undiagnosed - but certain its lupus- any advice?

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optimistic_Amy
New Member


Date Joined Mar 2015
Total Posts : 3
   Posted 3/21/2015 9:28 PM (GMT -6)   
I have recently been experiencing what I believe to be a lupus flare up.

It all started rather suddenly - sore knee, later on that evening my shoulder was also sore- the following day all of my joints were sore- all of them.

I have also been extremely tired- I don't even think tired is the proper word because it's waaaay beyond tired!

I started Googling my symptoms and thought of lupus - here are my symptoms:

-horribly painful/itchy rash after sunlight exposure
-myocarditis- seemed like a fluke and I've never been offered an explanation as to why this happened - but I DID use a tanning bed that night, I got very sick almost immediately afterwards.
- I get a scab in my nose sometimes when I get sick (could this be nose ulcers I've read about)
-broken capillaries all over my chest and arms.
-horrible Headaches- I always get Headaches- but lately they have been much worse.
-My brain is in a fog alright- sometimes I can't even find the words to finish a sentence.
-i have been sick, these symptoms started the day I took my last antibiotic- I've continued to have a fever ever since (low 99.0 - 100.1)

Last week my doctor sent me for bloodwork, and I have an appointment to go over those results on Tuesday- in the meantime, im going nuts! This unexplained pain and exhaustion is maddening, and I feel like people think I'm being a hypochondriac!

I do not have a butterfly rash on my face- but still, I feel like I can relate to the stories I've been reading online.

Did you feel like you "knew" before being diagnosed?

Did anyone experience symptoms like mine?

Am I jumping the gun here?

Post Edited (optimistic_Amy) : 3/21/2015 9:34:01 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7475
   Posted 3/22/2015 10:09 AM (GMT -6)   
In my opinion, yes, you are jumping the gun. It's best to wait for your Dr and see what the test results are.

Have you read the 11 symptoms used in diagnosing Lupus? You need at least 4 of them - from what I can tell your symptoms could match a few other diseases more closely.

What kind of Dr are you seeing? You need a rheumatologist to diagnose and treat Lupus - my recommendation on finding a good one is to check www.lupus.org and locate your local chapter. Then check with the local chapter to see what local Drs are active with them - these are the Docs most interested in helping!

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

optimistic_Amy
New Member


Date Joined Mar 2015
Total Posts : 3
   Posted 3/22/2015 12:09 PM (GMT -6)   
Right now I've just seen my family doctor, im assuming if my bloodwork shows anything she will refer me to a rheumatologist.

I looked at the list of 11- to me I have 4 (sun sensitivity, myocarditis, extreme fatigue, sore joints, nose ulcers).

The whole sun sensitivity and myocarditis was what made me think lupus as opposed to something else- but I certainly wouldn't be upset if it turns out to be something else!

Lupus.org looks like a fantastic website - but geared to living in America- the Canadian website isn't as good.

I will be sure to say what happens on Tuesday- im looking forward to an explanation.

optimistic_Amy
New Member


Date Joined Mar 2015
Total Posts : 3
   Posted 3/24/2015 12:28 PM (GMT -6)   
Well I still didn't find much out, elevated rheumatoid factor, ANA results were not available yet, everything else looked good! she did refer me to a rheumatologist, so hopefully I get appointment quickly.

In the meantime I'm still exhausted, sore joints and having horrible headaches boooooo!

Haley
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 10/23/2016 1:00 PM (GMT -6)   
Oh yeah! I am in the same boat. Mind you "jumping the gun" folks, I am in the process of becoming a doctor and I have a plethora of academic backing on this but yeah I KNOW I have Lupus. I am in the process of seeing a rhuemy (first appointment was bad and I asked to see another doctor) and I get to go over blood work 11/1. Now we play the waiting game.
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