Hi everyone!
My names Hazel, I'm 23, I live in Shropshire in the UK and was diagnosed with SLE approximately a month ago. I'd been suffering from increasingly painful joints the previous two months and eventually it was confirmed that I was suffering from SLE. After the diagnosis I was abit worried to be honest and my family were concerned of course, however, I was hopeful that now I was on the right medication I could recover and start living my life again.
However, a month on and I've had little improvement. My knees, wrists, and fingers are particularly effected, with my fingers swelling and making it difficult to do just normal daily tasks. I always find it worst in the morning and with no or little relief till 2/3 o'clock in the day I feel like I've wasted the day.
The most difficult thing that I'm finding is that I can't do the normal daily tasks I want to e.g. cleaning the house takes 3 times longer, picking up heavy objects is near impossible and its just so difficult getting out of bed every morning. I'm on numerous pills - co-dydramol, naproxen, prednisone and planquenil (sorry if spellings aren't accurate) and I've even increased my steroids dose from 7.5 to 15mg a day to try and improve my condition but with no relief.
I'm just getting increasing depressed about the situation, the increased steroids aren't working, i can't do any exercise, just getting out the house is a real effort. There's the occasional day where I'm almost back to normal but then I come crashing down again the following day. I've had to postpone my masters degree because I can't complete the assignments and I feel like i'm completely useless at times.
Is there any advice anyone would be able to offer. I feel like I know more about the condition than the specialist I've seen and he doesn't seem to be giving me the answers I want. The only option I can see is to maybe increase the steroids further, I just know I can't carry on like this.
Thanks for reading. xxx
My names Hazel, I'm 23, I live in Shropshire in the UK and was diagnosed with SLE approximately a month ago. I'd been suffering from increasingly painful joints the previous two months and eventually it was confirmed that I was suffering from SLE. After the diagnosis I was abit worried to be honest and my family were concerned of course, however, I was hopeful that now I was on the right medication I could recover and start living my life again.
However, a month on and I've had little improvement. My knees, wrists, and fingers are particularly effected, with my fingers swelling and making it difficult to do just normal daily tasks. I always find it worst in the morning and with no or little relief till 2/3 o'clock in the day I feel like I've wasted the day.
The most difficult thing that I'm finding is that I can't do the normal daily tasks I want to e.g. cleaning the house takes 3 times longer, picking up heavy objects is near impossible and its just so difficult getting out of bed every morning. I'm on numerous pills - co-dydramol, naproxen, prednisone and planquenil (sorry if spellings aren't accurate) and I've even increased my steroids dose from 7.5 to 15mg a day to try and improve my condition but with no relief.
I'm just getting increasing depressed about the situation, the increased steroids aren't working, i can't do any exercise, just getting out the house is a real effort. There's the occasional day where I'm almost back to normal but then I come crashing down again the following day. I've had to postpone my masters degree because I can't complete the assignments and I feel like i'm completely useless at times.
Is there any advice anyone would be able to offer. I feel like I know more about the condition than the specialist I've seen and he doesn't seem to be giving me the answers I want. The only option I can see is to maybe increase the steroids further, I just know I can't carry on like this.
Thanks for reading. xxx