Suspected SLE

Not sure if this is the best place to post........

I've been ill for just over 2 1/2 years now. In that time I've had my appendix, gallbladder, and left ovary removed. I've also had exploratory surgery, ovarian cysts drained, and viral meningitis. On top of all that I have extreme fatigue, joint pain, swelling, and stiffness (mainly hands, knees, ankles, and feet.) I get extreme nausea/ sickness, crippling lower abdo pain, pluretic pain on right side, brain fog,chilblains, mouth and nose sores, numbness, tingling, and pins and needles in hands and feet. My toes and fingers turn blue and are always freezing cold- I also have large, painful bunions on both feet which are made worse when wearing socks (thus making cold feet even colder). Recently I have also had sortness of breath and chest pain when lying down.

So far I have been diagnosed with: Chronic pelvic inflammatory disease (swabs, blood, and fluid samples all come back negative for sort of infection), pelvic congestion (large bulging veins seen in pelvic areas during operation), Raynauds, inflammatory arthritis, carpel tunnel syndrome......

After being fobbed of by numerous doctors, turned away from A&E, and made to feel like a fraud, I have finally been referred to Rhuematology for suspected SLE.

I am seeing Prof Bruce at Manchester Royal (he is really nice, as are all the staff. Finally feel like someone is listening to me and will hopefully be able to get to the bottom of it all). He has ordered numerous blood tests, chest x-ray, breathing test, Echo test, and nerve test- results are due in a couple of weeks. In the mean time he has put me on 10mg steroids (instead of naproxen), given me wrist splints, and i'm still on 10mg bu trans pain patch, along with tramadol, and cyclizine.

Has anyone had any similar experiences???

5 Replies

  • Oh dear,you have been through so much,I do hope going to rheumatology and having all the tests will finally confirm a correct diagnosis for you,I send you my very best wishes and lots of soft gentle hugs ,BettyAlice xxx

  • Many of your symptoms I have had for years. Fatigue, joint and muscle pain, chest pain and chronic bronchitis, asthma, mouth and nose sores, hair loss with itching scalp, painful eyes, inflammatory bowel disease. Basically inflammatory everything. Are the steroids helping? I get a lot of relief from steroids and luckily one of those that has few side effects. It is great they are being so thorough with testing and hopefully you will get your answer.

    Take care and let us know how your test results come out.

  • I've not really noticed a diiference but I've only been on the steroids a couple of days and I dont think 10mg Is that much (?)

    I will post an update once results are in

  • Professor Bruce is a highly respected consultant rheumatologist with expertise in lupus.

    It might be helpful if you wrote down ALL your illnesses since childhood, no matter how irrelevant they may seem.

    Write down all your symptoms (including any changes in mood symptoms) with dates.

    Take with you copies of all blood tests, scans, xrays etc

    Taking a clinical history takes time and it is so easy to forget something when we walk out!

    10mgs a day is low dose. Our bodies naturally make 7.5mgs a day. You may not notice any difference until the corticosteroids kick in. Better to start low else you might be given too great a dose. If necessary, the corticosteroids can be increased.

    Diagnosis can take time so be prepared for a wait. Better to be cautious than be given a wrong diagnosis. Diagnosis of lupus is difficult as there is no single blood test and thus the doctor has to watch and wait and see what symptoms are developing.

    I wish you well for your appointment and hope you will update us here.

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!


  • Thanks- I will post an update after next appointment

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