I was diagnosed 9 years ago now and since that date I have been told I have got Lupus SLE 100%, no question, the next visit......I am not sure if you have got SLE..just see how you get on till the next visit

I have had ups and down and more high ups and much lower downs than I would have liked, but today has taken me back to feeling like I want to close myself off from the world again. My pain is definately not sorted but am on such high dosage tramadol that I am blearry eyed and dozing off all day every day.

I have been on anti depressants for the past 3 years i think and even tho they have helped enormously in the past, rightnnow i dont feel as if I am even taking them


8 Replies

oldest • newest
  • I know how you feel. Some days I am on high doses of Morphine that all I want to do (and in fact do) is sleep.

    You will have to get a referral by your GP or if you are under a consultant locally they can do it. For me, I was under a local consultant and was getting nowhere, so asked for a second opinion and was referred to St. Thomas'.

    I know that it is not a nice place to be in until you are diagnosed properly and get the right treatment. Push your GP for an appointment, but once they have done it do not expect an early appointment at St. Thomas', as it can take up to 6 months to get an appointment.

    Good luck and I wish you well.

  • Hello. I have only just joined this site, so if I'm about to tell you something you already know, please excuse my ignorance.

    As I understand it, You can attend St Thomas's as a private patient, I know it's very expensive, but if you can somehow scrape up the money for the initial two visits (tests &results) if you are diagnosed by them with lupus,you can then be switched over to NHS clinic patient and future visits will be on the NHS.

    If you can find any way of doing this, at least you would have peace of mind.

    Good luck


  • Mandie, that doesn't sound good.

    I do hope that you are able to see someone who understands how you are feeling and has the expertise to clarify what is wrong. I am so sorry that you feel so low; that must be rotten. It is bad enough having pain but worse if you feel depressed. Low mood can also make. the illness worse.

    Just think that it will get sorted out in the end although it might take a while.

    good luck and a big hug from me.

  • Hi Mandie,

    I asked my gp to refer me to St Thomas's lupus unit as it is on choose and book. It was a bit long winded to be honest, my gp had to write to rheumatology at St Thomas's and then the consultants there decided which clinic you attend. Ask your gp to write clearly that you have lupus on the letter as mine did and you will be seen at the Louise Coote centre. Once I received my choose and book appointment letter I had to ring the unit for an appointment (you can't do it on line), they really don't make it easy. I had to be quite pro-active and chase my gp's secretary but I got there in the end. I had my first appointment in February after a 6 week wait and I am being seen again in April.. I feel very safe at the lupus unit, very knowledgable Docs and nurses. It isn't easy to get an appointment but so worth it when you do. I so hope that you can sort this out, very best of luck to you and big ((((hugs))).

  • mmmmmcake....thank you so much for your reply, good to her from you and the advice was definately helpful

  • Hi Mandie,

    I messaged you in another message, you HAVE to pester your gp, anyone you can!!!! I'm not sure if you can refer yourself to st thomas's, but this actually makes me angry hearing about this, tell your gp you have been on forums and websites and DEMAND you get reffered to st thomas's hosp!!!!

    Luckily my gp knew a little about lupus and i have had problem for 4 years, seriously.... don't back down... if your gp doesnt know... which he/she clearly doesnt, go above them. it's your health and alot of gp's dismiss it, a doctor once told me i had reptitive strain injury!!!! I wouldn't back down. I knew there was issues and demanded i go to st thomas's.

    Since then, i've never gone back to previous people, they know EVERYTHING!!!! don't hold back!!! demand to be referred, it's your health and you need to do something about it!!!! much love xxx

  • hey Loopy xx

    Thanks for your message and your support, once again. I did go back to the gp's today, after spending time over the weekend in and out of hospital. I went over the wknd cos i was feeling very sick, lightheaded, dizzy and so so so tired it was unreal.

    the on call gp at hospitals didnt look much at me but appartently could tell that i had labyrinthitis and prescribed me anti biotics

    i knew myself that i didnt have that so never bothered with the prescription.

    today I saw rhe new gp at my practice and explained what my symptoms were and the fact that i was feeling so low in my mood and then i started to cry, which pisses me off, He checked my history and noticed that 3 months ago after blood tests, it was flagged up IN BIG RED LETTERS, that my red blood cells were severely enlarged, however no one else apparently bothered to act on that information

    he said that he wanted me to have more specialist blood tests and that if he was right then i would need regular B12 injections and also blood transfusions


    i am so f.......angry right now. He also said he has no problem in referring me to St Thomas's and doesnt understand why it hasnt been done before.

    so altho maybe premature i do feel a little more hopeful that this new gp may actually be bothered enough in me to try to find out what is going on with my body


  • Hi Mandie,

    at last a gp that will listen!! Although you must feel like terrible try and stay pro-active and who knows we may well meet up in St Thomas' lupus unit. I can understand why you feel angry about the ignored blood results sounds like pernicious anaemia to me. I'm glad you are a little more positive your new gp sounds as if he's on the ball at last.

    Hope your having lots of lovely easter eggs, personally I prefer cake.


You may also like...