I've responded to a couple of the threads further down and just realised that I should probably introduce myself first :rotfl:
I started having problems in June 2006 when, after one afternoon at the beach in not so sunny Scotland, I woke up the next day looking as though I had the plague. I've never seen anything like it before and although it still flares up under the lights at work and out in the sun, its never thankfully as bad as it was that first time.
So that was all until June 2007 when I started having trouble staying awake during the day. I've fallen asleep in bus shelters and even standing on the pavement waiting to cross the road. That's all it took for me to be sent for a sleep study last July.
After that my joints started to niggle slightly, always my left leg until one night I ended up at A&E because I couldn't left my leg off the floor without being crippled with pain. They thought a cyst on my ovary at first then said it was probably IBS. I've always had IBS and it never felt like that!
That leg got better and then my right hip started to hurt, the next day it might be my knee or my ankle. Walking any distance made it worse and now I hurt after resting too. When trying to walk after any time sitting down I'm like Bambi on Ice.. its not pretty :lol:
Dermotologist says I have sun sensitivity, I often have to use a walking stick to ease the pain and had to take anti-inflamitories to ease the pain. I was put on Amatriptalin for my daily headaches but have been taken off that last week because its playing havoc with my IBS.
Anway, I finally got to see a Rheumy and after two visits she gave the diagnosis of 'probable SLE'. She says that I don't fit a typical lupus case as my ANA is negative and I don't get swelling in my sore joints. Also because I have no hair loss or organ involvement yet. I've now been taking Plaqunil (sp?) for about 6 weeks and in the last two haven't had to use my stick much at all. I really hope that's a good sign that this med might work for me!
Anyway, that's my story! A bit long winded sorry so if you're still reading, hats off to you and thanks! I look forward to getting to know you all.
Claire
x
PS. Got the results from the sleep study in Feb 08 and I have Sleep Apnoea. Will get my CPAP machine home after a night in hospital at the end of the month so hopefully I'll stop looking like a down and out in the bus shelter! ~l~
I started having problems in June 2006 when, after one afternoon at the beach in not so sunny Scotland, I woke up the next day looking as though I had the plague. I've never seen anything like it before and although it still flares up under the lights at work and out in the sun, its never thankfully as bad as it was that first time.
So that was all until June 2007 when I started having trouble staying awake during the day. I've fallen asleep in bus shelters and even standing on the pavement waiting to cross the road. That's all it took for me to be sent for a sleep study last July.
After that my joints started to niggle slightly, always my left leg until one night I ended up at A&E because I couldn't left my leg off the floor without being crippled with pain. They thought a cyst on my ovary at first then said it was probably IBS. I've always had IBS and it never felt like that!
That leg got better and then my right hip started to hurt, the next day it might be my knee or my ankle. Walking any distance made it worse and now I hurt after resting too. When trying to walk after any time sitting down I'm like Bambi on Ice.. its not pretty :lol:
Dermotologist says I have sun sensitivity, I often have to use a walking stick to ease the pain and had to take anti-inflamitories to ease the pain. I was put on Amatriptalin for my daily headaches but have been taken off that last week because its playing havoc with my IBS.
Anway, I finally got to see a Rheumy and after two visits she gave the diagnosis of 'probable SLE'. She says that I don't fit a typical lupus case as my ANA is negative and I don't get swelling in my sore joints. Also because I have no hair loss or organ involvement yet. I've now been taking Plaqunil (sp?) for about 6 weeks and in the last two haven't had to use my stick much at all. I really hope that's a good sign that this med might work for me!
Anyway, that's my story! A bit long winded sorry so if you're still reading, hats off to you and thanks! I look forward to getting to know you all.
Claire
x
PS. Got the results from the sleep study in Feb 08 and I have Sleep Apnoea. Will get my CPAP machine home after a night in hospital at the end of the month so hopefully I'll stop looking like a down and out in the bus shelter! ~l~
