View Full Version : Hi... I Am New

12-03-2009, 06:59 PM
Hello all. I am new to this board. I am also new to a diagnosis of Lupus (SLE). I am 43, and have had episodes a few times over the past 20 years that have had doctors running all the blood tests due to a family history (Great Grandmother and Gma). ANA panels always high, but nothing past that. Instead I was diagnosed with Reactive Arthritis.

When I delivered one of my sons, I broke out with a head to toe rash that the doc said was my being allergic to the hormones during delivery.

This time, I had excessive leg shaking when I got overheated at Disney World on family vacation, and ever since I had feelings like my arms and legs were shaking (but not visible to others), and just not feeling like myself. After being sent to a Neurologist, and being told I have the nerve conduction of a fit 18-20 year old, they ran ANA again. That resulted in a trip to a Rheumatologist, several vials of blood, and a diagnosis. At least we have that finally, as I was starting to wonder about my own sanity. I am active and fit, and was shocked at how 'not right' I was feeling. I go tomorrow for my follow-up as the diagnosis was made and I received a call last week. I love the doctor, and think we will work together well during this journey.

So here is my question for you all who have first hand experience at this. When I am at my office, I feel like my scalp is burning, and my 'insides' are burning or inflamed. I also notice this feeling at the grocery, or other places with significant fluorescent lighting. I have tried turning off the lights in my office, but still feel odd. Stiff. Achy. Wrong.

Does anyone else have this issue, and what solution have you found to help?

Thanks for listening to my story!

12-03-2009, 07:32 PM
Welcome to the group...I have had a similar journey..many years of on and off "weird "symptoms...just diagnosed months ago. I have had the vibrating muscles but not so much of the burning I have had occasional burning on my face, and I am in flourecent light all day. You could have a sensetivity to the light though. I am sure someone will come long soon to reply..we all have varitions of"the Lup"...be well

12-04-2009, 08:16 PM
hi lap717

welcome to the forum. You will find so many compassionate and knowledgeable members who are always ready to help.

Referencing your question about flourscent lighting, have you investigated covers for the lighting in your office. They make covers that block the UV rays, and this might help.

I have found that i must limit the amount of time that i am directly exposed to flourscent lighting. I don't shop for very long because i will start to feel achy, and fatigued. I also get burning in my legs and shoulders, but have always associated that with fibromyalgia.

again, welcome, and i hope you will let us help you past this frightening time when you are getting a diagnosis, and discussing treatment options.

12-06-2009, 09:41 AM
welcome to the group! I think you will love it here!

Angel Oliver
12-06-2009, 11:49 AM
Hello and welcome and yes to your question! Catch up with you soon and im glad you found us.

Lots of love

12-06-2009, 01:05 PM
I also want to say welcome and i was 58 when diagnosised. Bonita

12-06-2009, 07:24 PM
Welcome, yes stay away from flurescent lighting for some reason it doesn,t react well my lupus. Try to go grocery shopping with a long sleeve shirt pants, and sun visor or baseball cap. as far as the burning I have that problem to it feels like acid running through your veins and bones. When this happens I go to the emergencyy room, the pain is unbearable. Askk your doc to check for vasculitis. good luck, and I hope that we can be friends.

12-12-2009, 03:52 PM
welcome to the site i am 44 and from australia look forward to chatting with you in the future i suffer from shaking and tremors and burning in different parts of my body i get dizzy and nauseated when in the sun and break out in rash just red blotches on arms and face i was diagnosed with lupus last year have had problems for years but they could not work out what was wrong with me. well have merry christmas if i we do not chat to you before then hugs kiml