Hi all,
Can anyone recommend anything that might help me , I’ll be speaking to my MS nurse this morning.
I’ve been taking Baclofen and Gabapentin for stiffness and spasms for a few years now and they pretty much work quite well, except for feeling a bit stiff first thing in the morning.
That is until the last week or so, I’ve been waking up so stiff that I can’t even sit myself up in bed, full body spasms so bad I’m in agony and very shaky legs.
It’s been taking over an hour to get out of bed even with my partner’s help, and with a very dodgy bladder this isn’t going to end well.
I really can’t go on like this.
June x
Hi June, I feel for you, because this is something I suffer with, I stopped taking Gabepentin, which for me was for the pain, because it was no longer have the desired effect, I still take Baclofen, 65mg a day, I was on 90mg but neuro said this adds to the fatigue, so I reduced it, but I now feel that’s not working like it did and the stiffness can be really painful at times. Sorry I’ve no answer for you, just wanted you to know you’re not on your own.
Jean x
Hi June, I know what a pain this is. But since I lost all mobility, the stiffness isnt anywhere like as bad.
But baclofen did help. The only thing to watch is that it doesnt make your muscle so loose, that it causes falls. This is how it affected me when I took the dose too high ie 70mg a day.
Have you tired massage…or even a tense machine may help with the pain.
Take care
Boudsx
Thank you Jean, much appreciated 
x
I’m on 45mg a day , maybe I can try and have that increased.
Hi there Bouds ,
Unfortunately I don’t think massage would help, even just my partner’s hands on me when he helps me up set me off.
I’m worried about what is going on , a week ago I was out shopping , managed to walk the dog a little, all with my rollator, but still I’ve been doing really well , I even helped to move a small shed two weeks ago.
Now I can barely stand , even with my partner’s help.
My urine test came back clear today, so I’m at a loss. My MS nurse wants to see me on Tuesday, but I honestly don’t know what they can do.
I’m just feeling very down right now.
June x
Apparently June the top dose is 100mg a day, I went right up to 90mg, but fatigue was awful, so reduced it, Bouds is right about the effects it can have and I was adviced to increase my dose by 5mg a day, that’s 1/2 a tablet, also to leave a least 1 week in between increases, not this worked great for me, no adverse effects, but its not the same for everyone, good luck.
Jean x
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I take a mix of baclofen and tizanidine
The MS nurses at the QE hospital referred me to a specialist spasticity clinic.
I was taking quite a high dose of baclofen and that was making my fatigue worse so they suggested dropping the baclofen down and adding tizanidine - its working quite well at the moment.
Hi
I get botox injections into spastic muscles in both legs This turns off the spasticity and lasts for around ten weeks.
I get the injections 3/12
.I am also taking tizanadine
They didn’t want to do this for me,said it created too much weakness…who knows, different hospitals, different ideas.
Jean x
Hi June
Ooh I so know what you mean re stiff legs and pain!
I’ve had MS for 27 years but the last 5 years has been the worst!
Like you I wake up in agony and struggle to get moving.
Have taken x 3 baclofen for years and the MS nurse recently suggested I increase my dose to 4 but she also said she’d put me forward for some physio.
The Physio came round my house 3 weeks ago we talked about my stiffness and difficulty in walking. She came back a week later with a schedule of relaxing and stretching exercises!
I’ve been doing these exercises for a week now and it’s so helped with the pain! I’m also moving a bit better!
Ask your MS Nurse about having some physio it could really help you too!!
All the best Sue x