Do I or don't I, what do you think ?

Bit long winded but please bear with me. I fear I have lupus but any mention to docs is met with a raised eyebrow etc... ok,here goes. I get an unmistakable butterfly rash, joint pain usually feet ankles shin area and fingers, sometimes shoulders elbows. Fatigue and tiredness I feel mostly like I've not slept and wake up more tired than when I went to bed. I appear to be sensitive to sunlight, it makes me feel not right ? I feel much better in the shade. I have been on medication for depression. I have bowel pains and never toilet normal, I seem to suffer short term memory loss and can't remember what I'm doing / where I'm going, I have coeliac disease (auto immune) I've been on prednisolone and cyclosporin for six years with auto immune eye problems, my hair hurts ? Particularly facial hair, I feel pain in each individual hair folical ?? I seem to cycle up and down with these symptoms over say a three month period ish. I'm kind of lost.... the only thing I keep arriving at is Lupus, the eye doc did give me a blood test once to shut me up but I read somewhere that you shouldn't be on meds when being tested however I'm on immunosuppressive drugs.... ? Have I got Lupus ? Thanks for any help / input and taking the time to read my rambling. X oh and I forgot, the doc I see about coeliac tells me I have a enlarged liver ???

Last edited by

8 Replies

  • There are 12 internationally accepted lupus indicators and generally to be diagnosed with lupus you need 4 or more including a positive ana blood test and more importantly in lupus a double Strand dna test. The sore skin you mention is a very common feature of fibromyalgia which many patients have alongside lupus. As are the sore joints and fatigue. The photosensitive reaction to sunlight could be caused by your immune suppresent medication. That said most people with auto immune diseases seem to collect more than one so there is a small possibility it could be lupus. Push for a referral to a rheumatologist to have your mind put at rest. To be honest if it was lupus you arlready being treated with similar drugs. Plaquinil, the lupus staple, would be the only thing missing. Helps reduce length and severity of flares. It sounds like a referall would not be a vad idea. Maje a list of your symptoms snd print off the 12 lupus criteria from the lupus uk website. Take them to gp. Good luck x

  • Morning, getting a diagnosis is so frustrating sometimes. I sympathise with you. In the end I insisted that I was sent for blood test for lupus. Apparently lupus is notoriously difficult to get diagnosed. Once I had a positive blood test my GP then referred me to rheumy. Good luck.

  • Hello. For years I was saying to my GP 'Do you think I've got Lupus' to which she usually said, 'Oh, you wouldn't want Lupus'. In the end I bought a digital camera and took photos whilst I had the red butterfly rash and I took them down and showed her. She suddenly decided to refer me to a rheumatologist and guess what - I've got Lupus. We do know our own bodies and all I can say to you is that you should really push to see a rheumatologist. It took me years of struggling. Don't be like me, just be pushy and insist. Good luck.

  • im the same since 2011 i have been saying to my dr is it something more than fibro because symtpoms much worse and new symptoms-i have the distinctive butterfly rash,nasal sores,and swelling and bruising on face-=rheumatologist dismissed anyhtign i told him and was continuously going on about losing weight -they don't get that that is not the problem.have asked dr fro referral to ent and rheumy again .

  • Hi there. I must admit that I have never been too hung up on getting an exact diagnosis from my rheumy. She veers between Lupus, UCTD (undifferentiated connective tissue disorder) and psoriatic arthritis depending on whether there is an R in the month. As the treatments for all of these auto-immune conditions are pretty similar I can live with a 'ball-park' diagnosis. The important thing to me is whether I am being taken seriously by my doc and that they are trying to do something to help me.

  • Hi all thanks for replies, it's not that I'm clawing for a diagnosis, I just feel a bit to be a main reason for my immune ailments. It's quite depressing being in kind of a no man's land where I have immune problems which seem to be viewed as separate entities by the medical profession, surely they are all inter connected ? Docs seem to only see one thing at a time, perhaps they are separate issues. But when I've mentioned other issues it's almost like they think I'm fishing for an illness. I don't know, grin and bear it I suppose :)

  • You should definitely not just grin and bear it - I think it is important to get some kind of diagnosis and at the very least some acknowledgement that something is not right. Most people with SLE have been diagnosed with several different things independently based on the various symptoms before it was all pieced together.

    It is such as specialist area and even consultants don't always say the same and agree so the probability of getting a GP to diagnose SLE is small. However you are best having a good relationship with your GP and them on your side - often they do not take well to patients diagnosing themselves (especially via the Internet) as they are professionals with years of training and know best - of course they do. BUT GP's are generalists and will have spend very little time in their training on SLE and other connected illnesses and they also don't see very many cases if at all.

    So my advice would be:

    - to be well prepared for your next appointment (even book a double appointment so you have enough time)

    - List all your symptoms down and give a copy to the Dr.

    - Explain your symptoms calmly and how it affects you and your life

    - Suggest that in isolation these symptoms don't mean very much but when they are all put together they suggest that something else more complicated might be going on?

    - Say that it could perhaps be something autoimmune and so you WANT to be referred to Rheumatology at the nearest hospital (or one of your own choice - I even specified a consultant that I knew had a special background in SLE at Addenbrookes).

    - Don't take no for an answer and if you don't get anywhere with that clear concise and open approach then go and see another Dr and try again as any Dr worth their salt will refer you

    - if you still feel you are not being listened to or taken seriously then consider taking someone else with you (i.e Hubby, mother, friend etc..) as 2 v's 1 puts you in ascendency

    Remember no Dr can tell you how you feel and how badly it affects you - only you know that so just stick to your guns, be brave and be prepared for a long route to diagnosis but each step will get you closer.

  • Agree 100% with Donny... DON'T take it lying down... undiagnosed Lupus is far more dangerous than diagnosed Lupus... Be strong and fight your corner, it's in your health's best interest. Best of luck..

You may also like...