[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.

[charleyevans]

Thank you Cindy, all of this information is really helpful, as it seems like you're going through about the same trouble I am too. Medical Marijuana isn't a legal option for me as I live in Texas, but they do have the pill forms of THC, so that may be an option for me. I have a four year old boy, so though Austin, TX is a really easy place to score MJ, I'd rather not risk the legal ramifications of being caught with it.

I know what you mean about not being mentally ready for the pump; having a machine implanted into my body just scares me. Then again, living with these spasms like they are scares me too. Oh well, I can't get wrapped up in what might be; I should only focus on what is.

My pain management doctor was actually quite adept at helping me with the ADA form for my employer. The biggest accomodation they suggested was that they be flexible in allowing me to work from home (which I've been doing since November) as the onset of symptoms is so unpredictable as you said.

Thanks for the links to the sites, I will check them out now!

Though I hate to know you are going through this, it comforts me to know that you are there to help show me the way.

Happy Holidays, Cheers and Thank You,

Charley