View Full Version : New, possibly Lupus

Betty Boop
05-31-2009, 09:58 AM
Had Graves 7 yrs ago, now hyypothyroid, Levoxyl . 2- years- worsening fatigue. Thyroid level normal. lingering headaces, chest pain. sensitive to light and warm temps. 3 wks ago -hot raised flushing to face, neck and upper chest. Friday, not better, saw new PCP. He said likely Lupus. Upset and scared, yet relieved this might the answer. I have extreme burning and inflammation in my joints that vary in location, muscle wasting in my arms and lower legs. My number one question is how often these flares occur for you and how long they last. When I look back over the last two years, these episodes, for me, last anywhere from a week to several months and vary in intensity. It has been hard because no one understands how bad I truly feel. I am beginning to think they just dismiss me as being a hypochondric and difficult. It is a lonely place to be.

05-31-2009, 10:23 AM
hi betty,

i see you are in augusta, i am in atlanta, and there are a couple of other fellow georgians here at WHL. So, welcome to our family that spans the globe, and is even right here in souther USA.

you did an excellent job of answering your own question about duration and magnitude of flares. They vary from flare to flare, and person to person. Mine can last anywhere from 24 hours to several months. It makes it so hard to plan anything because i never know how i am going to feel. This isan extremely frustrating part of life with lupus.

Did your dr. start you on any meds? Plaquenil is a standard lupus treatment med, and most people get substantial relief after the med has had time to get into your system.

You will find a wealth of information here, so browse around, jump into any threads, and ask any questions....someone will always be here to help.

Angel Oliver
05-31-2009, 11:10 AM
Hello and welcome and yes like Phyllis said you answered it without knowing.Hope you settle in nicely here i am sure you'll find everything you need to know right here.


06-01-2009, 07:11 AM
Hello Betty! Fellow Georgian here...I'm in Marietta!

I feel you...the "upset and scared" part...I'm newly diagnosed myself. That said, there's something to be said for not having to fight an "invisible enemy" anymore. It's somehow comforting to have a name and a face for what is happening to you. I do hope that you can find some comfort here...I know I have.

Best of luck!

06-01-2009, 10:00 AM
Hi Betty Boop!
Love the name...that always brings a smile to my face! Sorry to hear about all that you have gone through and endured in the past 7 years. BUT i have news for you...you have come to the right place to vent and tell your story...whatever story you want to tell! You will find nothing but love and support and many friends here!
Welcome again!

Betty Boop
06-01-2009, 11:13 AM
I collect Betty Boop and have for years. She just makes me smile. Have a good day and thanks for everyone's support.

06-01-2009, 11:32 AM
Hi ya Betty Boop....


For me, flair without my Gucci bag can even be as small of an increment as a minute. One minute queasy, headache...pain and then the next back to my 'norm'...or I could be in one for months.

Keep looking for your wellness.
Enjoy this day.

06-01-2009, 12:02 PM
Hi Betty Boop:
Just wanted to add my welcome to those you've already received. As you can see, we all understand what you are going through and each of us suffer from flares that just as mind boggling as the disease itself.
We are here to help you in any way that we can. I'm glad that you are here with us and please know that you are not alone!

Peace and Blessings

06-01-2009, 03:52 PM
No need to be lonely here. We are quite the raucous crowd. Full of hypochondriacs just like you :)

Seriously though, you are not the first member here to have been made to feel like he or she is a hypochondriac. If you have been diagnosed with lupus, everything counts, and you matter. Find a doctor who takes you seriously and who will listen. Don't be afraid to flat out tell the doctor he or she is simply wrong. You know your body better than everyone.

Welcome to the forum. Hope you find comfort and friendship here.


Betty Boop
06-01-2009, 05:21 PM
Thanks for your encouragement. I am finding everyone so supportive. I know exactly what you mean. I have been trying to convince my doctor just how bad I have felt. It is now with a new PCP that I am finally getting some tests done and at least am being taken more seriously. I decided to change doctors because my instinct is telling me something is wrong. The last time I felt this way, I was diagnosed with Graves. Have a good evening, and again thank you.