[charleyevans]

Hello,

Sorry in advance for the long post.

I am new to this forum and to the disease. I have an aggressive case of RRMS, as I was first diagnosed in February 2009 and suffered a major exacerbation in November 2009. I was hospitalized with I.V. steroids as my legs were frozen stiff by spasms, I had no abdominal reflexes, urinary incontinence and with the spasms came excruciating pain.

I am now able to walk with the assistance of a walker, am unable to drive a car and use an electric wheelchair for any long distance "walking" that I do with my family and friends.

It's good to find a forum like this as I've yet to join a support group and this seems like a place where people genuinely care about each other (from reading the posts.) Thank you for being here so that I can be too

My question for all of you is two parts:

1. Have any of you suffered terrible leg spasms that cause nearly unbearable pain despite all medications that you are on? (I take Zanaflex, Neurontin, Cymbalta, Trazodone, and Oxycodone to attempt to control the pain)

2. Have you returned to work in an office environment despite this pain and what accomodations did you need when you returned to work in order to deal with the spasms and still be comfortable enough in an office?

Thanks in Advance for anyone's input on this!

Cheers,

Charley

[Blessings2You]

Just wanted to welcome you to the community...this really IS a support group, and you'll get lots of support!

I have leg spasms, but nothing to compare with yours. I'm sure someone will be along soon with some advice.

[Kitty]

I have leg spasms, too, but not like you're describing. I used to take Baclofen and it worked pretty well. Since I've been on LDN the only pain reliever I take is OTC Tylenol or Motrin. Usually the only times I get really uncomfortable is when it rains or the humidity is high.

I hope you can find a good remedy for your spasms.

[Debbie D]

Welcome and hope you find lots of support, info and hugs here. I know I have.
I suffer from leg spasms. They've been a bit calm lately, but I know what you're describing. I'm on zanaflex capsules (my neuro told me the capsules work faster than the tablets). He told me to increase the dose if the spasms get worse, that I can take up to 24 mgs per day.
I was on baclofen and gabapentin before I switched neuros. I also was on monthly IVSM infusions. This neuro took me off of all of it...told me my brain was literally being fried.
I just got weaned off of Cymbalta for neuropathic pain, but I might have to go back on it, since the pain has increased.
Anyway, my neuro is suggesting botox injections for the spasms if they give me the kind of pain I suffered from. It's been muted, but I find that it still awakens me at night and I also can't stand for more than 20 min before they begin to tighten up and complain.
You are on quite a bit of medication...do you do stretches? That is stressed by my neuro. It helps a bit. I use a yoga strap. There is some info on stretching that I found useful on the Nat. MS Society's web page.

Good luck, and keep looking around here...I have found this spot a very good place for information from people who've been where I'm traveling...and I'm sure you will, too.

[ewizabeth]

Welcome to NeuroTalk Charley!

I have leg and foot spasms on and off but not like yours. I take Trazodone at night and I've taken Baclofen in the past when they got bad.

I've worked full time taking some fairly heavy duty meds so yes it is possible but not easy to be sure.

I'm glad you found us because this is truly the best website for support for our kinds of unique problems with MS and for many other conditions as well.

[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]

Originally Posted by Debbie D

You are on quite a bit of medication...do you do stretches? That is stressed by my neuro. It helps a bit. I use a yoga strap. There is some info on stretching that I found useful on the Nat. MS Society's web page.

Hi Debbie,

Yes I am on quite a bit of medication, something I'd like to be rid of in the future. I am currently weaning myself off of the gabapentin as I don't think it helps a single bit with the pain. I've also tried Lyrica, but to no avail. The opioid and the cymbalta/trazodone combination work the best for pain caused by nerves and by the aftermath of spasms. The rest of the meds are necessary for pain and depression. I've been on all of the anti-spasmodics; Zanaflex seems to work the best. I'll have to ask my doctor tomorrow about the capsules.

I'm doing in-home physical therapy right now, but it doesn't include any stretching! I don't understand this, the exercises are all centered around building strength back for coordianation and balance (which makes sense), however my P. therapist keeps telling me to ask my neuro about any yoga instructors that are experienced with folks that have MS.

[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.