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    #1

    Pain meds

    Evening all.

    My doctor prescribed oramorph for pain. Its not really working on my bum bone pain and hip pain. It lasts all about 2hrs.

    I did use dihydrocodiene which I found very good.

    I also want to ask re a sedative as I'm not sleeping well. I then get tired and it gets me down.

    So can you give me feed back on pain meds that have worked and any medication that helps re sleep etc.

    I then can approach and discuss with gp.
    Diagnosed May 2021 bulbar onset als.
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    #2
    Your nerve pain hasn't responded to anything really, even various opioids 😟 so what about an injection - either a nerve block or a steroid - as the next step?

    Or have you tried injections without success? 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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      #3
      For sleeping i have zoplicone in liquid form down my PEG. Works well and no drowsy feelings the following day. For my twitching muscles I have Gaberpentin which works for me. Otherwise I just have ibuprofen and paracetamol for pain generally. I do have oramorph for severe pain but haven’t had to use it so far so can’t comment on that.
      Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes
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        #4
        Originally posted by shelly21 View Post
        I also want to ask re a sedative as I'm not sleeping well. I then get tired and it gets me down.

        So can you give me feed back on pain meds that have worked and any medication that helps re sleep etc
        I was prescribed Mirtazapine, which is actually an anti depressant but works as a sedative too. Following diagnosis I got really disturbed sleep. I take one before bed and they knock me out. The added benefit is they dissolve in the mouth.
        Diagnosed 3rd November 2021 Bulbar Onset
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          #5
          Ellie the physio suggested pain clinic and I agreed but didn't hear anything. Tbh the waiting time probably is high re people waiting for operations etc.

          Hakuna thank you for your response i keep mentioning gabapentin to gp but I don't get a response.

          Gill thank you for your reply. I can at least explain alternatives to morphine x
          Diagnosed May 2021 bulbar onset als.
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            #6
            Hi Shelly I don’t think the GP is the best person to talk to re Gaberpentin. The MND clinic doctor prescribed it when I was in the hospice. He then wrote to my GP and it was added to my repeat prescription. Do you have a specialist MND neurologist? I would him/her about it?
            Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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              #7
              Gabapentin is used commonly with nerve pain. Gp recommended but I'm on other meds that can cause issues. I'm seeing my palliative care doctor tomorrow to discuss it.
              Diagnosed May 2021 bulbar onset als.
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                #8
                Originally posted by shelly21 View Post
                I'm seeing my palliative care doctor tomorrow to discuss it.
                🤞🤞 for you Shelly.

                Worth asking the Palliative Care doctor if you can be pushed up the list at the Pain Clinic too. 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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                  #9
                  I do hope so Ellie. I'm ok lying flat but sitting is awful. I've also asked for a better cushion. I read a post of yours re gel cell or roho. X
                  Diagnosed May 2021 bulbar onset als.
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