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3 years post surgery, every day is a struggle...

colbyJccolbyJ Posts: 7
edited 06/11/2012 - 8:40 AM in Depression and Coping
My name is Colby and I've joined seeking support, and answers
in hope of just making my life manageable. My family is constantly annoyed
Or frustrated with me even after hearing countless doctors say my injury is only going to get worse. For two years I had epidurals which would give me steroids psychosis, migraines, and severe depression. I had to move in with my mother at 35 after living on own since 17. Lost everything and am just now working hoping I can have some life again. I feel like no one could imagine how bad the pain is unless they had back surgery, I think it is akin to the kind of pain people who are dying experience. I question why even with pain management why I must suffer daily. How can I get my family to understand that even putting shoes on hurts and every task exhausts me. If I had cancer, they would be kind. They act like I'm bad for taking meds. Feeling sorry for myself... not very attractive sorry.


  • I'm sorry to hear you've been through so much pain and your family not understanding. I had my PM Dr. talk with my husband but still I know it's a struggle. I wouldn't know where to go for support other than here. Take care. Charry

    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Welcome to Spine-Health, I hope you can gain some help from someone here.

    It can be very difficult for those around us to understand. Visibly a lot of us look completely normal.
    Have you taken your mother in to your appts? That can be a big help. To hear it from someone other than you.

    Shoes? slip ons.

    Pain management almost never removes the pain. It's goal is to get the pain to a level that lets you get through you day fairly comfortably. We all hope for the pain to be gone. Few of us get that.

    My shrink has told me the goal is to get me to be comfortable in the "new me". Not to make me feel so well that I continually hurt myself by overdoing it.

    I'm also not sure I understand about the epidurals?
    The norm, as far as I know, is two shots, if they aren't effective stop giving them. When they do work no more than 3 a year. I know some doctors do more, but those are the numbers my doctor told me. the shots did not work for me at all, the second one sent me to the ER. Never again.
  • You have found a community that understands your feelings. Could you provide a couple more details about your condition? I wondered if you had pursued other opinions? Whether a rescue surgery might be possible? Has anyone recommended a spinal cord stimulator trial?

    The good news is that researchers are discovering new things all the time that may aid people like yourself and others here on the board. They are making strides in better understanding chronic pain. There are many new surgical procedures in clinical trials.

    I hope you will find support here on the board.

    xx Gwennie
  • As I sit here looking for apartments that will take me with my bad credit as a result of not working for 2 years - and making sure it is first floor or has an elevator I was feeling stressed and wronged and then I had to check my gmail and saw the kind words of others...

    I guess feeling like someone can understand is what I need. This injury is so isolating and I think people secretly thing I want the pills but then I say, they have been to 5 specialists with me and seen my 3++ shots a year and steroid psychosis after about 5 medrol does packs that first year... I trusted a bad doctor. Thats another story and no I didnt sue because every doctor I went to asked if I was in litigation and I just wanted to get rid of the pain.

    I had accepted it.. but I dont know if this happens to you guys but the leg pain and weakness came back over about 6 weeks and I was told my only hope to lower pain meds was RFA once a year and after having that I am terrorized by the thought. So I had a reality check like when you wake from a bad dream.

    But Im working and getting out of my moms house...

    thanks to all...colby
  • I'm sorry to hear you are in such pain and have very little support from friends and family.

    When I first found Spine Health one of the first things I read was the "Letter to Normals". It helped me so much to understand my son's pain. He is 38, so not much older than you. I try to reread it on occasion so I NEVER forget what it feels like to live in pain every day.

    His wife never did understand even though I sent it to her. They are now divorced.

    Please print this off and give it to your Mom. Maybe it will help her understand your pain.


    Peggy x
  • Hi :)

    I feel your pain... literally. I know you dont want to read all about MY problems and MY pain because this post is about YOU. I totally get you. I am 30 years old, and had to move in with my mother and father inlaw. My mother in law cares for me day and night while my husband and father in law work. My family is cross country. I moved away when i "thought" I was better. My pain then came back and never went away. Lucky me lol. I lost a marriage and 2 homes due to this condition of mine. I am currently engaged (though I call him my husband) The only thing good out of my condition was meeting my fiance, and that is another story. I cry daily and get down on myself all the time. My family says "cant wait til your better so we can get you off these drugs" or my mom says "are you still on those drugs or can you try lowering them" Dont thy understand that I dont WANT to take them, but have to? And few people ever get cured of chronic pain, so even with a spinal cord stimulator I might still be on meds? I can understand where you are and how you feel...especially with having to move back in to mom's and have loss of privacy and space. Boy can I relate. I love my inlaws and they are so wonderful and honestly really do try to understand. But people cant fully understand unless they have been in our shoes or felt our pain, which I would never wish on anyone. What hashelped them try to understand me is they take me to my doc's appt's andlisten to what the docs say. They are very involved in my care, so truly do know I am in pain and am trying the best I can. Sometimes I do think they feel I am too sensitive with certain things, but they cant possibly understand how much is on my shoulders and how its the smallest things that pass through the cracks and bother you, becuase you are so good are hiding the big things already.

    I'm also going though some hard times and decisions b/c I'm probably never going to be able to have children b/c of my condition and treatments for it. That brings me to tears so often. Then I go down the well of saying how I dont even have the life of a normal 30 year old. But how can I even say that? i dontknow what a normal 30 yr old life is... ive been in chronicpain for 4 years now. I think this is now just me, and like somone said earlier I have to learn how to live in the new me. Have you tried to tell your parents what would make you feel better? Like alone time ect? That really helps me. Try sending them to spine health, this way they see how you are not alone and your condition is real. Try talking to your pain doc about alternitives, like spinal cord stiumlation and other meds like neurontin. Hope you can get a smile today and if I was there I would hug you and we could cry together! then laugh :). Please smile...because I promise I will. :D
    >:D< >:D< >:D< :H
  • I just want to welcome you here and let you know that we totally understand what you're going through and esp how you feel. I also came to the realization that no matter what or how much meds you take, it will not take the pain away. The only thing it does is help keep it manageable. Thank goodness my family is very understanding regarding this and they'd rather me take painkillers than to suffer agonizing pain, and I feel bad for those who are misunderstood or held under suspicion. All I can say is keep you chin up, you take your meds in order to function just like a diabetic takes insulin or an asthmatic needs their rescue inhaler- don't let the stigma hold you down. I also applaud you for making the effort to go back out on your own and finding work, this is not easy in your condition and I wish you the very best. If you ever need to vent or just talk, we're always here and you don't have to be all alone in this anymore. Take care
  • Thanks to all of you, and Danianne I feel awful for you. Reading your tag it seems you are worse off then I am but maybe you can improve by getting triggers, epidurals, and radio frequency ablation. When I posted, my leg pain &ad come back with a vengeance. I find the drugs work on the back but the leg pain is intolerable as u can't twhink or relax at all with electricity running down ur legs Iget terrified for shots due to pain and risk and. Side effects. But I got courage from fear of loosing job after missing work in. Agony. The shots worked. I find I can function when legs are ok. I had RFA too last year and it helped but it hurts a lot but maybe it would help you. Oh I've moved out after years with my mom who lives me but was always disparaging and I think cruel because she was afraid id die. Now I have peace and hope I can manage on my own. Hang in there as y have love and that is precious, I'm lonely and. Fear dating because people just don't want to be around those in pain, I think it is instinctive. If I can get better enough maybe so can you but I pay a price to enjoy months not years of some release. Good luck best wishes to all here.
  • Good to hear you got your own place and the shots have helped your leg pain. I'm going for my ESI and possible facet joint injections Wednesday and hope to have some relief at that time. Thanks for the update. It's always nice to hear a good report. Wishing you continued success. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • we all here you and understand more than you will know! i agree with you cancer analogie ,i think because when you say :i have a bad back: some may think that ts a weak excuse for you to be lazy ..
    all i say to people is walk a day in my shoes
  • Man you took the words right out of my mouth. If we used diferent wording and said we had cancer, then it would be more understud. But of course when you mention you suffer from back pain and leg pain or anything to do with the spine, they assume its that normal back pain you get when you over work which none of us ever had a problem dealing with. Dont feel bad man, my family never understud either, they still dont. I had to put my family out of my life just to avoid the negativity just so i can deal with my own batle of fighting this nerve pain from failed back surgery and nerve damage.Some people will never realise the fighting day in day out we have to go through to survive and not give up.Just for instance, buddy of mine called me the other day,asked if i wanted to go golfing. I said i would love to but i cant you idiot. He still asked why?. As if he was not aware why i had already 3rd surgery trying to resolve this nerve pain and there is no end to it in sight. I have suffered for about 18 years before i had surgery, then more so after surgery because of the damaged nerve issue after adr operation. So just so you know you are not alone colby j and this is the only place i run across people that get the full picture and understand what this is all about. There are a lot of suportive people here that i found.Things get a litle moody once in a while on forums and also in chat but thats to be expected i guess especialy when everyone dealing with there personal issues along with there dailey pain. I wish you the best of luck and stay strong and hope you find the best solution for ya, even if its another surgery to resolve that disc issue and scar tissue. Sincerely Yours; Alexhurting
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • because yet again i feel the same as the guy that posted this in the first place .its extremely hard just to get through the day especially when you don't sleep to well and like everyone else cursed with this back problem i feel like i am not being treated as well as i could be by certain people ..they just cant understand how disabling this condition is and how much it effects every aspect of your life .i feel like life is just slipping by as i sit here in my recliner .day after day is so blood y depressing and when you do muster us some energy to do something you end up regretting it as the pain bits you even harder .i would never have thought that BACK pain could do so much damage to your life its already cost me my job and first wife and even tho she is very good kath my second wife ..i can tell that she get fed up with the situation ..not being able to go for a meal or to the canaima you know all the normal stuff that we should be doing at our age ..only people with our problem genuinely understand how we feel even the doctors can't understand properly how this curs effects us ..it only seems to be the back/leg that last so long ..there are many parts of the body that can be operated on and after a few months many people are back to there normal selves ..my mum had an aortic aneurysm fixed a year ago and now she she is back to shopping /gardening etc and she is nearly 70 .yet us with our knackered backs are constantly in pain ..so why dose the back never stop hurting ???
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