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i,m new here

well i have to admit i'm a little nervous i've been cut off from the world for a little while now save my therapist and she thought reaching out to an online support group might be helpful. Here goes, i'm in pain like it sounds like many of you are. my diagnosis is vague although i am having lumbar spinal fusion on july 15. that is just the beginning of it. i have what is called chronic exertional compartment syndrome which means when i heal from my back surgery i will have to have surgery on my shins. i have a vauge diagnosis of chronic pain syndrome or fibromyalgic like but not quite because when you touch the typical pain spots it doesn't exactly hurt there.so even my pain isn't quite right. there is something very wrong in my knees they really hurt but i haven't even been able to start finding out what that is yet because the doctor said what hurts the most and we have to start with one thing and work our way through.i'm married with 3 teen daughters and they try but NO ONE understands me i have been in the house mostly laying down for over a month now waiting for my surgery which was supposed to be in june but thanks to an insurance screw up is now july-15 my husband is more out of like with me than in love with me i think he thinks something like i could just deal with it even though he knows i can't and my kids are self absorbed teens. my house is messy the paperwork is disorganized and i can't believe i'm telling all of this to strangers and now i'm crying great! well there you have it in a nutshell my life is not feeling very good right now and i don't know if this will even do any good. but i'm trying to reach out for what it's worth. which i feel right now it's not worth very much.sorry to unload such a pity party


  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Hi Bird


    Pain makes everything so much harder to cope with. Teenagers are always self absorbed and husbands often either don't get it or don't know how to solve it. The trouble is that pain removes our ability to ignore their shortcomings. We spend all of our lives looking after them and we just can't come to grips with why they can't be there for us! As for the paperwork ... There's no way you're going to get on top of that one until your head is a little clearer. We all know where your coming from because we've all been there. Many of us are still there on a regular basis.

    Don't feel bad because you can't do anything - you're in a pretty tough place at the moment. You have to trust that it will get better. Once they get the pain managed your life will improve.

    Can I ask why they are doing a lumbar fusion when your diagnosis is vague? Have they done tests to see whether the area to be fused is actually generating the pain? I ask this because its a big surgery and it doesn't always solve the pain issues. Also - have you a pain management team that's looking at a medication regime that will assist with pain management?

    Also - seeing as you are scheduled for surgery this month - why not join our "July surgery buddies" group. There are quite a few of us supporting each other through our surgeries. It's really helpful.

    Have a read through the site. You will find heaps of handy hints on dealing with pain and also on coping with post surgery limitations eg having a grabber/reacher tool so you can pick things up without having to bend. I am heading for my third surgery this month and the people on this forum have been very supportive throughout each one. The info on this site has also been invaluable and certainly helped me figure out how to better cope with the day to day limitations of my condition.

  • thanks for being so helpful i realize sometimes i make more sense in my head than on the page i have an excellent pain management doctor i take a pain medication regimen and that makes me able to cope during parts of my day. i have disc degeneration at L4-L5 and L5-S1 and i have had many different treatments, physical therapy, epidurals, radio frequency ablation and others after a disco-gram it was determined that surgery was best when i say vague pain i am talking about the million of other random joint and muscle pains that i have that are not rheumatoid arthritis or lupus or anything testable so far!
  • That makes more sense! You may find that many of those other pain points are actually caused by the problems in your spine.

    What surgery are you having? I had a TLIF at L4/5 in November 2011 followed by an ALIF on L5/S1 with a revision at L4/5 in October 2012. I'm having a spinal chord stimulator (SCS) implanted via laminectomy at T8/9 on the 24th of this month to help with pain management.
  • sorry i can't remember what it's called besides disc fusion i have a hard time remembering and then i never write anything down i feel so bad i understand what he is doing for the surgery it's just the big words i get lost on
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