spasticity sucks

[wendya432]

I know this is nothing new to you guys, but I just am so frustrated with it lately.

My legs, especially my right leg are just so stiff and sore all the time. Sometimes my feet hurt so bad. Especially the bottom, just feels like the whole thing is cramped up. Any time I try to stretch my arm or hand out different than normal, instant cramps. Like trying to itch my back in a weird spot, or adjusting my clothes even.

I feel like this is just ruling my life right now. Not sure if we need to increase my baclofen or what. I'm on 10 mg 4 times a day. Works well, but maybe not quite enough. I was trying to figure out how much I've progressed since my last neuro appointment... Then got thinking about how much I have since I started baclofen over a year ago. Realized that it has been a lot considering I was no where near this bad, and thinking if I wasn't on baclofen how much worse I would feel. I guess it hit home that things are speeding up a bit.

Just having a little pity party. Muscle biopsy is in a week, appt with neuro is after results come back. I will definitely be bringing up the progression. Maybe he will adjust my meds or something.

Any tips for helping it feel better? I take magnesium. Try to stretch some, but sometimes it just makes it worse. Also seems to set off fascics. No signs of any atrophy though so i think I'm still just UMN.

Thanks for reading if you made it this far. This board is a blessing!

 

[TxRR]

The cramps are from dehydration NOT FROM PLS. Drink lots of fluids (water, sports drinks etc). Avoid cokes, coffee or anything with caffeine. Stretching is a challenge. Some days my muscle just do not want to stretch so I don't push them. Other days I can stretch just fine so I push them hard. I was on 80 mg of Baclofen a day for many years. I finally quit because my body built a tolerance to it and it stopped working.

If your just starting to stretch your muscles it will hurt like hell. It gets a little easier after a while. My main problem is my hamstrings. They get so tight I can barely extend my leg out all the way. After a few stretches, I'm good to go and I start to feel my stride getting longer when I walk.

My best advise is get a hold of yourself and this disease. Don't let it control your life. And don't try to blame every single problem you have on this disease. I see people on here posting some of the most ridiculous things trying to blame it on PLS. Good luck!

 

[Bad Balance]

I tie 130mgs/day and it wears off like clockwork every 4-5 hours.
My doc confirms that this is correct for any dosage ....one 10mlg tab' or three.
For me, shaking or clonus starts up.

 

[Mike in Maine]

Wendy,
I'm taking 90 mg of Baclofen a day and find that as I get close to the next dose (every 6 hours), my whole body stiffens up, cramping starts and my legs start to shake or develop clonus. The clonus is so bad that it will wake me at night, so I take Clonazepam right before bed. As a side note, I'm having the same issue with my feet, their killing me. Have my first appointment to the start the process for the pump on 2 July; we'll see how it goes.
I think PLS manifests itself somewhat differently in all of us, what a strange disease. I think each of us has their own playbook that helps us made it through each day, and that is why this forum is so important, the exchange of ideas helps us to grow our playbook. Also venting may be one of the best ways to cope.


Mike

 

[RooRoo]

I agree, spasticity does suck! I'm tired of the shaking, clonus, cramps and everything else that comes along with PLS. My ankles have been giving me fits lately, sometimes they just don't turn! Sometimes my feet don't lift when I try to walk. I guess these things happen to everyone!
I think I must try harder to be grateful for what I can do...not be grumpy about what I can't do even though the list keeps getting longer. Spasticity does suck, though!

 

[wendya432]

Yes, I am very grateful that I am still walking! Not sure how long I'll be walking without an aid, but for now I am and I'm glad. I just had a day that it seemed like the spasticity was just shouting "don't forget about me!"

I end up taking my baclofen every 5 hours, 3 times a day, then the last dose I take at bedtime and it overlaps a bit with my dinner dose so I can get to sleep. Of course I wake up stiff as can be! But I can sure tell when those 5 hours has passed!

Thanks for the replies, just needed to vent to people that understand.

 

[Suzannah]

Grumble. Right there with you.

Just a curious question: From what I've read about spasticity, it seems there are two types: extensor and flexor. Extensor spasticity results in involuntary straightening of the legs, while flexor causes hips and knees to bend. I've read that the extensor pattern is most common people with MS, but I've never seen any mention about what is typical in people with motor neuron diseases. Me, I'm straight up extensor pattern. Is that what most people experience here?

Other curious question for anybody who wants to answer: do you have a lot of pain in your arms and legs from the spasticity? My limbs, especially my legs, ache so so badly from being so tight.

And finally, just a mostly silly question (that I really am curious about though ) Why does spasticity make it impossible to wear sandals or shoes without backs? When I wear flipflops, my heels come completely off the inside edge of the shoe and I end up walking on the ground. I can't figure out exactly what mechanism is causing that, though I've read that's pretty standard for people with spasticity in their legs. (And yes, I know I need to stop wearing **** flipflops. But I live in Texas and it's summer and it's hot and I'm a swimmer and I'm being stubborn)

--Suzannah

 

[MaxEidswick]

>But I live in Texas and it's summer and it's hot and I'm a swimmer and I'm being stubborn)

 

[Kosmoskatten]

It might be scissoring causing your feet to slip out towards the inside edge of a shoe that does not fixate the foot. All out scissoring causes an involuntary crossing of the legs, but milder forms might show as a spastic gait where the feet strive slightly to cross.

My ( quite mild) spasticity is relieved by an optimal dose of baclofen ( I noticed the dose is very important, a higher dose does not always mean more relief, that might cause clonus to become worse for example ), but also by tonic water, magnesium intake and epsom salt baths before bed.

 

[olly]

Firstly I have to agree with TXRR ....many things can seem to make spasticity worse such as infections ,stress ect ect. So you can not always think you have "suddenly" progressed as PLS follows at a set pace which is usually slow.

Secondly I firmly believe you can over medicate making symptoms worse. Many times I have said that baclofen can cause spasticity as indicated in the leaflet within the box...I believe too high a dose can have a counter effect .
It amazes me how much baclofen some people take on this forum...here in uk maximum dose is 80mg but that's not usually advised and any higher is only given if you are in hospital under supervision.

A women who lives across from me is house bound due to nerve pain in her legs. She has to have carers ect. She takes morphine and countless pain meds every day. Her husband says she is fine on a morning then takes morphine and is unable to do anything after that.
I told him (tactfully) that if she cut down her pain meds she would find she is less reliant in less pain and able to do more.

Like TXRR said you have to take control of your symptoms and life.

Having been on baclofen for about 14yrs I gradually cut down past several years and find I can manage on 20mg most days....yes I still have pain ,stiffness ect but you just have to accept and live with some.
I do what if feel I can each day...I do my own house work a bit at a time and keep resting at intervals ....some days it will take all day just to do a quick tidy.
I still try to walk if I can a short distance so I don't loose the ability altogether .

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Suzanne ,I can never wear flip flop types shoes either as they just fall off ...especially with my left foot .

Not all spasticity shows itself by a scissoring gate...I never had it even at my worst.
I n fact at my worst I found I could not walk with my legs straight out I had to lift my knee up than put leg down (treading?)......otherwise the sensation was trying to walk through water.

 

[wendya432]

Suzanne, I seem to have extensor in my legs, they go straight out, feet pointed. Although I do get myoclonic jerks, and after I have them my thighs get really tense and pull up towards my torso. My arms are the opposite. They want to curl up, mu right shoulder pulls down toward my torso/chest, my hand curls up.
I'm still wearing flip flops. I'm stubborn! And so far I don't have trouble with them. I cannot wear any of my sandals that have even a little bit of a heel though. I just tip right off them. Even just a slight incline is impossible.
And yes, I definitely ache!

Interesting about the baclofen dosing! I wonder why that is. I haven't "suddenly" progressed. I think we tend to not realize how we are progressing since it's just a steady thing, until we look back. I was just realizing how much of a difference it is looking back. Usually I don't realize it until I am having a lot of trouble doing something that I used to be able to do. Or, after I've overdone it and am really feeling it. I realize I was overtired, had overdone it the whole week before, and just everything I was trying to do seemed to be extra hard because of how I was feeling. Sometimes I get a wild hair and decide to tackle some cleaning project and it's just in my face that spasticity is definitely interfering!

My grandma had MS, and I remember when she was in a nursing home before she died (she also had alzheimer's), her legs being so stiff and completely scissored. I didn't know anything about it then, but I remember how her legs were so stiff and one crossed over the other. Now I realize what it was.

I do end up standing with my thighs pushed together, but not sure if that is from weakness or spasticity.

Maybe I need to have a talk with my neuro about baclofen dosage, maybe starting physical therapy? and anything else that can help.

 

[Kosmoskatten]

Even though my spasticity is fairly mild I do go once a week to a physical therapist that does stretching and range of motion excersises.

I find this helps a lot with my legs, but I tend to have very tense foot arches, and there the stretching does not help, I use cold packs on my footsoles when they tense up and then shower my feet hot, rinse and repeat. The increase of bloodflow from that helps.

This autumn I am going to be part of a biofeedback project focused on neurologically challenged patients with mild to moderate muscle problems. I think it will help me changing and adjusting to what the spasticity does to my body more easily. I am also medically interested in biofeedback, so all and all a good thing.

Here is a description of biofeedback from the Mayo Clinc;
Biofeedback: Using your mind to improve your health Definition - Tests and Procedures - Mayo Clinic

 

[Suzannah]

Wendy - I have the same pattern. Legs straight out and pointing toes, and arms that tend to pull in at the elbows and fingers curled in. But sometimes my arms and fingers will go rigidly straight and not bend at all.

Kosmoskatten, you might be right about the scissoring effect being responsible for not being able to wear flip flops. I had read about the scissoring thing a while ago but couldn't really understand how it happened. I recently got the report from my last neuro visit and it was noted that I had a "wide-based spastic gait", which I had no idea was the case. The other day I was walking back from the mailbox and realized that yes, indeed, I do walk with a pretty wide gait. So I tried walking with my legs much closer together, and boom! Instant scissoring. Oh. Now I get it.

I'm still experimenting with Baclofen. I've just been taking it for about three months, and only take a small dose at night. I started at 10 and recently went up to 20. But I kept getting this weird pulling sensation from my elbows to fingers and knees to toes. It wasn't painful, exactly, but super weird and creepy. I backed off on the dose a little and now it is not so bad. Has anybody experienced anything like that? I wonder if maybe it's just the tightness creeping back in, and that now I can feel it (whereas before I wasn't aware of it because it was so constant).

What kinds of shoes are people wearing, besides those of us too stubborn to give up flipflops? All of my shoes are smashed down on the inside edge from my heel going off the side and banged up in the front from catching my toes on the ground. I've been looking for some better shoes to wear, but I loathe shoe shopping

The biofeedback program sounds interesting. Would love to hear more about it when you do it!

--Suzannah

 

[Bad Balance]

Try elevating your legs, especially when you sleep