Haven't been diagnosed yet and need advice

My GP is referring me to a rhuematologist mid may appointment. 5 years ago I had pluerisy, went back to doctor 6 month later to be told it would take at least 18 months to recover. So suffered the aching legs, pains in my chest, feeling exhausted and went back after 18 months. Tests done showed I had chronic kidney disease, poor liver function which they tried to get under control. Lots more tests done for CKD but no reason found! Since then I feel I have been on a downward spiral, even though my previous doctor said the test came back negative fir lupus over 3 years ago, I've never thought about lupus until I had to give up work ( due to previous doctors advice) . We moved area and I now have a new doctor, he found that I was deficient in vitamin d, he put me on medication but my joint pain hasn't improved. Also, need to say I've been on antidepressants for the last year, my memory is terrible, feel as if I'm going crazy. It wasn't until I met the nurse at the new doctors that she mentioned lupus again. All the pieces of the jigsaw seem to fall into place. I'd like to know is this usual for it to take so long to get diagnosed, cos if I haven't got lupus what else could it be? One more thing, I don't like bothering the GP but last year I had a short episode of nausea and sickness and I was put on tablets. Last night I was in so much pain in my stomach which went through to my back, I did have a little wind but was then very sick and I felt as if I'd been punched in the stomach. I'd not eaten anything different to my husband, is it important to tell my GP about this or not. I feel so alone with this. Sorry it's so long.

6 Replies

  • Hi, sorry to hear you are having a bad time. I can relate to you totally. For the last 2 years I have been suffering the same symptoms as you and my GP said I had depression and anxiety. I have become agorapheobic and never leave the house on my own. I started getting a rash on top of everything else and I asked my GP if it was possible I could have Lupus, well he sniggered and said I had eczema and arthritis. A month ago I had a stroke and during my stay in hospital I had many tests, blood, MRI, CT scan and I was diagnosed with Lupus and lesions on my brain which meant I wasn't getting enough oxygen to the brain. As you can imagine I was gobsmacked. My GP made me feel like a fake and that I was some neurotic person and I was imagining all my symptoms. Consequently I have had appointments for neurologist, dermatologist but am still waiting for rheumotology. Like you I feel like I am in limbo. I have been back to my GP to get meds and he was very shame faced when I showed him the letter from the hospital. You must go back to your GP and tell him about your stomach, don't suffer in silence. Good luck x

  • Hi - I'm really sad to hear you are suffering so badly.

    It can be very difficult to get a diagnosis of Lupus because the disease takes so many different forms and pathways. The symptoms you describe may or may not be lupus related - it is impossible for a layperson to say, when even the doctors often struggle to identify lupus.

    Jackjack is right - you need to persevere as long as you are so unwell. Whatever it turns out to be, you need treatment and support. Good luck with it all.

  • Hi I am sorry to hear you are having such a hard time-your story sounds so much like mine- I had pneumonia/pluerisy in 2005, and was hospitalized for 8 days, they could not find out what had caused it,but antibiotics had not effect and just had to wait for it to pass on its own. But afterwards I was exactly the same as you, and went back to G.P and was told it takes time to recover from a 'bad case of flu' (but inside I KNEW that more was wrong- had flu once or twice before but had NEVER felt like that afterwards-the pains were so deep inside me,right inside the hip bone/toe bone etc.,) I then went on to suffer every time I had any sort of infection/virus-and was told it was Fibromyalgia-, was refered (at my insisstance) to Guys but still after about 5/6 visits was told it was Fibro- I just kept getting worse until eventually my symptoms were constant-could hardly get off the settee-pain everywhere (even my earlobes!!)-mouth ulcers,being sick up to 5 times a day-a different G.P at my surgery took new bloods-then called me back and eventually-AT LAST- I was sent to another Rhuemy who told me he was 99.9% sure that it was SLE,. Recently I had to see my Co. Dr. and asked him why Guys had not found it-and he said that he was sure they would have done the tests for Lupus, but that it was just NOT showing at the time, and that I had been very unlucky, but that Lupus is very hard to diagnose.

    Hopefully for you, now that you have a appt for a Rhuemy he will confirm, and get you on the right medication-

    MY advice is:-make a diary of EVERYTHING you have suffered with over the years-(I did this with my new Rhuemy (hadn't done for Guys) and when I looked back properly could see that my symptoms had started back in 1999/2000 with a bad left foot that swelled up for no reason, and it happened about 3 times-it was so painful that I went to A&E thinking it was broken-but no, then put it down to 'gout' as I thought that I may have overdone the wine! But now realise it was prob the start of it all. I listed everything that could be rhuematiod related i.e suddenly not being able to lift my arm etc., by year- (also mentioned the pneumonia episode) and the new Rhuemy agreed that they were probably all related to LUPUS.

    So Good Luck with your Rhuematherapy appt. don't be frightened to mention anything-YOU are NOT paranoid or a hypocondriac, you probably have an illness that is very good at disguising itself, and you most certainly are not alone.....Keep your chin up xxxxx

  • Bam is correct, my diagnosis took so long to come I thought I was a hypochondriac , then I took pleurisy and a pulmonary embolism and was then confirmed was sle, it takes a while 3 1/2 years for mine 15 years down the line I'm so thankful as when I go my gp he is on the ball and knows exactly what course of action to take, keep your chin up, I know it's hard but better that than giving you loads of meds that don't work x

  • Thank you all for your kind words and support. Looking back I may have suffered from it mildly for much longer.... Feeling a bit better today, although my hands aren't working again, keep getting twinges of pain in my rib cage, one of my better days :)

  • Hi , sounds like you have had a hell of a time , I hope you get some answers soon. The two most important things are to get seen by a good Rheumatologist and to have a good sympathetic G.P. Lupus can be difficult to diagnose but it is soo important to have good Docs. I have had mild lupus for nearly 20 years but i still have a battle trying to get anyone to listen to me. You know your own body and you know when you are ill and need help.Trust your own judgement and take a list of your symptoms to the rheumatologist and your G.P.Wishing you well,


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