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Everyday life with spasticity

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Margarita_k

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Edited on 30/08/2017 at 18:16

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Margarita_k

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Last activity on 07/10/2020 at 11:39

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What is your experience with spasticity?
What has this changed in your life?
Don't hesitate in leaving a message or sharing some info so everyone can benefit from everyone's experience.

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Unregistered member

12/07/2019 at 11:12

They definitely help with spasms and cramps, just dont last long enough !!!

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2019-07-12 11:12:03

JosephineO

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12/07/2019 at 11:48

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JosephineO

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Last activity on 15/07/2024 at 09:21

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@Nishnish68 Thank you for sharing, it is great to share your opinions in our survey so we can help to improve care and make life with spasticity easier :)

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Josephine, Community Manager

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2019-07-12 11:48:14

Courtney_J

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30/06/2020 at 11:51

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Courtney_J

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Hello everyone,

I thought I would revive this discussion so that we can all share!

How does spasticity impact your personal and everyday life? Have you relationships with family or friends changed because of it? Have you had to adjust your schedules or outings because of it?
@Nomibee‍ @Gemma2803‍ @Cervicaldystonia‍ @PriscillaWilda‍ @Julie52‍ @Sk8rGirl‍ @GLOJO1‍ @dickymint‍ @Psulsayhi‍ @Whakka‍ @BexRox‍ @Nathaliedee1‍ @Pinkfairy‍ @hayles‍ @LisaMC49‍ @Red40rrms2011‍ @Julie92‍

Let's talk together and give each other advice on how to live better with spasticity!

Take care,
Courtney

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Courtney_J, Community Manager, Carenity UK

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-06-30 11:51:28

stephanyJ

01/07/2020 at 12:48

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stephanyJ

Last activity on 15/12/2022 at 21:19

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@Courtney_J Hi, my sister has MS and she has in recent years been have some problems with spasticity. She has it badly in her legs and a bit in her back. It can be hard for her to handle basic tasks like dressing and reaching for things. I don't think anything has changed amongst our family but she does have to make sure to give herself enough time to get ready in the morning. She's started seeing someone to help with and I think they've been doing stretching and other exercises to help and it seems to relieve a bit of her pain. Hope you're all well!

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-07-01 12:48:40

doug61

03/07/2020 at 11:48

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doug61

Last activity on 20/10/2022 at 12:07

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hi all i got heredatry spastic parapliga when i was 42 i did manage to carry on work as an electrical engineer until i was 55 but was then forced to retire i lost all my work friends and now lucky if i see anyone most days i try to keep active but as i can just about walk ummm maybe that should be shuffle along with a stick finding each day harder and harder dont really get much pain unless i fall over dosent seem to be much help out there in my area of the uk still finding it hard from going to work every day to being unemployed

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-07-03 11:48:56

Yank34

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03/07/2020 at 15:54

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Yank34

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Hi everyone. I've now had MS for 42 years although only formally diagnosed in 2013 when it probably changed from its' previous RRMS status (at least that's the conclusion my MS Nurse and myself, a retired Qualified Nurse came to)! Because of the above, the only treatment options are simply symptom control, including taking 20-40mg baclofen, titrated according to how problematic my muscle spasms/spasticity is. Currently thinking I have started with another "flare" because spasms/cramp/pain in my toes, feet, calves, thighs etc have been frequently waking me up while sleeping even though amply hydrated. Please always remember NONE of us are on our own with our individual MS journeys - we're all in this together to listen to one another, empathise, understand and support each other! x

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Ann

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-07-03 15:54:39

ladymary

10/08/2020 at 14:49

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ladymary

Last activity on 07/08/2023 at 21:39

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@Yank34 Thank you for the encouragement! I've just been told my MS has changed to SPMS and I started having leg pain and stiffness in lockdown, which my doctor told me is spasticity. He's given me gabapentin to start and it's been helping with the pain. Overall though it's made my days a bit more difficult because I sleep very poorly and I already struggle with fatigue. Trying to keep a positive outlook, though. :)

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-08-10 14:49:38

Yank34

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10/08/2020 at 20:14

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Yank34

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@ladymary‍ I've just seen your above comment - unfortunately, have no idea why/how BUT I've left a comment/reply to your latest post on a different group/discussion page (a really "old" one (from Sept 1917 - What is a flare for you?) instead of this one! I felt fine this morning, went out shopping/doing "business that needed taking care of" etc) about 8.45 am and may have done too much because just before I'd finished all this, began to experience painful muscle spasticity which quickly extended from my back to 2-3 of my limbs. It's now many hours later, took an extra baclofen (muscle relaxant) as well as my teatime gabapentin but it's now apparent, I'm going to have to resort to taking some Oramorph to hopefully "get it more under control"! Please keep up your positive outlook even though you've "transitioned" to SPMS. Looks like I've had this for past 7 1/2 yrs and still independent x

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Ann

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-08-10 20:14:27

LindaBlacker

24/08/2020 at 18:45

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LindaBlacker

Last activity on 12/05/2024 at 21:36

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I'd love to hear more about botox for leg stiffness as in capacity please if anyone knows if it helps loosen muscles in the legs. To make walking easier or am I being presumptuous

Everyday life with spasticity https://www.carenity.co.uk/forum/spasticity/living-with-spasticity/everyday-life-with-spasticity-1920 2020-08-24 18:45:25

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