Where to begin

hi, what to do or where to go, am sure I have lupus as have researched the condition and have many of the symptoms, the reason I looked into it was afew months ago I noticed my torso has loads of lumps under the skin some painful like a bruise painful, I researched it and it came up with lupus, I went to see my doctor didn't mention the word lupus to her, but was sent for blood tests shocked as I was for lupus among other things, the tests were clear, so nothing wrong with me, my aches and pains, swollen locked toes, painful joints, painful head, the list god on is all in my mind, I am 47 but some days feel 97, I have read that it can take years to get a diagnosis, do I continue or give up before I've begun, ???

5 Replies

  • Hi lorna118,

    I'm sorry to hear that you are having to cope with these symptoms without a diagnosis. Do you know which 'lupus' blood test(s) were done? Based on the symptoms you have mentioned, I would recommend asking your GP to refer you to a rheumatologist for further investigations. Make a list of your various symptoms to act as an aide memoire during your appointment.

    If you want more information about lupus and how it is diagnosed, you can request or download a free pack from our website at lupusuk.org.uk/request-info...

  • hi Paul, thankyou for your reply, am alittle worried being looked at as a hypochondriac as have many symptoms, have changed doctors so will be my first appointment with new doctor on 4th October, should I mention the word lupus, or wait to see what they say??

  • Hi lorna118, I'm not sure whether mentioning lupus would be a good idea or not (perhaps other members of the community can share their personal experience here?) - it would depend upon their personality probably. It may depend what combination of symptoms you experience, because the symptoms you have mentioned are not necessarily exclusive to lupus, so it could still possibly be something else. It is important to mention the variety of symptoms you have because otherwise, if the GP looks at symptoms in isolation, they will not get the full picture and it will make it more difficult for them to suspect an autoimmune or connective tissue condition such as lupus.

  • It very much depends on your doctor I think - I had similar sorts of aches and pains and for 5 years was told "your bloods are fine so it can't be anything". Eventually I had a big flare and spent several months on the internet looking - found the diagnosis that fitted me, polymyalgia rheumatica and you can have it without any raised bloods (about 1 in 5 do). I told the GP who couldn't think of anything and he referred me to a rheumatologist. Then comes the bad news - he didn't agree! Though he DID agree there was something going on and chose a drug. However, another GP recognised the symptoms as PMR and did the necessary in prescribing prednisolone for me.

    You have symptoms that are suggesting you have SOMETHING. You need a doctor who treats the patient and not the lab results! So initially I'd try without a mention of your suspicions but make sure you have a neat and tidy list of signs and symptoms - and if that includes fatigue as a major problem make sure you mention it and anything else. If you meet with a brick wall - often taking someone with you who knows your problems concentrates their minds. Especially, I hate to say it, if it is a male partner. It shouldn't be so but it is.

  • ok, many thanks, will talk to others and arm myself with information, advice, thanks again for your advice much appreciated.

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