New here and new to Lupus

i understand what you are going thru my has lupus the doctor told she had in 94. its rough it makes me cry to see what you guys thru everday feel better

Hi . I am sorry that you are having such a hard time.  I knpw exactly how you feel.  I have had Lupus for a year and a half now.  I did loose my job, my ability to drive and even the ability to be left alone for the first 10 months.  I have days now that I really feel well.  a couple time it has even lasted a week or two, but them something developes.  What do we do....I want my life back...

Sorry you are having a rough go of things right now. I totally understand what you are going through. I did lose my job two years ago in August. I had a bad seizure and was off work for 3 months. When I went back I was having problems with the lupus. I went back to work one day and was still not feeling well. My boss said that if I went home I could lost my job. I said fine, I will just stay here. She kept saying I was sick and HAD to leave. She got the manager and escorted me to the door. I was mad enough at first I threw my badge at her! lol You would have thought I threw a fire bomb at her. She flew back and said I don't want it. Well, she was going to fire me so why not.

It does take very little for a flare to happen. Like you said, just going to the store or picking up around the house is it. Then I could be down for a few days, sleeping a lot. When I first had symptoms of lupus it was awful. I could not use my hands. Could not start the car, pull my pants up or open a door. The pain was so intense. I got yelled at from co-workers because I was missing work in January. We were not allowed to miss work during that time. It sure was not something I wanted to deal with! I would have rather worked! I can no longer drive either because of epilepsy. I still have episodes of staring spells and jerking motions so my dr won't let me drive. I hope you can get things under control. I take methotrexate (chemo)which has been a life saver for me. It kills off part of your immune system. It has helped with the pain some what. When a storm is coming in look out! It does not matter, the joints are really bad and can hardly use my hands, elbows, knees and hips. I just want to curl up in a ball and sleep forever then. Get really tired from it. Take care, sorry to ramble on! lol

I got diagnosed with Lupus  1 1/2 yrs ago and about 10 months ago with active Crohn's disease.  I refuse to let these diseases control my life. We have to fight for ourselves and our loved ones. If we quit work, stop taking care of our families then these illnesses win and I refuse to let that happen.

When I have terrible days I hold my necklace which is from the poem "footprints" and he gives me the strength to continue. I work as a marketing manager for five states -12 hrs a day most days which includes traveling to NJ/PA/VA and the pain in my legs is so severe I turn up the music and focus on the beat. We are strong women and we need to be there for each other during the good and the bad. We we need to vent I will be there for you but then I will say ok we need to stop letting it control us we will control IT!!!!!  I am just a phone call away for hope and laughter if you need me.

I have a 21 year old son going to medical school severing from Crohn's disease since age 12 and he never gives up and is determined to find a cure for Crohn's disease and maybe just maybe a cure for LUPUS... someday we will be ok...I believe it. I take so many pills a day I use to get mad now it is just routine and I know it just keeps me going...

www.youtube.com/watch

www.youtube.com/watch

This video says it all!

I am new here, but I have had lupus about 15 years. IT SUCKS! I have been so scarred by lupus. I have crohn's, vasculitus,arthritis,fibro etc. I have been able to learn how to manage the pain, it is the new symptoms that I am not doing well with!

I decided to post this for everyone with Lupus. There is no cure for Lupus, but it may be a misdiagnosis and going gluten free may be worth a try. Chrohn's disease is the number one misdiagnosis people get. Doctor's just don't get it!

I felt the same way but my diagnosis was different. After being diagnosed with fibromyalgia and IBS, I finally found my real problem. Celiac disease, I'm writing you because I saw a special on tv that talked about the symptoms of Lupus and how the doctors conclude that it's Lupus only by eliminating everything else.

Celiac disease and gluten intolerance have so many symptoms that doctors have trouble diagnosing it and I haven't found a doctor yet that knows much at all about it. Two books to read " The Gluten Connection" and "Healthier without Wheat".

If you can eliminate the gluten take extra vitamins after your body starts to heal and slowly build up to exercise.

I know your pain and believe me, even though I still have pain, the gluten made it 100 fold.

Before being diagnosed I was so weak that I only functioned for about 2 hours a day. I was so weak that I couldn't open a can of pop. My feet hurt so bad I could hardly walk.  Now my strength is back an I only have pain from the irreversible damage that the gluten caused my body. My nerve endings have settled down.

It's been two years now and I still accidentally consume gluten on occasion and I pay for it for a week and tell myself never again it is not worth it.

Even if a doctor doesn't give a diagnosis, it would be worth a try to make the pain go away. There are many sites with helpful info.

www.gluten.net www.celiac.org  www.celiaccentral