Any advice of what I should do?

[cynth65]

Hi..I'm new here...just looking for some answers!
I was diagnosed 8 years ago with Fibromyalgia..they tested me for lupus and my levels were borderline. I was told to remind my Dr. to check levels every few years. I had been feeling pretty good, so never worried about getting anything checked over the years.
Now, I really suspect I do have Lupus....symptoms having been popping up in the last month like crazy. At first I thought maybe my fibro was just really bad, but I've noticed a few things:
1) sun has really affected me
2) rash across my cheeks and nose like a sunburn, even when I've only been out for a minute in the sun
3)I am so tired and muscles hurt and burn like never before
There are more, I won't get into them right now. However, my question is..what is my next step? We have moved since my last testing...new Doctor who hardly knows me...what do I ask for and tell him?
What do I look out for as far as symptoms to tell him?
Any help would be greatly appreciated!! style_emoticons/<#EMO_DIR#>/biggrin.gif Thank you!

[Christine UK]

<span style="font-family:Comic Sans Ms"><span style="font-size:12pt;line-height:100%">
Hello and welcome..
Can you let us know what area or country you are in maybe someone can let you know of a lupus specialist.
Is your GP the sort you can apprach ?maybe he can suggest someone..
meanwhile keep a diary...of symptoms etc...bloods are not the be all and end all...as many ladies here will tell you...
let us know what happens x x</span></span>

[Joandublin]

Hi Cynth

Welcome to the site. I am sorry to hear about your symptoms. Have you checked out the symptoms list on this site? Here is a link to it.

http://www.uklupus.co.uk/lsymp.html

It certainly sounds like you could have some of the symptoms. Have a look through the symptoms list and see if anything rings any bells...

I would simply go to my new GP and explain what happened 8 years ago and what you were told at the time. Just be honest and tell him you didnt follow through because you felt okay but you are now worried because of the symptoms you have. Make a list of them for your GP. Most GP's are very uninformed about Lupus but you could ask him for a referral to a Rheumatologist. As a start your GP could run a few blood tests which might point in a particular direction, e.g. ANA, ESR, CRP, etc. Here is a link to the blood tests used when diagnosing Lupus.

http://www.uklupus.co.uk/tests.html

Remember though, it is not always just about blood tests. Your clinical presentation of symptoms are equally as important.

The best of luck and I really think you should go and get checked out soon.

Stay in touch and ask any questions.....

Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Cynth, welcome to this site, I hope that we can all be of some
kind of help and support. Most of the things that you wrote in your post
still ring of fibro, but that is not to rule out the possibility of lupus either.
First, there is no one blood test that can say,"yes", you do have lupus, or
"no" you do not have lupus. Blood tests are used as a guide line to help the
Dr know in which way you are going. You have to be under the care of a
Rheumatologist, he will decide what bloods he wants to start with, then you
need to hand him a list of your symptoms, what hurts, how ago did each one start,
where does it hurt, how bad, and for how long , what makes it go away, basicily
all your symptoms, as they are the most important. Make two copies: one you
keep home with you anad keep adding to it as a journal each time something
new happens. The other sheet, you casually hand to him at the end of your session
and just say " this is for you to put into my file,dr." The diagnosis takes yrs, so don't
worry about getting that label, the most important thing is getting him to start treating
you with the proper meds and begin to attack this, Also, two rules; 1-the sun is your
enemy, and 2-stress=pain. Believe both of them. If I can be of any more help, just
PM me and I"ll try my best, we are all here to help and support.

Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[cynth65]

Thank you so much for your replies!

I'm from Waterloo, Ontario Canada..so if you know of any specialist in the area, please let me know!
I'm 41, married with 2 girls...
Thank you for your advice of what to keep track of and the differenet links etc. Since my G.P. is new to me since the move, I'm not sure yet what his take is on fibro or lupus etc. I'm really hoping that when I see him and discuss the need for some up to date blood tests and the symptoms I've been having, he will take it seriously, but I'm not sure. He does have my file from my old Dr., so I'm hoping he will realize that lupus is a possiblity and to do the tests needed.
Thanks again, it's so nice to know I'm not alone in this! style_emoticons/<#EMO_DIR#>/Thanx.gif
Cynth