Baclofen

[Ellie]

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.

[Catsparkle]

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.

[Lynne K]

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

[Lynne K]

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

[Kayleigh]

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

[easter19]

hi lynne
have you had your new mattress and topper delivered yet ?
does anything help with the pain
hot/cold heatwraps etc
love
emma x

[Lynne K]

I'm sorry for all of you struggling with back pain due to spasms. I hope that you all manage to sort it out one way or another.

I'm the same, in terms of severe back pain every night, but no spasms. My pain is not an MND symptom (it's because of my severely degenerated discs) but caused by my MND because in the past I could reduce or even eliminate it by walking and if pain not too bad fast paced walking. Now I cannot walk off the pain. I knew that this would happen when I got diagnosed.

I cannot usually take ibuprofen because I already have stomach issues since years of taking anti-inflammatories. I don't take them now despite various pain issues because I get heartburn most days and reflux sometimes. I was told by my GP that the top of my stomach was eroded.

I get my husband to rub in ibuprofen gel in to my lower back before bed sometimes. I wish I could have it every night. But even the gel can cause heart burn and reflux.

Too many paracetamol, even taking the recommended safe maximum dose can damage your liver. Anyway if we take any pain killer too often our bodies get used to it, they have less effect. Some people crave more and hence addiction can result. That's with codeine-like tablets. It isn't worth taking them in the first place.

I take paracetamol rarely, despite being in pain 24/7 because I want them to work when I'm at my wits end with pain. I'm getting close to that now. Maybe paracetamol by mouth tonight and ibuprofen gel on my back. I might then get a few decent hours sleep for a change.

I had low dose amitriptyline for insomnia related to pain about 15 years ago for a few months. It did help but I had a dreadfully foggy head until about 2pm next day so stopped taking it. My ex husband had a higher dose when he had a breakdown. Even at the lower dose that I was on I felt really chilled out, and not my usual then self who couldn't sit down for long of felt I had to get up and do stuff, anything. So, if ever I felt down about this disease and was still losing sleep because of pain I'd take a low dose of amitriptyline.
Lynne

[Kayleigh]

Hi Boiler,

Sorry to hear about Mr Boiler's back pain - not a pleasant way to start the new year at all! It is bad enough coping with things without being in pain as well.

I have recently been advised by my nurse that if I get any cramps or pains, I should take ibuprofen (like Terry does) or for longer periods of time to take paracetamol, because apparently prolonged use of ibuprofen can cause stomach ulcers.

She also told me that if I need stronger painkillers, I can get them prescribed by my GP.

Might be worth asking his GP, if pain doesn't clear up with 'standard' painkillers, what can be prescribed so that it can get sorted asap - as I can't imagine either him or you are getting much sleep or having a very pleasant time at the moment, if he is in severe pain.

Hopefully, Mr Boiler will be feeling better soon.

Also, I hope you and your family are ok too.

Best wishes,
Kayleigh x

[Boiler68]

Hi Terry

He hasn't had a bad back like this before where it makes him gasp and double up. I guess poor posture and sitting all day is a major factor. He said earlier it had eased off a bit but not longer after asked for some painkillers! Currently filling hot water bottle and he's straightening out with a lie down.
Thanks for your reply. Hope your back doesn't give you too much trouble this year..

X

[Terry]

Hi Boiler;

Does your husband suffer from back trouble normally and did it start with a twinge in the lower back?

Just asking because I can suffer from lower back spasms that put me out of action for a few days each time. I used to take a strong relaxant like what Ellie suggests, but now I dose up on Ibuprofen and after a couple of days I can start to move.

I don't think that it is directly related to Mnd but it is another one of the lovely side issues, perhaps caused by weakening muscles and poor posture. I hope he can relax them, heat and just rubbing the area can help.

Love Terry

[Boiler68]

Hello Barry, Ellie and Tiandb

Thanks for your advice. I did ring the MND team at Salford today but it's not a phone that's manned all the time so we've not had a reply yet. Hopefully they'll catch us before the gp appointment on Monday. Hubby does have cbd oil here and I have told him about the magnesium too. He's currently got a hot water bottle behind him so is comfortable at the moment. Thanks again

Xx

Hi Boiler68.
Baclofen is used for muscle troubles with ALS, more in the USA than Europe it seems from looking at evaluations on PLM.
I have got my Doctor to prescribe here in the UK. I take 10mg when I struggle from bed in the morning and another 10mg for the afternoon.
I second CBD oil which also seems to help.
https://www.patientslikeme.com/treat...condition_id=9 ( Baclofen , Click on Evaluations numbers )

https://www.patientslikeme.com/treatment/cannabidiol ( CBD )

I Wish you well with your Husband and the best of luck.

[Ellie]

Hi Boiler,

Yes, Baclofen is an antispasmodic medicine which reduces muscle tone in the body.

Given the spasm is localised, be aware that antispasmodics may lower his muscle tone in unaffected muscles, which may be problematic - getting the right dose and balance of functionality is key.

Maybe a muscle relaxant, e.g. Diazepam, would be better, given the sudden onset of spasm.

In the meantime, heat and massage (try using magnesium oil) may take the edge of his pain, but for bad spasm, meds are probably needed.

Good luck.

Love Ellie.

[Barry52]

Hi Boiler,

Baclofen is a muscle relaxant and whilst I am not medically qualified I don’t think that this drug will help with pain caused by spasms. If you are not confident with your husband’s GP then maybe you can contact his neurologist.

Best wishes,
Barry

[Boiler68]

Hi folks

My husband has ALS and although reluctant to take medication he's recently started with amitriptyline for saliva control. Also takes rilozule. We've got a gp appointment on Monday. Can I ask is baclofen the recommended drug for back spasms? He's been in agony over Christmas; it comes on very suddenly when he's upright and it makes him gasp with pain and he's doubled over with it when it occurs. Just wanted to know what was best, dosage, and if ok to take with the other things. From what I've read on here and with new gp I don't have much faith in the gp being clued up on this. Thanks xx