Announcement

Collapse
No announcement yet.

So many pain questions

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    So many pain questions

    I've read about pain here so often and I've decided to ask a bunch of my own questions. My nerve pain is extremely debilitating and it clearly seems to be getting worse. I'm now on 900mg of gabapentin 3x a day but it seems to do nothing. Here's my huge list of questions and feel free to chime in on one or all


    1. Can anyone relate to their nerve pain being worse in the morning? It keeps me from playing rugby and finding a job. I feel like I'm being dipped in acid from the chest down. Pain seriously runs my life .

    2. I'm a c6 quad but my nerve pain is worse in my core. It makes it difficult to push my chair sometimes. Activity makes it worse. I never hear anyone talk about their core. Can anyone relate?

    3. Has anyone ever been on a bunch of gabapentin and switched to something that actually worked?

    4. Is it reallly worth it to find a pain doc? Doesn't my regular doctor know what's out there?

    5. Sometimes my nerve pain comes along with a tightness. I feel like I'm wearing a metal corset. Is this a form of nerve pain or am I feeling actual tightness in an area I can't feel?
    Www.rachellefriedman.com

    Follow me on Facebook at
    www.facebook.com/rachelleandchris

    Follow me on twitter at
    www.twitter.com/followrachelle

    Www.wheelstrong.com

    sigpic

    #2
    1. 1. my pain is worse in a morning, when transfer me from bed to wheelchair, then it get little better but after couple hours bit increase.

    2. Yes, i describe it like very tight jeans or leader pants.

    Comment


      #3
      I say go to a Pain Doc as your internist is not specialized in this area.

      I will say my pain is worse in the morning than any other time. I feel my best later in the evening as my brain activity slows down.

      The tightness I have as well around my core. Some call it the "MS HUG" and it is due to nerve damage and alot of times all different kinds of factors can set it off.

      Comment


        #4
        everything you describe ive got
        pain is worst in d morning
        feels as if my chest is in a restricting tube
        legs on fire
        but d love and support of my wife and kids keep me moving on............

        Comment


          #5
          I think a knowledgeable pain doc is worth their weight in gold. I also have the constricting feeling sometimes, almost like I am wearing a corset that is far too tight. I have been through a huge list of pain pills including tramadol, morphene, and now oxycontin. They all work to some extent, but I hate the fuzzy headed feeling that I have when taking them, so I often opt for pain to have clarity. It is a devils bargain of sorts.

          Comment


            #6
            Originally posted by ECUrach85 View Post
            5. Sometimes my nerve pain comes along with a tightness. I feel like I'm wearing a metal corset. Is this a form of nerve pain or am I feeling actual tightness in an area I can't feel?
            FYI, people with MS can get central pain as well. In the MS world this symptom has been described as the "MS hug".

            Comment


              #7
              Originally posted by ECUrach85 View Post
              I've read about pain here so often and I've decided to ask a bunch of my own questions. My nerve pain is extremely debilitating and it clearly seems to be getting worse. I'm now on 900mg of gabapentin 3x a day but it seems to do nothing. Here's my huge list of questions and feel free to chime in on one or all


              1. Can anyone relate to their nerve pain being worse in the morning? It keeps me from playing rugby and finding a job. I feel like I'm being dipped in acid from the chest down. Pain seriously runs my life .

              2. I'm a c6 quad but my nerve pain is worse in my core. It makes it difficult to push my chair sometimes. Activity makes it worse. I never hear anyone talk about their core. Can anyone relate?

              3. Has anyone ever been on a bunch of gabapentin and switched to something that actually worked?

              4. Is it reallly worth it to find a pain doc? Doesn't my regular doctor know what's out there?

              5. Sometimes my nerve pain comes along with a tightness. I feel like I'm wearing a metal corset. Is this a form of nerve pain or am I feeling actual tightness in an area I can't feel?
              For me, high doses of Lyrica and Tramadol work better than gabapentin most days.
              2012 SCINetUSA Clinical Trial Support Squad Member
              Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

              Comment


                #8
                Just beware that there are certain pain docs who won't prescribe benzos or opiates. Stay away from them, as those two classes of drugs have saved Chad a lot of pain. He goes to his primary care doctor for his pain control for exactly that reason. Avoid the Duke Pain Clinic - they won't write for benzos or opiates.
                Last edited by zillazangel; 15 Nov 2011, 6:39 PM.
                Wife of Chad (C4/5 since 1988), mom of a great teenager

                Comment


                  #9
                  Pain

                  I have the exact same problem. My pain is way worse in the morning, same thing with the weakness. I usually feel like I have the flu when I wake up. I STRONGLY suggest getting with a pain specialist. I was prescribed narcotics for two years by my neurologist. Most of the time I was still in pain and it was just uncontrollable. I'm a small girl and I started to feel like my neurologist was thinking I was drug seeking. He would tell me there is no reason why it shouldn't be working and that after vicodin there was nothing else to give me! He was clueless! I got with my pain doc and it's a whole new world! I now feel like I have tons of options and I no longer feel helpless and doomed to a life of misery. We tried a few drugs and a few combinations and right now I have been able to keep my pain at a 5 maybe 6 most days. Which is a HUGE improvement for me! I take 30mg of oxycontin every 6 hours and I have 15mg oxycodone up to 3 times a day for breakthrough, which I always need. I feel so much better than I ever did managing my pain with my neuro. Getting hooked up with a pain doc is one of THE BEST choices I have made for my overall health and mental well being. We all know how pain drags you down in every way.

                  Comment


                    #10
                    Thank you so much for your responses! I will seek out a pain specialist then! I also forgot to mention naps. I'm afraid to fall back asleep in the morning or in the afternoon. Y'all have that?
                    Www.rachellefriedman.com

                    Follow me on Facebook at
                    www.facebook.com/rachelleandchris

                    Follow me on twitter at
                    www.twitter.com/followrachelle

                    Www.wheelstrong.com

                    sigpic

                    Comment


                      #11
                      Originally posted by zillazangel View Post
                      Just beware that there are certain pain docs who won't prescribe benzos or opiates. Stay away from them, as those two classes of drugs have saved Chad a lot of pain. He goes to his primary care doctor for his pain control for exactly that reason. Avoid the Duke Pain Clinic - they won't write for benzos or opiates.
                      Thanks! I may have already asked this but who is chads SCI specialist. I'm at wake med with dr. Obrien but I dislike it there a lot
                      Www.rachellefriedman.com

                      Follow me on Facebook at
                      www.facebook.com/rachelleandchris

                      Follow me on twitter at
                      www.twitter.com/followrachelle

                      Www.wheelstrong.com

                      sigpic

                      Comment


                        #12
                        Originally posted by ECUrach85 View Post
                        Thanks! I may have already asked this but who is chads SCI specialist. I'm at wake med with dr. Obrien but I dislike it there a lot
                        OMG, we hate him .... we don't have a specialist for his SCI believe it or not. We have patched together a network of specialists for each area, and his primary care doctor is phenom, and his uro is awesome, so those are the two main doctors he sees. He has in the past been seen by Dr. Lee at UNC Dept of PMR but we weren't all that keen on him either, although his residents can be good (hit or miss though).

                        We need to get together eh?! Swap war stories and good experiences. PM me!
                        Wife of Chad (C4/5 since 1988), mom of a great teenager

                        Comment


                          #13
                          Originally posted by ECUrach85 View Post
                          Thank you so much for your responses! I will seek out a pain specialist then! I also forgot to mention naps. I'm afraid to fall back asleep in the morning or in the afternoon. Y'all have that?
                          Be careful about lying down soon after you take any meds to raise your bp. When you lie down it can raise it quite a bit more than what it is upright. That's why on midodrine you aren't suppose to take it so many hrs before bedtime. It could be creating supine hypertension (high bp when flat).

                          Oh and yes most of my neuropathic pain is in my torso and pelvic region...and one side of butt and part of my thigh (portions of foot too, lol). I don't have the classic burning from chest to toes. Burning is present at times, but for the most part it's different painful sensations. Feel it with movement too. I think anything is possible w/ nerve pain. I had a dr tell me it probably wasn't neuropathic because it wasn't the classic symptoms or an entire band region on down. Have had the corset feeling so much that I've had to feel my abdomen to see if I had my binder on that day squeezing my skin.
                          Last edited by november; 16 Nov 2011, 10:40 PM.
                          Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

                          Comment


                            #14
                            Oh my gosh I had to keep re-reading all your posts. I was injured one year ago and my PN is getting worse. It is such a roller coaster for me. My neuro surgeon finally sent me to a pain specialist, but now I feel groogy I was just put on Lyrica from Gabapentin and I feel like I have the flu I am hot then cold and I am having a terrible time sleeping. She also put me on 5mg of ambien from 200 mg of trazadone and she will not up the dosage of ambien so most of this week I switch between xanax and percacet to sleep and then can't hardly drag myself out of bed.
                            I also walk like a penquin had L1burst and am dealing with that too. I was in auto accident just one year ago, and had to learn to walk all over again. I think I was better six months ago than I am now and I am discouraged.

                            Sometimes I wish I could go back to the hospital and start fresh from meds (does that sound stupid?)

                            I just wanted to thank all for sharing and making me realize this pain is awful and I am going to make another phone call to the Dr. tomorrow and share my feelings. Monday I called and the nurse said to just take the Lyrica at night 150 mg. and even that makes me feel loopy. I am ready to stop and deal with my neuropathy pain, because I am convinced it is never going to go away like I thought it was.
                            Thanks for letting me vent..
                            JeAnNE L1Burst Fracture inc. 11/5/10

                            Live Well--Laugh often

                            Comment


                              #15
                              It's wierd with me my pain is not bad at all in the mourning, it's at night, especially late at night after sitting in the chair all day it gets really bad. Are you sleeping on a comfortable matteress? Maybe try drinking some herbal tea in the mourning. That helps with my pain some. I don't take any meds for my pain, I just kinda live with it like I've been doing for 30 years now. I don't like taking meds at all. I know for me too getting in a hot tub use to really help out although I don't have access to one at this point so thats not an option. Trying to think of anything else, oh ya, if you don't get enough sleep that can really make pain a lot worse. You may not be getting enough sleep?

                              I use to live in Raliegh a real long time ago, was only there for a couple of years but I loved it there. That's where I got the idea for my Quick Lube place as I had a friend there who had one, went to work for him and then I took the Idea up north and opened one in Rhode Island and it was a huge success.
                              "Life is about how you
                              respond to not only the
                              challenges you're dealt but
                              the challenges you seek...If
                              you have no goals, no
                              mountains to climb, your
                              soul dies".~Liz Fordred

                              Comment

                              Working...
                              X