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  • so much pain

    hi i am 26. as with many people i can not afford to correct my back let alone get any releif. here lately if i twist just slightly i get sever pain. i mean it makes me cry. it doesnt last long but is coming more frequent. i can't sit nor stand for to long and of course i can't keep a job to long. i can't sleep. i look like a hunch back. i feel so ugly cause of this. i just noticed my boobs are uneven cause of this and i just want to know what can i do to relieve this. i have 2 little ones and it is really affecting what i can do with them and well i can't support them anymore . they are my life and i just want to feel better. they know i am in pain. pls help me.
    hi my name is amy and i am 26. i have been living with this for a long time. like many people i dont have enough to get it fixed. here lately though if i ywist the wrong way i have sever back pain ..i mean more then usually. the pain is really bad and it makes me cry but does not last long. i cant sit to long i cant stand to long. i cant lay on my back to long . well i hardly sleep . i toss and turn cause my back starts to hurt. any suggestions. this is getting worse and worse.

  • #2
    Hi, Amy!
    Thanks for writing so honestly. You make me feel less alone.
    What I do about sleep is wait until I'm so tired I can hardly keep my eyes open before I go to bed. Then, when the pain wakes me up three or four hours later, I get up, trying not to wake my husband, and make coffee and do puzzles or write to kind of take my mind off it until I can go to the bathroom. (I have to let the pain meds wear off or I can't go. --Oh, well....)
    After that, I take my meds, have a little something to eat so the medicine doesn't tear my stomach up, and try to catch an hour or two's nap before I go to work.
    Work's kind of a problem because I work on a factory assembly line, not the easiest job in the world for someone with back trouble, but what're you going to do? I need the insurance. My employers have granted me Family Medical Leave so I can take a day or an hour off when I need to, to see the doctor or if I just flat hurt too much to be able to come in, but it's not paid leave and my husband and I are struggling financially. I try to remember to be glad for what we have, It's hard not to worry sometimes, though.

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    • #3
      Hi Amy,

      have you thought about getting some sleep aids to get some sleep? I can't get to sleep without mine, and still get up often b/c of the pain but it still gets me by most of the time-it is relaxing to all my nerves and muscles.

      No need to be in so much pain.
      35 y/old female from Montreal, Canada
      Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
      Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
      Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
      Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

      Comment


      • #4
        Treid It All Still Pain

        yes i have tried sleep aides but with 2 young ones it didnt work out. i too wait to go to sleep till my eyes are heavy and i can't stay awake any longer. my breasts are now uneven. now does anyone know can this affect your breathing? i have been tested for asthma and all but i wheeze every time i breathe and have a hard time breathing.last night after i wrote this i did feel better knowing that there are people out there who are going threw the same thing. unfortunately my back hurts so much work has been a problem. dont get me wrong i am able to work but if i stay on my feet for more then 2 hours the pain becomes unbearable same if i sit for more then two hours. i am trying to get medical insurance but thats been a job in it's own. i hate going in public because i hunch . if i try to stand striaght for to long my back hurts. and now if i twist the pain it's like well almost as bad as having a child. I hate pills and all i have to take for pain is over the counter. i take the maxium dose and it still doesnt help. i guess i am stuck between a rock and a hard place. I dont want to miss out on my kids life but thats what is happening. I still play and do what i can till i just cant take it any more. One question i get unbearable headaches to. my neck bone is not the way it should be. is that one thing too? all i know is i was diagnosed when i was little and have never been seen for it sicne well cause of the money. live one day at a time is all we can do. thank you all for your replys and support.
        hi my name is amy and i am 26. i have been living with this for a long time. like many people i dont have enough to get it fixed. here lately though if i ywist the wrong way i have sever back pain ..i mean more then usually. the pain is really bad and it makes me cry but does not last long. i cant sit to long i cant stand to long. i cant lay on my back to long . well i hardly sleep . i toss and turn cause my back starts to hurt. any suggestions. this is getting worse and worse.

        Comment


        • #5
          For AMY-help for scoliosis

          Two thoughts:

          The only way to get insurance with a pre-existing condition like ours is to get it through a group plan at work. They usually cannot turn you down. The other idea is to see if the nearest university hospital near you has an adult scoliosis clinic--you might have to attend the regular ortho clinic first for assessment.

          You might be eligible for free or sliding scale payment care.

          Please let us know how you make out with it.
          Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
          Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

          Comment


          • #6
            Amy,

            Have you tried to get state insurance. I know most people dont like to get on it but it will pay for everything if you are approved. I know they go off of income. From the sounds of it you are in a lot of pain and need help really soon. I would try every avenue that you can!
            I hope you find something or a dr that can help you.
            Sarah 25 yrs old- Married with three english bulldogs

            1995-Surgery for scoliosis fused T3-L3.
            2000-Surgery for Rod breaking, relaced rod and took out upper rods.
            March 2005-Surgery for removal of all rods.
            August 2005-Fusion of T10-T11 due to crack in fusion, Rods put back in.
            August 2006- Surgery for fusion from L4 to sacrum.

            Comment


            • #7
              Amy
              My suggestion would also try to get public assistance. So many people use the system that do not need it, I genuinely believe that when someone really needs it they should use the opportunity. I am getting surgery in less than five weeks. I can hardly sleep, I too wait until I am so tired Or I watch tv on the couch until I fall asleep. Unfortunately pain meds have become part of my life but they don't make me sleepy. Good luck.
              Dawn
              surgery 9/06
              Rothman institute

              Comment


              • #8
                Dawn,

                My pain meds dont make me sleepy either they keep me up. So weird. I wonder how many people experience this
                Sarah 25 yrs old- Married with three english bulldogs

                1995-Surgery for scoliosis fused T3-L3.
                2000-Surgery for Rod breaking, relaced rod and took out upper rods.
                March 2005-Surgery for removal of all rods.
                August 2005-Fusion of T10-T11 due to crack in fusion, Rods put back in.
                August 2006- Surgery for fusion from L4 to sacrum.

                Comment


                • #9
                  Stop standing crooked

                  So, getting not a lot of relief from the pain medicine the doctor has precribed, I decide to try physical therapy. It couldn't hurt, right? The physical therapy assistant tells me I'll never get rid of my scoliosis if I don't quit standing crooked. She tells me I'm just not trying.
                  I've got a 40 something degree curve with degenerative disc, severe arthritis, stenosis, bone spurs, what have you, and this woman's telling me to just knock it off!
                  I take a really long, uncomfortable car ride to see friends I hadn't seen since my back had gotten so bad, and when I get there, despite my having told them about my condition, there's not a chair in the house I can sit in, they've blocked off the ground level bathroom for the use of their dogs, and they all insist I'm being a snob because I can't have a few drinks with them because I'm on pain meds. I cut the visit short and get a nasty e-mail when I get back home telling me I was a real drag to be around.
                  Trying to forestall surgery, I go see a chiropractor who, on the first visit hooks me up to a traction machine that hurt so bad I thought I was going to throw up. On the next visit he says he can't help me, that there's just too much wrong and he doesn't think even a neurosurgeon can help.
                  I go to fill a pain medicine prescription and find that, whoopsie! The doctor accidentally substituted my birthday for the prescription date---and he's out of town for the next week.
                  I only have two pairs of pants I can wear comfortably now because I'm fat on steroids and my curve makes my hips smaller than my waist because of how it's twisted, and I'm pretty sure I forgot to throw the tan pants in the washer.
                  But today's my birthday. I think I'm going to put on some music, like maybe, "Twist and Shout" and dance!

                  Comment


                  • #10
                    Happy belated b-day, and hope you had a good one

                    Oh, and screw those people who are rude and don't get it...
                    35 y/old female from Montreal, Canada
                    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                    Comment

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