so I'm becoming frustrated to say the least. Flare started Christmas Eve but luckily only lost use of right hand. Had to work all through but I have had staff in today so can lick my wounds between feeling sorry for myself with the pain. I was due to start immunosuppressants forty eight hours ago but when I got the packet ready and had screwed up courage, I found no dose instructions, only to be taken with food, so now have to wait tll tomorrow to speak to gp about dose. The most frustrating thing is to be in 'their' hands and to lose control.
Maybe a nights sleep (if I'm lucky) will make me feel more positive tomorrow.
My very best wishes to you all, have a good night's sleep, tomorrow is another day!
Written by
KathinAyrshire
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Bless u kath! I swear if it was totally left up 2 the Doc's we'd all b screwed lol! B proud of u'reself, u're achieving so much considering all u're going thru, I'm in awe of u still working! Big hugs my lovely x
Kath - try 2 co-codamol before sleep? You can buy it over the counter, and althought you may get a lecture from the pharmacist about it being addictive, that really isn't a worry if you don't take them constantly.
Do hope that yoiu have gpt the dose now and are doing better. I too in awe of you for still working I had to stop that a number of years ago. Take care and all the best.
Just a question ,when you flare do you get the horrid toxic flu like symptoms ,the overwhelming stiffness,sore glands ,can barely move ,to go with your right hand impairment ?i hope it eases for you and you can try your meds soon .take care brave
Dear Brave, always feel as if I'm starting a cold, sore throat, aching ears and swollen glands all over the place! Some joints, particularly spine in flare take about 30 minutes to start moving in the morning, one or both hands flare so that fingers look like raw beef sausages and so swollen from elbows down nothing will move and pain in insurmountable, sometimes feet in the same situation but the pain from them is manageable.
Took the meds today, twice a day apparently, but they may take a couple of weeks to kick in. Here's hoping sooner than later as had to stop all other medication in the meantime and pain still severe in right hand, but there are lot of folk far worse off than me, so shouldn't complain, just sometimes need to let off steam to folk that understand.
Thank you so much for the good wishes, here's back at ya. Take care.
Hi Kath, I do sympathise with your feelings of frustration - that wolf of ours has a lot to answer for. I hope things will change for the better very soon and wish you a Happy and Healthier New Year ..and beyond. I think you are a trooper managing to work despite all... <3
Thank you Nightjar, being self employed and having a number of animals reliant on me for their care gets me up in the morning and keeps me moving, I enjoy my work so much but as this infernal disease takes a hold it looks as my time working may be limited, but to give up a job I enjoy so much will be a last resort.
Thank you so much for your good wishes and I do hope that 2013 brings you better health too.
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seen Rhumatologist for first time, wasn't expecting this...
Could I have been misdiagnosed with Rosacea?
48 hours of mutations. Evening rashes are worse 🤷♀️ Or in my head 
I’m posting a lot I know but I feel so hopeless
