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Sunday, January 27, 2008

High Tone

Ok - I have to ask my readers who have personal experience with this some questions that I feel might be totally invading your personal space about spasticity.

Apologies in advance.

But I am asking so I can help Ellie with hers. I need to understand. I worry about her experiencing pain. Because you see, increasingly her legs are getting tight. They are suddenly scissoring like mad and I feel it creeping up her legs to her waist. What to do?

So here are my questions:

What does high tone feel like? The real question is - does it hurt?
Followed by, what things have you found ease it, help it, relieve it in anyway? I understand where it comes from but I wonder if epson salt baths, arnica, or anything else that soothes tense muscles will help.

And for anyone who has had experience with AFOs, braces and the like, do your feet and legs with the high tone feel better in them or out of them?

Ok - there, I have asked. Any thoughts on this will be entirely welcome.


Beanie said...

My high tone does not hurt for the most part I notice it the most at the end of the day when I’m trying to fall asleep. Its harder for me to get relaxed enough to fall asleep. I wake up a lot during the night trying to get more comfortable.

Followed by, what things have you found ease it, help it, relieve it in anyway?:
Warm baths have helped me a lot. In general I feel better if I’m warm.

And for anyone who has had experience with AFOs, braces and the like, do your feet and legs with the high tone feel better in them or out of them?
I have AFOs and sleep in casts at night. I feel better in my AFO, when my legs relax my feet don’t touch the floor well. When I relax my feet don’t go into the normal relaxed positions. It feels better to have my feet supported unlike when my legs and feet relax and are just hanging in the air. I have an old sore on my heel that gets red often but is not painful.

Emma said...

Is spasticity painful? Not exactly but kinda. I know - no help there!

AFO's - it's a long time since I've worn AFO's, calipers or whatever so I can't really remember. But I have been thinking lately that it might be good for me to get AFO's again - my thought being that having my legs stretched out overnight might mean less spasticity overall. I do remember however waking up and being stiff for a few minutes after the afo came off each morning.

I have high spasticity today and I wouldn't say it hurt but that I'm "aware" of the feeling in my legs. But sometimes my spasticity manifests in other ways (positions of my legs etc) and that can get sore which is usually because I have little support in those positions and after a while my muscles start to complain.

I am doing a really poor job of explaining this clearly, sorry!

Kathryn said...

Beanie and Emma - thanks so much. Your comments are REALLY helpful in helping me understand and figure out what to do.

Thanks so much!!!!!!!!!!!!!!

Jim said...

I have Multiple Sclerosis and spasticity is one of my main symptoms. It is not really painful but there is some pain. The pain has to do with muscle tightening or cramping that causes me to slow down to ease the pain until it slowly goes away.

Its really hard to explain but I hope this helps.

Emma said...

I'm trying to write a post describing what CP *feels* like at the moment. And I just had another thought that might be relevant here. I've actually been told that if it wasn't for my spasticity I probably wouldn't be able to do standing transfers and/or walk. The view being that my muscles are very week (I assume they meant hypotonic ?) and I have learned to use my spasticity to force the movements. That's been a bit of a damned if i do and damned if i don't situation for me though.

Funky Mango said...

I have spasticity due to my MS. I feel in a way there are two types of spasticity...there are the spasms, which ARE sore...that's where I have sudden jerks, cramps, that sort of thing. And then there's the general stiffness. That's not sore, more a bit uncomfortable than anything else.

I have medication to help reduce the spasms, but as Emma suspects, I've found that as the spasticity reduces, so does my ability to walk.

From your description, it sounds like Ellie has the tightness / stiffness rather than the spasms. What helps me is hot baths, drinking tonic water (because it contains quinine) and gently stretching the limbs out so the muscle is stretched.

David said...

I finally got my post up over on my blog, Kathryn. I hope it will be helpful.

Anonymous said...

My spasticity does not hurt usually--it is more like a prolonged gentle sneeze in that my body is just gonna do it without my conscious control and it feels different when I'm spastic than when it isn't happening and it can be distracting or just neutral. The only time it hurts is when it's been going on and on and I become tired and sore and I can't make it stop. That isn't a sharp pain, but it can be sort of terrible in its unrelentingness especially when it interferes with sleep.

There are several things that help my spasticity. Warm baths, heating pads, hot days... all of these help. So does positioning myself in ways that break up the pattern of my tone. For me, I have a lot of extensor tone, so staying bent at the hips and knnes helps. Another thing that sometimes helps is jostling myself to "set off" worse tone, followed by a slow forcible bending to "break" the tone. Often that will buy me a few hours of little to no spasticity. Having my weak limbs be well supported also helps--if I let them just dangle that often sets me off. But the very best thing for my spasticity is daily yoga. I've had to modify nearly all the poses, but now that I've gotten it worked out my routine does wonders for my tone.

I feel that my AFO makes me somewhat stiffer/achier and my tone sometimes "fights" it which makes me worry about my skin. However, if I did not do yoga I would use it because the places where I let myself get tight and inflexible have had much more spasticity and achiness over time. It is worthwhile to preserve the range for that reason, apart from functional considerations.

Hope that is useful.