No announcement yet.

Spasticity please help

  • Filter
  • Time
  • Show
Clear All
new posts

    Spasticity please help

    hi everyone. It's been awhile since I've been on this site but I was thinking about you and hoping everyone was good. I just need some help with my spasticity. My legs won't stop spasming during the day and during the night. It's like they're going constantly. My neurologist has prescribed Baclofen and he increased the dosage so that I am on the maximum. He also prescribed phenobarbital at night when I go to bed. I don't know what else to do it's even to the point where when I get up on my standing device like yesterday my leg spasms and my foot kicked off the bottom stand and I fell all the way down to the floor and my husband who is an injured Vet had to pick me up and that was very very painful for him. So if anyone has any suggestions on what I should do or what different medication I can take that would be very very helpfu. Thank you!
    Be Well,

    Dx 1995 as RRMS, 2003 SPMS Rx: Gabapentin, Baclofen, Wellbutrin, Clonazepam

    Hi Angelea.

    Sorry to hear your spasticity has worsened. I know some people eventually get a baclofen pump. Has your neuro considered that option?

    There is a separate forum for spasticity. There may be a few threads of interest to you while you wait for responses to your question.

    Hope you are able to find something that works.
    Last edited by pennstater; 08-28-2020, 09:33 AM. Reason: Corrected url
    DX 01/06, currently on Tysabri


      So sorry, Angela! You definitely sound like a candidate for a baclofen pump (also known as Intrathecal Baclofen Therapy, or ITB).

      There are several people here who have one, including me. It has been a real blessing for me. I was on the maximum dose of oral Baclofen, Tizanidine, and Valium and still wasn't getting the relief I needed. I was then fortunate to find a new neurologist, a MS Specialist, who referred me to a spasticity specialist for further evaluation.

      The medication is delivered directly to the intrathecal area of the spine, and a much lower dose is needed for relief.

      A trial is scheduled first to see if you are a candidate for one. Medication will be injected into your intrathecal space, and they will watch to see how you respond to it. Sometimes it takes more than one trial to determine if your are a candidate.

      Surgery to implant the pump and catheter which delivers the medication to your spine is scheduled if you respond to the trial.

      Another option for some people is Botox, but it really sounds like you would be a candidate for the pump. Here is some more information for you:

      Best of luck to you, and please ask us any questions you have!

      “When you change the way you look at things, the things you look at change.” ― Max Planck


        I don't usually experience spacity, but I did have it regularly during one of my MS flares many years ago. Mine usually occurred before rising in the morning. I found that it helped to prevent it when I did some stretching before getting out of bed. You might want to experiment with stretching exercises and determine when, how and where they might work best for you.

        Here's a link I found, but, try your own thing if it doesn't help.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.


          I also have a pump and it changed my life. A true miracle in every sense of the word.

          Maxed out oral baclofen is no way to live life. Yuck!

          If you have any questions please feel free to ask.

          Also, a couple of us MSWorld members are also Medtronic Ambassadors. We're not paid, but we believe in the therapy so much we volunteer our time to discuss the treatment with people just like you.


            There are other muscle relaxers besides baclofen. Tizanidine is considered stronger and in my experience it's more effective. But tizanidine is filtered by the liver and sometimes one's liver cannot handle it. Baclofen is filtered by the kidney and seems to cause fewer problems.

            Originally posted by Angelea View Post
            My neurologist has prescribed Baclofen and he increased the dosage so that I am on the maximum.
            Different neurologists have differing ideas on what is the "maximum." It's often said that the max is 80mg/day. But some MS neurologists give 2 or 3 times that amount -- far above the FDA "limit."

            In treating MS, some medicine is literally experimental medicine.
            59M / RRMS / Dx1987 / Ocrevus


              Have they stopped prescribing baclofen? My neuro gave me a prescription to use as needed and it’s a big help. Lately, my caregiver told me my arms are flailing around in my sleep. If it starts waking me up will have to take one before I sleep.

              These medications were invented to help us. Sure better than Botox.


                I had some dealings with spasticity and the oral baclofen helped but it doped me up big time. I've got to say, CBD really helped me with it. I've heard and read that cannabis can be a game changer for spasticity.
                The future depends on what you do today.- Gandhi