Worried I have Lupus

I have been diagnosed with Fibromyalgia and ME but I am worried that I actually have lupus. I think its maybe because of my mum that I am scared, I dont know. My mum was diagnosed with Lupus and then the diagnosis was changed to Churg Strauss Syndrome.

I have had a blood test for Lupus ordered by my GP which came back clear. However each blood test I have my inflammation markers are slightly raised which my GP says is nothing to worry over. I am in so much pain each day, especially in my chest and back. I am also extremely fatigued all the time. I have noticed that I am losing hair from my scalp but not sure if this is in anyway related. I am facing having to give up work, something I desperately dont want to do but I am not coping even with part time hours.

How were you diagnosed with Lupus and what symptoms did/do you have please?

Thanks very much for taking the time to read this :)

8 Replies

  • Hi Claire,

    Have you mentioned the pain and hair loss to your GP? Hair loss is a common symptom of lupus and so could be associated to the other symptoms you are experiencing. Are you on any treatment at the moment?

    If you'd like, I can send you one of our free information packs which includes a booklet about how lupus is diagnosed? Just send me a private message or email paul@lupusuk.org.uk with your name and address.

  • Hi Paul

    Thank you so much for responding to me :)

    I am seeing a Rheumatology specialist the week after next, my first appointment with a specialist. Yes, my GP knows about the hair loss. At the moment I am on pain killers (25mg BuTrans patches and 20mg Amytryptaline). The pain is better but by no means gone and I still feel very unwell.

    I would very much appreciate a pack and will email you. Thank you very much :)

  • I've sent you out a pack and responded to your email :)

    I'm pleased that you are seeing a Rheumatologist, please let us know how you get on. I hope that they will be able to advise a treatment regimen for you to start on so that you can begin to feel better than you are now.

  • Hi Serena, it's probably easier if you download a digital version of it from our website here - lupusuk.org.uk/want-to-know...

    It is important to discuss any issues you are having with your doctor; you have to work as a team to get the best results for your health. A good way to raise the issue is to menton any symptoms you may have which you feel aren't explained for by your fibromyalgia or aren't currently being treated.

  • I forgot to say I was prescribed Steroids for a week two months ago and I felt like a different person - almost pain free. I was not allowed to stay on them due to the long term side effects. I have since been advised that steroids dont work for Fibromyalgia but they do for Lupus. Does anyone know if this is true please?

  • Hi Claire,

    Yes! Steroids work for all manner of auto immune diseases but not for fibromyalgia also you don't get raised inflamatory markers with fibro.

    I would write out a symptom and treatment timeline to take to the Rheumatologist next week and a list of questions to ask. Good luck and don't be fobbed off!

    Best wishes

  • Yes, steroids work by reducing inflammation and autoimmune diseases such as lupus, manifest themselves primarily through inflammation. Fibromyalgia is not an inflammatory disease, so steroids make no difference to the pain caused by it.

    If you improved while on steroids, then it is more likely that you have an autoimmune disease. One can have both fibro and lupus, for example but if all your pain went away with steroids, I think your consultant should re-think your fibro diagnosis.

  • Thank you both very much :)

    I will write down my symptoms and take with me - a great idea thank you! I get so anxious about doctors appointments that I forget what I need to say. So thank you!

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