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should i mention lupus to doc??

451 Views 6 Replies 6 Participants Last post by  kate88
Hiya all x x

I'm so glad found this site!!!

I hadn't even heard about lupus until about 4 months ago, my aunt has sle and i wasn't sure what it was so i looked it up and it just reminded me of my own symptoms!! Just to give you a background on me:

I'm 27 yo female, i haven't been well for about 6 years, my main symptoms are fatigue, malaise (as thou i have the flu), sometimes every muscle in my body hurts as though i have ran a marathon i think its called myalgia??, at the minute i'm getting lots of mouth ulcers the ones under my tongue hurt the most!! dry mouth and lips especially in the morning i've starting putting vaseline beside my bed as my lips keep cracking. i feel as though i have bad joints which includes ankles knees and hips, very bad backs.

I have had a total of 7 pregnancies, 3 of which ended in miscarriage, My last pregnancy i developed pre eclampsia which is apparently not a common as it is usually your 1st? i also ended up with post pre eclampsia and was ion blood pressure meds for about 4 months, my urea was also high for about 4 months after the birth.after my last 2 caesareans i also had wound infections and celulitious

I went to see my doctor about it all about a year ago and he done a blood test for thyroid which came back clear so he said i had chronic fatigue syndrome, he game me anti depressants which gave me sore heads, so he changed me to anafranil (for narcolepsy :? ) which made me extreemly drowsy to the point i couldn't function at all!

So for now i'm just managing, i'm always at the doctors for one thing or another and i'm starting to feel like a hypocondriac so i don't know whether there is any point mentioning to my doc about possible lupus as i DO NOT think it is CFS

Every-one here has a lot more experiance so what do you think??

P.s sorry for the rant it just gets so frustrating when you know there is something wrong! :calm:

Kezi x x:sad:
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Hi Kezi

Welcome to the Forum. Im sorry to hear about all your health problems and your miscarriages. It certainly sounds like something else besides CFS is going on with your body. CFS is usually a diagnosis of exclusion, i.e. when all other possibilities have been ruled out. I think if your doctor simply ruled out thyroid and then declared you had CFS he has been very remiss :(

Some of your symptoms could be lupus related but there are many other autoimmune conditions which display similar symptoms so the most important thing is for you to get a referral to a Rheumatologist so that they can do some detective work. The easiest way for most people to get a referral is to have a positive Anti Nuclear Antibody test result (ANA) which justifies a referral to a specialist.

Can you go back to your doctor and tell him that you think something systemic is going on with your body and that your symptoms may be inter-linked? Its always best not to mention the word 'Lupus' or indeed any other specific condition as it tends to introduce a 'dynamic' between doctor and patient that you really dont need right now. Certainly tell him you are concerned you could have an autoimmune problem and would like to have an ANA test carried out. If this comes back positive at high enough titres then you are on the next phase of your diagnostic journey.

Its important to remember that there is a very small percentage of people with Lupus who dont have a positive ANA but thats for another day's worry:)

In the meantime, list down all of your symptoms and keep a diary from today of how you are feeling healthwise. This will help in any upcoming rheumatology appointment you might get.

There is another autoimmune condition known as APS or Hughes Syndrome which is associated with miscarriages and you might like to check this out and see if anything rings a bell. Here's a link for you to a reputable site

Another condition worth considering is Sjogrens Syndrome which presents with a range of symptoms including dry mouth. Heres a link about it

Many people can have an overlap of autoimmune conditions so having one doesnt exclude having another. The important thing is to get yourself to a specialist and they can begin to do the specialist antibody testing needed.

The very best of luck and we will help you any way we can

Take care for now
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I probably wouldn't ask the doc directly if it was lupus (most doctors hate people who have self diagnosed from the internet), but I definitely would make up a list of family members with autoimmune diseases. Include your aunt with SLE, and anyone else with thyroid, arthritis, coeliac disease, etc. Autoimmune diseases definitely run in the family and if you can show a family history of different ones, then the docs are more likely to consider it with you.
thank you

Thank you for your quick replies !!

I just gets sooo frustrating ! When i do go to the doctors it's always new thing for example in the last 8 weeks i've had pneumonia, then a cold with another chest infection, then my back went, then i got another cold and red raw throat then i ended up ill as usual with the myaglia and malaise and all this time i had ulcers constant when one went another one came!

So i am really sick of being sick and feeling a little sorry for myself :sad:

You all seem so supportive to each other which is great xx

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K, If it is Lupus you will find after a while on treatment things do stabilise. For instance I only have mouth ulcers occasionally, they used to be huge ones often an inch long, sometimes even more. I could hardly swallow. You have my sympathy.

As you probably already know Docs. do not diagnose Lupus lightly, it can impact on things like Life Insurance, Travel insurance etc. Also sometimes time is needed to see how things develop. None the less if your symptoms are troublesome you should be offered help with them even without a formal diagnosis.
Hope this helps,
X Lola
Joan, and the others have given you great advice.

Welcome to the board and good luck getting a dx and getting on meds.

I was dx with CFS years ago, then Fibromyalgia, then MS and then it was Lupus and not MS.

Moral of the story is Auto Immune things can take time to show up on our blood work. In the meantime work with your GP or a Rheumy doctor to manage symptoms.

I also had pre-eclampsia with my pregnancy and I have APS...Antiphospholipid Syndrome, also known as Hughes syndrome.

Check out the link Joan provided to you.
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getting diagnosed is lame, and i wish you luck

I understand the feeling down while you are sick. I am about a year older than you, going through the referrals to doctors after doctors. My symptoms have been different than yours, but my blood tests and other diagnostics tests have just made the physicians treating me scratch their heads.

I think this site is pretty awesome. Not knowing what's wrong with yourself is scary and personally makes me very self-conscious. I am basically just writing back to empathize. I can't really give too much advice, since I am pretty much in your shoes. But, I can say that I am coping by trying to not isolate myself. Laugh with my husband, talk to my friends, and when I do feel good, I do stuff that I enjoy. (The feeling good has been few and far between for me.) But, watching shows that make me laugh, I figure one has to find laughter, or one will lose one's mind.

Anyway, here's to 2009 bringing better health to both of us. And, I hope you get answers soon.
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