My dr is finally investigating my symptoms and testing me for Lupus any advice please

I'm completely new to all this Lupus business, for years my Dr has tried fobbing me off with my fatigue being down to me being over weight and my under-active thyroid, one Dr even told me I might just have to face the fact there's nothing wrong, with me and I'm just going to be tired to say I hit the ceiling would be an understatement I'm 27 and a cleaner by trade so far from the stereotypical fat and lazy that they like to label everyone who isn't slim with. I got a 2nd opinion and she has decided to test me for Lupus I seem to get bouts of extreme fatigue, brain fog, memory loss and a rash on the back of my hands. I don't know much about Lupus and would like to be prepared for the possible outcome.

9 Replies

  • hello .good for you.i ahve been battling with my gp and rheumy for 3 years .rheumy only went on about weight and dismissed all refused scans,treated me fro lupus like symptoms btu ddint connect them said obese based on bmi which only measures total body weight nto where it is distributed and rheumy told me I needed to diet when it told him I couldn't as don't eat anything like cakes puds etc.hopefuly will get issues resolved at appts with gp and rheumy next month.

  • If you would like one of our free information packs about lupus, including details on how it is diagnosed and what to expect, please send me a private message or email me at with your name and address.

  • Thanks guys, the BMI charts should be scrapped but unfortunately until they find something to replace it with this isn't going to happen, I haven't been treated for anything but an under-active thyroid as the drs at my local practice are known to be rubbish hopefully I've found a decent one now though. The most frustrating part was just being fobbed off if they could only feel how I do on a bad week they might listen! If I haven't got Lupus I'm not giving up the fight to figure out what's wrong I know that there's something wrong.

  • totally agree .scrap BMI charts dont give true measurement

  • Whatever you do, try not to panic. There is a lot of material on lupus and on life with lupus, try to just focus on few serious websites (lupus Uk, lupus foundation of America, Alliance for lupus research, to name but few) and take other website material with a pinch of salt. And remember that we are all different - just because things can go wrong, it doesn't mean they will for you. Try and keep a positive attitude (very difficult in the face of pain and unpredictable symptoms) even when you're down. It helps with the lupus who likes peace and quiet and happiness to sleep (and we all want it to be asleep, believe me).

    Good luck with the quest for diagnosis - if it is lupus, we are all here to help.

  • I can, hand on heart say that this site is fabulous for giving the support and finding out you are not alone when others around you don't truly understand about the illness. Apart from my immediate family who see me with no make up on, in pain and struggling...many other people think you look fine! I say now to the teens that when I put my make up on it's my mask! Lol

  • Thanks, I just want to know the outcome I'm really impatient when it comes to these kind of things only had the blood tests on Monday. I'm purposely avoiding scare mongering websites it's not worth the stress. The not knowing has nearly destroyed my relationship, it's hard for people to understand when I don't even know what's wrong with me

  • Just phoned the surgery and they told me that my blood tests were all normal and no action is required, I'm not sure whether to be relived it's not lupus or concerned that it it's something else

  • Hi Laura, you have 2 choices in my opinion. You can wait and see if you develop other symptoms, or you can ask GP to refer you to a rheumatologist who will consider your physical symptoms and request that his own blood tests are done. A GP has only a basic knowledge of lupus, and will not know that lots of patients present with normal bloods. This is why lots of us have had to endure years of this before diagnosis. Keep a diary of your symptoms, and take photos of any rash. I hope too,that you have not got lupus or anything else, but if deep down you know something is wrong, then keep pestering until you are convinced otherwise.

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