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Sammantha

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My back or more like pelvic muscles were hit earlyy on. NOW my lower back in the words of my son, looks like someone took a shovel and scooped it out! Forget the the years of pain or the fact my ribcage feels like it being held up bone on bone....doctors rarely ask about it. That was my first major concern and they forgot and act like its new, do i have to cry everytime i see them for them to understand. I go to my local hospital when my back and legs spasm (only if it happens at a bad time) and they know to shoot me up with motrin, muscle relaxant and some valium. All that allows me to walk out perfectly fine. This happens only after i have used cold/hot and massage therapy to halt the spasticity. I look pregnant because my back is so sunken in and my belly is so loose. My shirts get caught inside this cave of a back and rest upon my ass! Did anyonelse have back atrophy that made their body look funny and hurt, yet you were still able to walk?
 

Ms. Pie

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Not I sweets but just recently I started getting fasciculations in my lower back so I'm sure it will start. I'm surprised they didn't treat it a long time ago! I'm so sorry for your discomfort! How old is your Son?
 

jb63

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Hello,

I had started another thread which is similar. My lower back is atrophied, much like yours. I flopped backwards when sitting on the edge of the bed and fractured some vertebrae. Like doing a back bend. horrible pain. I am wearing a TLSO brace to protect my lower back when I am sitting. It is a hard, snug shell that keeps me straight and feels good.

My doc picked it up in the clinic when I told her I was in excruciating pain. I am waiting for an mri as I have a continence problem since the injury.

I look like budda.
 

momap53

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So sorry Sam. Sounds awful. I'm glad your local hospital knows what to do to get you moving again.
 

notgivnup

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Sam so sorry about your back, so glad you can get some relief though. A brace might help, has doc ever suggested one to you?
 

jb63

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Did anyonelse have back atrophy that made their body look funny and hurt, yet you were still able to walk?
I am unable to walk, but the back went after I stopped walking. You will notice that you start leaning forward, almost hunched over.
 

Toto's Dorothy

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I'm a new quad. I have no muscles in the front just the flab. Can't tell about the back, really don't want to know. I know it must not be too good because when they dress me I hear my daughter say eeeew your back is ...... and she stops when she realizes that she spoke out loud.
 

Sammantha

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My son is 11.. It started out small and now i can place my whole fist in that area. It sounds like some others have had loss of movement first, so i guess i should consider myself lucky. When I fell and came back from my trip my left shoulder blade was all black blue red and cut up, and when everyone saw my back, their first comment was there is a hole in your back!(which is nowhere near my shoulder blade) I am self conscience when i wear a swimsuit, now that is crazy! That should be the least of my cares right? :)
 

Sammantha

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That shell thing is something i have dreamed about.. I would think of a bar type brace with cushion that held u my head all the way down to my back, it would alleviate so much pressure! I weigh 135 and trying to lose weight just so tha can help a little too. I go to UNC april2, we'll see what he says about help...... if your anything like me pain killers are a big no no, lets just say i had to drink that god awful drink you do for colonoscopies because 2 and a half weeks went by, with no movement.... so i have learned not to accept them!
 

jb63

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My son is 11.. It started out small and now i can place my whole fist in that area. It sounds like some others have had loss of movement first, so i guess i should consider myself lucky. When I fell and came back from my trip my left shoulder blade was all black blue red and cut up, and when everyone saw my back, their first comment was there is a hole in your back!(which is nowhere near my shoulder blade) I am self conscience when i wear a swimsuit, now that is crazy! That should be the least of my cares right? :)
Sammantha,

Just because we are all greatful to be breathing and surviving this dreadful disease, by no means do we have to give up our dignity, vanity, and the person we were before we were sticken. You are not crazy to be self conscious. I'll bet there are alot of us out there struggling to to just go on with our lives the best we can and don't want the attention a skeletal leg, bipap machine, even w/c brings. I am on blood thinners and keep hitting my right leg on the mechanics of my w/c covering it with little round bruises. People though I was being abused if I wore a skirt without my braces. I know everyone means well. I don't mean to sound bitter or ungrateful for peoples' good intentions. It's just that I miss being a regular person cause I still have that person inside of me.
 

momap53

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Excellent post jb! I think many of us feel the same way.
 
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