Spasticity: Share your questions and experience here!

[dann]

Stopping zanaflex

WOOO - that made me tired even small dose - brain felt tired, too. Talked doc into trying me on baclofen again as I did well on it before. Having cramping now and back of my neck gets tight too. Have neurontin so I take a little bit prn - seems to relax muscles

[Luv2Worship]

My spasticity has gotten worse in the last few weeks! My right leg gets so I can't bend it unless I pull it back with my hands or I have those PT bands so I'll get it around my foot & pull my leg back. Usually it will calm down when I get up up but now its happening when I try to walk. I have to keep my walker close by!

I was wondering about peoples choice of meds also. I didn't have much success with Baclofen so I am on Soma. Punni is the only other one I saw who takes it. My pain mgt. Dr.s don't like to prescribe it & fought me on it when I first started there but since they don't seem inclined to test me for the bac pump, I insist they prescribe it. I guess it gives the same kind of high as Heroin but I did have one of the drs literally yell at me saying it was going to rot my brain & did I really want that ( this happen in hearing range of a full waiting room & employees) I said, half the crap I take may kill me so whats one more as long as it gives me relief on the way!! I won't go to him again!!

[Sissy]

Hi Luv2Worship
I SO AGREE WITH YOU!!! What the "heck"does it matter if it helps us and makes us feel better why do these Drs give us so much crap about it.

When I fist posted on this subject, my spasticity was allmost 2mo on going. I increased the tazanadine, no help so I went to Neuro. He put me on Baclofen 10mg X3 a day. He increased that to 15mg. He did say my MS is getting worse and we are going to start on a DMD, Gilenya.

Today my spasticity, numbness,vertigo are horrible! I am having a very bad day.

Spasticity is terrible! I am miserable and it is causing terrible Cog-Fog too! WAKE-UP DR's we need help!

[alanpgh]

I asked my Neuro to send me to a Spasticity Specialist, and that worked for me. Baclofen and related meds are only one or two types of treatments for Spasticity. There are others approaches to treatments.
We have had a number of webcasts on Spasticity.
Have you watched any of these? If not, you are welcome to watch at your convenience.

The webcasts and teleconferences that were recorded are on our Resources Page:
http://www.msworld.org/resources

There is also the Open Arms Campaign at the top of the page or at http://www.openarmscampaign.com

My main recommendation is to ask your doctor for a referral to a spasticity specialist. You will also find links to these types of resources, searchable by zip code or via a toll free#, on our Resources page. It will take a little work on your part. This was well worth it for me. Changed my life for the better!

Hope this is helpful!

Best Wishes!

Alan
MSWorld Volunteer

[Mariposa49]

Tizanidine fog

[QUOTE=dann;1305790]Started this 2 wks ago - hoping it would relax my stiffness - very med sensitive so smallest dose is 2 mg so would take 1mg (split tablet in half) at night. Everyday now I feel like I have sleeping pill hangover - think I need to stop and may try the baclofen again. I liked it, but after taking for 5 months or so, ended up having sore throat which went away with benadryl.....I stopped baclofen then as I thought it caused the throat difficulties, but who knows as I had taken it for 5 months w/ no problem......constant guessing game, but do not want to be in a fog 24/7!!!!![/QUOT


This is a little late in responding, but I was also put on tizanidine as well as baclofen for my spasticity. There were times during the day I could not stay awake. I finally figured it was the combination of the tizanidine and the oxybutinin (for bladder control). If I eliminated one or the other I did not have that extreme fatigue. At the time, my bladder control was more of an issue than the spasticity, so I stopped taking it and I have not had those "narcoleptic like" episodes. So you are not alone in experiencing this extreme sleepiness from tizanidine.

[migmis325]

I really don't know what spasticity is.

What are the "symptoms" and how would I know I have spasticity?

Are there such people as Spasticity Specialists to help in diagnosis and treatment?

Any answers are appreciated!

If your legs feel noodleish or stiff take Baclofen ask your doctor if you haven't done so yet

[yorkie lover]

Yorkie Lover

Hi All,
Thanks to everyone who shares advice and support. I am newly diagnosed and this is my first post. I have a Horrible pain in my lower right side of my back many times when I attempt to lay on my stomach. It feels like a knott and sometimes I panic because I dont know whrn it will end. You an actually see muscle movement from deep in my body when this happens. My dr. did a MRI and didn't see anything wrong so this symptom has been dismissed. Any suggestions on how to get my dr. to deal with this symptom. Until today I never had a clue that this could be MS related. Does this sound like spasticity to you? Thx Holly

[GIGI69]

I live by Zanaflex

They gave me Baclofen today for trigmenial neuralgia. The pharmacist said not to take Zanafelx with it. I'm panicking. I'm in bad shape w/o Zanaflex.

[asiel1]

I get it in my legs, hips and arms and shoulders/top of back. The arm shoulder thing is the most common, sometimes it's a daily companion. The hip pain is the most intense. I've learned to live with the arm thing, but it makes my arms and hands weak so using my left arm is tough.

I take baclofen, but it makes me a bit doped up. I find hot showers help for about an hour or so, but flare up the fatigue. So I turn the air down, jump in the shower, and then nearly crawl to my bed where I lay til the cool air takes away the fatigue.

I have found with this disease, sometimes you have to laugh to keep from crying.

[NYJenn]

Spasticity is a big problem for me in my legs. I am increasing the baclofen lightly to see if it will help.

[Sissy]

NY Jenn, I just increased the Baclophen again. I am on 15 to 20mg 3x's a day. It seems to be helping a lot. I am also on my 5th day of Gilenya..YEA...and pleased with how things are going! I hope you are finding relief too! Good Luck sweetie!! Take Care!!

[Spydre]

Truthfully, I don't know if what's going on with me could be termed spasticity, or just muscle spasms. My pcp seems to think whatever it is, it's due to the MS, and not my fibromyalgia. I'm getting spasms in my back/shoulder/and neck area, that make my back feel weak, put my shoulder in a lot of pain, and a new one as of today, I'll get a bad twinge in my neck, and it almost feels like I can't move it. I get spasms from my rear end and down my leg, bad enough that it makes my whole left leg weak.

It's been bad enough this month - most of this is new to this month - that I've ended up having to use my cane - for 5 days when it first started, and then again some evenings, as I just don't feel steady on my feet.

[owlnona]

I have spasticity in my feet & take Baclofin & Gabapentin.
They work well,I've been on them for about 3yrs.
God Bless Nona Judy

[wallflower]

spasms led to severe disc herniation.

dh has had ms for 3.5 years. in june he began to have spasms. in 1 day, he fell down flight of steps twice and then had the most severe muscle spasm thru his entire body that evening. his body was stuck in spasm for prob 20 min. he just screamed. body was twisted and stuck. thankfully kids were not home. went to ER and got flexerill. spasms continued but not as severe. now he takes 10mg baclofen 3x/ day + keppra. the keppra is working great. he starts to get the twitches if hes an hour or two late on his med time.

anyway, he had severe back/ leg pain after that. herniated disc severely and needed surgery.

[Shiela]

I'm on 20mg Baclofen 4 times a day for spasticity and don't have nausea or vertigo. (I did have sx of vertigo before using Bac though). I think it's different for everyone. Doc thinks my MS is RRMS.

I have spasticity in my legs that feels like the muscles get hard and it hurts to rest them on anything. It has caused walking problems for me to the point of cane and wheelchair, but the Baclofen helps most of the time unless I've been really active.

The cold does seem to make a difference. As soon as it starts getting colder, I start having charlie horses in my feet and legs, especially at night. I feel for anyone with these issues. It can be very painful.