I have finally been diagnosed with LUPUS after years of suffering joint pain/fatigue......first incidences around 1999/2000, then from 2008 I was told I had Fibromyalgia, at this point I was getting 'flares' if I had any other infection/virus. By 2010 it was really affecting my work-had, had quite a bit of time sick and I asked my G.P to refer me to Guy's in the hope that I could learn how to live with 'Fibro' and learn the triggers...first appt Guys was Oct 2010, and he did tests...said I had Carpul Tunnel in both hands (now been operated on for this-last one being in Sept 2012) Jan 2011 was put on 1st stage absence procedure at work-at my last appt at Guy's I was given a depression test-then discharged and told to come back to the 'Fibro clinic' if I needed it (Dr. Garrod)!!!!At this point Dr.Garrod even wrote to my GPs saying that I was getting worse-but STILL discharged me!!! I have been taking 'ametriplene and duloxotene' since both prescribed by Dr.Garrod.....Pain and fatigue were getting worse, so went back to G.P's and saw a new doc there and asked to be refered to a 'pain management prog' he was very good, he listened to me, and refered me to North Middx, waited ages for appt, when it came (August 2012) I was in with the Rheumy for about 5mins-very quick examination, prescribed me Gabapentin 300 ml daily, and said I would get an appt in 6mths time for a lesson in how to use a Tens machine(which I would have to purchase myself) continued to deteriate...work were pretty (only because I know my rights and am Shop Steward!) they halved my hours to 24 per week 2 x 12hour shifts one week days one week nights (April 2012), but still found this hard, and was put on stage 2 . Had my last op(Carpul Tunnel) Sept 12, walked in like an old lady, was out for 1 hour (general anaesthetic) and a bit later as was having lunch with my boyfriend I suddenly realised that I could move, with NO PAIN!! Went home and put music on and danced round the kitchen....this lasted for about 3 days, then of course wore off and pain was back!!! I told the new G.P about this, and at least he did listen....carried on getting worse... went back to work after 7 weeks off for op, explained that my hand had healed but my 'Fibro' was very up and down, they reduced my hours to 12-2daysx 6 hours (and my money-now on a qtr of my original wage!!!) then started getting really bad ulcers in my mouth that would not heal, being physically sick about 4 times a day-went back to see good G.P, I told him I had done some research and wonder if it was Soergrens Syn. he said he was going to take more blood tests, and told me to go and see my other G.P(who has known me for about 30 yrs) at the surgery in two weeks-this time my boyfriend came with me(uclers were still very bad)....he didnt mention blood tests...when I said about the Soergrens he just said 'it is still not curable' and gave me a hand out, as he passed it to me he said to my bf 'cause Julie likes to read things' (I was feeling really patronised) my reply to this was ' I know it's not curable, but I just want the right medication, I am being sick constantly!' at this he told me to 'brush/scrap my tongue,(I could hardly eat!!!) and upped the Gabapentin to 900ml daily!!! I came away feeling really depressed-started wondering if I was imagining all of the pain - I had told this doc previously that Ibruprofen was the only pain killer that helped me (it is not meant to work on Fibro), he still said Tramadol was the one that they prescribed for Fibro (did not touch my pain!!!) and the next step would be morphine!! By this time I was crawling up the stairs after my 6 hrs at work and on days off just lying on the sofa-even my earlobes hurt???? In the mornings was taking me about an 1 and half hour to get going (after Ibru had kicked in) but was still in pain....THEN the new G.P called me back....he had my blood tests back, and they were raised!!! He dictated a letter to the Rhuemy at Chase Farm - Dr.Persey and prescribed my Betnasol (steroid) ...magic, overnight I was better! (if a wee bit hyper!!) could manage work with ease, started spring clean the house-could not sleep-had so much to catch up on!! Finally got to see Dr.Persey-Feb 4th, he was not happy that G.P had put on the Betnasol (I was!!) and changed it to Predisonole reducing from 7.5 to 5 over 2 weeks-went back on the 18th Feb- and he is quite sure that it is SLE- said everything is pointing towards it. Am defineatly not so great on the Predisonole-pains and fatigue back a bit.The Betnasol was like a magic Elixir!! But at least had a really good Xmas and New Year on it!! Am going to start Methotexate today along with the Predisonole.
I know this has been a really long and boring BLOG, but feel so much better for getting all off my chest-don't know what the outcome with the meds and work will be-just glad that I finally may get somewhere on the right meds. I have now asked for Dr.Sadhu to be my main Doc at my surgery-I feel he is the only G.P that listened to me (even if the rheumy was not pleased that he put me on the Betnasol-he did it for the right reasons-ulcers cleared up within a week) As for the Dr.******** my G.P of over 30 years.....if HE ever has ulcers on his tongue-then SCRAP them and see how it feels!!!!