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    I hate nerve pain!!!!

    I'm 27 years old. I got into a car accident April 2010. As a result, I am a t10 complete para. I've always felt some kind of nerve pain since day one of the accident. However, it seems like it gradually gets worse over time. In the beginning, it was very mild tingling that was tolerable and didn't seem to bother me. Now the pain seems like it has jumped from a 1 to a 10 since my injury!!! Its a constant pain that starts at the level of my injury (lower back) all the way down to my toes. The pain is hard to describe. It's a constant intense burning, tingling sensation!!! Sometimes, I feel the pain more in certain areas such as my butt, my thighs or calves. I hate this feeling! I try to think positive, but during my bad days, the pain just seems like torture. I've brought this up to my doctor. She first prescribed me Neurontin, which didn't do anything for me. She then prescribed me Lyrica, which also seems pointless. I've only been on this medication at a low dose for bout 2 months. We are slowly increasing the dosage to see what works best for me. I'm just waiting for that day til it gets better. At times I feel so drained & exhausted from dealing with it. It seems like my only escape from it is when I'm asleep. I still feel like a rookie when it comes to my injury. I know it will be an on going process. I'm hopeful things will get better. For the mean time, can someone please share their thoughts, knowledge, feelings & experiences with nerve pain?! I would really appreciate it!

    #2
    How much Lyrica are you taking?

    Get up to 300mg to 600mg a day before deciding if the drug is working or not. Don't drag it out.

    Do not expect any drug to eliminate the pain. It will only lessen the pain so that you can somehow get through the day without going completely batty.

    Start Amitriptyline at 25mg at bedtime. It will help the nerve pain.

    All the drugs have side effects so it will be your choice of having more pain or dealing with the side effects. Many people complain about the side effects of the meds. In my case, the pain is much worse than the side effects so I put up with them.

    The pain is not likely going to go away. At your age, this may be “a tough pill to swallow” - I am very sorry, but it won’t go away.

    You are going to have to learn to live with this new uninvited guest, “the pain”, for the next decade or 2. (Maybe by then there will be more effective treatments).

    In the meantime, the 2 of you (I am referring to you and your new uninvited live in guest, “Pain”) will need to COEXIST. You can’t be at war with the Pain or you will wear yourself out. How can you coexist? Who is running the show? You may have to share decision making.

    Get the book, Managing Pain before it Manages You.

    My SCI was 10 years ago and I can tell you that neuro pain has been the focus of every day for these 10 years.
    8 years ago, I was desperate and found a biofeedback expert who worked with chronic pain patients. It was helpful for me. I learned that the emotional response, the fighting, and resistance to the pain was under my cognitive control.
    I was able to clarify the distinction between the pain, on one hand, and my emotional, cognitive response to pain which is where a great deal of the suffering lies. This emotional and cognitive response to the pain is NOT the pain. You can, with a great deal of effort, change the emotional and cognitive aspect. It will be helpful if you can. It is necessary for survival. The biofeedback specialist helped clarify this concept for me.

    I would read many of the pain forum threads. Read all the ones that Dejerine, a CC member, started. Start back 3 years and read through them.. Those threads will be as good as any textbook on the subject matter.

    Comment


      #3
      I get exactly the same as what you've described but probably a lot milder at the moment, since it's fairly soon after my injury I'm expecting it to get a lot worse. I'm on Lyrica 75mg 3x daily, and 25mg of amitriptyline at night. It's hard to tell if it's doing anything though. I find it's worst in the evenings and its hard to get to sleep. A lot of people on here have recommended me oxycodone 'as needed' but I'm yet to talk to my doctor about it so I have no experience with it. I'm trying to get the pain managable at least most of the time so I wouldn't need narcotic drugs every night..

      I feel for you and really hope you find something that works soon.

      Si

      Edit: That book sounds good, thanks for the recommendation arndog
      T11 Asia A after near-fatal bike crash.. Just happy to still be here

      No, I didn't loose my mind... It got scared and ran away!!

      Comment


        #4
        Originally posted by arndog View Post
        You are going to have to learn to live with this new uninvited guest, “the pain”, for the next decade or 2. (Maybe by then there will be more effective treatments).

        In the meantime, the 2 of you (I am referring to you and your new uninvited live in guest, “Pain”) will need to COEXIST. You can’t be at war with the Pain or you will wear yourself out. How can you coexist? Who is running the show? You may have to share decision making.
        Everything arndog said is right on target. But if you only get one thing out of this discussion, ^THIS^ is the one you should take away.

        Living with central pain is exhausting, frustrating, maddening, and isolating. It doesn't get better over time -- in fact, it's likely to get worse -- so the faster you can find ways to help you manage it [manage does not mean eradicate], the better. Distraction is a must -- you'll find that the more you're able to get engrossed in something that consumes your focus, the better off you'll be.

        Take advantage of the good days. And avoid strong negative emotions like molten lava -- they exacerbate the pain, as do changes in the weather. And keep trying combinations of medications to discover if they'll work for you. I've recently switched to taking methadone, gabapentin, and amitriptyline and I'm pretty pleased with the early results. The methadone is working wonders to keep my central pain at a minimum, but it took years and a lot of doctors to get here.

        And bookmark this forum! The info and support you can find here are invaluable.
        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

        Comment


          #5
          Hi,

          I am a T8 complete para and experience similar pain as you. So far (I am about 2 and a half years post injury) the most effective thing for me has been a mix of baclofen, methadone and oxycodone. I recently got prescribed some valium and that worked but is too much with the other things I am taking so will have to work with my doctor what to do. My point is you have a lot of options you can still try, don't give up.

          It sucks, but keep at it. Like I said, try and find a set of meds that make your life tolerable but not so much that you are a zombie. If and when you have an hour, or even 15 minutes of respite... man just stop and enjoy it.

          Comment


            #6
            Arndog, thanks for all the advice! Looks like I have some studying to do. I will make sure to refer to the forum threads. It's nice to know that I'm not alone! I'm taking 600mg of Lyrica for now (300mg 2x a day). I know it's still a lower dose & that it will take a while to feel the meds working...it's been close to a month but I don't feel a difference. In fact, I feel like it's progressively getting worse! I agree w/u that I have to accept the fact that it will be a part of my life. I try to stay positive bout it but during my bad days, it's difficult.
            SuprSi- I hope you find something that works for you as well. Nerve pain is NO FUN! I definitely agree w/ you bout being alive! That I am extremely grateful for!
            thehipcrip- I try to channel my energy and effort towards other things to get my mind off the pain. It's quite a challenge to defer the nerve pain, but I'm working on it.
            t8burst- I also take valium but it's to control my spasms. I don't feel like the valium helps w/ my nerve pain but it could be cause I'm on a low dose. I hate the idea of taking a collection of meds d/t all the side effects. But I guess that's another think I have to live with.
            THANKS FOR ALL THE ADVICE GUYS!!! ^_^

            Comment


              #7
              28darline - I think that 600 mg of Lyrica a day is about the maximum dose for an adult. If it is not helping, add the Elavil 25 mg at night and then consider getting on some kind of opiate for break through pain or even consider taking long acting opiates like T8burst does (methadone (cheap), or oxycontin (expensive)). Let us know how it is going. It takes a lot of trial and error to get some regime that may help to some degree.

              Comment


                #8
                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.

                Comment


                  #9
                  I try to "swim", but when my CP is cranked up the dysthesia makes it excruciating. I never found it to help with my nerve pain but it is great exercise.

                  The closest I've come to any noticeable pain relief is in a warm still pool with a float under my arms, while pretty well drugged (bad combo though), just floating mentally and physically. On a good day the pain will go down to 4-5, and seems not so "angry" or aggressive.

                  Pool exercise is the least painful exercise for me. but not really "swimming" the rotational torque through my lower back sets me off big time, I leaned some exercises in PT that are good and minimally pain inducing.

                  We all respond to different therapies and drug protocols, I hope you continue to find meaningful therapies for pain management.

                  I have for the past month really worked on zazen, old Asian technique of empty mind or no mind or mirror mind. Between that and a more deep and honest "acceptance" of what I am has helped free me in some way I can only describe as I am no longer a "shadow walker" i walk in the sun letting whatever is good come in. In the shadow my SCI polluted my life experience. Sorry the metaphysical rant.

                  peace,

                  ket

                  ket
                  Kindly,

                  The Ketamine Kitty

                  All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                  Next time I die make sure I'm gone,
                  don't leave 'em nothing to work on JT

                  And I ain't nothin but a dream JM

                  Comment


                    #10
                    Originally posted by 28darline View Post
                    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.
                    I've done quite a lot of swimming, while i was at rehab in the hydrotherapy pool (34*C), and since i've got home. The warm hydro pool made a big difference to my nerve pains, but the normal leisure pools don't seem to help a lot. So I guess it's temperature related, maybe a hot tub would help? I still swim a lot to help build up my stamina and upper body strength as well as going to the gym twice a week.

                    Hmmm, I wonder if i could get a hot tub VAT free? Would be awesome
                    T11 Asia A after near-fatal bike crash.. Just happy to still be here

                    No, I didn't loose my mind... It got scared and ran away!!

                    Comment


                      #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!!
                      ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

                      Comment


                        #12
                        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.

                        Comment


                          #13
                          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

                          Comment


                            #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!

                            Comment


                              #15
                              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.

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