21,173 members16,760 posts

have i got lupus just want to know ,easier to kick ass when you it's name

had problems for years but just going to fast forward to last few years.lived in spain for 4yrs.wasn't well for a while stomache tender,feeling weak,hardly ate,acid reflux,nuasea could take anymore went to docs(stomache pain didn't start til he examined me)he sent me to hosp(pain now ache)they thought appendix i knew different (happened before)put on drip then sent home feeling better but not good.while being back and forth to doc and hosp i broke my leg whilst in cast stomache getting worse.let me cut this short,ended up in hosp again,kept in for 8 days,diagnosis ucd and had a mass of polyps removed whilst in hosp i kept asking if endrometriosis related(had a full hystorectomy number of yrs before this) as it felt so similiar in many ways.couple months later had rash,ignored it as never bothered me til it took over whole stomache area,was treated as fungal infect(by uk doc) it was not (treatment made a lot worse)went to hosp again to skin depart had all allergy tests done (negative).they took biopsy as dermo doc didn't have a clue,unfortunately i left spain before gettin results(had rash approx 2 yrs)been back in uk 20 mnths.noticing sensation in legs especially after work,self diagnosed ( not used to working,getting old and smoking).stomache problems return had to leave work 1 night went to docs next morn sent me straight to hosp.ct scan showed ucd colonopscopy ruled that out polyps removed(small ones this time)read file on bed hosp greatest worry multiple organ failure,whilst in there felt i was having panic attacks(not had 1 for years)had massive attack all sorts equipment on me was never told reason for this,Anyway in hosp 8 days was told if happens again straight to surgery.outpatient appointment was sent for scan on liver, apparently they found 3 lessions(never knew)when in hospital,been for a couple scan on liver went back for results was told i had IBS (in other words havn't got a clue).rash back (doctors no clue). left arm and hand very sore doctors diagnosed RA,symptoms now all over body so many different ones at different times affecting my arms,feet,hands.knees,face.lips and recently my appointment with bone specialist? tomorow made by 1st surgery(changed doc as others made me feel like hypochondriac and quite often left in tears) got new doctor my 1st app had me going in with picture of rash(internet)and demanding to be tested for sarcoidosis as when symptons put in computer it came up 1st with picture of my rash(never put that in as didn't know conection) he sent me for x-ray to rule sarcoidosis out and this was 1st time i heard of lupus, i had blood test done on 28th dec i have stopped smoking and symptons getting worse,i have lots of them( typing this irritates my fingers) but i feel like im losing my mind.questions are 1if i am a hypochondriac tell me so i can kick my own ass 2 does any1 else think there's an endometrosis connection 3 does any1 think it's lupus 4 can any1 tell me what to get to sleep (not power naps as this is my sleeping pattern even though i'm exhausted)

9 Replies

Hi ya. I worked with a lady who had diagnosis in her 30s and she gained lots from support but it took a while for her, the kids and her hubbie to work through this. (4 years I think). She like you took multiple visits to the doc to find out and is now 15 years on with teenage kids and a very positive life and outlook coming out from very dark days early on with concerns about her 'being a nutter'' etc - although I never thought she was a hypochondriac etc etc She had shifting sypmptons but classically skin rashes, stomacth issues and the like.

Have faith and her biggest help with it all was being fully rested by hypnosis. Just a thought?

Take care and keep well. Toff x


thank you for replying,i have kids all grown up and left home with kids of their own and i'm currently single so mostly on my own but very independent and would like to think i'm positive as wont let anything beat me if i's the not knowing that's stressing me and doctors who don't know what wrong but won't admit it and fobing me off with pathetic reasons for doctors seem to be different as started tests straight away more or less and i don't expect answers like now (well maybe) but no matter what always looking to the future x


I would definitely ask your GP to check your immune system fully at this point. All these random symptoms affecting your entire body at different times are suggestive of an autoimmune disease that's fully active. It is possible that some of your symptoms might not be related but I suspect the majority connect to autoimmune. I hesitate to call it lupus because there are many variations of autoimmune disease but blood tests and medical history should be sufficient to diagnose specifically.

Better still, ask your GP to refer you to a rheumatologist and he/she will know what tests to do. Have your chronology of symptoms written down and with you when you go and see the rheumatologist, makes it easier for you to refer to it during the consultation.

Many of us have been labelled as hypochondriacs before diagnosis (my GP, for example, was keen to put me on antidepressants rather than send me to a rheumatologist) but you shouldn't let that upset you or frustrate your efforts to get referred. Just focus on getting in front of a rheumatologist soon, even if that means you have to be persistent with your GP.

I'm sorry I can't answer the question on endometriosis, I don't know what that is. As for sleeping, your rheumatologist will deal with that too.

Don't give up and I hope you'll get there soon.


didn't know at time of hystorectomy or until recently due to fact i just researched it (why didn't i think of that before)endomertriosis is linked with/classed as autoimmune conditions suppose like a lot of other conditions depends which doctor you speak to.but was interesting to read things about it.i suffered a long time with endo luckily had my kids before the need for doctor kept telling me it was menstral and i should basically get on with it.strange as it seems to me history repeating itself 20 years later only cant blame it on menstral problems this time


thank you for replying.i will never give up even though it feels like hitting my head off a brick wall sometimes.hopefully bone specialist tomorow will refer me to rheumatologist.i do agree what ever it is it's affecting more of my body.i've read on here about people having flare ups,how long can they last? how would i know if this what i've been having for years ?


The blood tests take few days, it shouldn't take long to diagnose once a rheumatologist gets to see your results, assuming they are conclusive. If the blood tests are borderline or normal (which can happen even if the illness is active), you will probably be sent away until they do show something, though some doctors might start you on trial medication straight away. Flares differ from person to person, they last from few days to few weeks, months, or even years - they basically mean an increase/worsening of symptoms. Doctors will aim to reduce the activity as soon as possible and give you pain relief, if in pain. You're on the right track once you've seen a rheumatologist, which is why I suggest you see one. Keep pushing for answers, it takes time to convince others.


had blood test done at last doctors for RA came back neg then for gout again neg.just had some more done at new surgery on 28th dec,think doc said 12/14 days for app tomorow bone doctor but received letter 2day to attend special interest clinic,ever heard of it ? i know it takes time as i told my daughter she had symptoms of endo over 2 years ago,docs did every other test before endo test(they said because it was invasive) she now been diagnosed with it.this really worrying for me because i think endo and whatever is attacking my body now are linked


That must be so worrying for you, all these tests not showing much while symptoms go on regardless. I have never heard of special interest clinic, let me know what it is once you've been and good luck at the doctors today!


I have Lupus and sjogrens and vasculitis. I also had endometriosis. It took about 6 years to get a diagnosis. My symptoms mirrored yours. I paid to see a consultant 10 years ago at thesuggestion of my GP. It was tbe best £120 I've ever spent.

On the right medication you will begin to feel better. Good luck.


You may also like...