Let's Talk... Spasticity: MSAA says... - My MSAA Community

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Let's Talk... Spasticity

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
51 Replies

MSAA says ~ Spasticity (stiffness)Causes and Effects

Spasticity is a common symptom in MS. It is a tightness or stiffness of the muscles – occurring typically in the legs (calf or thigh), groin, and buttocks. Although less common, some individuals may experience spasticity in their back. These are all muscles that help people to stand and balance in an upright position.~ mymsaa.org/ms-information/s... Read more!

What I know, is that for me.. things go flying out of my hands! Not necessarily on purpose! 😔😂🤣

What about you guys? Do you have it? How do you deal with it? Are you on meds for it?

J🤗💕🌠

Thank you positivewithms.com/positive...

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Jesmcd2 profile image
Jesmcd2
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51 Replies
erash profile image
erash

Definitely have. Often hands, feet, calves. Makes my legs feel tired 😬

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toerash

🙁 I'm sorry! And yes, when my legs act up, it def uses more energy! 🤗💕🌠

jimeka profile image
jimeka

I have it right now plus the periodic leg movement. Razor knows to get out of my way otherwise he gets involuntarily kicked. Not on any meds though👍

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tojimeka

He needs to lay a bit farther away then! 😂🤣 Although.. he could make a good dust mop!! 🙃🤗💕🌠🍫🦋

jimeka profile image
jimeka in reply toJesmcd2

Once kicked never forgotten. Great to have you back. Missed you. 🤗

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tojimeka

Aww ty! Missed you too! 🤗💕🌠

falalalala profile image
falalalala

Sometimes my fingers will cross and I have to bend them back in place.

It's not so bad that I can't hold a fork but going shopping for gloves is out of the question...

😅

It will happen in my calves or feet once in awhile.

I don't take meds for anything.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tofalalalala

🤣😂🤣🤗💕🌠

Raingrrl profile image
Raingrrl

I get it in my calves. It’s so annoying! I don’t take anything for it because I feel like I already take too many meds and the spasticity is only annoying at this point. It also seems like doing yoga helps keep it under control.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toRaingrrl

That's a good idea Raingrrl !!! 🤗💕🌠

palomino27 profile image
palomino27

I have severe spasicity in my legs. I tried baclophen and zanaflex which barely helped but made me so tired. Botox injections which were a disaster. Tried the baclofen pump trial but failed it.I am in a power wheelchair since I fell and broke my hip in December.

My priest called me a tin man once when I still used a walker or canes. I know he didn't mean it in a mean way but *sigh*.....

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply topalomino27

I'm sorry to hear about your hip palomino27 , are they going to do surgery soon for you? And ya know what they say about the tin man? If only he had a heart 💜 and yet he did! ☺️🤗💕🌠

palomino27 profile image
palomino27 in reply toJesmcd2

Yeah they did surgery at the hospital the day after. I now have a titanium rod and two pins in my leg/hip. I guess the break was actually my femur but the part up top by the hip. Surgeon said if the break were a half inch higher I would of had to have my hip replaced.

When she told me I needed surgury i just shook my head, sighed and sorta laughed😆.

I think she was kinda shocked by my response. I told her this is nothing and this moment and pain will pass. Which to me is a gift I guess. The tragedy is I have to wake up and all the MS and other Autoimmune crap/pain will still be there.

I was in the hospital rehab program for 3-4 weeks after. It is a special program for people who have bad injuries and neurological conditions. I qualified obviously. There is 27 conditions that qualify I guess.

For a week after I couldn't stand up. Pots/Dysautonomia does not mix with anesthesia I guess. My blood pressure would instantly drop. Like 66/24. Guess it takes 4-5 days to get out of your system.

At my first followup with the surgeon a month later in my new fancy power wheelchair, she said I should be a motivational speaker. I looked at her and said I really appreciated that she would say that. But, I said, that's funny I feel like I could use a motivational speaker! In thinking about it since, I think she was just seeing survival skills cause my progressive ms and all ms, etc. is a really hard life. But to me it's just every day....😕

You can either choose to try and live or just waste away in bed. Laying around won't change things or take the pain away because all pain, all fatigue etc. while seemingly paralyzing, is transitory, of the moment. So why not move. What do I have to lose? I think sometimes, maybe most of the time, my consciousness exists elsewhere. I don't think it's anything special. I think it's just how my mind protects itself. Probably from insanity!🙃

MsBoo profile image
MsBoo

I'm on baclophen for it.. been on it for many years.. but now I have my left leg having a spasm and then letting loose.. and then I fall.. they don't know why.. so many tests later and they still don't know.. pinched nerve? and the question goes on and I am still falling.. it is so much fun.. NOT!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toMsBoo

They don't think it's caused by your MS MsBoo ? I hope your using something to aid in your walking so you don't fall? 🤗💕🌠

MsBoo profile image
MsBoo in reply toJesmcd2

yes, they think so (that it's my MS) but looking at other reasons too.. I'm using walker now, and the walker can be used as a wheelchair of sorts.. so not walking as much either.. I'm just a mess right now.. but I keep gettin on..

palomino27 profile image
palomino27 in reply toMsBoo

Have they ever checked for Small Nerve Fiber Nueropathy in your legs? It makes MS spasicity much worse and virtually untreatable.

MsBoo profile image
MsBoo in reply topalomino27

they have just done the nerve conductivity test.. will ask about the other next time I see the Nero....

palomino27 profile image
palomino27 in reply toMsBoo

That one won't show Small Nerve Fiber Neuropathy.It's a skin biopsy. I had to fight to get it done....

MsBoo profile image
MsBoo in reply topalomino27

I had to fight to get the other done.. well lets see.. I'm a 100% disabled vet, and the mess to get regular things done seems like pulling teeth.. but I will request and see what they say, and then go above them to see what the other people say, then bang my fist on the table, and use my Big Girl Voice.. so when I say I will see.. it is a battle above and beyond.. haha..

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toMsBoo

😂🤣 love your attitude MsBoo 🤗💕🌠

twooldcrows profile image
twooldcrows

i love the different ways they show our symptoms of MS they make us laugh but does show an idea of what it feels like ...ouch...not to think it isn't important but we do need to be able to laugh at ourselves part of the times ....love it and yes it is a big OUCH ...hhahahhha

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply totwooldcrows

She does a wonderful job with the illustration's! I also feel that it helps bring up real topics to share and learn about!☺️ 🤗💕🌠

bxrmom profile image
bxrmom

I have it my left leg...the spasms can be so painful. I take Baclofen 4 times a day (10mg) and Tegretal at night as it makes me too sleepy. Sometimes I will get a random spasm in one of my arms or my right leg. I *think the reason I have them in my left leg is because the spams really didn't start until after I had a dvt blood clot in my left leg. I had steroids and they really knocked me out instead of having all the energy that I normally had after them. Instead of going to bed, I slept on my small love seat :(

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tobxrmom

I didn't like the tegretal, so I quit taking it!🤣 What's your Dr say about it? Did you ask him? And sleeping on the love seat is not ok! bxrmom !!🤗💕🌠

bxrmom profile image
bxrmom in reply toJesmcd2

He wouldn't up the dose of baclofin due to spams sooner than the 4 hours I was supposed to take it so he lowered it so I could take it more frequently and added the tegretal in place of tizanidine. For some reason he didn't want me on that. I can't take the tedretal during the day because it made me really sleepy and I told him that.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tobxrmom

I can't take the baclofin either that stuff messsssedddd me up!!! 😨😭😨😭 I'm pretty sure if you click the link they have a list of meds? Or will take you to one! 🤗💕🌠

kdali profile image
kdali

I have it daily now, and it’s arms, legs, and back. I use to sort of deal by stretching, massage, magnesium/float tank…but now I also have two meds I can use depending on which side effect I want also 🤣 It can be exhausting and result in increased weakness, so I try to stay ahead of that drama. Sometimes none of it works and my body becomes a wild party I never wanted to be invited to.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tokdali

Hmmm, wonder if an Epsom salt float bath would help at all?🤔 Probably not 🤣😂 but hey old school doesn't hurt 🤣 how is the new dmt working for you? 🤗💕🌠

kdali profile image
kdali in reply toJesmcd2

I think it does, and use to use them a lot while pregnant. The float tank is magnesium, but much higher concentration and seems to provide relief for at least a day. There’s also magnesium spray oil and lotions. I have one with lavender oil added for sleep and another with clove oil added for pain, no idea if either helps much. The new DMT? I don’t expect to stay on it, but I’m trying to be a good patient until I see the specialist in 2 more months. I am making little hair critters to leave in the shower for hubs now…after he commented that my hair loss “couldn’t be that bad” 🙃

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tokdali

Hair clump critters!🤣😂🐉 Which DMT are you thinking next? I have my O tomorrow, and MRI next week. If it's not stable, I'm going to have to find a new one 😔 💩😂🤗💕🌠

kdali profile image
kdali in reply toJesmcd2

I might start naming them 😜 I hope your drama is done for the year and you don’t have to pick a new med 😱 I don’t have many to choose from now, so Mavenclad? 🤷‍♀️ I could go back to O, and Mayzent was mentioned. I still think K is a great option and I wish it would be nice to me 😞

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tokdali

Call them all hairy! 🤣😂 And I hate drama sooo baaaddd! 😭😭 I'm so done! I really hope that K will settle down for you!🤗💕🌠

kdali profile image
kdali in reply toJesmcd2

🤣🤣🤣 Ty, me too!

Milk bath w lavender helps relax muscles. Feel better next day too

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toGoldilockssearching

That even sounds relaxing! Goldilockssearching 🤗💕🌠

Cutefreckles72 profile image
Cutefreckles72

Yes, My legs go crazy due to having spasticity in my calves. Its the main reason why I can't walk and balance myself. The pain, stiffness, tightness. I can go on and on. My legs don't move anymore when my brain tells them too. My legs move when they get ready. To help me relax alittle I take gabapentin and tizanidine.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toCutefreckles72

🙁 I think we should all get hot tubs to help with the spacisty! Do you find anything else that helps? 🤗💕🌠

Cutefreckles72 profile image
Cutefreckles72 in reply toJesmcd2

I haven't found anything to help with the pain. I just take my medicine and keep moving.

Bwine profile image
Bwine

I have horrible back spasms. I’ve had them for a very long time and I have taken Baclofen for them but now I’m on Flexeril. Nothing really helps except for when my husband gives me deep tissue massages regularly. When too much time passes between them, I can sure notice a difference. Extremely painful!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toBwine

Sounds like a great hubby!☺️🤗💕🌠

Tazmanian profile image
Tazmanian

I take 80 mg a day (4x a day)

Oceandream profile image
Oceandream

Thanks for this info! I guess I do have it. I didn’t know that was spasticity. I get it in my legs, groin and feet mostly. I do a series of stretches every morning that really helps me. I’ve developed my own little routine over the years. I overdid it last week with going back to work, so this weekend it was really bad. I guess…as with everything else…rest helps it and fatigue hurts it.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toOceandream

Your very welcome for the info!☺️ I'm glad the stretches help you! You need to be careful about overdoing it at work! I think alot of people are going to be in the same boat as you, with being off for so long! 🤗💕🌠

hairbrain4 profile image
hairbrain4

Yes! Mostly in my calves, but also my thighs from time to time. I am also constantly dropping things, my fingers just let go whenever they want to!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tohairbrain4

I love the dropping stuff!! 🤣😭🤣 It's like a magic trick.. Now you see it... Now you don't.. 😭🤣🤗💕🌠

hairbrain4 profile image
hairbrain4 in reply toJesmcd2

Unfortunately, it's usually something liquid that splats all over the floor!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tohairbrain4

I know right!?!😔 I need to get drinking glasses, I think they are going to be plastic!🤣😂🤗💕🌠

hairbrain4 profile image
hairbrain4 in reply toJesmcd2

I changed to plastic a while ago! I was really happy when they came out with those glasses with the lids & straw in them. They don't spill very easily when you drop them! They have really improved on them too with the metal ones.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply tohairbrain4

Never considered the metal ones.. I will have to check those out hairbrain4 🤗💕🌠

hairbrain4 profile image
hairbrain4 in reply toJesmcd2

They keep drinks colder a lot longer & you can also use them for hot drinks.

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