Spasticity

Well after thinking I was flying and all going well. Looks like this is not the case at all. My left leg is so tight and muscles Seem to be getting tighter everyday. I honestly feel like giving up I’m 50 and feel my future had been ripped away in the blink of an eye. Then when im really hopeful that I’m going to make a decent recovery this arrives to knock the living stuffing out of me. I can’t sleep or function thinking now what the future holds. Everything I’ve read about this seems nothing but terrible. I’m so sorry I’m normally so upbeat but just feeling so low tonight :pensive:

I would talk to your gp about treatment available in your area. I know that our health authority does offer this, but others might not.

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I’m sorry for such a negative post late last night I’d delete it if I could. Was feeling low.

Hi Colin, so sorry you are feeling down. It’s very early days for you and from my experience things change on a regular basis. Everyone’s stroke is different as is Everyone’s road to recovery. I suffered a hemorrhagic stroke 5 years ago, which left me paralysed on my left side. I also suffer from spasticity and have botox injections in my left wrist to help me uncurl my left hand.

Botox is a specialist treatment and I received my first dose when I was in a hospital rehab unit and I return there to the Spasticity Clinic to have it topped up every four months.

I’m sure your gp would be able to point you in the right direction. Good luck and keep working on your recovery.

Regards Sue

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@Colindlynch sorry to hear you’re having a difficult time. Don’t ever apologise for feeling low…we all have those days & this forum is a great place to offload.
As @Susan_Jane has said botox may be able to help & you should enquire with your GP.
One thing about stroke is that when you think you’ve made progress something gapped & you feel like you’re back at square 1 again. One piece of advice I was given is that each time you feel like that hopefully it doesn’t take as long to get back to where you were again. Lots of patience is required for stroke recovery (something I don’t have but am learning).
Best wishes & keep going you’re doing well.
Ann x

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Thank you so much for your response. I think i get scared quite easily and the unknown has always freaked me out and with this I just don’t know how bad it could get as its come on so suddenly and got worse day by day. My GP told me not to worry and get my wife to massage my leg whilst my physio I’ve not heard back from I now feel it in my arm and fingers but mainly my leg. I need to see doctor just to have it confirmed and what they and we can plan to help with it. To many Google searches is upsetting me and now my wife is upset with me searching things for answers on the Internet.

Thanks for your response :+1: :slightly_smiling_face:

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I’m with the others on this. Speak to your GP. You may be able to get Botox injections. They didn’t work for me, so I take Tizanidine tablets. My spasticity also gets worse in humid conditions, so the current weather conditions don’t help!

I had a brain haemorrhage in 1996, I have been having BOTOX injections for years, but they do not work for me no longer. I used to have them to stop my toes from clawing up and my ankle from going over on my left foot. Hopefully there might be to operations they can do to help me. I have had my 1st appointment, now I am just waiting to hear if they will do the operations for me.

Hi Colin - I’ve probably mentioned this before, but here goes. After my stroke 4 years ago, I had a problem with leg spasms on the affected side. My whole leg would tighten up–and would do this regularly- like once every minute or two. It drove me crazy., and I couldn’t get to sleep. It seemed to only happen when I went to bed at night. What would stop it was @ 20 mg CBD oil under the tongue. It would usually stop within about 45 minutes. If it didn’t, then I took another dose. That always worked within about 30 minutes. I checked with my GP and cardiologist first, and both were ok with it. Just passing it along. :slightly_smiling_face: :heart:

I’ve finally managed to get a call in with my physio. She told me to take a hot bath and relax and she is going to call me Friday.

I don’t really have spasms occasionally I do but not regularly but wonder if they will follow the tightness of my muscles.

My whole left side but particularly in my leg the tendons are just permanently tight it’s not something that comes and goes. My foot is also really tight. I’ve calmed down alot and will deal with whatever comes my way.

I still feel bad about the original post being so negative but just feel especially low at the moment. GP would not see me even though i tried twice to book an appointment and referred me back to physio who I could not get hold of. So Google is not a place to look as it was all doom and gloom and how bad everything is and how spasticity is the worst thing ever etc. I need to get a grip which is hard when you can’t find out what is wrong with you.

Thanks everyone x

Being in pain & uncomfortable all the time is horrid. No wonder you’ve been feeling low. Dr Google is probably not a place for advice as always looks at worst case. We all do it though…can’t help ourselves. Partly because we can never get GP appointments these days. Hope the physio can sort it for you.

I know its terrible really Google just makes things far worse and you think everything you read is going to Happen to you.

I have stopped doing it as its been a real horrible week . Even spoiled a mini break away with my wife as could not sleep due to the heat and was Googling at 2am which kept me awake all night and spoiled the next day.

All I was looking for was some answers as could not get appointment with GP and physio was not available as she is so busy we only have two covering the whole region.

It’s not something i will be doing again. Fingers crossed (no pun intended lol) the physio can help and also ease my mind a little as I need to get back on track

Thanks again for your kind response :+1:

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Google probably won’t do much good, but there are some good exercises on YouTube. Try Orlando NeuroRehab, run by Tara Tobin. There are exercises galore and advice on everything stroke related. Bob & Brad are also quite good.

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@Colindlynch
Did you find anything that helps that tight band stiffness feeling?

CBD oil drops under the tongue (about 20- 40 mg for me 120 lbs) helped my spasticity. Jeanne

Thank you for responding.

Hi Colin. Hope you’re feeling better now.
This sounds quite similar to my situation , the whole of my right side from head to foot is affected and it feels like i’m carrying a house brick around in my chest.
Before my stroke i was teaching myself to play the guitar (badly) but since i had the stroke it’s become a real problem , within minutes of picking up the guitar my blood pressure would go from normal to sky high , i’d get palpitations and have to stop , i have since started taking blood pressure meds and propranolol but i can still feel the pressure and strange chest pains whenever i pick up the guitar and still have to stop after a few minutes ,i have mentioned this to paramedics and the Doctor but neither seem concerned .
best wishes to you .

Hi Telly

Im still the same ita not spasisity as they thought but all sensory related my foot i beluve is causing most of my issues.

Im trying to come to terms that this is the new me as i think its the ony way forward.

I hope your symptoms improve i am sure they will. Everyone keeps telling me its very early i. Just over 6 months since the stroke.

Good luck with everything

Colin, I just posted a topic; “Late onset spasticity”. I also thought I was having a spectacular recovery and Boom, my whole right side got worse almost every day. Feels like I have cement in my muscles. When I try to do my art or play my piano, my body says “oh no you don’t, no fun for you” and I tense up. Had a second MRI to rule out a second stroke but thankfully no signs of another. I downloaded the best book I’ve ever read on stroke ( a rental from Kindle) called “stronger after stroke.” The author says basically that you have to work harder than you ever have with exercise to diminish spasticity. I’m trying and I wish you the best for a full recovery.

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I was just told that mirror therapy is my only shot, but this is only used on the arm. Because my stiff rigidity is not “velocity dependent” it cannot be classified as spacstity. The tight rubber band feeling in the arm and leg is instead considered central post (thalimic)stroke pain. I am one yr out and still in therapy despite walking within one month and feeling good before this stiffness. Concrete like is how I describe it as well. I hope anyone who experiences this updates this forum as I’m being told this is an unusual symptom. Please anyone let me know anything you can. This is torture.

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