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been waiting a long 7 years for a diagnosis!

Hi I am 46 years old and have recently demanded a diagnosis as for the past 7 years I have not been told properly what condition I am suffering with. First they said it could be sjogrens syndrome, then it was sero-negative rheumatoid arthritis, inflammatory arthritis, fibromyalgia and now I am being tested for lupus.

I hope I soon get a correct diagnosis as it is driving me mad not knowing what is wrong with me.

11 Replies

Darcydaisy - I do sympathise with your plight, but try not to be too angry with your doctors. All these autoimmune conditions are related, and lupus is notoriously hard to diagnose, as not only do the symptoms mimic many other conditions, but things like Sjogrens and Fibro can run alongside (even be a part of) lupus.

I was diagnosed with RA first, then "inflammatory arthritis" (when no rheumatoid factor appeared in blood tests), then UCTD, then MCTD, and finally lupus. I never looked for this diagnosis and heartily wish I had never heard of lupus - so I am not going to wish you luck with your diagnosis.

I do hope your condition improves though - once you have a better idea what is going on, perhaps you will get a better targeted treatment.

Take care,



Hi, sorry it has taken so long to get some end result, I also had to wait 6 long years before being diagnosed and it s not funny, with people often not believing you. I was actually told it was all in my mind. I was 34 when finally got an answer and I am now 55. I have SLE, fibro and SS. So he's like the above answer it could be you have all three. Mentally to know will help you deal. An answer is always good what ever the problem. I wish you luck and good health. X


hi, sorry it has taken so long to get a result it took 20 yrs to finaly find out whot was wrong no it is not funny as you tend to think its in your mind but as you no it isn't...i was told i have had lupus sle and apl all my life was boggled but finaly thought i as normal as you can be with this horrid illness i do wish you all the best and hope finaly you get the answeres you are looking for as we all no it is very hard to get a propper answere from any body

i wish you luck and good health


Yes, took me 25 years, but even with a diagnosis there are no miracle cures. Just have to learn what helps you best and do it. It is a pity that often relatives, Benefits Agency etc. are fixated with having a name for your illness. Good Luck.


I have been waiting 12 years, have just been reffered to st thomas' last not getting told its all in my head, I have a very long diary for them x


I feel that when they chop and change the "diagnosis" - that somehow they don't actually believe I have anything... I'm slightly BoNkErS and it's in my head!!

It's probably how I feel more than what they're saying - but it makes me feel as if it's all in my imagination and how I say I'm feeling is not really valid or worth their time.

Trust your instincts and what you know to be true.

Best of luck



Hi there!firstly ........sorry for your suffering,it took 17yrs for a diagnoses for me,a living nightmare to be honest ,they even got me doubting my own sanity,however i knew there was something wrong ,kept a very good symptom diary and what triggers etc,was told of sjogrens ,fibro,mctd!then at last ........lupus.treatment the same for all,its just a case of managing it,easier said than done,good luck with appointments ,keep well brave;))


Hello . It took me 15 years to have lupus diagnosed i too was first thought to be suffering from sjogens before a through rheumy nailed my symptoms to lupus. I too had the brush off from some doctors saying it was in my mind and i was suffering from a mental illness!!!!

so stick with it. as has been said sometimes knowing is half the battle. but as we all know this illness can only be managed and not cured (Yet)


I was diagnosed after 2 years with lupus and I had to fight hard for being taken seriously. Although I agree that there is similar treatment for each of these diseases, it makes me feel better knowing the specifics, I want to know why something hurts, what triggers it. Maybe because I am still at the beginning of it all, I wd probably become more relaxed once I've been through it all for longer. Sometimes when it dawns on me that my health is gone for good I just don't want to know anything about it whatsoever but hope has a way of coming back so next day I'm back on this forum again reading all you guys are experiencing so I can learn more. Diagnosis is important to be able to move forward and cope with it. But ultimately, as long as you start treatment and feel better, that's all you'll need in the end. But if you don't get the treatment because doctors can't agree a diagnosis, then they need reminding that your well being is the target here, not the label on the disease.


I have been waiting 14 years to be diagnosed lol. And it turned out not to be Lupus after all but another connective tissue disorder! Ehlers Danlos Syndrome (with dysautonomia, pots, raynaud's, erythromelalgia, alopecia, endometriosis, and now apparently fibromyalgia.. I think I forgot some on there too!)

It takes a long time, I've been told I've had 'somatoform' disorders of the mind many, many times. And then all of a sudden in the last month I've just had this massive tsunami of diagnoses. It's been the weirdest time.

Be kind to yourself and keep fighting!!!


Hello darcydaisy,

All GPs, patients, relatives and carers should read “LUPUS- a guide for patients” and “LUPUS- diagnosis and treatment” by Professor Graham Hughes both published by Lupus UK.

Another useful book called simply LUPUS is by Manzi and Isenberg also published by Lupus UK. I’ve got them all.

Some are in the process of being updated?



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