Help for night-time stiffness?

[Valley]

My husband Tim really struggles to sleep at night due to unbearable stiffness in his whole body. Sadly he is quite a way down the horrid MND road. He is now taking Baclofen medication but as yet there has been no change for him. If anyone has had the same experience do they have any tips on what might help the situation.

[Ellie]

Valley How many mg of Baclofen does Tim take at night?

My spasticity is worse in bed and I often take Tizanidine, in addition to Baclofen - it also lowers spasticity but works in a different way to Baclofen.

Another thing I do is to use an electric blanket, so I'm lying on a warm surface, further relaxing muscles - I always get into a warm bed, if I get cold, my muscles stiffen even more. The blanket is on a low heat, on a timer plug, and comes on intermittently throughout the night so I don't end up bathing in sweat! xx

[Ellie]

Another thought: if Tim is not comfortable in bed, that can impact rigidity, so maybe look at that aspect too, especially the mattress. xx

[Valley]

Hi Ellie many thanks for your reply. I will let Tim know and he can then enquire about the Tizanidine. Your thoughts on warmth make a lot of sense too. Take care x

[Patw]

Ellie your an amazing individual x so helpful x

[Music man's wife]

Chris has recently started taking Clonazepam, he's having better nights. Still takes baclofen.

[Ellie]

Patw Thanks mate 😘 I still think of you any time I see a mention of DS1500 - I don't suppose... ???

[Ellie]

Chris has recently started taking Clonazepam .

Music man's wife It's not compromising his breathing, is it? My lung function was deemed too poor for it to be prescribed without some potential 'unintended consequences' 😏

Glad he's sleeping better. xx

[Patw]

Ellie getting that form was the a right pain in the butt, once I got it tho everything fell into place. My insurance company even paid the mortgage off early so took a lot of stress away only thing I can’t sort out is the weird leg reactions and sensitive feelings in lower regions, tbh tho I have not taking no tablets for months stopped everything and started cbd and cannabis edibles at night now no saliva anymore great night’s sleep and I regained my cough so just trying different things x

[shelly21]

Patw that's great news re pip and the mortgage. I've read your posts and like you I live in a big city and struggle with the medical departments. Are you bulbar onset type?

[Patw]

shelly21 Yes also bulbar dx in March 2021 but started slurring March 2020 still speaking just 🤦♂️, eating but had a pig just in case , still walking like bambi and hands are just about useful, but I’m still smiling x hope your well

[shelly21]

Patw similar re situation. Legs very poor so using wheelchair. Lucky that one hand arm etc is still strongest.x

[Patw]

shelly21 I’m really struggling excepting using a chair,, I know everyone says once they got it they got a new lease of life but I just can’t seem to get my head rite

[Ellie]

Patw Whoop whoop for finally getting the DS1500 👍👍

Glad to hear that CBD & the full monty are working so well for you, apart from the restless legs.

We had our mortgage paid off a few months after my dx and I can't stress enough the immense relief that brought!

Re the wheelchair: it's hard to get your head around for sure - no way to sugar coat it, it's so in-your-face, a big fat statement of disability 😟

The more you use it, the more you accept its benefits, the less of a monster it becomes. 😘🤗

[Patw]

Thanks Ellie, I will get my head round it soon x