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  • Burning neck/face pain/ increases with exercise/please help

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    Old 05-12-2008, 06:30 PM   #1
    dredd384
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    Burning neck/face pain/ increases with exercise/please help

    Can anyone tell me if they have had any of these syptoms? I have had burning neck pain with burning in my face as well, it increases with exercise. I finally had a fusion on C5-C6 for a herniated disk. The only relief I got from that was the headache went away. The fusion was done in Jan., they say it has not fused completely yet, but the burning is still as bad as it was before the surgery and if I go out and walk or ride my bike, it gets so bad I can't stand it! I am on topamax 200mg, they have tried facet injections, to no relief. I am about to go crazy!
    They don't seem to give me any answers to what is causing this, they only say maybe spinal cord damage! they say the syptoms are something they have never heard of before with even that, I know I can't be the only person in the world to have these syptoms before, can someone please help me and tell me where to look or what is causing this pain. I am about to lose my mind.
    The only think I get from my pain management doctor is he wants to send me to a couselor, I wouldn't need a couselor if they would stop the pain, and get me to where I could do my activities I have always be able to do.
    This is stressing me out so bad!
    I just want to know if this is every going to end! or if I am going to have to live with this for the rest of my life! I think I will kill myself if I have to end up living with this forever!
    Does anyone have any answers? or have you ever heard of exercise induced burning neck and face pain?
    I can't believe I am the first person to every complain of this before.
    PLEASE someone help me.

     
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    Old 05-13-2008, 11:59 AM   #2
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    Re: Burning neck/face pain/ increases with exercise/please help

    It is very common to continue to have symptoms (and even new ones) for the year following surgery. Some people are lucky and they feel better immediately and go on with their activity. Others - the problems were different and they need lots more time.

    Activity can bring this on. Your fusion will take a very long time to heal and as long as it is not healed you will probably have some symptoms - since you seem to be in the group of people that get these type results. It could even take up to 2 years for you to feel completely well. Also depending on if you had spinal cord compression or severe nerve root compression those nerve become alive, have to repair, etc..

    My advice is to lower your activity, your body is sending you signals that it isn't ready. You might try Neurontin or Lyrica for the burning, I found a great deal of relief from using these type meds. Lots of people complain about symptoms from these meds, but if you start taking them slowly and dose up slowly you might tolerate this.

    Sometimes these surgeries don't fix everything, I am sure they told you this??? They are intended to make sure nothing worse happens. Give it time it will probably resolve.

     
    Old 05-13-2008, 01:18 PM   #3
    dredd384
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    Re: Burning neck/face pain/ increases with exercise/please help

    So you think this isn't going to be something I will have to live with forever? why can't the doctors tell me that? instead of letting me suffer with the thoughts of this black hole of not thinking I am ever going to get better. I am so scared that everyday that this is not going to get better. I wake up and it is still there and it doesn't seem to want to go away! It has been 8 months since the syptoms started and 4 months since the surgery and nothing seems to be any better, just hard to get past that with out seeing any improvement.
    But thanks so much for the words of encouragement and at least hearing that there is a possiblity that I might get better over time.
    I just want my life back. I want to be able to enjoy the activities I use to do without being on fire when I go do them.
    I have never felt this type of burning in my life, it almost consumes my whole life right now.

     
    Old 05-13-2008, 10:23 PM   #4
    erin72
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    Re: Burning neck/face pain/ increases with exercise/please help

    Hi! I completely agree with Neck Patient! Take time to heal!! You don't want to end up having this surgery again and your spinal cord is so slow to heal and forgive. Give your body time to heal well. I had to have a revision surgery a year after my first ACDF at C5/6. I never fused the first time. It's no fun to do it again, trust me!! You will get back to being busy and active, slow down for now and listen to your body. It is very frustrating to feel like you'll never get your life back, I said that phrase more times than I would like to admit!! Take Neck Patients advice, slow down!!

     
    Old 05-14-2008, 05:58 PM   #5
    anwis67
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    Re: Burning neck/face pain/ increases with exercise/please help

    Hi, I totally feel your pain. Until you suffer with this type of burning, you just have no idea. I have figured out a way to describe this burning so that my family has a better understanding of what i'm going through. To me it feels like thousands of fire ants are stinging. I have neuropathy and experience this terrible burning in my face, hands, and feet. When this happens, I use ice packs to cool things down. Thankfully, I don't have the burning all of the time. I recently tried vicks vapor rub on my feet for the burning and it helped. I also take 400mg of lyrica and 75mg of nortriptilyne per day. When I am having the burning episode, darvacet seems to help too. I wish you the best and hope that you will heel in time.

     
    Old 05-14-2008, 06:59 PM   #6
    dredd384
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    Re: Burning neck/face pain/ increases with exercise/please help

    So you guys think I will get better? this won't last forever? Guys you may have saved my life! I have almost thought about committing sucide! i just can't imagine living my life this way forever. To hear someone tell me that I won't have to do this for the rest of my life that there is a light at the end of the tunnel. Something I can't get the doctors to tell me. They just tell me they don't know and hand me another dang pill! no answers is all I get from them and the strange looks and they act like I have some strange complaint and like they have never heard of what I am describing to them before at all.
    So to hear you guys tell me that what I am describing is something you all have felt and that I am not crazy, makes me cry, to know that there is someone else out there that knows what I am going through.
    I just thank you for sharing your stories and any advice and encouragment you can with me. It is so discourageing to get out of bed every day and to feel the same pain everyday and nothing seems to get better. But to hear you guys say that I will get better with time gives me something to live for!
    Thank you! thank you!
    God Bless you!

     
    Old 05-14-2008, 08:19 PM   #7
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    Re: Burning neck/face pain/ increases with exercise/please help

    Hi again, I don't know if this was just your way of talking, but if you are having serious thoughts of harming yourself, please do get help from family, your doctor, or a crisis center!

    We have all felt the pain you are feeling. There are so many people on these boards who have been through pain and depression and slowly did regain their lives back after surgery. No one knows if you will completely heal, not even the doctors. That is why they do not say so much. What we do know is that lots of people go on and lead completely normal lives again and you should have hope that you are going to be one of them - it may take longer than you originally thought. A couple months is not that long from surgery.

    The meds I talked about (Lyrica and Neurontin) give great relief for burning so please speak to your dr. about them. You should not avoid taking medicines that can help. Just like if you had diabetes and had to take insulin to survive, some people need to take other medicines to address their pain issues.

    How you think about these things also contributes to how well you do. Try to relax a bit, think positively, use distraction techniques (call a friend, do a hobby, listen to music). You have a lot of friends here and a great wealth of experiences.

     
    Old 05-15-2008, 05:03 AM   #8
    dredd384
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    Re: Burning neck/face pain/ increases with exercise/please help

    oh it is the most depressing thing I have ever gone through. 5 months out and no relief, I am on 2oo mg of topamax, 900 mg of neurotin, had neck injections two weeks ago, no relief, in my facet joints, which my surgeon said he didn't know why my pain management doctor even tried that, but I am game for anything right now. I just want some relief. Of course now with the drugs, I am getting the tingling in my hands and feet, which drive me nuts when I am trying to sleep. This just isn't something I want to live with everyday and to get them to tell me that I am going to get better is like pulling teeth, they won't tell me that. I just can't stand the idea of not knowing this isn't going to get any better. If I knew this was at least only temporary, I think I could deal with it, but to know this is it! and this would be the rest of my life, I don't think I can cope with this everyday of my life.

     
    Old 06-21-2008, 03:49 PM   #9
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    Re: Burning neck/face pain/ increases with exercise/please help

    Hmmmm I had c 5/6 fused 1-22-08 and have been having a bad burning feelings down my neck to about the middle of my shoulder blades.I am in alot more pain now than I was 1 month post op! I have knots in my muscles that run down my neck across the top of my shoulders and down the right side of my back.i go to pt 2x's a week and they cant seem to get rid of them.I hate how bad they feel!!!

     
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