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Nerve (neuropathic) Pain.

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    #16
    Thanks Sarah and Lynne xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #17
      Don't know if this is any help but having an injection near the affected area may be less troublesome than having meds into the stomach. It may not affect the areas of problems such as breathing or stomach. Not sure of any specific drugs that have not already been mentioned other than steroid injections. Hope you find a solution very soon.

      Kevin

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        #18
        I found ibuprofen works but attacks the stomach lining so lansoprazole must be taken as well. 👏👍x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #19
          I too have hand pains that can be quite painful but they wax and wane. I purposefully open my hand at night and use the other to squash it against my chest. The warmth always helps. xx
          Copyright Graham

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            #20
            So sorry you're suffering so, Ellie, and that I can't advise. Lots of love x
            Diagnosed July 2020, ALS bulbar onset.

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              #21
              Hope you feel a bit today Ellie

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                #22
                Sorry to hear about this Ellie xxx

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                  #23
                  Hi Ellie,

                  I never thought you would be asking for advice since you are generally offering it so your thread prompted a memory about a friend whose husband had MND and experienced nerve pain. I contacted my friend and she said that they had some success with Capsaicin cream. I believe it is widely available at the pharmacy.

                  I hope you have relief from pain soon.

                  Love,
                  Barry
                  I’m going to do this even if it kills me!

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                    #24
                    Ellie
                    Forum Member
                    Ellie

                    Is there a reason why you have this new pain, like a fall or something like that or did the pain come on out of the blue?

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                      #25
                      Kevinp2109
                      Forum Member
                      Kevinp2109 Good suggestion, thanks Kevin - no real nasty side effects with the injections. I had nerve block injections in my shoulder blade before, worked a treat.

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

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                        #26
                        Thank you all for your kindness x

                        I am on steroids for a few days to see if things improve, if they work great and she will give me a steroid injection and/or a nerve block injection for longer term relief.

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

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                          #27
                          DJW
                          Forum Member
                          DJW It came on all of a sudden and is quite odd as I have no movement in the limb for years, so it's not as if I over-exerted my wrist by texting or being on a games console for hours 😁

                          My muscles in that area are very atrophied, just skin and bone really and my arm, wrist and hand are dead weights resting on my lap, so the nerve maybe had had enough - lesson learned!! I will make sure my arm is repositioned every few hours.

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

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                            #28
                            Originally posted by Barry52 View Post
                            Capsaicin cream.
                            I hadn't heard of this cream, Barry, it looks very interesting - I've noted its name.

                            Thanks for sharing.

                            Love Ellie.

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

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                              #29
                              Ellie
                              Forum Member
                              Ellie

                              I have read a book that was recommended by the Hospital of Integrated Medicine, same buildings as the National Hospital London. The philosophy of the book is that we can deal with pain instead of using pharmaceutical drugs which basically don't fix the underlying condition that help us deal with the effects of the the manifestation of the pain but by dealing with an underline issue that we have either repressed or suppressed. The author claims that scientific studies have been done in relation to mindbody medicine and has cured a plethora of pain-related scenarios. I have attached a photograph of the book if it is of any interest to you. Wishing you well lots of love Dennis. IMG_20210221_095942630.jpg
                              DJW
                              Forum Member
                              Last edited by DJW; 2 March 2021, 14:48.

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                                #30
                                DJW
                                Forum Member
                                DJW I'm all ears... Do tell or maybe it's one of the books you mentioned in another thread? x
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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