What does YOUR spasticity feel like?

[mjan]

OK.. having some bad times with lower back and legs. History of bad bad spasms in my mid back..around rib cage for over 20 years!! Now back is tight.. and achy pain around bottom..down through legs. Muscles are tight.

In January found out that my lower back that used to have discs problems years ago...seem to be the cause of my electrical shock like pain..had 2 epidurals for my spinal stenosis.

Had a major MS exacerbation end of March affecting my left leg and balance.

In April, the deep aching..electric shock like pains shoot down my thighs and my calves ache..and tingling.
AND.. muscles in legs are tight & contracted often getting worse after I stand..walk too long or exercise.
So which is it?

I will have an EMG on back/legs this coming Wed..as the ortho doc feels it could be more MS than spine..or.. could be both. (of course). He won't do another epidural until he knows if the pain is from the brain..or spine. I do not have spinal lesions ..but have new brain lesions from Jan to March. BUT.. they weren't active.

Wonder if this will secure a probable MS diagnosis..to definite when I see my new MS doc June 3rd

What does YOUR spasticity feel like??

Jan

[SNOOPY]

Jan,

I hope your doctors can figure out what's going on and why.

Spasticity for me:

I Rarely feel spasms, I just get the feeling I have worked out and over did it (sore muscles), even when I haven't done anything. This usually happens in my legs and butt

Stiffness with pain in my back and legs.

I have had one experience where my arm bent at the elbow, the wrist bent my hand inwards and my fingers curled in...hurt like hell. I could not move any part of the arm, wrist, hand or fingers. It stayed that way for about an hour and released with the help of a heating pad and klonopin.

My spasticity is helped by exercise and when needed, heat.

That's my story and I'm sticking to it

[zuzu20]

I am going through the same as I mentioned to you before on another thread. I experiencing extream heavy legs, tripping, aching legs and going into Charlie horses when ever I try to stretch. I feel like I have to stretch all the time and that gets me in to trouble. My left leg is all tingling and numb from knee down not completely I can feel when some one touches it but feels numb when i walk like it's still asleep.
Then there the's eye pain, migraines and dizzy spells the feeling like I am going to black out. That has me worried more than anything else right now.

When ever I start to get ready to go out have shower's, or even puttering around the kitchen preparing food, getting dinner on the table is when my shaking is at my worst. Showers bring it out. I am a mess when I am trying to get ready and it exhaust me. I try now to have showers at bed time but then you wake up with funky hair. LOL....

The sligest bit of excitement being happy, sad or going shopping gets me all shaky too. I had stuff come in the mail I was really excited about it and I could't sand I was shaking so bad. It takes for ever for it to settle down and it stays with me it's just under the surface. Even standing talking to people gets me so shaky I have to always lean against something.

Everytime something new crops up I note it down in my journal. My left hand started to shake as well as my head while on vacation a few weeks ago and that has never happend before. So I took note and learned to work around it. The head stoped shaking but my left still shakes now when trying to type or hold something.
I get electric shocks in my knee of all places and runs down to my foot. and In my left hand. When it first happens I thought first thing I was having heart trouble. Which for now is all fine. I think :/
funny thing is when talking here it helps me talk it out and get all my frustration out here.
I am trying to change my friday's appointment to tuesday now I hope because of my eye and dizzy spells. I hope they can find a easier way to dx MS it's such a frustrating thing to go through you don't know what your going to wake up to.
I talked to a friend who was first dx and had sx for about 4 years then was fine never had another sx and then they said no it wasn't MS. So who knows these days. Maybe everyone of us has a bit of MS in us just some have more then others. I really wonder at times.? I think that My dm has it but she dosn't want to talk about her troubles and dosn't want to know. I would want to know. I don't blame her but I think she is in denile. (Sp) Sorry if this is a bit long.

[hunterd]

oh boy!!! my spacisity ranges from quick (10-15 seconds) bursts of twitches to stiffness that doesn`t ebb till i get comfortable. all situations have been checked into by my dr and they are forms of spasicity. hope that helps.

dave

[Johooper]

Jan,

This usually happens in my legs and butt

Thats where i get mine too, It just aches right where my butt meets my legs. Not really painful, more uncomfortable. Not sure if its spastisty or not as i dont really know what it's meant to fell like either.

Jo

[sloth]

everything raninging from what everyone else described to a hard contraction of a knot that wont let go. UGH.

I cant take baclofen or zanaflex so it just has to pass with a low dose of ativan again ugh. It scares me it will get so bad tho' and not being able to take teh standard drugs for it is frightening.

[Jenni O]

Hi there Jan...

Mine is in my left side. My leg will fell like I have weights hanging from it. It has tingling in it like it is asleep. Then, I get sporatic electric shock pains that begin in my lower back or hip area and shoot down to my foot. I can never seem to get comfortable on that leg. If I lean too much on it, I will fall over. If I have the covers on it, at times, it will feel like the covers are millions of little knives jabbing me. I have a 4 pound lap dog that likes to sit on that leg...just the weight of her is excruciating. Last night, everytime she touched me, it sent jabbing pains down my leg to my foot...and this was after I had taken my pain meds and they had already kicked in.

I also get an itchy feeling that seems just under my skin, so that I can't quite scratch it well enough to make it go away. It almost feels like there are millions of little bugs underneath my skin just biting away at my muscles and nerve endings. Also, my skin feels like it is on fire, though it is cool to the touch. I know this sounds dramatic, but I have even thought at times that I would be better off without that leg. I know, it sounds selfish. I should be happy that I can still walk and get around. It is just so painful. I know that some of these descriptions sound a little crazy, but that's how they feel to me. I feel bad dumping this stuff on my new hubby. We have only been married 5 1/2 months. At least here, I know that there are others who have felt similarly.

Good luck with your upcoming tests, Jan. I hope you get the answers you are looking for.

(((hugs)))

Jenni

[Pnut]

everything raninging from what everyone else described to a hard contraction of a knot that wont let go, ugh

This is how mine feels. Like a knot that keeps getting tighter, sometimes the bottom of my foot goes numb (left side of it). It almost always happens when I'm in the cold, (i.e. grocery store!). If it gets real bad to where I need to use a cane I have to rest it for at least 24hrs, if not it just gets worse. It only happens in my left leg. Seven years ago I fell and hyper-extended it and its never been the same since.

[nsubola]

Hi Mjan,

Thanks for the discussion. I think spasticity is something we all feel, and that we all feel it differently. Boy, I feel it so many ways...

The biggest feeling is tightness. It's like I loose a little range of motion every morning when I wake up. I start each day with stretches to get back to where I was the day before.

The tightness... it's so strong that at it's worst, my arm was clenched into my body and my hand was fisted - I work every day on extending my arm and hand. ....I want to reach behind my back - still working on it. My thigh and calves are really tight, too.

I also get spasms in my shoulder. Every now and then my whole shoulder will shake without my control. It doesn't last long....

I'm still working on basic motions. Everytime I do something new or something that requires a little concentration my arm goes up and into my body. I have a very hard time just letting it swing naturally when I walk (or should I say there's no natural anymore?)

My leg does an extra kick as I pull it through to take a new step.

My toes curl, too. It's really annoying.

I try to send messages to my brain to relax when I do something new or if I'm tired and it seems to help. I ask people close to me to cue me to relax when I walk.

I take 20mg of baclofen - 10 in the morning and 10 at night. I don't feel comfortable taking any more than that. I was taking 40mg and I was getting dizzy, I hated it.

All the best.

[SNOOPY]

That's where i get mine too, It just aches right where my butt meets my legs. Not really painful, more uncomfortable. Not sure if its spasticity or not as i don't really know what it's meant to feel like either.
Jo

My legs will ache but that is neuropathic pain and not spasticity...for me.

Lets see if I can explain the butt spasticity: it's as if I have worked my butt muscles for a long period of time. My butt cheeks are sore, muscle sore. At these times I will sit on an electric blanket...getting a nice picture yet

I have also been know to have my heated seat on in the car and if it's summer time the air-conditioning is on at the same time

[ShakespeareMama]

I am going through the same as I mentioned to you before on another thread. I experiencing extream heavy legs, tripping, aching legs and going into Charlie horses when ever I try to stretch. I feel like I have to stretch all the time and that gets me in to trouble. My left leg is all tingling and numb from knee down not completely I can feel when some one touches it but feels numb when i walk like it's still asleep.
Then there the's eye pain, migraines and dizzy spells the feeling like I am going to black out. That has me worried more than anything else right now.

When ever I start to get ready to go out have shower's, or even puttering around the kitchen preparing food, getting dinner on the table is when my shaking is at my worst. Showers bring it out. I am a mess when I am trying to get ready and it exhaust me. I try now to have showers at bed time but then you wake up with funky hair. LOL....

The sligest bit of excitement being happy, sad or going shopping gets me all shaky too. I had stuff come in the mail I was really excited about it and I could't sand I was shaking so bad. It takes for ever for it to settle down and it stays with me it's just under the surface. Even standing talking to people gets me so shaky I have to always lean against something.

Everytime something new crops up I note it down in my journal. My left hand started to shake as well as my head while on vacation a few weeks ago and that has never happend before. So I took note and learned to work around it. The head stoped shaking but my left still shakes now when trying to type or hold something.
I get electric shocks in my knee of all places and runs down to my foot. and In my left hand. When it first happens I thought first thing I was having heart trouble. Which for now is all fine. I think :/
funny thing is when talking here it helps me talk it out and get all my frustration out here.
I am trying to change my friday's appointment to tuesday now I hope because of my eye and dizzy spells. I hope they can find a easier way to dx MS it's such a frustrating thing to go through you don't know what your going to wake up to.
I talked to a friend who was first dx and had sx for about 4 years then was fine never had another sx and then they said no it wasn't MS. So who knows these days. Maybe everyone of us has a bit of MS in us just some have more then others. I really wonder at times.? I think that My dm has it but she dosn't want to talk about her troubles and dosn't want to know. I would want to know. I don't blame her but I think she is in denile. (Sp) Sorry if this is a bit long.

I second that! Zuzu, sometimes, braiding your hair helps it stay not so messy while you sleep. My hair is past my butt so it is INCREDIBLY exhausting to deal with. Braiding is a life saver, I tell ya. The only thing to keep in mind is that your hair will be wavy when you unbraid it. I think it looks nice, though. :P

Also, Mjan, if you've ever been electrocuted, that's the feeling I get in my left arm. Fun!

Be well, all!

[MBC3mom]

I have spasticity in my legs. For several years, it was just a tightening of my calf muscles that occured when I was tired, but kept me from sleeping. Then I also began having cramps in my feet.

Later my legs began to draw up when walking sometimes, especially if I was wearing high heals. Sometimes all of the muscles in my legs seem to tighten and relax of their own accord. I get very stiff if I sit for long and also when I first get up in the morning. Lately, I have a sensation like someone is pinching small areas in my muscles - this occurs in my arms, back, and stomach, as well as my legs and feet.

[KoKo]

Hello

Some examples of spasticity at it's worse for me:

*When riding my bike, an extensor spasm in my leg causes my foot to fly off the pedal, and my leg to stick straight out (very scary when I used to ride a regular two wheel bike)

*Upon getting very cold in the winter, my arm goes into a flexor spasm, causing my arm to bend at the elbow and draw up tight to my body, immobilizing my arm (preventing me from being able to turn my key in the ignition to start my car, until I warm up some)

*While doing the dishes, my hand closes, fingernails digging tight into the palm of my hand.

*Getting out of bed, instead of both feet touching the floor, an extensor spasm in my right leg won't allow my knee to bend, causing my leg to stay straight out.

Milder spasticity for me is stiffness and tightness and mild pain/ache.

Try to stay loose everyone

Take care,
KoKo

[Shashi]

Even though I haven't been diagnosed with MS, I do have spasticity (as verified by my neurologist's nurse practitioner.)

For me, it feels like my muscles are very tight and very painful, rather like they might on the day after running a 20K race (not that I've ever run a 20K or any other race.)

At times, the pain is like a really bad Charlie horse. And most of the time, my muscles are really stiff. (Sometimes I feel like I'm walking like a robot or Frankenstein's monster!)

While my spasticity is mostly in my legs, I've also had it in my upper arms, shoulders, back, neck, and around my rib cage.

Baclofen usually helps most of the time, but there are occasions where nothing helps.

I also evidentially have peripheral neuropathy or something like it because I have burning pain in my left foot and hand, and often shooting nerve pains. Gabapentin helps somewhat, but not enough.

I do hope you get some answers as to what is going on. It must be so frustrating to have different doctors telling you different things. At least mine have all be consistent in that they don't know what's wrong with me. LOL!

Hugs and prayers,

Lisa

[zuzu20]

I second that! Zuzu, sometimes, braiding your hair helps it stay not so messy while you sleep. My hair is past my butt so it is INCREDIBLY exhausting to deal with. Braiding is a life saver, I tell ya. The only thing to keep in mind is that your hair will be wavy when you unbraid it. I think it looks nice, though. :P

Also, Mjan, if you've ever been electrocuted, that's the feeling I get in my left arm. Fun!

Be well, all!

I wish I could braid it my hair is short shoulder length, Jut had it trimed up. My head feels 10 pounds lighter. It was only a trim too. I did in the mid 90's have hair down to my waist but I cut it short one year and haven't looked back. I do mis long hair every now and then.