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Finally, I've plucked up courage!

731 Views 14 Replies 11 Participants Last post by  JudifJ
Hi everyone,

I've wanted to post on this site for ages now, but my nerves kept failing me! I didn't think anyone would be interested in me, but I now realise what lovely supportive, kind people you are and I could do with one of those 'virtual hugs' too! I've had Lupus now for almost 6 years and apart from suffering really badly initially, I've had a few flares over the years. It is always awful in the sunlight when I get the most terrible red, itchy rash and look like a freak having to cover up, I have to cover myself in suncream even in Winter. I have a bad allergy to nickel as well. This February I am having the biggest flare ever! My mouth was covered in ulcers which was a warning to me what was about to happen! My muscles are currently aching like crazy, even my toes! I could sleep forever, yet can't at night as I'm in so much pain. I couldn't even hold a hairdryer the other morning. My poor hair has suffered over the years too and I have thin patches, some of which have grown back thankfully. My GP has put me back on Prednisolone and I am trying to wean myself off them gradually until my rheumotologist appointment on 26th March. They cause me to have stomach pain. I was on 30 mg daily, but when I got down to 10 mg daily, I couldn't walk down the stairs. I can manage the pain now on 20 mg daily, but I hate taking them. They aren't always too effective for me with the pain, but do stop the rash and hair loss. My GP is very supportive, but not sure he fully understands the disease.

I had recently been redeployed from my job to another totally unsuitable one which involved different hours and driving longer distances, more than coincidence that I had this flare, which I'm certain was triggered by the stress of it all. Had a bit of a job convincing my employers that the job was unsuitable, but finally am getting somewhere and they have offered me another post which is going to be better for me I think. I have had the past 5 weeks off work and have been feeling very sorry for myself. This site has helped me enormously, non-judgemental and people who really understand. Thank you and best wishes to you all.
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Hello Frances

Just wanted to add my welcome too! My rheumt appt is the 25th so we can compare notes!

Where in East Sussex are you? We've just moved to Hawkhurst and our house is only 200yds from the East Sussex border. I have my best friend in Rye (known her since school days and I'm now 49 :hehe: )

Hope you are doing a little better today.

Have a happy and blessed Easter.

Love Judi xx
:flowery: Oh, Frances, what a day! I would be beside myself in incredulity. At least I managed to get to and from the rheumy yesterday without incident (well, if you count forgetting to mention half my symptoms and my list as not incidents :lol: ).

Hope your GP appt tomorrow goes to plan: I will be thinking of you!!!

Love Judi xx
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