[SallyC]

Welcome again, Charlie.

I think that one of my biggest complaints, when DX with this Disease, was stiff and spastic legs. No Med really worked to get rid of them, but, over the years, I have learned to cope, by stretching every few hours, especially before retiring abd before getting up.

I don't have a lot of pain, but maybe I'm just used to it.

Feel better, Charlie.

[tkrik]

Welcome to NT!

I have only had spasms similar to yours twice. Once in my foot/ankle where the foot was stuck in 1 position and the other in my hip/hamstring where my leg wouldn't straighten/bend-stuck at a 45 degree angle. Most of the time they vary from feeling a "pull" to a charley horse type spasm.

I don't take anything for spasms. Most things just knock me out. However, when my leg got stuck I broke down and tried the Valium and aside from sleeping all day and night on 1/2 Valium it really did work.

I do hope you start feeling better soon and can find something that gives you relief. Check in with us when you can and let us know how you are doing.

BTW - I have not returned to work. The ADA would be a great place to start research accommodation options that are available to you should you be able to return to work.

[charleyevans]

Thanks to all for the warm welcome and your answers!

Originally Posted by tkrik

The ADA would be a great place to start research accommodation options that are available to you should you be able to return to work.

Could you explain a little bit further what you mean by this? I am actually trying to get an Americans with Disabilities Act form filled out for my employer, but I don't know exaclt what accomodation I need. Is there a specific ADA website that I would go to in order to research as you suggested?

I'm starting to think the accomodation might need to be my own personal couch to work from. I find that when the spasms are biting right through the pain killers and Zanaflex, I usually have to gently stretch and elevate my legs. Since I'm 6'5 and unable to get down to and up from the floor, a nice long couch should do the trick.

Cheers,

Charley

[Riverwild]

Hi Charley and welcome to NT! This IS a great place!

I wonder if you have given any thought to the Baclofen pump? I know it's an invasive device but you do what you have to do to get by.

I too have a lot of spasticity, but it doesn't sound anywhere near yours. I am on baclofen, tizanidine and MMJ for spasticity, along with stretching, monitoring activity on bad days and treating before it gets to the pain stage. My spasticity is in my legs and hands, and every moment I am not working at something else, I am stretching some body part to ease the spasms.

I hope you can find an answer. It's no fun to be in pain all the time and with all the medical stuff available these days, there's got to be something that can help.

"Better living through chemistry" is my motto since MS.

[charleyevans]

Originally Posted by Riverwild

Hi Charley and welcome to NT! This IS a great place!

I wonder if you have given any thought to the Baclofen pump? I know it's an invasive device but you do what you have to do to get by.

I too have a lot of spasticity, but it doesn't sound anywhere near yours. I am on baclofen, tizanidine and MMJ for spasticity, along with stretching, monitoring activity on bad days and treating before it gets to the pain stage. My spasticity is in my legs and hands, and every moment I am not working at something else, I am stretching some body part to ease the spasms.

I hope you can find an answer. It's no fun to be in pain all the time and with all the medical stuff available these days, there's got to be something that can help.

"Better living through chemistry" is my motto since MS.

Hi Riverwild,

Wow, baclofen and tizanidine at the same time? I don't think my neuro would let me try that, but I'll ask. Although, I don't know if I could stay awake if I did. What is MMJ? Mixed martial Jarts ? I hadn't considered the baclofen pump just yet, as I'm hoping that this won't last too long; if it does become a permanent thing and I can't resolve it in a better way, then of course I will consider the pump. I think I need to find a physical therapist that knows more about MS and appropriate stretches for MS patients than my current PT. I find deep breathing and bio-feedback help some, but the bio-feedback (breathing control and intentional mind-controlled relaxation of muscle groups) sometimes hurts the spastic muscle more than it helps. Lately the problem with stretching is that, although I don't stretch to the point of pain, a stretch of one muscle that was spasming will often set off a spasm in another.

Anyways, sorry to dump all these problems out here... in truth my life is really good ... I don't want it to sound otherwise.

Thanks for the advice and support,

Charley

[NurseNancy]

hi charley,

i'm sorry that you're going thru such spasms and pain.
RW suggested what i was going to suggest.

i have been working with a PT at a local rehab hospital. i was referred by my pain and rehab doc. she's very good. perhaps you could find someone more experienced thru a rehab hospital. my dr is board certified in pain mgment and rehab medicine.

i hope you will get some relief with what you're trying.
does heat help your muscles at all.
i have a lot of muscle problems but not spasms. i also get a deep tissue massage once a wk.

i wish you the best with handling this problem.

[AfterMyNap]

Hi, Charley! Welcome to NeuroTalk!

Yep, spasticity is probably my most dominant symptom and it's maddening. It hurts intensely and I am powerless to control it. I also take a lot of Zanaflex and Baclafen in alternating doses and it helps, but only a little.

What RW means by MMJ is medical marijuana and it's the only thing that calms me down enough to sleep. The amount is miniscule but it truly works for me. I just can't bring myself to use it during the day, bedtime only.

I agree with RW that the Baclafen pump might be a very real possibility for you. It takes a much smaller dose and they say it gives instant results. It has been recommended to me but I'm still not mentally ready for it.

My legs and back feel like they're in a constant battle to dominate the rest of my central nervous system universe and the competition is unrelenting and painful.

Common sense stretching works well for me but only during the stretch itself. And, yes, one stretch triggers an involuntary one elsewhere and forges everything back into the next excrutiating battle.

The climate here is cold now and going from indoors to outdoors is super hard as my legs turn into cured cement and won't even bend so I can force them into the car.

The biggest thing to include in your ADA accommodations list is FLEXIBILITY for the entirely UNPREDICTABLE circumstances that MS throws at us virtually every day. Your employer needs to understand that even you don't know what could come along and that you will do everything in your power to control these events.

Ask for suggestions from your employer as to ways they can accommodate you. There are many office configurations and auxiliary pieces of office furniture that are designed to curb fatigue, etc.

Take a look at the sites for the major office environment suppliers:

Steelcase:
http://www.steelcase.com/na/

Herman Miller:
http://www.hermanmiller.com/

Hon:
http://www.hon.com/

I have personally worked closely with each of these companies in their research and development departments. I can attest to their dedication to ergonomic solutions and their progressive commitment to maximizing comfort combined with utility.

If you take time to learn what is available, it may help you recognize multiple ways to accommodate that giant frame of yours.

Again, welcome to NT and do keep us posted on your progress.