Work, mind and body: Ive still not been diagnosed... - LUPUS UK

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Work, mind and body

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Ive still not been diagnosed as yet,I'm now in the possibly fibromyalgia/connective tissue disorder? Dont really know category . Im up and down, and am on 150mg levothyroxine, B12 injections, hydroxychloroquin, meloxicam and tramadol. I have good days and bad. Every day I ache. Roof of mouth sore. Ulsers in mouth. This winter my feet are always cold and ive now got chilblains. My chest has started to hurt, feels tight at times.my arms are getting weak too, I cant carry things for long for example. Always tired and moody and lots of other bits too, too many to list. Thing is I asked work if I could drop a day to 4, my immediate boss said ok but top boss doesn't want it permanent. They believe the prob to be a colleague who causes lots of stress (this does not help) but I can't explain that I am poorly, like the above its long winded and people believe that because you look ok you are, esp as I have to have a smile on my face as I'm on reception. Ahhh so tired and frustrated, one guy said why dont I just take a couple of weeks off and get over it, as you all know its not that simple, wish it was, oh what to do. Sorry I sound a right moaner. Confused and depressed :-(

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Hi, I was told MCTD, for a while, I think sometimes it's the same as Drs saying you have a 'virus'. Which basically means they don't know yet. Hydroxy seems to be the baseline drug, you don't say how long you have been on it. Can be as long as 6mths to kick in. In my opinion you have given enough evidence, as I read that you had a positive Ana, and RA. Either way you clearly are still suffering and I would try harder to push your case. Especially as you have to work, and this is affecting your ability. The colleague that said take 2 weeks off, is not helping you as stress is not a good thing for any health condition. Sorry you feel so bad and I can't say anything to help, but sharing and unloading is something we can help with on this site. Take care

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Thank you for your reply, I do feel so alone at times and as you say sharing helps. Ive been on hydroxy now for a couple of years, my consultant said last time " the medication has controlled the lupus and I'm happy the lupus is now under control" I said wait a minute youve never diagnosed me fully with lupus are you saying thats what it is? He said ah well as its under control lets say fybromialgia type connective tissue dissorder with inflammatory arthritis.

So as you can tell I'm a tad confused. I seem to be getting more symptoms though and dont know if its my illness or the drugs im taking causing them? Constant tummy pain, right hand side, GP said irritable bowel. Headaches the list seems endless with no end in sight. Anyway thanks for taking the time to read. Xx hope you are feeling well xx

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