Late onset spasticity

Hi everyone: Newbie here. I had my stroke Aug.2, 2022. I was recovering beautifully in PT and OT for about 4 months and graduated with flying colors. two months later, I start getting spasms in bed and a funny thing… I let out a big yawn at every spasm. The spasticity built up strongly on right side from my face, down the arm, hand, hips and leg. I have had a second MRI to rule out another stroke. The result showed no second stroke. My therapists didn’t tell me I might be in that group of survivors 1/3 of whom get this. I’m pretty frustrated and stretch and strength train two hours every day. Sad thing is I’m a noted artist and I play piano in a band. but…the hand is just too stiff to hold a paintbrush or tickle the keys.
Muscle relaxers don’t make a dent. I may also have to go back to using a cane which I haven’t needed in months. Now afraid of falling. I just need to vent with you kindred spirits. GodBless.

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Hi @Outlander just wanted to welcome you to this forum and so sorry for this bad turn in your recovery. You have at least one kindred spirit here in @pando, I believe he’s a pianist too :slightly_smiling_face:

I only have a vague remnant of this spasticity in my right arm along with foot drop but I only had a mild stroke. There are others on here, included in the post below, who have more experience of what you are going through. You might want to check out that post as they’ve been experimenting with electrical devices to combat the effect of their spasticity.

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Emerald and Loshy: Thanks so much. I understand that The Tens machines are for those who have no mobility in areas? I can still move my limbs but they feel filled with cement.

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Sorry, I think I’ve mislead you there because TENS is more for pain relief. My device is combined TENS/EMS
At the moment I’m just concentrating the EMS for my foot drop but even that has had a positive result for the slight pain I have in my outer thigh. It’s also great to just massage the muscles in find, it can really pummel them for when needed :smile:

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Another one might help is a good sports physiotherapist to down your spine, hips. I’m talking about someone who is not afraid to really dig into those muscles enough that if actually hurts. I say the spin because that’s where all the nerves stem from and the spine will get out alignment from the spasticity, could press on or trap nerves.

Thanks Loraine and Emerald. My cousin is a deep tissue massage therapist. I should give him a call.

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@Outlander welcome to the forum. Sorry you’ve had a stroke & that after such a positive start to your recovery you’re now suffering spasticity.

I don’t have this myself but I know some people have tried botox for it. Might be worth a look.

Hope it settles for you soon.

Ann

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Ann, thanks so much, but I can’t have botox due to the spasticity affecting my whole right side.

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Hi Mahoney: GodBless!

Hi outlander,

I am a violinist, and suffered my stroke 7 months ago.
I had a massage yesterday, and noticed that my muscles & tension (on the stroke-side) are all connected from head to toe.
At the moment either my Psoas or Glute muscles are tense and I can’t switch them off… there’s a tight spot which is playing havoc and making my walking very stiff.
I also have paraesthesia, and still am experiencing improvements in sensation. Not all my stroke-side has come back, yet. My movement is good ; I got help in remapping with the help of a Chinese acupuncturist. My quads were permanently switched on until a month or two ago, when they came back online. Same happened to the muscles underneath my thighs… now I guess it’s time for my glute to relax, or switch off. I find it harder to switch a muscle off, rather than on.

My stiffness, for sure, is related to spasticity, but my body is always changing, especially as new areas slowly regain sensitivity.

I’m sure I’ve not helped much, but in case you’d like to talk more about it, please feel free, best of luck, best wishes, Roland

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Hi Outlander-- The word “spasms” in bed. caught my attention, as I had leg spasms when I lay down at night after my stroke 4 years ago. The only thing that alleviated them was CBD oil drops under the tongue ( about 20-40 mg for me). Ingesting CBD helps many people, but others not so much. Just wanted to mention it to you. :heart:Jeanne

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As you say Roland…all is connected and each part affects the other. As I sit here typing I have no feeling in my right glute and my neck is tense and numb just from leaning over slightly to view the keyboard.
I’m hearing more and more about acupuncture. Too bad insurance won’t cover it. Someday…you on the violin and me on the keyboards a beautiful duet. All the best to you.

Jeanne: I have the gummies and also capsules. They did nothing at all for me. Maybe I’ll try the Drops.
Thanks much.

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I have to edit my first post: although stiff I can hold the paintbrush if I help with the left hand, and playing the piano, my left is a big help while playing klunky chords with the right. I don’t give my beloved left hand enough respect.

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But at least you are going through the motions, that’s the important thing. Keep it up as a daily exercise, repetition is the key here.

Shwmae @Outlander, I can’t really comment on spasticity, I do get muscle cramps and the like. But looking at your timeline, the spasticity has begun six months after the stroke. Those first six months can be misleading for many stroke survivors. The brain is in a state of self-repair, after six months that self-repair winds down and the brain is left with remaining damage that requires long-term rehabilitation to rectify or improve. This is the plateau many stroke survivors experience. With gentle and persistent rehabilitation, the brain and body should begin to harmonise again, but it takes time, and a bottomless well of positivity and courage.

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Welcome @Outlander

As Rups said the 1st few months are mainly ‘clean up’ of the injury and what you experience after that is neuroplasticity.

At 6 months- in your fairly early in the journey. I’m 2 1/2 years and The yawns and spasms are something I definitely recognise from the early days until now.
I can’t move in bed without everything on my affected side going into a spasm.
spasm is misleading word - it all extends or contracts together but it doesn’t wobble between the two states . I heard an online physiotherapist use the phrase “muscles that fire together wire together” and I think that’s what happened during my first 6 months and now I’m faced with trying to unlearn to separate out activation . I take every opportunity to do that.
You’ll have your own journey, if you work on it you’ll be able to affect it, ( and it’s a marathon not a sprint as people so often say) .

Like pando most of my dexterity issues are now related to turning muscles off - particularly when used in an effortful way such as stretching at the end of range. That range is increasing as I continually push it. yesterday for example I was up a ladder tying roses and wisteria in and I had to keep stretching and by the time I’d finished I done quite a lot of ‘exercise’ and I think I can feel the benefits today. I constantly attempt to perform everyday actions like this. They need conscious thought to stop after a few seconds and relax the unwanted muscles to leave just the right ones turned on. I can’t be sure but I think this is having beneficial effects because I am noticing increasing capability within my hand and arm. One thing to keep in mind in this regard is that repetitive exercises of the pick up a ball put down a ball don’t build neuroplasticity anywhere as effectively as continuous exercising use such as take a cup from the dishwasher put the cutlery away hang up the laundry tie in the roses because of the brain deemphasises nugatory actions

In some ways I regard the yawn and coincident muscle activation as positive because it’s showing me I still have neural pathways that move my muscles, and the muscles and tendons still have full range even though I can’t reproduce that range on demand.
I’ve used activation and I think my improvements in mobility is because every time I get a yawn or spasm I ‘force’ control on it -
I can actually choose the action that happens when I yawn but I can’t choose when a yawn!
in bed it’s a slightly different story but definitely related - I can’t stretch my leg without the effect spreading from the leg to affected arm.
I don’t get the spasming through movement during the rest of the day though.
OneOther thing I find is that a yawn is utterly irresistible and lasts two or three times longer than yawns used to before my stroke its debilitating for the 20 or 40 seconds it now last

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Outlander,

thanks for the reply. “no feeling in my right glute” sounds similar to what I am experiencing, but mine is particularly bad after a day of trying to exercise, walking around the house / patio. Have you tried fish oil ? I am looking at youtube clips of the muscles and mechanics of walking… exhausting my glute on purpose so the problem surfaces and becomes really clear. Then I formulate some theories as to what might be happening. I have some strategies to alleviate the stiffness, in the meantime, I save my ideas, see if they still hold up after a few days of scrutiny, then run these ideas through my acupuncturist or radiologist; see what they think.

We need a strategy to solve problems, troubleshoot, work on them, and keep ourselves in good fighting spirit
Good luck, Roland

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@EmeraldEyes i used a tens machine in my early days of my stroke it really helped get the muscles in my hand moving again, no pain either

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So glad I’m not the only one who thinks that way, and personally I found some too tedious. From day one of coming home from hospital I was trying to do all the things I would normally do with my affected side. I always went my natural instinct first and foremost before giving in to my unaffected side…from picking up a cup of tea :grimacing: to scratching my nose to hoovering :laughing: I always had my hubby or kids close by to step in or take control if need be :sweat_smile:

@pando Extra protein! I took on the principle of body builders and have about 200g of protein a day, meat/fish/eggs are the easiest…and I am a bit of a carnivore :wink:

@chris67 Yes, thank you, I’m finding the same for this thigh pain, I’m just surprised quickly its worked for that. Am continuing to use it on the EMS setting to work my right hip/leg muscles, that’s clearly something to do with that pain. :smile:

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@EmeraldEyes - the research is clear about brain mechanism related to forgetting. Basically a strategy is internalised and used till a better one is found that replaces it by a reorg that occurs during sleep. That is postulated to be one of reasons why babies sleep so much because they’re forgetting previous strategies to internalise and replace them with new ones. that nugget from my daughter the nursery nurse. We have a similar need to teach the brain strategies for using our disconnected muscles.
Physical strength does benefit from the source of repetition that all physiotherapists prescribe but both muscle strength and brain access to controls are needed in a stroke recovery and I’ve only heard one physio be inclusive of both needs
The “encounters in a variety of contexts” research is in a book called Make It Stick by Brown, McDaniel and Rodinger .

@pando hmmm, I don’t find any difficulty in taking things to the extreme ! but I don’t find it paid dividends :frowning: because I find it introduces secondary and tertiary problems that I then have to wait till they clear up before I can get back to the goal directed stroke recovery
Id be interested to hear how you moderate the factors Ronald

Any body any insights into Adult Nuerogenesis. On my reading list as a ‘to research’ but not yet as ‘done’

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