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Laila
29th August 2013, 08:57
At the moment Im using an opiate painkiller dihydrocodeine for muscle and joint aches and pains, and diazepam as a muscle relaxant to reduce spasticity. In the mornings in particular my muscles are very stiff, range of motion is poor, and fingers are curled, so I use the meds and do some range of motion exercises to help. My OT has suggested using hand splints at night to reduce finger curl, but then the problem becomes of having to remove them when needed which I can't do on my own. It seems that it is trial and error on my own at the moment to find what meds work best and when for symptom control and to keep independence. One thing I haven't tried is baclofen, but I am wary of adding another med into the mix, as they all have side effects. Any advice on what others find useful for muscle stiffness, aches and pains and range of motion appreciated. Is Baclofen any use in this? Thanks Carol

Cookewitch
29th August 2013, 09:03
I don't know much but my Dad was prescribed Baclofen for his fasiculations. As it is muscle relaxant it just made him feel weak and even more fatigued than he would feel normally. He therefore made the decision to stop taking it and put up with the fasiculations.

As we know though everyone is different and you mind find you respond better. Hopefully somebody else will have some info to throw into the mix to help you make your decision :)

pete
29th August 2013, 11:27
Morning Carol,

I have to say as I don't take any meds other than Riluzole and a couple of others to do with reflux problems , I tend to use stretching exercises to help me keep some mobility, but that's easy for me to say ,not so for yourself suffering pain , I have heard of baclofen but like most drugs it comes with unwanted side effects ,and it was offered but I refused it . And yes the use of splints on your hands is fine but awkward as you know dealing with them without assistance , I wear one on my right hand to keep my little finger straight ,and that's fastened with Velcro so not to difficult to fix and remove, I hope you find a way of relieving the pain soon . So other than the stretching the affected limbs every day, sorry not much use .

Pete

john
29th August 2013, 11:59
Hi Carol,
Irene used Baclofen but found the relaxation part weakened her ability to stand which was important to her for transfers. She stopped using the drug and her legs were able to support her until 2 days before she died. She used to have aromatherapy from the local hospice and used voltarol for targeting specific pains.

John

Terry
29th August 2013, 12:02
Your up early Carol;
I do use diasipan or Tamasipan on the occasional night to help relax and sleep. I have been taking Backlefen for three years, I now take two at night but i have been on eight a day. They don't make much difference to me, maybe because my muscles are partly stiff due to exercise. I think that taking eight made me a bit tired. If you can relax parts of your body it helps. I have to relax parts of my arms and hands first before I can have a go at my legs.
I like Pete have splints and a wondering little finger on my right hand, must be years of bike riding. If you have two splints made up and wear one at night you should be able to take it off ok. You may have trouble getting them on though. I don't use them much but have various straps for my little finger.
I don't generally take pain killers but have done recently as I have had back problems but it's getting better.
Sometimes supplements help, they did improve my strength and gave me more energy.
Hope that you find something to lessen the stiffness, most things you will have to take for three or so weeks before they have effect. There is another drug similar to backlefen also.

Love Terry

Looking at Johns post reminded me, at my hospice I have a foot massage, it feels like every time she applies pressure she it bruising me but afterwards it feels great being able to move my feet around.

roy
29th August 2013, 13:29
Hi. Carol

Been taking Baclophen 4 months used to wake up in agony with spasms,this has stopped in the last 3 weeks have
Like you progressed quickly,motion,stiffness,curling and speech.Im in a similar place to you.My daily goals
Going to the loo independently as with eating and using a remote.the iPad is a challenging time with clawed hands.
Apart from that all else is absolutely average.

Roy.

Ellie
29th August 2013, 15:38
Hi Carol,
I’m further along in this disease than you and here is what I’ve found.
I take a combination of Baclofen and Tizanidine for the spasticity. I have titrated the dose to balance the spasticity and muscle tone, which is important to maintain functionality. If I’m tired, it makes me a bit drowsy for about 30 minutes, but not enough to sleep. For me, these meds have given me a better quality of life. Once I settled into taking antispasmodic meds, my pain lessened and I reduced my opiate based painkiller to an occasional Dexketoprofen.
I wear hand splints at night, velcro is beyond me so someone else takes them off in the morning. I recommend them as it is wonderful to have straightened fingers!
I do weekly hydrotherapy which is fantastic at managing pain and maintaining joints etc. Highly recommended, grab it if you can!
I had to get to know this new body of mine. It took me a while to realise that a lot of my pain, particularly in my shoulders and hips, was positional and could be negated by stretching and movement, as opposed to increasing my meds. And yes, it is difficult to know what to take and at what dose
Good luck,
Ellie.

Laila
29th August 2013, 17:53
Thanks for everyone's advice., much appreciated.

Terry, I have to get up early to let the dog out, otherwise my carers have some floor mopping to do, but apart from that Im back to bed as soon as for a while longer.

Ellie, thanks for info on tizanidine and getting the right amount. Im beginning to think now that my combination of opiate painkillers and diazepam might be better replaced by those meds you mention but getting the right dose, to balance strength and flexibility, trial and error I suppose, as John and Cookewitche point out the weakness as a side effect. Ellie, what combination dosage works best for you if you don't mind sharing (or PM) I need to talk this over with my medical team. Im finding the range of movement exercises helpful, though cant get hydrotherapy. Splints sound good. It's my index and second fingers that claw, so have to use my thumb and little finger to type. I guess my carers could put them on at night and take off late morning, I will discuss with OT. I need some hand function at night though and first thing morning (toilet, food and drink etc) and don't want to lose that. I can't put on gloves so doubt I could put splints on and take off myself.

Roy, sounds familiar place as me, struggling to keep independence. I don't get bad muscle spasms at the moment, but got bad cramps early on.

Thanks everyone,

Carol

soniamm
30th August 2013, 05:33
My son takes 9 baclofen a day along with 2 quinnine which takes care of his cramps, he has also started on low dose amytriptiline ( may not have spelt right) although this is commonly known as an antidepressant it is also used for nerve pain and sleeplessness. He now sleeps much better and has found the combination of meds is now working. Hope it helps.

Sonia

Laila
31st August 2013, 10:59
Thanks Sonia,

Carol

phred bear
31st August 2013, 17:59
Hi Carol,
Been wondering if a partial splint method I saw in the California rehab where Robin was treated after his injury may suit you. They used to cut cardboard to shape for how ever many fingers or whole hand they wanted to treat, wrap it with duck tape to stiffen then simply micropore tape it on, for many it was easier to manage than velcro and still left movement in the hand if only used for fingers. Hope this helps.
freda

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