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  • Ellie
    replied
    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.

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  • Lynne K
    replied
    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

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  • Kayleigh
    replied
    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; 8 May 2019, 18:10.

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  • Lynne K
    replied
    Chrissie, I sent you a personal message. Sorry that I must have done something wrong as its gone to you twice. Lynne x

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  • Lynne K
    replied
    Thanks Ellie, Lynne x

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  • Lynne K
    replied
    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; 8 May 2019, 16:54.

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  • Kayleigh
    replied
    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

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  • Kayleigh
    replied
    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

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  • Ellie
    replied
    Glad you're doing so well Lynne, MND-wise at least.

    Yes, sleep really IS important, so hopefully your GP will sort out appropriate for your non-MND pain. Baclofem is an antispasmodic medication, rather than a painkiller - unless your muscle tone is quite high, it may not be suitable for you.

    Hope you get that pain sorted out ASAP!

    Love Ellie.

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  • Lynne K
    replied
    Appointment went OK thanks Kayleigh. All tests slightly different results but Miss A Chaouch Neurologist was happy with them. She says that she thinks I'm doing very well, But she asked me about if I get enough sleep and was concerned about what I told her. I struggle to get enough sleep because of back and hip pain mostly. Other pain problems sometimes wake me. None are caused by MND but my back is getting worse because I'm not walking as I used to (I had to keep moving to keep my back in good shape). She's going to write to my GP to ask for something to be done ie tablets. She said getting enough sleep is very important. Can you remember which of the painkillers causes muscle weakness so that I can avoid it. Is it Baclofen that is safe for us to take? I can't remember the name of the other drug beginning with 'c.' Lynne

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  • Kayleigh
    replied
    I hope all goes well at your appointment Lynne. Kayleigh x

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  • Gillette
    replied
    Originally posted by Lynne K View Post
    Thanks Chrissie. Just arrived. Always long time consuming queue to get into Salford Royal, then another similar queue to park. But we always leave lots of time. I'm in the foyer now and hubby gone to park after wheeling me here from the drop off point. Appointment 1pm. Lynne x
    Good luck at the clinic, Lynne.

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  • Lynne K
    replied
    Thanks Chrissie. Just arrived. Always long time consuming queue to get into Salford Royal, then another similar queue to park. But we always leave lots of time. I'm in the foyer now and hubby gone to park after wheeling me here from the drop off point. Appointment 1pm. Lynne x

    Leave a comment:


  • Broostine93
    replied
    Thank you, Debbie- I am trying to tell myself to spend some time with my partner, but I don't half get guilt-tripped for it after I've done it.

    Lynne- Good luck at the clinic. I hope you get on okay

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  • Lynne K
    replied
    Hi Chrissie, I'm very similar to you I think in not wanting strife and not able to take part in shouting matches. I would have been really upset to be spoken to how you described. My heart goes out to you. I'm off out to the MND Clinic now but will message again later. Lynne x

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