Newly diagnosed with Lupus and learning to spot the signs of a flare up

I was recently diagnosed through a positive ana result and still waiting to see a rheumatologist. I have had symptoms that started with extreme chronic fatigue, which initially GP put down to PBC(liver) and/or hypothyroidism, which I have both but he hadn't linked all the little things that had been going on for over a year...pain in my feet, pain in right hip, the rash for being the sun, my hair falling out, migraines, flu like symptoms( temp and nasal/sore throat) and being tested for kidney stones due to the pain! It was only a locum that having a chat with me asked about my family medical history.... Mum has Addison's disease, vitiligo and fibro. Dad has MS (all auto immune) and the fact I also have auto immune diseases PBC, hypothyroidism, coeliac and vitiligo she decided to run tests to check my auto immune antibodies....and up popped LUPUS!

So it's still all very new to me, but I am now trying to get back to work, slowly! It's learning to spot the flare up signs for me, I had a good week then all of a sudden went so very tired, felt like I was getting a cold/flu, followed at bedtime by pain in my feet,legs and hips...managed to get to work the following morning but after 5 hours felt terrible and went home to bed! That was Thursday and feeling a little better today :) my GP wants to wait for the rheumatologist appt before starting medication. Is that normal because all I have for the pain at the moment is tramadol and that now has no effect? Something to do with bloodwork he said... Can anyone suggest anything?

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4 Replies

  • Hi

    I was diagnosed after a positive ANA screen and ongoing symptoms for over 2 years before i finally had enough bit the bullet and went to the docs. I was in the same situation as yourself with just Tramadol and Paracetamol until i saw the Rhuemy doc. Your own gp wont prescribe anything for the Lupus as the Rheumy takes control over your meds they decide what would be the best medication for your symptoms. Gps are very reluctant to prescribe any medication for lupus as the Rheumy is the specialist in this field - and to be totally honest gps dont really know an awful lot about lupus because they do general medicine. Your gp is there if you are ill, but anything usually related to your lupus its the rhuemy doc or specialist nurse that is the first point of call. You can contact your gp and ask where you where referred to and ring the hospital / PCT clinic to see if you have an apt arranged. I know it is awful waiting but the rheumy will sort u out - its all a waiting game love and that is the hardest bit. As for flares alot of what causes mine are - the sun, STRESS - major factor, tiredness - have to try and do things a bit at a time. Numerous things cause them but the worst thing is the damn fatigue. You have to learn to listen to your body most important thing i have learnt. I am still learning as i was only diagnosed in April. Look on lupus websites such as lupus uk and you can send off to arthritis reasearch for books on lupus and related conditions too for free - donations are accepted. They have helped me loads. Educate yourself the best you can to understand your condition. iIt helps if you have family and friends that are supportive to. Just remember you are not alone we are all in the same position and you are in the right place for advice and support. I hope i have helped even a little. Stay positive and let me know how you go. Take care and best wishes. E xx

  • I have been told that I am Canca positive yet I was discharged from rheumi as he could not link it with anything so as yet still no diagnosis except OA of lumbar spine

  • Hi I find warning signs of a flare up include...increased fatigue, joint pain, depression (when I am certainly not depressed followed by muscle aches and specific areas chest, then may may move to hip, another time shoulder, then it may ease up. Then out of the blue like Esky said above it can start all over again. Although only diagnosed in January it has been about two years leading up to diagnosis so learning to recognise a flare up now and as soon as stronger fatigue sets in I pencil a day of just pottering around the house or doing nothing as this can often bring it to a halt earlier (as well as the immunesuppressants). Not always though but I find it is best not to try and plod through a flare if possible as it often makes it worse. I would rather have a few days of taking it easy then a month of a horrible flare up. Also if possible always think preventative measures.....sit down when you can (on trains etc), don't over do it, pace yourself and fit restful period into your day....I find this often helps to calm the mind and seems to help. Good luck with your rheumy appt. xx

  • So glad my senior manager recommended this site to me. You have all been a great help and its great to know that's its just not me(was seriously thinking I was losing the plot) . I am on a phased return to work 2 days a week and I have to say she has also been a god send too, she has RA and knew exactly what I meant when I said about the extreme tiredness to the point I could cry even after a few hours sleep, or the pain I have.

    I do have a Very stressful job , although that didn't seem to effect me until i became ill in May/June. Although thinking about it my feet (thought i had heel spurs at the time) started last year when I had my gallbladder removed and little things have been getting worse until I was diagnosed with my liver problem(auto-immune) and then LUPUS.... I have learnt about pacing myself, the Internet is a wonderful thing ...but to me even hanging washing out or making the evening meal can be a difficult chore. Thank you all very muchly xx

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