Heat and spasticity

[Zante]

Ellie thanks Ellie. Makes me sad reading how you describe yourself. I hate this disease and am only just in the beginnings. I don't know how you manage to get through everyday and with a cracking sense of humour as well! Admire so many people on this forum.
I don't know how I fell I didn't trip on anything at all. Felt like my legs locked for a moment but my body kept going. Since symptoms began I have had numerous falls resulting so far in broken ribs, concussion, broken eye socket, broken outer hip bone and broken hand. I am now the proud owner of a second hand walking pole!! So am hopeful the list will end there!

[Ellie]

Oh Zan, sorry to hear that you fell 😟

Think the spasticity is the upper motor neurons involvement.

Yes, that's right.

My body is a tale of two halves - my legs are as rigid as steel poles, my arms are as floppy and almost as thing as cooked spaghetti - a good example of UMN v LMN damage.

Here's to a speedy recovery 🤗🤗

[Zante]

shelly21 thank you. I really don't know if u get twitching with pls to be honest. Mine jump around here there and everywhere. But aren't bad enough that they keep me awake. Still haven't noticed any atrophy.... and am not about to get a tape measure out to do some comparison as would rather not know and am sure our limbs could be naturally different anyway!
yes like u said it's so upsetting when u realise there is yet something else u can't do. I found that really hard today. Trying to still come to terms with it all and I don't think I properly have yet.
u got any plans for a cornwall holiday?! Am hoping to go for a break away with my dog in September before it becomes more difficult. I think I hoped the spasticity would have disappeared for this summer or gotten easier more realistically but it hasn't. Thanks for everything. Take care. X

[shelly21]

Zante don't apologise for what are real concerns. My issues started years ago and one of my team said it was possible pls gone into ALS. But right now its pls for you. Its a battle not to remain in the here and now.

Like the chemist situation, it is deeply upsetting when we realise its another symptom. I try to mourn it quickly and then do something I can do.

x

[Zante]

AngieCanuck thanks Angie it's so frustrating that medication always seems to come with side effects!
unfortunately I think mine is progression because it was all much better in the warmth last summer. I have the mnd nurse next week so will discuss medication. This morning I burst into tears in the chemist as I couldn't sign my name to collect my repeat prescription ( non mnd meds) . Really upset me something so small.
yes the twitching is odd sensation and is a difficult one because I personally always worry its not pls after all and is als. Sorry just me panicking.
I hope u can make some progress getting the balance right with the medication so that u r able to function daily but also address the need for the medication as well. Thinking of u xx

[AngieCanuck]

Zante, not sure but sounds like progression in your case. I find heat helps so much with my spasticity. My muscle cramps are eased with multiple heating pads, loosening me up. I have heating pads in nearly every room in the house!
I have noticed more and stronger fasciculations since it’s become hot outside. I even had some lately that looked like worms wriggling under my skin. Previously my fasciculations were a few pulses/twitchy jumps in one place and then moved to another place. I found Baclofan didn’t make me feel floppy, and helped so much, but I had major allergic reaction to it (I’m told is rare) and neurologist ordered me to stop taking it. Now I’m taking Tizanidine and it really knocks me on my a**! I haven’t increased dose as prescribed because I would be unconscious every afternoon, and incapacitated (which seems like 1 step forward and 2 backwards, and not effective when parenting an 8 year old, lol)
I hope you get some relief with the Baclofan.
xoo
Angie

[Zante]

It does seem to affect everyone so differently. Think the spasticity is the upper motor neurons involvement. I know what u mean about high steppage! I fell again today. No broken bones this time but am nursing a sore everything! Gotten me down today and so hoping tomorrow will be a better day x

[Olivia H]

It's such a strange condition, with my walking worse in warm weather, although it is nice to have warm legs for once.
I'm assuming I'm at the other end of the mnd spectrum, very little spasticity, but floppy toes which I can trip over easily. Makes for high steppage walking 😑

[Hope]

Thank you all, your explanations are appreciated. xx

[Zante]

Ellie an improvement on my jolt forwards explanation

[Ellie]

Hope I would describe spasticity in ALS/MND as having limbs which are hard to move fluidly and easily. This is because the muscles are in a state of permanent contraction - the tone in the muscle is deemed to be high, which is spasticity. For example, bending a knee isn’t a smooth, fluid movement but there is actual resistance in the muscle, making for a somewhat stilted movement.

It isn’t weakness per se, even if the limb doesn’t have much function.

This spasticity can give ‘false strength’, particularly in the legs, allowing them to weight bear simply because their legs are rigid, but they may not have much, if any, actual leg movement.

Of course, there are different levels of spasticity, ranging from mild to severe.

I hope this gives you an idea on what spasticity means for me. Other people have their own experiences. xx

[Zante]

Hope you haven't jumped in at all!!.
I am far from an expert but the consultant said I had increased tone in both legs. He tried to get me to relax legs and I thought I was but apparently they weren't. They aren't bending properly. So my calf muscle doesn't bend if I try a squat position. The thighs don't seem to bend slowly to go down stairs so kind of jolt forward. My baby fingers also stick out oddly and wrists feel stiff. I have total function but they don't feel strong at all in fact legs feel wobbly. If I put my elbow onto thigh it rolls off cos thigh muscle is so hard. Sorry I am struggling to explain it but it's difficult to put into words. Basically makes down hill lethal ! Xx

[Arcadian]

Hope my middle two fingers on either hand uncontrollably curl into my palm and sometimes thumb curls in too, or on its own.
Sometimes little finger extends as far out as it can.
It's painful, but a broad spread of numb pain.
It's difficult to wilfully move it from a locked position, by mind or even other hand pulling.
It happens to me randomly.
I think left calf on extending ankle is now possibly doing similar once or twice, but not sure if that is just a cramp

[Hope]

Sorry for jumping in here, but what does spasticity feel like? Is it a tightening of muscles or weakening of limbs? And what is increased tone? My legs and arms have definitely weakened but would I know if I had spasticity?

[Zante]

Ellie thanks. Makes perfect sense. Am nervous about first appointment. But I also know they are there to help me. Its harder to bury head in sand when have to face it all. Thanks so much xx