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Patients Spasticity
Everyday life with spasticity
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Nishnish68
JosephineO
Community managerGood advisor
@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
Courtney_J
Community managerGood advisor
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
stephanyJ
Good advisor
@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!
doug61
Good advisor
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
Yank34
AmbassadorGood advisor
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
ladymary
Good advisor
@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. :)
Yank34
AmbassadorGood advisor
@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
LindaBlacker
Good advisor
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
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Margarita_k
Community managerGood advisor
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.