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    Nerve (neuropathic) Pain.

    I've recently developed nerve pain in my hand, which is causing me much grief. My palm, thumb and first 2 fingers are affected, so it’s the median nerve, like carpal tunnel syndrome.

    It’s bearable during the day, just numbness and pins & needles, but the pain ramps up in the evenings, peaking from midnight until about 2am - the pain is like a burning sensation, very sensitive skin, with throbbing thrown in for good measure 😣 I have no movement in the hand or arm, nor will it stay palm side up. I usually wear a splint in bed but left it off last night to see if it made any difference, it didn't.

    If anyone has nerve pain anywhere on the body, what meds, lotions or potions do you take? I can’t take the usual suspects, Gabapentin or Pregabalin, because my breathing is too poor, and Amitriptyline takes a few weeks to kick in - I’m hoping it’s a short-term problem 🤞

    Any help gratefully accepted!

    Love Ellie.


    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


    #2
    sorry to hear that you are in so much pain. I hope someone comes along with a solution for this pain x

    Comment


      #3
      Sorry I can’t help. Ann tried sooo many things but I’ll be jiggered If I can remember them. All I can offer is a rare 🤗

      Comment


        #4
        Hi Ellie,

        So sorry you're in pain and discomfort.. as if life isn't hard enough. I'm also sorry I haven't an answer except to identify with this.( I know that's no help !)

        My pain is in my feet and it wakes me every night. For some weird reason they're OK in the day. I can't move my feet and its like a burning pain. I take ordinary painkillers before bed and I'm guessing it's when they wear off. I cant stand the covers on them so although I have a frame they get really cold. I have barrier cream on my legs so I'm wondering if that could be irritating.

        I googled cbd balm to put on before bed but I'm speaking to my nurse this week so I'll let you know if she has any answers. Sleep is so important and I know I feel so much better if I've had a good night.

        Big hugs to you,
        Love Debbie x

        Comment


          #5
          Hi Ellie

          Apart from the palliative care team and their experience and controlling pain, you would be my goto person. It may be worth discussing Naproxen with your GP?

          Comment


            #6
            Sorry to hear you're in pain, Ellie. Unfortunately, we all turn to you for advice. I hope someone can help. You help the rest of us so much, it would be a shame if nobody can come up with something. xx
            Each day is made easier with a bit of humour.

            Comment


              #7
              Ellie. Just looked back on some of Ann’s meds. The only one I think might be if use but obvs you need to check it out is mirtazapine. From memory it took a few days to kick in

              Comment


                #8
                Hi Debbie,

                Yes please let me know what you find out.

                Love Ellie.
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                Comment


                  #9
                  DJW Yes my palliative nurses are my first port of call for practically everything, Dennis - they are fantastic.

                  I started off on high-dose ibuprofen and paracetamol but no joy for nerve pain, so I guess Naproxen would be the same. I shall ask tomorrow, thanks. x
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Bowler Thanks Phil, that med is similar to Amitriptyline, which I may try if it continues.

                    It's just that I'm restricted in what meds I can take with my breathing - I'd cure one thing then cause another (worse) thing!!

                    I'm having a gentle hand massage as I type😄 x
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Ellie on the upside naproxen does work for 12 hours and you can use it with paracetamol. 👍

                      Comment


                        #12
                        Originally posted by Ellie View Post
                        Bowler Thanks Phil, that med is similar to Amitriptyline, which I may try if it continues.

                        It's just that I'm restricted in what meds I can take with my breathing - I'd cure one thing then cause another (worse) thing!!

                        I'm having a gentle hand massage as I type😄 x
                        There’s always horse lineament 🤔

                        Comment


                          #13
                          🤣🤣
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Hi Ellie
                            I am sorry that you are having such pain. I take Meloxicam but it is more for joint pain and I don't know if it would help I had acupuncture for a similar condition many years ago and that prevented me from having carpal tunnel surgery xx

                            I hope that you have a peaceful night xx love Sarah xx

                            Comment


                              #15
                              Hi Ellie, I can relate to your pain in your hand. I have had RSI, carpal tunnel syndrome and nerve damage in my right arm wrist and hand from long before MND. It was caused by repetition of typing without enough breaks. When it was at it’s worst nothing got rid of it but Naproxen was the best at reducing it. I had to stop taking it unfortunately because it eroded the lining at the top of my stomach. My husband has just been prescribed Naproxen for arthritic pain in his foot. But he was given something to protect his stomachs too. I wouldn’t take the stomach protection medication because it might stop Riluzone from being absorbed. Good luck with finder a solution. Now that I’m doing less my arm pain is less but it’ll never go complete. Lynne x
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                              I'm staying positive and taking each day as it comes.

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