pain in my feet. I had a young child to take care of and I couldnt even get on the floor to play with him as my knees would not allow me. Some days Ide just sit crying from the frustration of it all. At my next appointment I saw a different rheumatologist again who was german and I can honestly say I struggled to understand all he was saying ... who read my notes, had a quick look at my feet and hands and decided to sign my off!! I was so low by this point I just accepted it and went home, starting to feel like maybe I am imagining it, maybe I am just a nuisance. By now we had moved house and had a new GP so after that last hospital appointment I went to see him. He was lovely and totally sympathetic. He ran some more blood tests which showed normal again. But after examination agreed there was slight swelling in my hands and feet and put me on strong painkillers and celebrex. Ive coped reasonably well over the past couple of years on this medication. However, over the past 4 months or so my feet have got a lot worse. I have awful pain in my heels and balls of my feet aswell as my toes and Ill get a horrible ache right up my right leg to my knee which is bad enough to wake me up at night. The little and middle finger on my right hand is permanently swollen and both hands are so weak. I struggle to get up and down stairs and occasionally Ill get pain in my shoulders and kneck. Im so stiff in the morning that I have to hold onto walls and furniture to make it to the bathroom. I cant stand for longer than an hour with out having to take the pressure off my feet because Im in so much pain and i try to avoid walking as much as possible ... even a trip round the supermarket is a struggle and Im so grateful to have the trolley to hold onto. I havnt been doctors because the 3 rheumatologists I have seen have convinced me Im a fraud! However, after a summer of feeling like crap Ive got an appointment to see my GP this afternoon. I cant go on like this for much longer. I feel rejected and on the scrap heap. I cry alot and have a general feeling of worthlessness. Im sure Im suffering from mild depression because of all this and am sure Im going to end up in tears in front of the doctor when I start letting it all out about how Im feeling. I just dont understand how when I was first diagnosed with RA I was absolutely riddled with it and even without a positive blood test I was told it was definitely RA as it dosnt always show up in blood tests. True, its nowhere near as bad as it was then, Im able to drive etc but I know Ide struggle to hold a job down. Has this change of diagnosis happened to anyone else? I just feel so frustrated and now 7 years after initial diagnosis dont feel like Im any nearer to knowing exactly what I have. So sorry for my long ramblings but I wanted you to have the full picture which has lead to where I am today. If you read it all thank you for your patience. Ann.x
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