Heat and spasticity

[Zante]

Hi everyone. Does the hot weather make spasticity worse? During the winter colder temperatures my legs and balance were terrible and way worse when I was cold. So I longed for summer. Now that its boiling hot my legs have gotten worse again the last couple of weeks now its really hot. I don't know if its temperature related or if this is progression? And does mnd impact the muscles at the back of the head and down into neck? I am afraid to put everything down to mnd but the back of skull muscles are feeling really tight? Does anyone else have similar? I have felt some changes last 10 days or so and didn't know if weather can have an impact? I am not on any medication yet but have the mnd nurse soon. Thanks.

[Arcadian]

I have arm and some leg cramps and finger spasticity particularly in the cold, as well as bowel and bladder spasms in the cold. I struggle with heat, but just feel uncomfortable, ill, faint with it.
But, it's been for a few years longer than present MND diagnostic journey (I have other confirmed autoimmune and intestinal problems / Crohns). Although I don't think it is precisely connected for me, I do find that recent (18 months) MND type symptoms like fasciculations and limb ache do seem reduced in the warmer weather. Activity and exertion in manual tasks seems improved with a couple of days of warm weather.
(Apologies for the above only being personal anecdote).

I thought I had a link to a specific MND / ALS peer reviewed study that mentioned thermoregulation, but can't remember if it was a .pdf download or a bookmarked journal page. It was in a wider neurological context though, but had mention of MND relative to thermoregulation.
I'll try and find it...

[Zante]

Arcadian I was going through the diagnosis stage last summer and my legs were definitely better during 2021 summer compared to now so maybe it's progression for me this summer. Last winter was bad and then it improved slightly during mid May onwards now bad spasticity again. Am shattered this week so might be more the tiredness. Heat is sapping me this year. Never happy!

[Ellie]

... my legs have gotten worse again the last couple of weeks

In what way are your legs worse Zante?

... does mnd impact the muscles at the back of the head and down into neck?

The sad truth is that ALS/MND can affect any voluntary muscle in the body.

[Zante]

Ellie they feel a lot tighter and rigid. They give out on me often when going down steps stairs etc and a downhill. It's worse also when standing still when all of a sudden the thigh jerks forward and almost makes me fall over. And feel weaker even though no atrophy that I can see. I tried to get up a bank which was only small and couldn't put my weight onto one leg to get up it cos it wasn't strong enough and I got stuck and had to wait around for another dog walker. And feeling so tired all of a sudden. Sorry nothing compared to most. X

[Ellie]

It might be time to start taking antispasmodic meds which lower the 'tone' of the muscle, effectively making the muscles more pliable. Baclofen is the most widely used antispasmosdic - I take it 3x daily, without it I'd be concrete...

Are you due an appointment soon or have you access to a Community Physiotherapist? If not, maybe your GP?

Some people find CBD Oil helpful or perhaps magnesium supplements but, first off, somebody needs to assess your movements to confirm it is definitely spasticity.

Sorry nothing compared to most.

Whoa!! We'll have none of that - every diagnosed person on the forum had early stages and we were all at your stage, or still are, so *no* apologies needed or warranted 😘😘

[Zante]

Ellie seriously Ellie you are a diamond. I mean that. The mnd nurse coordinator is coming next week and it's first appointment. Got postponed before as poor lady had covid. She did mention on the phone she wants to discuss medication next week. Yes the referral was done for OT and Physio by the mnd care network am now under. I had a call from them last week and when Physio back from annual leave she is calling to arrange an appointment visit. It feels like the rigidity in legs ( consultant said increased muscle tone in both legs) is making them shoot forward above knee and give out on stairs as it doesn't feel weak. I am worried an antispasmodic would make me all floppy?! Xx

[Ellie]

I am worried an antispasmodic would make me all floppy?!

The dose will be tailored to your level of spasticity - it might take a few days to find the 'sweet spot', you start off on a low dose and work from there.

seriously Ellie you are a diamond. I mean that.

Thank you, that's very kind xx

[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

[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?

[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

[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

[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]

Ellie an improvement on my jolt forwards explanation

[Hope]

Thank you all, your explanations are appreciated. xx