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I don't post a whole lot, I love the info though, they are the closet I can get to some of the answers I have questions for.

I live with chronic pain,and have for majority of my 52 years.
I have had issues since birth, I came into the world limp as a rag doll-from waist down. And remained that way til I was bout three or four then it took a bit but I finally caught up with the 1st year of life mile stones. Doctors back in the early 60's didn't have all the neat stuff today to diagnois. So basically doctors simply didn't know what I had or how long or anything.
I learned all the things of childhood, then at age of 12, then my lower back started hurting something fierce and my legs went numb and I hit the floor, I was a skinny child so weight wasn't an issue. Well scared me so I kept it to myself and didn't tell my parents , figured they'd had enough issues with me from birth to 3 or 4 yrs so I just kept quiet. It happened several times over , over the course of the next several years (To Current) .. I couldn't feel labor, when I was pregnant with each of my children, It simply felt like a very mild cramps at the time of the birth, my best friend would spend daily with me esp during the last few wks so she helped me figure out when it was time to go. By the time the eldest was 8, he knew how to call his dad to come home, mama's in the floor and can't get up. Legs would go numb, pain would be horrible and after 30 min to a couple hrs legs would regain the feeling ect and all was fine (i'd also pee on self and not know it during the floor time. In 2003, I was hurting gain just all over my beck/neck.. and I called the neuro hospital here in okc and got in dispite that you're suppose to have a referrel but they did the tests ect, I have no reflexes in the left side or in the ankle of the right. I at that time still had reflex in the right knee.They did the nerve conduct test with needles , I never felt any of them in my left leg , the Right leg (this was up to my hip) I felt them in one spot in my hip and to the side of my right knee and that was it. Based on my discription of the falls, the Neuro-surgeons said that its very likely I was born with Caudia equina syndrome, and would be a non-candidate for surgery .(and from what I have heard, its a blessing )

Now.. I have Fibro, Doctor is leaning towards Lupus, I have Arthritis of the Neck and Spine, well in the neck /its where T1 down to T2 or 3 is - kind of between shoulder blades, I call it the T-bone Zone, I have 4 blown discs in the Lumbar , and L5-S1 was the first to go. I have Severe Neuropathy, I can't distinguish heat/cold . Dr says its from being diabetic, but I honestly think its rooted from my lower back, I had back problems since I was a kid, and I' was diagnois diabetic in 2001.
I remain Diet/exercise only, I also am plague by Panic/anxiety disorder .
I had to quit my job last year because it became so painful to stand even 30 minutes :( I thought it was because I have fallen arches but dispite measures that job and I both took, I still had that problem. I was on my feet roughly 6 hrs a day but with frequent breaks but it still didn't help. Sitting in certain chairs , upsets the back. Its very annoying.

I didn't mean to write a book but, this is what i live with.. its robbed me of the life i've known... its aggrivating wanting to do stuff and if I do something , lean wrong, bend over too much, the weather of course but i love the rain just not the pain, It just makes me feel Like I am a prisoner in my own body.

walk softly upon the earth, feel her heartbeat from within
Listen to the silence for it speaks
Listen to the wind for it talks
Listen to your heart and you will understand.
by Oucloud


  • sandisandi Posts: 6,343
    edited 08/29/2014 - 9:43 AM
    I'm glad that you found us. Even if one surgeon tells you nothing can be done, sometimes it is wise to seek help at the largest hospitals near you, you may get a different answer.
  • Hi & welcome! I know what you mean by feeling like a prisoner in your own body sometimes. Chronic pain is so incredibly hard to live with. It can make all the normal little every-day things seem like a battle. I've come to learn that chronic pain & depression & anxiety can go hand-in-hand. I think it's amazing that you deal with all of this with only diet & exercise. Would you consider medications if they could help...at least with the anxiety? Pain & stress can be so damaging to the rest of our bodies.
    If you've been with the same doctors & specialists for a while it could be worth seeking out some other opinions. Sometimes a new pair of eyes can make all the difference. Sandi's suggestion is a good one. You've suffered so much in your life. It would be wonderful if they could do something to give you much needed relief.

    I hope you enjoy these forums. They've really helped me in many ways. This can be such a lonely journey.
    Osteoarthritis & DDD.
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