Hi im Nicky and new here found this site a few days again and would like to share my story its gonna be a long one so sorry in advance.
I have been in pain for 12 years now.. started in left arm and has spread to right leg. Over the last 2 years it has now moved on to other parts as well.
Strart as swelling and very bad pain went to AE was told nothing wrong with it!! get some rest then it went to my right leg same thing so off to AE and was told nothing wrong get some rest again
After many months trips to the doctors and AE I was sent to consultant orth in 2009 and was given an MRI scan on my left arm but nothing showed up again so I was sent to phyo by this point in time I had been going back and forward since 2002 trying to get someone to do something for me so my arm was now stuck in half bend and half straight it will not fully flex or I can not touch my sholder or my head again phyo was no good to much pain as they pocked and pulled trying to make it move again I was them told its all in my head and there was nothing really wrong with it.
Went back again to Rheumatology who by now was very puzzeled to why I was in so much pain so we decided to do bone marrow scans which is where the inject radiation into your blood stream let it flow around for 3 hours then do xrays where you hold you arm in one place for 1 hour I had 5 diffrent ones done in one day was called back a coulpe or weeks later and was told that i need xrays on my new just normaly ones to start as they has found some abnormal tissue growning in my arm and wanted to see if my leg was the same finally I was thinking to my self.
things by now where getting worse and worse pain killing aroud the clock could move my arm for love no money my family was suffering as I have young children and relied and them to do most of the things I couldnt as many other parts of my body where no under attack. I was told they now need to operate on my arm and remove the lining for biopsy which they did in March 2011 and lost the results so but back in the same arm in April 2012 and again have lost the results I have refussed anymore operations on my arm I cant go through all that pain and stress any more for nothing
still waiting for them to come up with some form of reason for the pain and swelling in my body and nothing.
middle of last year(2012)I had been suffer for a few months with tummy ache went to the gp who did blood test and examation and I was told I have IBS and at which point in my blood they have found immflamation markers OMG I have only waited 10 years for this am I really going to get some answers now I wonder to my self (and of course hoping)
Back again to Rheumatology and I ask if we are any closer to knowing what is taking over my body and Im told that for the last 12 years I have either been living with rheumatoid arthritis or/and Behcets cant be sure which. I have been again this week and have been told that I will be treated for the both at two diffrent times and see which medication I respond to. i have been given Hydroxychloroquine for 6 months then i will go back again.
I have read lots now about bechets but am not sure my self if that is the problem Ive had ullsers since I was 10 up to 30 at one time and now they even go all down my throat
when ever I an injection of any kind I have a reaction which leaves me with no use in both my arms for a day or two depending on what i have done
I am 33 this year still have no idea what is taking over my body I take 23 tablets a day have to live each day as it come because I never know which part of my body is going to hurt from one day to the next some days I have a really good day but other I cant ever bare to think that I am alive I asked my self every day why me! I am so glad I have found this site and have been reading that I'm not the only one who is suffering in silence.
Thanks for taking teh time to read my babbling