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It hurts so much. :(

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    #1

    It hurts so much. :(

    Why does this have to hurt so much??? I am on 200 mg of gabapentin 3x a day - which has helped but it still hurts - a lot. I don't know why this has to hurt so much. I am short with my kids, and it makes me sad - but I don't know how to stop. They told me they are probably going to up me to 4x a day on the 200mg dose, but I am assuming there will still be breakthrough pain sometimes. Or, that at some point I will need to go up. I am so confused to how I was FINE in October, I mean perfectly fine and now I am just this mess that cannot walk far without exhaustion and pain. I have to park in a handicap spot most days and the pain I live with is just unbelievable. I don't even try to describe it to my family because they will never understand it.

    I suffer through my classes but it is so hard to concentrate with the pain, today was almost impossible. I don't even know why I stayed. I don't really remember ANYTHING about today. I just wrote stuff down but don't remember any of it and I definately didn't do any LEARNING.

    I know this will get better (RIGHT?!) but right now I am just so discouraged! I guess I just need to vent/complain. Thanks for listening.
    Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
    ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~
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    #2
    Sasha,

    I'm sorry you're going through this. If it helps, we on this message board DO understand, to some degree, so you can complain all you want.

    I was diagnosed in December 2010, and I, too, was completely fine in October. I have pain, in my legs and feet, to the point of crying most days. I am not on anything for the pain, though, and yours sounds much more extreme. I'm sorry about that (sincerely).

    FWIW, I took part in an MS Clinic yesterday, and, after seeing 7 different specialists, all with MS training, I was put on work restriction by the physician. I didn't really think I was that bad, but my whole Clinic team was worried I would continue to progress quickly if I pushed myself too hard. I have been working about 50 hours per week, and I was told to cut to AT LEAST 40hrs, if not 30. Maybe you could think about ways to cut down your activities a bit?

    Just a thought. You can tell me to be quiet if this is all completely unhelpful
    "Be the reason for someone’s happiness, not just a part of it. Be a part of someone’s sadness, but not the reason for it."

    Comment

      #3


      I am really, really sorry that you are going through so much trouble, Sasha. I can understand all the stress and pressure you must be feeling. I know it's been a few months since our diagnosis but I feel like I'm backsliding mentally a little - and I don't have nearly as much going on as you do.

      That being said - you are a huge inspiration. I really enjoy reading your posts because you are so insightful and knowledgeable. And, since we were diagnosed around the same time and have some similar issues, it's nice to get the perspective of others on the same "level" (for lack of a better word...I'm sure there actually IS a better word and the Pre-MS Bachelor's of Communication Kristen would probably have spent however long it took to find that word...but now however long it takes could potentially end up being all night, and I'm more willing to find a crappy stand in word then waste all that time now.... LOL I definitely have some cognitive issues going on that make me the saddest...)

      I think your plans and dreams are really amazing and I sincerely, sincerely hope that you are able to continue towards that awesome goal of yours.

      Anyways, my point was, I wish you weren't going thru such a hard time physically right now since I know a lot of my issue right now is more emotional, and I'm sure you have that component as well. (With it being so close to the diagnosis...) I just wanted to let you know that we are all here for you and hope you feel better soon
      Kristen
      DX'd 2.9.11
      Has NO idea what she's doing

      Comment

        #4
        I am sorry you are in so much pain. I can definitely relate. About 5 yrs ago before I was taking anything and before there was even the slightest notion I had MS I use to go to a clinic here in town and get a shot of Torodal for temporary relief. I take 900mg of Gabapentin a day (for sharp shooting pain)and 3 Lortab 10 a day (for leg pain) on good days and 4 lortabs (for bad days). I know it is a narcotic but my doc and I tried everything before hand and that was the last resort. Talk to your doc about some type of pain meds if nothing else works. I hope you find relief soon. The pain can definitely affect your day.
        Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

        It's hard to beat a person that never gives up.
        Babe Ruth

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          #5
          Another Option

          I had good luck with acupuncture helping the pain....

          Comment

            #6
            Obviously I get it...I have PPMS.

            What I don't get is this...Painkillers! People. I'm not trying to be cute or funny but my experience has been that when I'm in pain, which is everyday, I cannot function very well. That did not work out well because I was needing to "function" at a very high level...for someone with MS. Taking pain medication made me comfortable...I was able to function on a daily basis and accomplish such much more.

            We have MS...and if we are experiencing pain at a level that seriously affects our ability to function as is required then we ARE at a point of using pain pills as a system management technique.

            Gabapentin?? Try some "real" painkillers. Find one that agrees with you and allows you to be comfortable and function better.

            I hope this rough patch your going through ends soon.

            Comment

              #7
              Originally posted by kphirsh View Post
              Obviously I get it...I have PPMS.

              What I don't get is this...Painkillers! People. I'm not trying to be cute or funny but my experience has been that when I'm in pain, which is everyday, I cannot function very well. That did not work out well because I was needing to "function" at a very high level...for someone with MS. Taking pain medication made me comfortable...I was able to function on a daily basis and accomplish such much more.

              We have MS...and if we are experiencing pain at a level that seriously affects our ability to function as is required then we ARE at a point of using pain pills as a system management technique.

              Gabapentin?? Try some "real" painkillers. Find one that agrees with you and allows you to be comfortable and function better.

              I hope this rough patch your going through ends soon.
              Hi. I am really interested in what you mean. I have tried vicodin - which totally doesn't help my pain - doens't touch it at all. Gabapentin has helped somewhat - but doens't seem to help completely. I also need to function at a high level. I am a biology major in my 3rd year of college needing to process a LOT of information and learn it - next year my schedual is KILLER. I have to be able to think and thinking while in the level of pain I cope with even ON the gabepentin is really hard. I have to take MCATs next year. I have to figure something out. I appreciate any and all advice you have to offer, please. They have upped my gabapentin dose to 200 mg 4 x a day for now - with the promise of going up soon based on my pain descriptions.
              Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
              ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

              Comment

                #8
                Vicodin really did not do much for my type of pain either. It does help when I get bouts of more extreme pain but I don't really like it that much.

                Standard painkillers like Vicodin was kind of what I was referring to but not Vicodin specifically.

                Tramadol has worked wonders for me...it is a non-opiate painkiller that proved really effective for my type of Neuropathic pain. But it may not work for you...just like MS is different in everyone, so probably is the type of pain we experience.

                There are a lot of different painkillers out there, opiates and non-opiates. If you can find one that alleviates your pain, while allowing you to function as "normal", then your in business. Based on what your goals seem to be, be careful of addiction and take only when going through these bouts of pain that limit your ability to function as needed.

                I know nothing about Gabapentin but it's one you have tried that does not seem to be working. If it has provided some relief then maybe a higher dose will work for you.
                I guess my point was to be open to trying different pain killers. Many people are very resistant and wind up letting the pain rule their life. If what you have tried does not let you accomplish what you need to do, try something else.

                I'm giving this "advice" as someone that can relate to MS pain and needing to function at a high level in spite of it. I also feel that me giving advice is like Lucy at her 5 cent psychiatry booth.

                Comment

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