Confused about lupus.

[Emmy94]

Hi i was diagnosed with skin lupus when i was 7. The doctors never really explained it to me, maybe i was to young to understand then, i used to get the lumps on my face and felt horrible and weak after being outside just had to put cream on that had steriods in it. When i was first diagnosed i think i went to a specialist in a different town once but all she did was check my body for more lumps, i dont remember much at all. I am now 21 i don't get the rash anymore but everyday i feel drained,tired & sore no matter how much sleep i get. I've had problems with irregular heart beats, feeling like fainting expecially if i don't get much sleep, chest pains etc but the doctors put it down as it just being my anxiety. Im almost always sick had lympnodes up then got told it was glandularfever, just got over that, now atm i have a kidney infection. The doctors tell me they test my blood to see if my lupus has turned into sle but its always came back negative. I guess what im asking is, i thought i would only get these symptoms of lupus if i had sle im just so confused and annoyed because i don't know a doctor in my town i can ask questions about it, i have no one to explain it all to me and i don't understand my own problem. Can someone please try to explain a little for me? Tia

[Kazunlocked]

I was Dx 4 yrs ago with Cutaneous Lupus. I was terribly ill & spent time in Hospital. It took about 6 months for them to realise I was one of the 10% who had tipped over into S.L.E. Either way you need a referral to a specialist. I'm guessing you live in the U.K. - the London Lupus Clinic is world renowned, maybe you could contact them for a starting point. Best Wishes to you from the Land Down Under.

[Emmy94 in reply to Kazunlocked]

Serious sorry to hear that, Why did it take so long for them to realise? I was told to get a blood test every year just to make sure & that the blood test would be able to tell them the results straight up. Im so used to the pain i don't know the difference really because ive had it since a child. Maybe its better if i dont find out 😂 Thankyou but i live in australia ☺

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

I can appreciate how worried and anxious you may be feeling.

There is only a small percentage who develop systemic lupus erythematosus but I understand your concern, especially when a doctor refers to glandular fever.

Blood tests are a curious thing. Sometimes, blood tests "lag behind", that is, they do not always show anything abnormal. In addition, there are patients with SLE who are "sero-negative", that is, do NOT have a positive ANA, dNA and yet have SLE.

Unfortunately, you are not the first woman to be told you are suffering from "anxiety" or "depression", that is, you are being told, "It's all in your mind" because they doctor does not know and this is possibly because the doctor is not a lupus specialist. Not all rheumatologists are expert in lupus and some have never treated a patient with SLE.

I do not know whether you have SLE or not. I hope not. Having said that, my advice to you is to find a lupus specialist and see that doctor. Do not be put off by anyone because this is your body and your life.

Here are some websites which may help you find a lupus specialist in Australia:

lupus.com.au/

lupus-sle.org/

racgp.org.au/afp/2013/octob...

garvan.org.au/research/dise...

lupusnsw.org.au/

lupuswa.com.au/

facebook.com/LupusSLE.Austr...

If you need psychological support, then LUpus Patients Understanding & Support (LUPUS) is one of the few dedicated organisations that specialise in this area.

Please contact me if I can help further.

With good wishes,

Ros

[madhead]

Hi Tia,

This sounds very similar, i to was diagnosed with Lupus of the skin but as my test keep coming back negative they say that now i don't have Lupus, but i get aches in my limbs bad aches this time when my skin started to flare up . As you i don't know what is happening to my body I just want a firm diagnoses.

I have just had two biopies one for the skin discolor and one for the rash.

Hopefully when i go in two weeks i might get more answers. I think it is best that some one who has had Lupus for a while will be able to give you more advice.

good luck.

I do hope you get your answers.

Carole.