I am SO pleased to have found this site!!!! This is really long....and even if no-one reads it-I will just feel better for writing it down!

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!!!!

13 Replies

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  • Goodness me, what a nightmare you've had!! The arrogance of these doctors is unbelievable! At least you now have a diagnosis and a treatment plan and have started to improve, that must be such a relief! Welcome to this site, it is a real fountain of useful information and the contributors are very supportive, you will see. Well done for persevering!!

  • Thank you for your reply, think I am loving this site already! it is good to feel that you are not alone and someone else has been through the same! I have taken my first lot of methotexate tonight, not really knowing how I am going to react to it but just hope it helps with the pain/fatigue!

  • Hi and welcome as a new member to the lupus family, we have to stick together, as we're the only ones that seem to know we're not going mad, lol. You're definitely not alone in your long ordeal for diagnosis, ignorant and arrogant doctors. You're doing the right thing by changing gp. Doctors aren't gods, they don't know everything. My lupus specialist at St Thomas' actually admits that they just don't know enough about lupus, and what works for one patient won't necessarily work for another. It's all trial and error, if the treatment helps then great but if it doesn't then discuss alternate treatment or coming off you current one. Always discuss with a doctor but you don't need their permission to come off a drug. It sounds like you read up like me, I'm a Julie too, keep doing this, make notes and ask questions, show your gp the literature - get a book for him for free from lupus UK, I got 1 for both my gp and rheumy. Both of them are fab' as they listen and support me in what I feel I need. All the best hun, don't let lupus or the docs beat you. Xx

  • Yes it was a long Blog,but most of us how have Lupus can do the same,so you are in safe hands and it helps sometimes to know you are not on your own in the quest to find out

    what is wrong.

    Love & Sunshine

    jan

  • Sometimes it helps to write it all down! Then you yourself realise just how long you have been trying to work out what was wrong and how much you have put up with. A lot of us are on steroids and have been for ages so want to reduce or stop them, but at times they do seem to be the magic bullet.

    nfortunately treatment is very much a case of trial and (frequently) error. Something seems to work and then just stops. Hope you do have a good GP and consultant as doing it all on your own is hard work.

    Lupus UK has some very good material, and it is helpful to have for family and friends, as it isn't something that non-lupies really understand.

    Best wishes

    Margaret

  • Hi bam1993 & welcome

    It's good to read your story, especially because you are finally getting some help. My diagnosis took 9 years & I was misdiagnosed with ME along the way. So I understand your frustration.

    I'm sure you will find this site as helpful as I have. You can read other peoples experiences & ask questions when ever you need to. I'm also now a member of my local Lupus UK support group, who meet regularly in the town where I live. I have been made very welcome there, & have made some wonderful new friends.

    I hope you find the right medication to suit you very soon. Best wishes. X

  • I am very sorry to hear you have had to go through this ordeal, be assured that the problem is not with you but with those doctors who are so incompetent at their jobs. dont get me wrong I know there are some excellent doctors and rhumys out there, my rhumy is very good, but not perfect and he is not afraid to admit he does not know everything there is to know about this disease, no one does. Do not let anyone intimidate you about your research of this disease and your symptoms. I know I gained a lot more confidence and felt more in control when I started doing my own research into lupus, at a time when I was scared and felt like my body didnt belong to me because I felt so bad all of the time. Lupus is different for each individual and we all have to work out with our doctor's help through trial and error, what is the best course of treatment for us. If your doctor or rhumy is crap change them it is your right. All the best and welcome to the site.

  • Hi there, welcome to the site. Hope things work out for you with methotrexate. I've been on it for 5 weeks now and sofar the best move I made - didn;t realise how much I wasn;t coping with the pain until I went on it. xx

  • I'd like to add my welcome to the others...... Rant away! We all understand the frustration involved in managing the minefield which is our National Health Service......

    I used to be quite a shy person, but having SLE has made me become assertive in the quest to have some semblance of a bearable life.

    A well tried and tested approach with the medics is to write down your questions before going for a consultation - their time is limited, so it helps them to know how to pitch their own questions and treatment plan. They are human, and are constantly learning - it is better if we are direct, but not too confrontational. As the others have said - finding out what works takes time and patience......I'm sure you will get some relief eventually.

  • took me 20 yrs to be diagnosed just kept putting it down to marriage breakup and nerves sorry it took so long to get an answer

  • Just to say a BIG thank you to everyone that has left a comment- I know the blog was really LONG, but felt so much better after writing it all down!!! Also all of your comments made me feel so welcome and it is so lovely when you get the recognition and someone says 'Yeah, me too!!' it makes you realise you are not the only one and are not alone! xxx:-)

  • Hi Bam, welcome to the site! Personally I find writing things down really therapeutic so I can understand how you feel :)

    I'm sorry that you have had such a difficult time, but unfortunately it seems to be the case that many doctors just do not understand Lupus, I'm considering changing mine at the moment because of a number of recent 'amendments' to my medication that were not discussed with me first! I too am on Pred, and the likelihood of me coming off it is slim at best. Managed to get down to a maintenance dose of 4mg per day, but anything less than that and my body goes haywire.

    Am so thankful that you found us here, for my part it has been a real blessing as previously I felt so alone, hope to read more of your posts in the future :) xx

  • Welcome!

    This is the best place to just write it down and release it out there to people who understand and empathize with you.

    Look forward to hearing more from you in the future!x

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