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Thread: No To Peg and No To NIV

  1. #31
    Forum Member Kayleigh's Avatar
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    Hi Lynne,

    The painkiller you are thinking of that begins with 'c' might be codeine?

    It's good to hear that your appointment went well. I hope that some painkillers will be effective and that they will help you to get a good night's sleep.

    Love
    Kayleigh x

  2. #32
    Forum Member Kayleigh's Avatar
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    Baclofen is a muscle relaxant Lynne, but it doesn't sound like it would be prescribed for your back and hip pain anyway.

    Baclofen is sometimes prescribed for muscle cramps (if quinine is not effective):-

    https://www.mndassociation.org/forpr...nagement/pain/

    Love Kayleigh xx

  3. #33
    Forum Member Lynne K's Avatar
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    Thanks Kayleigh. It's just that my neurologist mentioned it. She first asked if I'd had amitriptyline for pain. I said that I had been prescribed a small dose of it years ago but I'd never take it again. It helped me to sleep but I was foggy headed for most of the following day. Then she suggested Baclofen I think.I asked if this was the drug that caused muscle weakness? She said it was another drug (beginning with a 'c' but was definitely not codeine, 'carb... ' something maybe) . But my memory suffers when I'm tired and I couldn't remember which of these two drugs gave muscle weakness after I got home. I wouldn't take codeine because of two things:, it causes constipation and after a while it has less effect. I've had it in the past. I've also had another similar drug that didn't cause constipation but increased the risk of falling. The risk of addiction with opiods such as these is high. I don't hold out much hope of a solution to my pain. Lynne
    Last edited by Lynne K; 8th May 2019 at 17:54.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #34
    Forum Member Lynne K's Avatar
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    Thanks Ellie, Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #35
    Forum Member Lynne K's Avatar
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    Chrissie, I sent you a personal message. Sorry that I must have done something wrong as its gone to you twice. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #36
    Forum Member Kayleigh's Avatar
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    Quote Originally Posted by Lynne K View Post
    Thanks Kayleigh. It's just that my neurologist mentioned it. She first asked if I'd had amitriptyline for pain. I said that I had been prescribed a small dose of it years ago but I'd never take it again. It helped me to sleep but I was foggy headed for most of the following day. Then she suggested Baclofen I think.I asked if this was the drug that caused muscle weakness? She said it was another drug (beginning with a 'c' but was definitely not codeine, 'carb... ' something maybe) . But my memory suffers when I'm tired and I couldn't remember which of these two drugs gave muscle weakness after I got home. I wouldn't take codeine because of two things:, it causes constipation and after a while it has less effect. I've had it in the past. I've also had another similar drug that didn't cause constipation but increased the risk of falling. The risk of addiction with opiods such as these is high. I don't hold out much hope of a solution to my pain. Lynne
    Hi Lynne,

    It sounds like she might be asking your GP to prescribe Baclofen then? - anyway I expect you will find out shorty, especially if she sends you a copy of the letter she sends to the GP.

    Hopefully, whatever is prescribed will work well for you, because it can't be pleasant having to put up with on-going back pain.

    Love Kayleigh x
    Last edited by Kayleigh; 8th May 2019 at 19:10.

  7. #37
    Forum Member Lynne K's Avatar
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    Thanks Kayleigh. I always get copies of letters from my neurologist to my GP, well almost. The only one that I didn't get was around the time that I changed GP. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #38
    Forum Member Ellie's Avatar
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    Hi Lynne,

    If it is Baclofen you've been prescribed and, only if you want to, you can let us know before you start taking it - I take it, as do many others, and know it can take a few attempts to get the sweet spot dose of Baclofen. It's not ideal to jump right in at a high starting dose...

    That's not to say I disagree with your doctor btw!!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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