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Thread: I hate nerve pain!!!!

  1. #11
    I can relate to the warm water. I will soak my hands in warm water at night sometimes when the pain is really bad. It doesn't last long but it gives me a few minutes of pain tolerance. I am taking 300mg of Lyrica twice a day with percocet for breakthrough pain but I can only take it 3 times per day. Plus Valteran (NSAID) twice per day. Frankly I haven't seen any change and my MD has said that if at my next visit (Next Monday) i don't get some change then he was going to take me off the Lyrica and try Topomax so maybe that will help. I think I am also going to mention the Amitriptyline to see if this is a viable option. Seems like it takes a mix of many meds to keep everyone at a tolerable level. I am 8 months post injury so pretty early on for me but I have noticed a change....pain has been worse since it's become colder which has made things very uncomfortable. I have noticed that it is much worse at night. good luck finding the right mix for you!!

  2. #12
    Quote Originally Posted by 28darline View Post
    I will definitely bring up those meds to my MD to see if it is something that could work for me. As much as I hate adding more meds to the array that I'm taking now, I'm kinda desperate to try what will work. Like you said trial & error.

    Question??? Does anyone here swim?
    I noticed when I was doing water therapy in the pool, my nerve pain would decrease. Now that I think bout it, that was the only time I felt relief from my nerve pain. I'm not sure if there's a correlation there or if it was just me.
    Yoga too.
    Any form of moving helps me most days.
    I'm old school so don't take drugs as, well, they just weren't around.

    Also cigarettes increase pain (I hear), a glass of red wine decreases it. menstrual cycle will throw you into a tizzy as well.

    Mine has increased a I've aged but mostly I am more sedentary than when I was first hurt. I've started 5mg of valium for those evenings @ 5-6 years now I think.

    knowing you're not alone helps somewhat.
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

  3. #13
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    I weaned off my mix again. I won't ever go back on Cymbalta. After being on it since early 2003, I think it started magnifying the burning. I took Ultram ER 200mg with it too and I quit that too. I also quit the Topamax which was a really low dose.

    I have been walking some distance and I think the walking is making it worse. But I have not been able to walk that kind of distance ever so I will walk anyway through the pain.

    The exercise has helped me lose weight and feel better mentally. But here I am not able to sleep because the invisible elves have taken Brillo pads to scrub and remove all the skin.... then poured the usual rubbing alcohol on the wounds. Then other elves have their ice picks and are randomly stabbing me. My only fear is that it has now moved up above my knees. I have never had central pain above the knees, the molten lava has always been below. I guess it has slowly been climbing over time or maybe I'm just crazy.

    With the walking I have been doing, I should have some usual joint pain but I don't feel that anymore. Has the nueropathic pain got so intense that I can't separate the types of pain anymore or has my tolerance level just upped itself to where I can't feel the somatic pain?

    There is no way I could get in water when its like this although pool exercise has always been the best for me.

    I also notice that it doesn't matter how warm my legs are at night, they shiver...if that makes sense. My upper body is not cold but my legs shiver like my teeth would chatter. How do you cover something up when you can't stand the touch of the covers?

    It is indeed exhausting. I sleep but I'm never really rested. I don't think I have gone mad yet in the sense of rabid dog but I think it could be possible if it gets worse. I am getting to the point I don't ever remember not having it. What would it feel like if I didn't have it? Could I read and remember what I read? Could I watch a movie and remember the plot? Could I tell jokes and remember the punch lines?

    I have an appointment with all new doctors Friday but I'm not expecting a whole lot of relief.

    It's late and I just wish for some relief. I want to be able to sleep. I want my focus. I want my purpose. I want my joy and my happiness. I want my job back. I want to be un-consumed for just one day.

    Tomorrow is another day.....
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  4. #14
    bollefen- Thanks for your sharing your experience! I have tried floating in the pool before I learned how to swim & it is extremely relaxing. I will also take your advice on zazen. I am definitely looking forward to it. Thank you again!

    SuprSi- That's awesome that you enjoy swimming !Swimming is an outstanding way to stay in shape. I found that swimming was an effective workout when I was training for my marathon. Like you said it's a great form of cardio, helps build stamina & gain strength. I haven't had a chance to swim in other pools aside from therapy so I won't know the difference. I was thinking of taking warm baths to see if that will help any. Thanks for your input!

  5. #15
    Quote Originally Posted by darkeyed_daisy View Post
    I have not been able to walk that kind of distance ever so I will walk anyway through the pain.

    But here I am not able to sleep because the invisible elves have taken Brillo pads to scrub and remove all the skin.... then poured the usual rubbing alcohol on the wounds. Then other elves have their ice picks and are randomly stabbing me. My only fear is that it has now moved up above my knees. I have never had central pain above the knees, the molten lava has always been below. I guess it has slowly been climbing over time or maybe I'm just crazy.

    With the walking I have been doing, I should have some usual joint pain but I don't feel that anymore. Has the nueropathic pain got so intense that I can't separate the types of pain anymore or has my tolerance level just upped itself to where I can't feel the somatic pain?


    It is indeed exhausting. I sleep but I'm never really rested. I don't think I have gone mad yet in the sense of rabid dog but I think it could be possible if it gets worse. I am getting to the point I don't ever remember not having it. What would it feel like if I didn't have it? Could I read and remember what I read? Could I watch a movie and remember the plot? Could I tell jokes and remember the punch lines?

    It's late and I just wish for some relief. I want to be able to sleep. I want my focus. I want my purpose. I want my joy and my happiness. I want my job back. I want to be un-consumed for just one day.

    Tomorrow is another day.....
    Darkeyed Daisy - what a great post with great descriptions of what life is like with this problem. These quotes really hit home for me. Thanks for putting the madness of it all in words.

    It helps to read that someone else is trying to live through this craziness.

  6. #16
    Quote Originally Posted by darkeyed_daisy View Post
    My upper body is not cold but my legs shiver like my teeth would chatter. How do you cover something up when you can't stand the touch of the covers?
    YAY, a problem with pain I can actually solve!

    When that something that can't stand the covers touching it is your lower legs and feet, the answer is to use a foot tent.


    Also known as toe tents, this rather simple metal frame fits between the mattress and box springs. Drape the sheet and blanket[s] over it, and it suspends them above your legs and feet. Voila -- pain-free warmth, especially if you preheat the air in that tented area by laying a heating pad on low down there or blowing some hot air in with a blow dryer before you get in bed.

    The foot tent in the photo is just one of the many models sold on Amazon.com. Prices vary anywhere from about $15 to $115. If you don't like any of those, Google 'foot tent', 'toe tent', or 'blanket support'.

    I'm hoping that being able to get your legs and feet warmed up will help keep the brillo pad-wielding elves at bay, or at least keep them from doing their worst so you can get some rest. I just wish I could take care of all of your pain problems as easily.

    Have you decided to go totally medication free or are you interested in seeing if something else [amitriptyline? gabapentin? methadone?] will help?
    Last edited by thehipcrip; 01-27-2012 at 02:09 AM. Reason: add meds question
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  7. #17
    I am so sorry you are experiencing such bad nerve pain- and I, like all of the rest, agree, it doesn't get better with time. I am 6 1/2 years post injury and the neuropathy pain is horrible, esp at night. I feel like my legs, butt and feet are on fire, yet I cannot feel them because I have no sensory feeling at all in those areas. I also find that when I am weak mentally, I cannot handle it. Being strong in my mind is as important as physically when dealing with nerve pain. Keeping my mind busy is important, and sometimes the toughest thing to do when I hurt so badly. And trying to explain it to others who do not suffer with this is crazy. Finding the words to describe it to someone who doesn't understand is, well, easily frustrating. I am actually the only one awake now in my house due to the pain and neuropathy and I so wish I could lay down and sleep... pain free. I wish we all could sleep and live pain free. I know this site will help you- there are so many wonderful and nice people on here! It has been a big help to me for sure!

  8. #18
    The wonderful pain cocktail......and not having a clue which ones to try first. I've been playing this game now for several years. It's scary when you finally realize it will never go away. I don't even remember pain free.........

    The pain takes over your life. I never know if I will get no sleep, or get to the point from lack of sleep, where I can't stay awake! There is no such thing as getting any good rest anymore. I'm always tired, never want to go anywhere, and don't even eat right anymore.

    Some lucky few are able to get a little control...... but I'm not one of them. I hope you are.........

  9. #19
    Senior Member Geoffrey's Avatar
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    28darline
    Sorry to hear that you have joined the nerve pain club. It really sucks having a SCI but then to have the nerve pain added on just sucks big time.
    I am a T5 complete 2005. My pain started a couple of months after leaving the hospital and being away from the real pain pills. I ended up taking 3600 mg of Neurontin (Gabapentin) a day when I got into the “Calgary Pain Clinic”. Got off the Gabapentin and replaced it with 375 mg of Topomax and 25 mg of Amitriptyline at bedtime. The pain level is less than it used to be but it is still there.

    I do not get as many sharp stabbing pain occurrences as I used to get. I used to get them in four places in my back and two in my front chest area and they felt like a nail being pushed in and out for five minutes. The only thing I could do was meditate and deal with the pain that way.

    What will happen with you as it has I think with all of us is your threshold for pain tolerance with increase tremendously and you will learn to coexist with it.

    Stay away from the hard drugs, listen to arndog and take the levels up to a point and then if they don’t seem to work get the doctor to try something else.

    Get yourself into an exercise program at a weight training facility. You will be amazed how much better you will be able to deal with the pain levels once you start working out and getting in shape. You have the advantage of having some “core” muscles, work them. The more you take care of what you do have to work with the better off you will be and the better you will handle the pain levels.

    The pain will not go away. You have to decide how you are going to deal with it. Just remember that putting more shit into your body is the last resort but sometimes you just have to do it.
    Good Luck.

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