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Symptoms getting worse

Hello,I'm 45 and was diagnosed with SLE about 5 years ago. The symptoms were mild but enough to make me feel awful! I've managed to cope without taking meds and have had lots of osteopathy, which really helped. But, over the last 4 months my symptoms seem to be coming back and are worse than they were! I've been to the Dr with a long list of symptoms but she just wants to treat me for anxiety. I really want some bloods done to see if anything has changed.

The worst symptom at the moment is a burning mouth, swelling and burning lower lip, irritated skin on my face, back, stomach and arms, even my eyes feel hot! I'm going to see a different dr this afternoon, but don't hold out much hope. What to do?

5 Replies

Funny how Drs seem to want to put everything down to anxiety, I had exactly the same for years, apparently I was anxious or stressed. I can honestly say I was neither!!

Unfortunately the only thing you can do is stand your ground and force the issue, You know yourself better than anyone so dont be fobbed off.

I hope you feel better and get some answers soon



Thanks didds for your comments. I do feel anxious, but that's because I don't feel right and the burning is driving me mad!! The dr doesn't seem to understand that you can have physical anxiety, that will eventually turn into mental anxiety if the root of the problem is not found. I hate going to the drs as they make me feel like apologising for being there!! But they are the only people that can help you to get the right diagnosis, so as you say I'm going to have to stand my ground and be tough!

Thank you. xx


What about your rheumatologist?


Hello Maggie, I haven't seen a Rheumatologist since I was diagnosed. I asked the Dr for blood tests and a referral last week and she said it was unnecessary! I have hypothyroidism, and asked for that to be done again, but she said that the last test done 6 months ago had good results and it would be a waste of time! Even I know hormones change daily!! Grrrr!!!! :)


That is appalling treatment from the doctor! I hope that you get somewhere with the different doctor.

Even if your lupus has been fine, you should still have access to a rheumatologist as as well.

Best wishes, hope appointment went better this afternoon x


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