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Moms suffering with Chronic Pain Disorders

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Introduction

Jamie - posted on 12/10/2008 ( 1 mom has responded )

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Hi, my name is Jamie. I have been dealing with Lupus for 20 years now(since I was 12). I went many years with no symptoms. In the past 3 years my quality of life has gone way down hill. I have had 16 fractures in 3 years. I spent from Jan - April of this year in a wheelchair due to stress fractures in both ankles. I just refractured my rt ankle and am back off of my feet. The pain in the past 3 years has been unbearable. I hate that I can not be active with my 10 year old daughter. Can anyone relate and help!

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Laurie - posted on 12/11/2008

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Hi Jamie... I do understand, sort of. I have ankylosing spondylitis and several years ago developed a related disorder called cauda equina syndrome which basically means I lost control of function below my waist... nothing worked but the pain sensors. Because of the AS, the surgeons won't touch the degenerative disks in my back so I have pretty severe nerve pain in my limbs, too. By the time I was twenty eight I was taking a lot of medication just to get by. I have improved greatly due to remicade (excuse my ignorance... are the TNF inhibitors treatment options for Lupus?), and most days can walk without a cane. I still have a lot of pain from the disks and where the AS had already spread, but it has definitely slowed down.

I wish I could help, but all I can say is I understand what it's like to hurt all the time in a way that people around you just don't understand. I know what it's like to watch your family function without, or at best, around you. I know what it's like to hate bedtime because then you're alone with your pain.... if you need somebody to talk to who can relate, please feel free to contact me privately, because I also know how much I needed someone who could listen and KNOW what I was talking about....

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