Do I have lupus?

Hi to all this is my post any feedback would be much appreciated. i am 27 year old staff nurse on a very busy surgical ward. For the past year I have had foot pain sore after long periods on my feet but worsening morning and evening. At times unable to walk in the morning properly for at least an hour. I began to intermittent pain and swelling in my left ankle and knee. (hot to touch), This has now progressed to swelling 4/7. I can never kneel on my left knee and stairs are particularly painful. I recently have had extreme fatigue, headaches, nausea. Swelling in my fingers in left hand when going from cold to warm environment. Last few days I have had swollen glands and a sore throat also a blotchy rash over my cheeks and nose. I have a speckled ANA and raised ESR. I have been referred to rheumatology however waiting lists are awful. I have seen ortho who state inflammatory arthritis ? autoimmune illness. I have been off work since the symptoms progressed and have been getting hassle to come back even though I have no diagnosis and feel things are worse now than ever. Sorry for the long winded chat but it feels good to let it all out! Thanks x

9 Replies

  • Sorry to hear all that you are going through I don't have lupus but my husband and two daughters have the youngest being diagnosed on Monday.They all took a long time getting diagnosed and each had different symptoms I hope you start to feel better soon and I wish you well in getting your answers.

  • Hang in there - achieving diagnosis can at least start you on medication and improve your quality of life. I won't speculate as to what your symptoms could be, I'm not a doctor - but keep an eye on them and do stay on top of your blood results and appointments to ensure you are seen speedily. If you feel unsupported by your GP or NHS, you might want to consider being referred privately, the turnaround time for tests etc is usually shorter.

    Meanwhile you might want to ask your GP if you could take anti-inflammatories, e.g. Ibuprofen. If it is an inflammatory disease, those drugs can take the edge off pain and discomfort, as those are usually caused by inflammation.

  • I agree with Purpletop. If your GP has referred you, you should have an appointment with the rheumatologist within 6 weeks, sooner if you're lucky. Your GP might even be able to speed things up in view of your blood test results. Good luck!

  • Thanks for you're replies xx

  • Hi there,

    so sorry to hear you're troubles. I too am a nurse and remember terrible foot pain after a shift when I worked on the wards. I thought everyone got it!

    I was diagnosed with SLE last week after hitting a wall. Wierd symptoms worsening for past 12 months resulting in absences from work and difficult questions to answer from my manager.

    after suggesting SLE to GP and positive blood test I was ref to a rheumatologist. Choose and book gave me little choice and an appt in 6 weeks. Someone suggested going private for the first appt then convert back to NHS care. I was seen 10 day's later by the consultant of my choice. The appt was unhurried and she was very thorough. She was sympathetic that I was self funding and has organised further test through GP to save me money. She has also posted me an FP10 of my first months supply of chloroquine to save me the cost of a private prescription. I felt so rotten I felt this was £150 well spent. Yesterday I posted my manager a med3 from GP stating SLE which is a weight off my mind. By paying I have sped up diagnosis and started treatment 6 weeks earlier, which to me is priceless.

    To convert a ref to private, telephone you're GP surgery and ask to speak to the secretary handling you're rheumatology ref. Then ask her to fax letter to further speed it up.

    I have worked in NHS for 25 yrs and had to pay for care, crap but true! I hate to say it but I do feel let down by the old girl.

    good luck and take care


  • If you don't mind me asking queenie how much was it for a private consultation

  • I dont mind at all Shadows-walker. The total was £220, just got the bill today. I'm a bit peeved that I have had to resort to paying but atleast I have some answers now.

    It sounds like you are having a difficult time. I hope this helps. If you live in or near to somerset I can recommend Dr Laversuch in Taunton.

    good luck


  • Thank you I was expecting another 0 on that ,that cost is archevable , and I live in mid Wales . You have given me some more hope on this front .thank you again xx

  • Hi. Like Queenie, I also paid to see a rheumatologist privately to get a diagnosis- although for me it was 21 years ago! And strangely, I too was a nurse. Speedy diagnosis and getting onto the right treatment quickly was worth every penny and helped me get my life back. I have worked full time ever since (with just a few minor flare- ups over the years) - so don't loose heart Shadiws-walker. Good luck in getting your diagnosis

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