Stiffness in joints and muscles

[nunhead_man]

Good morning,

My acupuncturist was worried this week about stiffness that was developing in my left hand side (Shoulder especially) and I have been worried separately about the stiffness in my fingers that does not allow me to fold them into my palm.

So I was wondering about this stiffness business and whether it was just because I was not using myself enough or whether it was a feature of the type of motor neurone disease that I have.

A quick search got me to here;

http://forum.mndassociation.org/showthread.php?6413-PLS-Day-at-the-Oxford-MND-Centre

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
"......Predominantly UMN ALS
........................
Limb onset is typical. Slowness of movement, spasticity (stiffness) and some weakness of muscle strength will be noticed. Briskness of reflexes will become apparent. Walking gait will change as specific muscle groups weaken and often foot-drop is an early indicator of leg involvement. Over years muscle weakness will spread throughout much of the body, but what distinguishes this disease from pure PLS is that muscles will waste during the progression of the disease.
........Breathing will continue to operate for many years and maybe decades."
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

So firstly, this seems to be me, although my onset is arm, not leg.

Secondly, I am wondering if I am doing myself any damage by trying to get those stiff joints moving all the time?

Best to all

Andy

[Ellie]

Hi Andy,

As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching.

So, yes, spasticity is a normal part of ALS. It is more severe/bothersome in PLS & UMN Dominant ALS.

Antispasmodic meds - primarily Baclofen - reduces muscle tone making muscles more pliable and functional BUT getting the dose at the sweet spot can take a few attempts - you need to preserve enough tone to preserve function, whilst lowering the tone enough to facilitate movement.

Range of motion (ROM) exercising is important to keep joints moving and stop them swelling or seizing up. ROM of any area, particularly hands, fingers, feet and toes, can include massage with oil (always towards the heart)

Swimming or hydrotherapy is particularly good for spasticity, but any low impact gentle exercise is good, providing you don't overdo it!

Love Ellie.

[livingwithmnd]

Hi Andy,

As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching.

So, yes, spasticity is a normal part of ALS. It is more severe/bothersome in PLS & UMN Dominant ALS.

Antispasmodic meds - primarily Baclofen - reduces muscle tone making muscles more pliable and functional BUT getting the dose at the sweet spot can take a few attempts - you need to preserve enough tone to preserve function, whilst lowering the tone enough to facilitate movement.

Range of motion (ROM) exercising is important to keep joints moving and stop them swelling or seizing up. ROM of any area, particularly hands, fingers, feet and toes, can include massage with oil (always towards the heart)

Swimming or hydrotherapy is particularly good for spasticity, but any low impact gentle exercise is good, providing you don't overdo it!

Love Ellie.

What is the average life span with UMN predominant ALS/MND?

Thanks!

[Ellie]

Hi there and welcome to the Forum.

Unforately there is no "average" for the slower progressing UMN Dominant ALS, sorry to say...

Are you long diagnosed and how has your progression been to date?

Often past progression is a good indicator of what's to come, so it may take a few years to build up a picture of your disease.

There are no hard & fast rules with MND, that's the problem...

I hope your overall health is well and stay safe, i.e. try not to fall

Love Ellie.

[nunhead_man]

Good morning Ellie

As you know, ALS affects both the UMNs and LMNs - (UMN) upper motor neuron degeneration generally causes spasticity (tightness in muscles/high muscle tone) and (LMN) lower motor neuron degeneration generally causes atrophy (muscle wasting) and twitching - etc

Thank you for putting all that together for me -- I guess I knew part of that. But putting it all together in that way was very helpful.

I think my neurologist made a mistake by suggesting my left hand should be kept in a splint overnight to avoid damage as that is meant the my left hand has atrophied rather more than it might have done.

Concerning gentle exercise I think I overdid it a bit last night in the sense both my hands got very cold while we were doing Dr bike session as shown here

https://southwarkcyclists.org.uk/events/dr-bike-under-peckham-arch-13/

But I do agree with you the gentle exercises is good it makes me feel better both physically and mentally - latter well-known, of course, as in e.g.

https://www.theguardian.com/commentisfree/2017/dec/18/anxiety-depression-cycling-cbt

Best wishes

Andy

[matthew55]

Personally I do no excercises yet other than going up and down stairs and trips to the kitchen. 😉🤗😃😍xx

[Lynne K]

I had surgery last year on my leg, and it caused a lot of problems.

Hi, when were you diagnosed and what typed of mnd Chris? I hope that the consequences of your leg surgery eases eventually xx

[Mary C]

nunhead_man
Hi ,I have stiffness( mild pain on stretching) in right shoulder.
my dominant hand has one finger that sticks out and another that has dropped down.The left hand is going the same way too.Using a knife is difficult and hand tremors when trying to.
My legs are heavy and I just about can do transfers but worse by evening.Worse leg gets pain behind knee at night.
I can’t easily turn in bed to the left side either.
I exercise my legs on the bed twice daily and do arm exercises sittting on the side of the bed.
I think exercises help but who knows?Off to do my exercises.
Have a good day.
Mary

[denise]

Mary I'm with you I don't know if exercise helps Stephen or not. He has 4 stairs that he easily moves up and down so I feel he gets some movement in his legs. Our physio admits she doesn't know enough about mnd to advise. At least shes truthful. Stephen was assessed at multidisciplinary as having good leg and core strength but even a carrot made of baccy couldn't get him far on Sunday (to be honest it is a steep gradient) and I had to get him home but the worst part was having to climb over him to pull him up the stairs. Don't think the stairs would be a problem if the tred was wider and the stairs less steep.

Love and hugs
Denise xxx

[Ellie]

Whatever about doing 'exercise' for exercise's sake, I cannot stress enough how keeping joints and limbs moving, either actively or passively, will stand to you in reducing pain at a later stage. xx

[denise]

I will chase him round the front room. I'd say with a rolling pin but I haven't got one. 🤔

[Ellie]

denise At least your joints won't seize up. 😍

[Mary C]

Hi Denise ,are the stairs external to your apartment shared ?its a concern as if Stephen's mobility continues to deteriorate then he would be housebound wouldnt he.Are you looking at other housing options or going to stay put?
Best wishes
Mary

[Heather R]

nunhead_man My physio gave me some sort of putty and exercises to exercise my fingers and hands, like Ellie says to move them around. I agree with you with the biking, I really miss it, and well done you doing Dr Bike, a great gift to others cyclists x

[denise]

I'm thinking staying put. I'm worried about his dementia. He was asking about where our house is in UK. I don't know what he's talking about. The house we used to own before we left the UK or where we are in Plymouth. He knows this flat. It's been in our family for 20 years so he knows it. The wrench from Portugal was a big upset for him and giving up driving was another blow. I don't think he could cope with another move. I've had no help with this part of his illness as yet. I'm keen to keep him as stable as possible. 😕