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Hi my wife is the one with RA. Diagnosed 2yrs ago. Methotrexate + steroids then sulphasalazine 6 days severe reaction. Leflunomide 1day severe reaction. Nothing 5 months then Enbrel 6 months some relief then infection stopped 2wks recommenced never improved again, got worse. Now humira 3 injections so far getting worse by the day. Pain off the scale, mobility worsening, severe exhaustion, feet so painful, all joints same. Sleep so disturbed 2hrs at time if lucky. Has also had ME and fibromyalgia for 10+ yrs. only 55 so so painful to see. Wants to stop all treatment as been 2yrs hell, so so much worse since treated.anyone experienced same, any ideas tips etc? We are both nurses so reasonable sensible re health issues but this is killing my wife, no life at all, no light at end of tunnel RA consultant ignores ME fibromyalgia, ME ficonsultant saw for 10 minutes no assessment heard word RA and blamed that and discharged. My wife needs her life back HELP PLEASE
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This is Dawn, Wastwaterman (Simon's), wife replying to you.
Firstly, thankyou so much for taking the time to reply and it was not long-winded, but infant very informative. I sometimes feel guilty for not sharing my own experiences, but you will know only to well how "alone" this miserable combination of hell's conditions can make you feel!
I have stopped all treatment after 2 years and am taking a "morphine"holiday!! I have not totally given up hope and am seeking a second opinion from a consultant in Oswestry, Dr Askari. He looks at the whole lot, admits you for a week of tests, physio, OT etc,etc and then looks at treatment options. His opinion and advise may not give any new answers or even treatment, but at least it is an holistic approach. The consultant I have been seeing only looks at you as an RA condition and although not said, does not, I believe, consider ME to be real!! Like myself you have probably met many dr's who are less than sympathetic!
Again thank you so much for responding and caring about someone you do not even know. I now feel less alone and realise I have been selfish in not sharing my experiences with others out there. So you have also encouraged another sufferer to "share".
With my kindest regards.
As far as sharing is concerned, I wish we all did more. When I go to the Rheumatology Clinic nobody speaks to anyone in the waiting area although we're all there with more or less the same thing. I find myself looking at people to see if their hands are swollen too, etc! Take heed of the woman who, like me, was heavier than usual and had puffy hands but still had beautifully manicured, painted nails - I liked her, nothing's going to keep her down! (As a former devotee of high heels, I must give some more thought to devising some attractive shoes!) Much luck in Oswestry - I think you may be on to something with the "big picture" idea.
Best regards, Kim
God bless you you've made me laugh!! Maybe you should write a book! You sound like me the bolshy, middle-aged, angry, botoxed, filler faced, I WANT MY FIVE INCH HEELS BACK woman I had almost given up on. I'm with you all the way!!
Thanks again and I will let you know, after my "morphine holiday" how things go in the next chapter of this journey!! Humour is great and you're right why do we all sit in the waiting room sneaking peeks at other peoples hands and feet, except in my case, coming from the Midlands, openly doing so. I"ve tried to instigate conversations and I do not understand the reluctance to talk about this? Maybe people feel doing so will only make them aware that there might not be any hope?
Thanks again for the smile with your wonderful sense of humour and wit.
All the best, Dawn
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