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Thread: Baclofen

  1. #21
    Forum Member Kayleigh's Avatar
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    Hi Lynne,

    Sorry to hear about the problems you experience due to long-term pain.

    Hopefully, when you get your new mattress it will help you sleep better.

    I agree with you about the painkillers - there are the benefits v. side effects to consider, especially if being used long-term. However, we have got enough to cope with without being in pain. It is a personal choice to make. I always used to be extremely cautious about their possible side effects, but my life has changed and not being in pain is much more of a priority for me now. Being in pain affects our quality of life, and so I want whatever life I have left to be as pain-free as possible.

    I would never take 'stronger' painkillers unless I had got advice from my GP first and, hopefully, I would only need them for a short amount of time. I have taken codeine tablets for one or two days in the past and they have stopped the pain, with no side effects and no addiction.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 5th January 2019 at 21:21.

  2. #22
    Forum Member Lynne K's Avatar
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    Hi Kayleigh. We got the new mattress and memory foam topper on Thursday. I'm still in severe pain every night. Some pain and or discomfort I'm my back every day. I turn with great difficulty on to my side when I'm at my wits end with the pain when my back is in contact with the bed. But after a while on my right side my left hip gets seriously painful so I have to go back to my back, so square one pain wise. In a way I'm looking forward to 3 days back pain free from Monday. When the do my op' they plan to put a pain killing epidural in and keep me in bed 3 days. I'll have a physio to work my legs, so they don't cease up. Lynne
    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.

  3. #23
    Forum Member Lynne K's Avatar
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    I do have the new mattress and topper thanks Emma. I just posted a reply to Kayleigh about this. I have a tens machine that I sometimes use during the day. I wouldn't leave it on at night. A heat pad might work because running hot water on my back in the shower is lovely because lessons pain. I look forward to my shower every day. Lynne
    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. #24
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    Ive started on 5mg Baclofen and loved it! My legs wallked normally again. From what Ive read it has a short life so you take it through the day? Because of the severe withdrawal reactions my doctor wanted to see if I had any adverse reactions before upping me. I'm using it before i need to go out at the moment.

  5. #25
    Forum Member Ellie's Avatar
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    Hi Lisa,

    Baclofen is "usually" taken 3x per day, but sometimes it's only taken for when spasticity will cause problems, e.g. in bed or before a physio session.

    Some spasticity (high muscle tone) can be a good thing for maintaining a degree of function - in your case reducing tone in your legs enough so you can bend knees and move feet allowing you to walk, but not resulting in low muscle tone which wouldn't allow you weight bear - that's why I say it's a balancing act to find the right dose.

    If you think you'd benefit from a 2nd or 3rd daily dose, ask your Dr.

    I take Baclofen 3x daily and add Tizanidine, another antispasmodic, for bed as that's when my already-high leg muscle tone goes even higher!

    Good luck,

    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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