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Horrific, Terrible, Want to Chop rest of my leg off PAIN
I was by a drunk driver on a motorcycle doing 100mph plus according to the police. Basically broke everything from hips down. 4 mo. in hosp. 12 surgeries 42 units of blood. ... [More]
My problem is since day one I have had the same horrific nerve pain in my now amputated leg. I electively chose to have it amputated to see if it would take the pain away. I no longer have 24/7 pain but enough to destroy my life. If I didn't have my children, I probably could not live thru it any longer. I had totally natural childbirth with my 1st two so I'm not afraid of pain...except this. It feels like I am being stabbed over and over again with an ice pick. Like it is an exposed nerve and someone is flicking it. Have tried everything under the sun: tens unit, Neurontin, antisiezure meds, accupuncture, even went to UCLA med center to see if something surgically could be done. Tried several different kinds of nerve blocks until my back was black and blue and they wouldn't do them any longer. Of course tried every pain med there is. MS Contin worked for a long time (without feeling sleepy, zombieish, or drugged up) but of course your body finally becomes immune to it.Currently on Opana and Xanax. Still having several bouts of breakthru.I DO NOT want to take meds the rest of my life. I would like permanent relief so I can live my life with my adorable children. It's hard to have a normal sleep schedule when you never know when pain will hit. There are triggers: weather, stress, overwork. Or it could be nothing at all. I will not take anything that makes me feel like a zombie (Fentnyl-stopped taking). All I want is pain relief. Is that so much to ask for..... to live life pain free. I pray, I research, I try different pain clinics, neurologists. anesthesiologists. What's left? There has to be something. I want to have hope...someone has to have the answer to this horrific, unbearable pain that destroys my life. Please, if anyone has had any success, please contact me. My pain is burning sharp, in the back of my stump towards the lower part, Like I am being stabbed again and again. Sometimes it is constant, sometimes a few seconds (15-45) apart. But always the same horrible pain. To electively have my leg amputated (it was paralyzed prior to that) took much soul searching. I am still looking for that answer.......please write
My problem is since day one I have had the same horrific nerve pain in my now amputated leg. I electively chose to have it amputated to see if it would take the pain away. I no longer have 24/7 pain but enough to destroy my life. If I didn't have my children, I probably could not live thru it any longer. I had totally natural childbirth with my 1st two so I'm not afraid of pain...except this. It feels like I am being stabbed over and over again with an ice pick. Like it is an exposed nerve and someone is flicking it. Have tried everything under the sun: tens unit, Neurontin, antisiezure meds, accupuncture, even went to UCLA med center to see if something surgically could be done. Tried several different kinds of nerve blocks until my back was black and blue and they wouldn't do them any longer. Of course tried every pain med there is. MS Contin worked for a long time (without feeling sleepy, zombieish, or drugged up) but of course your body finally becomes immune to it.Currently on Opana and Xanax. Still having several bouts of breakthru.I DO NOT want to take meds the rest of my life. I would like permanent relief so I can live my life with my adorable children. It's hard to have a normal sleep schedule when you never know when pain will hit. There are triggers: weather, stress, overwork. Or it could be nothing at all. I will not take anything that makes me feel like a zombie (Fentnyl-stopped taking). All I want is pain relief. Is that so much to ask for..... to live life pain free. I pray, I research, I try different pain clinics, neurologists. anesthesiologists. What's left? There has to be something. I want to have hope...someone has to have the answer to this horrific, unbearable pain that destroys my life. Please, if anyone has had any success, please contact me. My pain is burning sharp, in the back of my stump towards the lower part, Like I am being stabbed again and again. Sometimes it is constant, sometimes a few seconds (15-45) apart. But always the same horrible pain. To electively have my leg amputated (it was paralyzed prior to that) took much soul searching. I am still looking for that answer.......please write
Hello Reheadedlady,
Welcome to our Pain Management Forum. I am so very sorry to hear about your horrific MVA and the accompanying complications. My little sports car was struck by a loaded dump truck....I spent the better part of six months in the hospital, 24 surgical procedures and went through much of what you describe. Thankfully I still have all my limbs but I too live with constant chronic pain .... sometime with pain that is so intense it can drive one mad! My heart goes out to you!
Recovery isn't just treating the body....it's treating the whole person. You've made some choices (no Big Dog meds) that may make your life more difficult...but it's what you've chosen and we all have that right. I am assuming some of your pain is phantom pain?
To my knowledge there are no magic cures or miracle drugs or treatments. All any of us want is what you want, to be pain free....for most of us that will never happen. When pain becomes chronic we learn to live with and treat the pain. How we do this is a very individual choice. Initially I was in denial....searching for that magic, that cure and attempting to continue my life where I left off when the MVA occurred. Anger and denial kept me going for a number of years.
What I didn't understand was that I was grieving... going through the stages of grief as identified by Dr. Elisabeth Kubler-Ross in 1969. Only I got caught in and flipped between the anger and denial stage and lingered there for years. Forgive me for assuming that you may be where I have been. ....and where at times I return.
It sounds like you have gone all the right routes, seen all the right physicians and even taken some very dramatic steps to ease your pain. It's doubtful I have any useful medical suggestions for you. If it helps we do understand much of what you are experiencing. We can relate....and I hope you will take what we are offering...support.
Chronic pain can destroy our lives... if we let it. Granted the pain you describe (and I and others experience) is serious life changing pain. Learning how to accept the cards that life has dealt us is key in healing and recovering from a traumatic injury, illness and horrific chronic pain. If this is as good as it gets then learning how best to live with it can be beneficial. If you are not seeing a very good Pain Management Therapist...one that you have a great connection with please do so.
I can't get my pre-MVA self back...she is gone forever....but in her place is a unique and wiser woman. If you look you'll see the same in you. Please don't think I am trying to minimize your pain and the challenges it has brought into your life. I am not. I had a plan to end my life once my last child was out of the home. Gratefully months before that plan could materialize I found a wonder PCP that provided me with pain management and guidance. She helped me realize that there are no cures for my chronic pain...no magic. I still have hope that someday medical science will have better offers. But for now learning how to deal with it saved my life. If there are no medical answers for you I wish you the same as I have found.
I agree that if there are nerves to "kill" that may be a choice for you. If that were possible I would hope that it has already been offered for you...especially long before you had elective amputation.
I hope you will be active in our community and take the support we offer. This community has been a wonderful source for so many of us. I'll look forward to hearing from you and your updates.
My Best,
~Tuck
Welcome to our Pain Management Forum. I am so very sorry to hear about your horrific MVA and the accompanying complications. My little sports car was struck by a loaded dump truck....I spent the better part of six months in the hospital, 24 surgical procedures and went through much of what you describe. Thankfully I still have all my limbs but I too live with constant chronic pain .... sometime with pain that is so intense it can drive one mad! My heart goes out to you!
Recovery isn't just treating the body....it's treating the whole person. You've made some choices (no Big Dog meds) that may make your life more difficult...but it's what you've chosen and we all have that right. I am assuming some of your pain is phantom pain?
To my knowledge there are no magic cures or miracle drugs or treatments. All any of us want is what you want, to be pain free....for most of us that will never happen. When pain becomes chronic we learn to live with and treat the pain. How we do this is a very individual choice. Initially I was in denial....searching for that magic, that cure and attempting to continue my life where I left off when the MVA occurred. Anger and denial kept me going for a number of years.
What I didn't understand was that I was grieving... going through the stages of grief as identified by Dr. Elisabeth Kubler-Ross in 1969. Only I got caught in and flipped between the anger and denial stage and lingered there for years. Forgive me for assuming that you may be where I have been. ....and where at times I return.
It sounds like you have gone all the right routes, seen all the right physicians and even taken some very dramatic steps to ease your pain. It's doubtful I have any useful medical suggestions for you. If it helps we do understand much of what you are experiencing. We can relate....and I hope you will take what we are offering...support.
Chronic pain can destroy our lives... if we let it. Granted the pain you describe (and I and others experience) is serious life changing pain. Learning how to accept the cards that life has dealt us is key in healing and recovering from a traumatic injury, illness and horrific chronic pain. If this is as good as it gets then learning how best to live with it can be beneficial. If you are not seeing a very good Pain Management Therapist...one that you have a great connection with please do so.
I can't get my pre-MVA self back...she is gone forever....but in her place is a unique and wiser woman. If you look you'll see the same in you. Please don't think I am trying to minimize your pain and the challenges it has brought into your life. I am not. I had a plan to end my life once my last child was out of the home. Gratefully months before that plan could materialize I found a wonder PCP that provided me with pain management and guidance. She helped me realize that there are no cures for my chronic pain...no magic. I still have hope that someday medical science will have better offers. But for now learning how to deal with it saved my life. If there are no medical answers for you I wish you the same as I have found.
I agree that if there are nerves to "kill" that may be a choice for you. If that were possible I would hope that it has already been offered for you...especially long before you had elective amputation.
I hope you will be active in our community and take the support we offer. This community has been a wonderful source for so many of us. I'll look forward to hearing from you and your updates.
My Best,
~Tuck
one other question can they not kill the nerve? I know for me they wont because I have the whole darn thing..but I would maybe ask about that being an option..I myself told the doc I could drag the darn thing just stop the pain
first let me say I understand..I have had nerve pain for 11 yrs now it is your own private hell..
there was a story I heard one time about a man who had nerve pain it started in his back and went down his leg after going to doctor after doctor nothing could be found so in a desperate attempt to get help he stabbed himself where it was so they would have to fix it..I thought boy I understand that..
I knew a lady who had her leg removed but had phantom leg pain(nerve) she always would rub it even though it wasnt there..
I wish I had wonderful answers for you I wish I had some I just want you to know I am here and understand, if you dont have nerve pain you just dont know..you spend all your energy tryiing to figure out how to get out of it..
what meds are you taking? I take Gabitril for nerve pain along with a lot of other things..the gabitril helped at first but not as much now..but It might help others more..
feel free to pm me any time if you need to talk.. my prayers are with you
there was a story I heard one time about a man who had nerve pain it started in his back and went down his leg after going to doctor after doctor nothing could be found so in a desperate attempt to get help he stabbed himself where it was so they would have to fix it..I thought boy I understand that..
I knew a lady who had her leg removed but had phantom leg pain(nerve) she always would rub it even though it wasnt there..
I wish I had wonderful answers for you I wish I had some I just want you to know I am here and understand, if you dont have nerve pain you just dont know..you spend all your energy tryiing to figure out how to get out of it..
what meds are you taking? I take Gabitril for nerve pain along with a lot of other things..the gabitril helped at first but not as much now..but It might help others more..
feel free to pm me any time if you need to talk.. my prayers are with you
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