Am I a fraud?!!

[twinx57]

Please can anyone help,I am at my wits end.4 years ago after an indepth investigation with a reumatologist who initially was convinced I had lupus,I was instead diagnosed with fibromyalgia,and discharged.I continue to have most of the symptoms of lupus at various times,and I am particularly bad at the moment in the awful heat and humidity.Just had another round of bloods done by GP which will probably come back negative.Have had positive ANA before and I believe positive DNA.I have family members who have lupus.I am getting so depressed because I dont know how to be proactive with my health when I can't be given a diagnosis,whether it is lupus or something else.Sorry to waffle but I am getting desperate!

[overnighthearingloss]

In my opinion we are being badly let down by the medical profession. I am not going to say the NHS because its wider than that.

I would like to understand who signs off the guidelines, and how they are approved before being signed off.

I really don't believe that it is beyond the abilities of the best medical brains in the country to be able to get to the bottom of what is causing an auto immune epidemic. Are the right questions allowed to be asked? Or are testing protocols and medications being dictated by drug companies?

[Barnclown]

yes. GRRRRR the diagnostic process can be lengthy and nightmarish, with many twists & turns, and miserable symptoms & emergencies. am very much feeling for you - after a lifetime of being passed from consultant to consultant...

when you said that you have family with lupus, i thought of my good luck via family: i managed to finally discover that my version of lupus was the source of most of my weird chronic health issues & emergencies, by getting my sister (who lives in the usa & was being treated for a rheumatic tick-born condition) to ask her rheumatologist for the names of a few british autoimmune conditions-experienced rheumatologists. happily for me, one of those names turned out to practice in the NHS not too far away, and my surgery was willing to refer me....

i agree with overnighthearingloss: you need to see a vvvv lupus-experienced rheumatologist who is confident enough to diagnose & treat based on examination & medical history...what about your family: have you already consulted drs recommended by your relatives? even a second opinion from a consultant who knows your family health issues could help your local rheumatology dept to step up?

[twinx57 in reply to Barnclown]

Thanks to overnighthearingloss and Barnclown for your replies.Just nice to know there are people like you out there who care.

[Hidden in reply to Barnclown]

99% of Rheumatologists and in fact, most MDs depend solely on lab tests and they are idi**ts with a MD degree. If lab tests can tell everything/confirm a diagnosis, anyone can do their job.

[lizzidrippin]

Hi twinx57

So sorry you're suffering, heat , humidity and Lupus really don't mix well do they?

isn't it sad that we all have to rely on a blessed label??!!

Lupus is anything but a regular symptomatic illness, I liken it to the National Lottery.....pick 5 symptoms and a bonus symptom can be different every week .........or similar and different......hey you're a Loopy Lotto Winner!!!!

Your symptoms are your symptoms and they are causing distress, aren't doctors supposed to help alleviate pain and distress?

Having just seen a pain consultant and been told that everyone gets aches and pains at my time of life......nothing would surprise me......

Take care and hope things improve soon

xx

[Hidden in reply to lizzidrippin]

"Lupus is anything but a regular symptomatic illness, I liken it to the National Lottery.....pick 5 symptoms and a bonus symptom can be different every week .........or similar and different......hey you're a Loopy Lotto Winner!!!!"

That made me laugh and how so true that is!

I often wonder if living with such a changeable condition with different symptoms each week will eventually drive us to insanity and isolation. I'm not joking...!

[Hidden]

I have a diagnoses of RA and of Hypothyroidism and am treated for both but I still feel a fraud a lot of the time. I think those of us with lifelong autoimmune conditions need assertiveness training along with CBT to help us gain more confidence in trusting what our bodies are telling us. I think if a diagnosis sits right with us then we will probably just accept it and get on with dealing with it as best we can. So if you did have Fibro and not Lupus then your instincts wouldn't keep telling you otherwise surely? But how to deal with battling on and on with doctors - trying to get these people to believe us - is quite another matter. You have my sympathy.

[twinx57]

Thanks Twitchytoes,just hearing that others understand the frustration of it all really helps. And your'e right...I am loopy which definitely helps! lol.

[twinx57]

Think my reference to loopy was meant for lizziedrippin,thanks again.....brain fogggggg

[kitkat74]

Hi twinx57,

Keep going back to your gp and seeing rheumatologist if possible as this is what they did to me. I was diagnosed with fibromyalgia and other things and was told I didn't have lupus. The entire time I have had it but only my third rheumatologist picked it up. Even he didn't think there was anything wrong with me. But you know your body so don't stop till you get some answers please.

After all you know your body and the symptoms you face everyday not to mention the pain. Keep lists of all aches and pains to show them good luck xx

[Maresy]

I am in agreement w/ overnighthearingloss. Something in the medical profession has to change to accommodate the large number of people who clearly suffer the same symptoms but from time to time - or even all the time - are sero negative. You have to search for that rare doc who has been around long enough to understand this fickle disease and who trusts patients' symptoms more than he/she does a lab test. The tests obviously aren't sensitive enough.

I get angry sometimes when I think of how long lupus has been a bonafide illness, yet tests fail us, doctors fail us, and (in the states anyway) the only lupus drug ever made specifically for lupus is not covered by (at least my) insurance company b/c it's too expensive. Our bodies are failing us - isn't that enough? Why does the medical profession fail us too?