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Would you describe this as spasticity or use another term/word?

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    Would you describe this as spasticity or use another term/word?

    Hello, I tried posting this over in the limbo category, but can't get it to show up and thought it might be better placed here.

    Thanks in in advance for your time and help.

    I have several symptoms that I am struggling with, but one in particular i am having trouble describing to my doctors. It involves my muscles and im not sure if spasticity is the right term to use.

    My muscles involuntary beccome hard or flexed. I use an analogy if holding something in your hand and squeezing it as hard as you possibly can, the muscles in your forearm become hard and tensed. My muscles do this, except I do not control it, I can't make it start and I can't make it let go or soften.

    I think of a spasm as something that contracts and then lets go, so I try to not ever use that term.

    Most days, the severity of this hardening increases as the day moves on and by night my muscles are so tight feel like they are pulling my bones together and I am stuff I can barely move at all. I call myself a living statue! I know that sounds crazy, but it's the only way I know how to describe the feeling.

    How i.e. would you go about describing this to your doctor?

    Thank you for your input.

    Hi procraftinator8,

    Sorry you are having this symptom. I thought you gave very good descriptions both here and in the Limbo Landers forum . Yes, it does sound like spasticity. Tightness and stiffness are words commonly used to describe it. Here is more information about spasticity:

    I hope you find relief. Good luck

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


      I know what you mean exactly!

      Hi procraftinator8, I just started a thread because I was worried that the terms I use to describe my own experience of spasticity did not match the terms in the questionnaire I need to fill out for my Baclofen pump test!

      You wrote about your "muscles feeling so tight it was like they were pulling your bones together" --YES! I wrote about the pain being so bad that I wanted someone to be able to cut the muscles so they would stop "pulling."

      And you also joked about calling yourself a "living statue," and I had written about feeling like someone had poured hot concrete into my back and I just, again, wanted someone to cut into my back and break the concrete up to release it.

      I also thought that spasms meant something that came and went, and my spasticity is constant, chronic, and intractable. And when the spasticity questionnaire asked me to say how frequently my spasms occurred -- I think the scale provided went from least at "every few days" to most at "10 an hour" -- I didn't know what to do. There was no place to say, "every second of every minute of every day."

      I saw your post is almost a year old, but I wanted to tell you I know what you mean exactly, and to thank you for what you wrote. I'm wishing you well,


      PS. I'm going to look up Kimba's link to the NMSS description of spasticity next!


        I use a simple rope to describe muscle tone & spasticity.

        A rope is loose and should be able flexible like a jump rope.
        Your muscles without any tone are limp as well. Normally
        your muscles have a certain amount of tone to maintain
        your postures, open a door, turn your head, etc, etc.

        Too little tone and you are unable to easily do things because
        your muscles are mushy. Think about trying to shoot a pool
        (billiards) or pretend to play baseball and swing a rope bat.
        That doesn't work well because the rope doesn't have enough

        Too much tone and your muscles are contracting too much and
        reduces your range of motion. The more tone the smaller motion
        range you have. Take the rope that you can jump with and tighten
        it enough and it can support a human (tight rope walker). For us,
        that makes every day tasks exhausting be we are fighting against

        You can really see this in action during baclofen pump trial test:
        - if the patient gets too much baclofen they lose control of their muscles
        and become like jelly. This is a positive test.
        - if the patient doesn't get enough baclofen they remain with muscles
        too tight and have a "failed" test
        - if the patient gets the correct amount of baclofen their tone is corrected
        and life is better.

        Some people wait too long to get a baclofen pump and use extra muscle tone to walk.
        When you get rid of the extra tone they find they cannot walk any longer. These people
        can often be seen lifting and then throwing their leg forward with their hip.


          thank you for the rope analogy!

          Hi Marco,

          Thank you for the rope analogy!

          The very first time I posted to this board I was asking for advice about the terrible pain in my back -- I'd already been told by three neurologists it could not possibly be spasticity!

          And Kimba replied way back then and mentioned the Baclofen pump!

          A few months later I saw a "spine specialist" who diagnosed me with "hypertonicity" in my back. I asked him what could be done about it because it was causing me so much pain, and he said, "get a new neurologist."

          When you were talking about "tone" in relation to your rope analogy I remembered that hypertonicity diagnosis for the first time in over a year!

          Oh, it's so good to hear from people who understand!

          I did get a new neurologist in Fall of 2015, and she is so much better, and she referred me to the PMR specialist I have now, who is very good. But it's still 2 years later and I've done trigger point injections and PT; then Botox injections and PT, and now finally they've recommended I go in for the pump trial.

          I hope with all my heart that it works. And Marco, thank you also for all the posts you've written on the pump. I've been reading through them while researching the pump for myself and you've given me and my husband so much hope!



            Hi Maggie...Sorry I am so late to the party, I just happened to come upon the email that let me know someone had replied..I had given up hope!

            In the last year some things have changed, but some have stayed much the same. What's changed for me is that I tend to, as long as I get a deeeeep sleep, wake up feeling great. Lose and flexible with very little pain. However, as time goes on thoughout the day, I start to decline. The more I do and the more time I am awake, the tighter and stiffer I get. 4-5 PM is an awful time for me. That's when it REALLY starts. I am pushing hard to make it through dinner and getting to bed, every single night.

            Also, I don't know if you experience this or not, (if so, please let me know!!) I get "stuck" a lot easier as well. EX. If I bed over and pick something off the floor and stay bent over more than 30 seconds, my back muscles instantly tighten so hard i can barely stand it and I "stuck" in that position.

            Also, I lost my health insurance, and I still can't find a single doctor who will listen for more than a second, or order the right test, or anything!! So I just suffer. And suffer. And don't tell anyone with a smile on. And pray that I can make it till my sons gets to 18 and can care for himself.

            I don't know what else to do. I am however, very glad that you are finding some help. Can you keep me updated on the baclofen pump thing? How does on go about getting that test ordered? And what does it show if you are positive? What have you been diagnosed with? What is your story??? Do you have any other ailments?

            THANK YOU!!


              Hi, and I will share my story of spasticity as soon as I can, and big hug!

              Hi procrafinator8,

              I am so glad to see you ! I will write back as soon as I can! I am tired and I HURT -- and I know you and everyone else here with spasticity can empathize!

              I am sending you a big hug!



                worried about you and hope I can help!

                Hi profastinator8, it's Maggie. I started writing you all about my journey with spasticity, but I deleted it and started over, primarily because I realized I was getting too caught up in ME and not addressing important issues for YOU!

                I've been diagnosed with RRMS for 7 years, and I wasn't officially diagnosed with spasticity until my Baclofen pump trial this past Tuesday, though it's been going on for over 4 years!

                I showed my husband your post because a year ago (before we were engaged) I remember helplessly telling him that I just needed to face the fact that 4:00 pm was what I called "the kiss of death" for me. My pain, and attendant loss of function, would reach its peak at that time, and every day I'd feel newly devastated. Though I'd been diagnosed with MS, I'd been repeatedly told over three years' time that my spasticity-related symptoms could not be "spasticity" because: 1) people with MS don't experience such severe pain; and 2) spasticity doesn't affect the muscles in the back, which are for me the muscles that are by far the most severely painful.

                During my Baclofen pump trial, the physical therapist examined me and determined that I had severe spasticity in my "hip flexors," and she said she thought the muscles in my back had "seized up" into what I call the "slab of hot concrete" because these past 4 years they've been taking over for my hips in keeping me upright and mobile.

                But profastinator8, I am worried because 1) I am not sure if you've been diagnosed with MS yet; and 2) you don't have health insurance.

                And please know that it took me YEARS to be diagnosed with MS (the doctors I saw attributed my symptoms to anxiety until I could no longer walk -- then they did an MRI) and it's obviously taken me YEARS to be diagnosed with spasticity -- and OMG! (as my sweet daughter would say!) -- for the second hour after the Baclofen was administered during my trial I was a 1 out of 10 on the pain scale; I could stand upright easily; I could walk fluidly; I was even so elated that I danced for the first time since I was in my 20s! For perspective, I have been 7-10 out of 10 on the pain scale for the last 3 years; and the longest I can stand upright as of now is 5 minutes.

                I also lost my own health insurance after I had to resign my job as an English professor due to my MS-related disability (which was as a result of what I now know was spasticity) and after my ex-husband and I divorced.

                It's obvious from your post a year ago and your most recent post that you and I have many of the same symptoms in common, down to the most details (like the 4:00 problem).

                But I am so concerned because my husband said if you haven't been diagnosed with MS then it could be that your symptoms are due to another medical condition, and if so, it's most important to know what underlying condition is at the root of your symptoms.

                And the health insurance issue is part and parcel of that: how do you get adequate -- much less competent -- much less smart and compassionate -- care if you don't have health insurance?

                After my ex-husband and I divorced and I'd already had to resign from my job because of my disability, I went to the Department of Health and Human Services Office in my state in Michigan and found that I qualified for Medicaid -- which allowed me to see the neurologist who led me to Physical Medicine and Rehabilitation Specialist who finally agreed to put me on the wait list for the Baclofen pump trial!

                I don't mean to say any of that was easy, or that my circumstances are the same as yours.

                It's just that from my experience, I had a diagnosis of MS AND (thank goodness!) health insurance, and it still took four years for me to get to the point that my spasticity has been medically authenticated and -- at the same time -- (and again, thank goodness!) I have a chance for relief with the Baclofen pump!

                But if you have a chance, please tell me if anything I've said has helped. I just want to make sure you have a diagnosis -- and the insurance you need to get it -- before you start what it already an uphill battle (though a diagnosis insurance are ALSO uphill battles!).

                I'm sending you lots of strength and lots of hugs.