Spasms and Stiffness: Life with MS Spasticity

Spasms and Stiffness: Life with MS Spasticity

As I sit down to write this, my train of thought is constantly being interrupted. Not because of brain fog, like you might suspect, but because the muscles in my right leg won’t stop moving. Like many with multiple sclerosis, I have to endure what we call spasticity. With regards to MS, spasticity refers to two symptoms: uncontrollable muscle spasms and muscle stiffness. As you can imagine, these symptoms can be extremely annoying and even painful at times. There are some ways to battle them; however, the various methods can have mixed results.

As with all symptoms in multiple sclerosis, levels and types of spasticity can vary from person to person. In my case, I suffer primarily from uncontrollable muscle spasms. Usually, these occur in my legs and arms. These spasms will occur out of nowhere, often when I least expect it. I’ve included a small video here of one of my spasms (it’s mostly apparent at the end of the video). It may not look like much, if you aren’t looking for it, you might not even see it (I have this happen in public and much of the time no one even notices). That little bit of movement may also not seem like a big deal, but when it happens repeatedly, it becomes very annoying. To me, it’s still crazy that muscles in my body can start moving without my control. It’s like I have these zombie limbs some of the time. It causes me to drop things, lose concentration, and overall just have trouble being comfortable.  I’ve talked about my issues with painsomnia before, and I include these spasms with that. Imagine trying to sleep with some of your muscles moving uncontrollably, it’s not easy. Even if I’m sitting at my desk or on the couch, when this happens, it’s hard to be comfortable. It makes it hard to accomplish any task I might be working on, whether that’s housework, writing this article, or even sleeping.


While these uncontrollable spasms are my worst problem spasticity-wise, I am not immune to the issue of muscle stiffness. Seemingly random muscle stiffness is something that plagues a large number of those battling MS (some folks may not even realize it’s MS that is causing it). For me, it’s a tightness of the muscle that can make it hard to move. As with the spasms, this will often come on when I don’t expect it. Also affecting my arms and legs, it can actually make it hard for me to even move the muscles that are experiencing it. That can lead to all sorts of issues, from dropping things to falling. This tightness can also become pretty painful at times.

It’s crazy right? I either can’t stop my muscles from moving or I can’t move them at all. Either way, it gives me a bizarre feeling that my body is betraying me. It’s as though my body has staged a mutiny!  I have been able to fight back though (even though it really hasn’t resulted in a complete win for me). Like many, I have tried Baclofen, however, I didn’t have a great experience with it (my fatigue was exceptionally worse with it). These days, when my spasticity is really bad, I resort to medical marijuana which has been very helpful. I also like to consult this list of tips that MultipleSclerosis.net has compiled from its readers. There are still many days though when nothing seems to help and I have to grin and bear it. How about you? For those with MS, do you suffer from spasticity? If so, how do you deal with it? If you don’t have MS, thanks for taking the time to read a little about our disease, I hope it was eye opening!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (149)
  • DonnaH.
    2 days ago

    Sorry hit wrong button….
    Naturally a klutz is where I was going.
    It’s very frustrating, makes me angry when simple things like making a cup of coffee becomes spring cleaning !
    As for the muscle tightness I feel your pain (literally). Spasticity is worse for my partner that’s who gets kicked all the time.
    I also rely on the medical marijuana at night. Hense some rest. Although it doesn’t keep me from feeling like I ran a marathon come morning. Like most of us I just suck it up and continue moving and living each day the best I can.

  • Devin Garlit moderator author
    2 days ago

    Thank you @DonnaH! Appreciate you sharing your story, and no worries about hitting the wrong button, I’m sure most of us do that A LOT!

  • DonnaH.
    2 days ago

    Mine is worse in bed, although during the day randomly I can’t seem to lift my feet. Almost as though they are stuck in thick mud.
    As for dropping things ALWAYS. No one is allowed in the kitchen with me.
    We never understood why I was so dangerous to anything near the floor. We make fun of it now that we know why. Just knowing I’m not nat

  • Isha0822
    6 days ago

    Hi all, I had my first bout of MS when I was 25. My ENTIRE left side went completely numb for an entire month. I could feel nothing, not even fire. When I went to the ER a month later the feeling on that side miraculously returned. The Dr said I had a pinched nerve and to take 2 Advil. I hadn’t had any more issues until I turned 40 when I started falling on simple walks. I had the MRIs done and a spinal tap (hated that) and found out that I had MS then in 2017. I had 8 out of the 4 bands they use to predict it. However, I will say there has to be something said for Marijuana as I’ve been around it all my life and have even tried it and haven’t had ANY knowledge of me having MS until this late in my life. Maybe it’s also because I have the most positive parent (who was shot at the age of 12 himself (in the pinal chord – an L5 injury) and he doesn’t have a negative bone in his body). I am 43 now and am having slight stiffness and minor tremors in my left side but they aren’t painful. I still trip but play it off and heat is no longer my friend but I’m still good. This is my first time on this site but I’m happy to know I am not alone and now I know the real cause of those tremors. Bless everyone who’s going through MS. Stay positive and know that we’re just like everyone else. I’m considering myself as special and this issue just means you’ll just have to love me harder. If u can’t that’s on you. Because I’m still the bomb! Like my dad says a positive mind can overcome all. Just think, he was told he’d never walk on his own. Now, he uses crutches and braces and cuts the grass, builds fences and decks and things. If his disability isn’t stopping him, I’m not going to let this stop me! Hugs and Kisses to all!

  • Devin Garlit moderator author
    6 days ago

    Thanks so much @Isha0822 , and welcome! Appreciate you sharing some of your story!

  • Giamia
    1 week ago

    Get them more at rest then in movement. Dr says because i dont realize them that much when i am active. Have ms sibce i was 23 69 now. Have done well even though i needed 2 hips and a knee due to extended prednisone use avonex now. So many advances since i was rx

  • MSSurvivor
    6 days ago

    Hi. I am 44 and have been recently diagnosed with avascular necrosis in both my hips. It is bad in my left hip. I am having ablations done on 2 of my femoral nerves the 14th. They are trying to stay away from doing a hip replacement due to my age. I see that you have had hips done and I was wondering if you have AVN and if they tried ablations before you had hip surgery. Thank you

  • Donna Steigleder moderator
    6 days ago

    MSSSurvivor,
    Just wanted to wish you the best for your upcoming surgery on the 14th. I know any surgery can be scary but especially for someone with MS and wanted to, therefore, send you a special shout out of encouragement for all things good for next week – good healing, a good medical and surgical team, good caregivers- and a swift and complete recovery. Take care, Donna Steigleder, Moderator

  • CarolJoy
    1 week ago

    Drinking lots of water helps with my spasms & cramping. Staying away from salt and sugar helps a lot too. However, you’re in the bathroom more, transferring can be exhausting.

  • Gmrobin13
    2 weeks ago

    Hi, New to this site. Have you asked Drs about Nerve Blocks for Pain and Spasms?
    Maybe Botox injections?

  • MSSurvivor
    6 days ago

    I have had 2 nerve blocks on 2 femoral nerves last month. Feb 14th I am having ablations done on both those nerves. I have AVN in both my hips.

  • JD67
    2 weeks ago

    I have the same thing happening in my legs,arms,
    Chest and my face. Range from just a couple slowly to
    6-8 extremely fast.
    My left arm will jerk hard enough to move it about
    6-8 inches. My upper back and neck jerk same as my arm. I have had several back injuries since age of 13. Now that I’m 51 and seen many doctors through the years and no answer to why I have these problems. My memory is pretty much useless most of the time. It’s hard to understand the things I use to do I can’t or don’t remember even knowing how to do it. Haven’t done my checkbook in couple years. Don’t really have anyone available to help me with dr’s and appointments.
    Most days I’m fogged and alone.

  • Gmrobin13
    2 weeks ago

    Hi, Do you live alone?

  • Mjnotms
    2 weeks ago

    I have those. No I have something new. Its awful, I call it bone bending torture. Feels like the side void my calf is bending inward…..can’t find a home comfort yet, too new…yikes keeping hope. Cry a lot, when no-ones looking.

  • itasara
    3 weeks ago

    I can’t say I have spasms per say, but I do have muscle cramps in my toes and ankles that are very painful similar to “charley horse” type cramps. The only way to resolve this is to pull the bottoms of my feet up toward my head. Sometimes I have to manually to this because I can’t do it any other way. This usually occurs upon waking in the morning. Sometimes, but not often, my feel will cramp up when I am not in bed. I do take magnesium and calcium which may help, but I still get these cramps often. I don’t know these cramps are caused by MS or something else.

  • Gmrobin13
    2 weeks ago

    Have you talked to your Dr. Again a out This? Maybe you need more fluid in diet. Also, maybe more stretching, talk to a Physcial Therapist. In addition, maybe you can sleep in different position?

  • Devin Garlit moderator author
    3 weeks ago

    Thank you @itasara, it’s very possible. In addition to actual spasms, muscle tightness can be a very big problem for those with MS.

  • Cathy
    4 weeks ago

    I recently had hip replacement surgery and was transferred to a sub acute rehab center. I’ve always suffered from spasms, which I attributed to restless leg syndrome. This is the firsttime I had an operation and the first time I lived and slept in a hospital like setting in my entire life. Except for the birth of my three children, I was only hospitalized dueto MS, two timesIt was this most recent time that I started to notice that my legs, especially the right one, would lock at the knee making it almost impossible to bend. Umagine both my legs locking together when the nurse is trying to insert a catheter into my bladder. It was so embarrassing. I could not open my legs!Also when the nurses would try to get me ready for bed, my pull up brief was very hard to get on again because my legs wouldn’t bend. Very embarrassing. My doctor prescribed Cyclobenzaprine which has helped with the spasms, but not the rigidity of my legs. Also a new pain appeared out of no where. A shooting nerve pain that would go down my left thigh when I would try to stand and walk with my walker. The whole three weeks while living at the rehab center I was having this problem which made it hard for the PT’s to work with me and get me “up and walking” like all the other hip replacement patients, which were 10-15 years older than my and were regaining their strength back a heck of a lot faster than me. I was prescribed Gabapentin which helped so much. I still haven’t found relief from the rigidity though. It’s very hard for my husband to bend my legs at the knee to get them into the car, what an ordeal! It makes me not want to go anywhere or do anything.

  • Devin Garlit moderator author
    4 weeks ago

    Thank you @Cathy, that sounds very rough, very much appreciate you sharing, I’m sure there are many people here that have been through a similar situation and will feel some comfort hearing that they aren’t alone.

  • StephNA311
    4 weeks ago

    Yeah I just read this one about the ‘Life with MS Spasticity’ that was written a couple of years ago… Zombie legs has always been my norm with MS I remember being little and having teachers and family (I did not do the friend thing in school, to much to remember… “who says what?” “who isn’t talking with who?” what to say/not say I’m LFL aka loner for life and that my dears is best for me) getting pissy with me cause they thought my stiff leg walk was fake and teachers forcing me to continue on in gum until I cried and cried they called me “Difficult” and I’d limp to the sick room or to the office to call my parents to go home for the second or third day this week… My attendance record was horrible.

  • Devin Garlit moderator author
    4 weeks ago

    Thanks so much for sharing StephNA311! I love the phrase “zombie legs”, it seems so appropriate!

  • StephNA311
    4 weeks ago

    I read your post… I understand EXACTLY what you go through. I even carry a bottle on my person in case of a sudden washroom emergency going to strange places or on ANY HIGHWAY. I’m not a physically meet and greet person I have a high case of ‘stranger danger’ but I’m giving this site a chance. I have no interest in Facebook whatsoever. FYI.

  • Devin Garlit moderator author
    4 weeks ago

    Thank you @StephNA311, I hope you enjoy what we have to offer here, or rather, I hope it is helpful!

  • StephNA311
    4 weeks ago

    This website yes very helpful so far. I really always considered myself the only one. It’s so new to me to see that I’m one OF many not one IN many.

  • ShelbyComito moderator
    4 weeks ago

    I’m so glad to hear that our community has been so helpful @StephNA311! Thank you for taking the time to share your feedback and thank you for being here. Best, Shelby, MultipleSclerosis.net Team Member

  • Vernon
    4 weeks ago

    IhavehadMSsince2006.ihavehadmusclespasmsoccasionally, but not severe.oneofthethingsihavenoticedisthaticanbesittinginmychairandhavesharppainin Thethe soul of my feet.

  • Devin Garlit moderator author
    4 weeks ago

    Thank you @Vernon, very sorry to hear that. Pain can be big problem for those with MS!

    https://multiplesclerosis.net/living-with-ms/the-torture-that-is-chronic-pain/

  • raminazzal64
    1 month ago

    I have MS also. I have the spasticity which translates to not being able to straighten my right leg fully. Effectively my left leg is now longer, because the right is always tensed, and the right hamstring is often taught. My dr gives me Botox injections in my right hamstring and adductors. It really helps. It relaxes some of the spasticity. Of course, there is always pain in the right leg as well. I lift weights in the gym a few times a week which helps.

  • Devin Garlit moderator author
    1 month ago

    Thanks so much for sharing raminazzal64!

  • chong61
    4 months ago

    Yep, I have the muscles that do their own thing without checking with me. Tried Baclofen and was allergic. I have tried lots of different medicines to no avail. Finally settled on Gabapentin in spaced doses during the day and then amitriptyline and diazepam together for sleep. Still my right leg and arm wake me up.

    Medical marijuana is not available in my state.

  • 4 months ago

    Myhusbandd

  • BethSlusher
    4 months ago

    This was a really great article. For the longest time I thought that the spasticity were just twitches.I now know that they are not just twitches but a symptom of the MS. As I go along the journey of learning about MS I find that many of my symptoms started very long time ago. They went undiagnosed and I had a doctor tell me that all of these things were in my head. I wish I could go backAnd tell him that it is all in my head just not the way he meant.

  • Mystery-ailments
    4 months ago

    I get mystery stiffness in muscles and joints along with spasms. Over the years I’ve become a habitual joint popper to the point that I can now count up to 74 individual joints I can pop, fingers, toes, knees, shoulders, spine, wrists, ankles and so on. I even wake up in my sleep popping joints completely unaware I’m even doing so until I’m awake. This joint popping seems to help somewhat, but it’s also entertaining to myself as well as the Mrs. Every few months I’ll find a new joint I didn’t know I could pop.
    Does popping joints help anyone else? If absolutely nothing else it’s an endless source of entertainment for the entire family.

  • Mystery-ailments
    4 months ago

    By the way, pain killers actually make popping joints easier. I’m not in any way, shape or form suggesting that anyone become a narcotic addict just to make popping joints easier..but it does help and popping joints helps me to ease some of the spasms..

  • Sandyrick
    4 months ago

    Hello..YES, I SUFFER mainly when I lay down or retire for the evening.. The elasticity is have, effects my lower calves and my heels.. If I lay one position all night and then awaken in the morning..the back of my legs and heels if my feet hurt.. I have taken everything..Now I am taken a low dosage pain killer and it helps. I am now also fighting fatigue.. I just hope someday their will be cure for our new generation..Sandy

  • DeniseC
    5 months ago

    I have just started Sativex a month ago. Ridiculously expensive! Wanted to try for a month to see if it worked.

    Upsides
    -Great stuff and I can almost time it to when it kicks in even if it doesnt last that long. If I take one dose then an hour later my right leg starts working so much better, no longer dragging. Can also walk up stairs without my foot dragging up…lovely! 20 minutes and I can touch type accurately… and fast as (I have spasticity in right side of body).
    – Any repreive without feeling like you are going to fall over because your legs feel like jelly (one thing Baclofen does for me…yuk) fits the bill (though I did get a bit dizzy during the first week so til you get used to it stay safe).
    – I time it to the hour and then go on my crosstrainer for a workout, gently, for about 6-10 minutes. Helps those muscles that have not been exercising due to my spastic muscles taking all the load. Also good for cardio.

    Downsides for me
    -I cant take final dose after 7.30pm or I am wide awake.
    -A bit of a hassle. You need to, slowly over a couple of weeks, titrate up to your ideal dose which for me is a dose of about 7 or about every 2.5 hours.
    -Comes in packs of 3 vials so wont even last a month if you need more sprays a day to get a good result.
    -Just available in Australia over a month ago(August 18) and only available as adjunct therapy where other spasticity drugs not helping. As such it is ridiculously expensive due to the class of drug it is.

    Worth advocating for this one to get the price down.

  • Devin Garlit moderator author
    5 months ago

    Thanks DeniseC, great to hear about your experience, I haven’t had a chance to read many first hand accounts yet, thanks for sharing!

  • bikergirl
    5 months ago

    I wish their was one pill u can take for muscle spasms the pain brain fog the depression . Help reroute your brain to be smart again .speach problems . Head ackles numbness weakness

  • dali
    5 months ago

    To deal with my stiffness, I have begun taking restorative pilates and I’m really impressed with how 4 visits later I seem to be responding. (It’s a way to stretch using a machine as resistance, but hard to desc. It builds up your core).
    I also use a foam roller to give myself deep massage. I discovered this after going to PT for severe pain in my shins, and I could barely let the PT touch my legs. He had me on the roller and I couldn’t believe how painful it was at first, but now I use it daily all over my legs, neck, back and shoulders. I have paid a lot of $ for massage in the past and just couldn’t afford it anymore, and I find this is surprisingly close, though it can be a bit tiring since you have to do all the moving. I have 2: a dense roller and a much softer roller (they are about 3 feet long and 5 inches tall) and use them on different parts of my body depending on what pressure and density I can handle.

  • dali
    5 months ago

    I have MS. I have never been diagnosed with restless leg syndrome (RLS). I do have sleep apnea, so have had over a dozen sleep tests which is how they normally diagnose RLS, so when I got leg spasticity I convinced my Dr. to let me try the pills for RLS. So far (1 year later) they are working. I can sleep through the night!! Ask your Dr. about Pramipexole.

  • DeniseC
    5 months ago

    Wow! Great news. Is that the Clonazepam.

  • dali
    5 months ago

    Pramipexole is the generic for Requip.

  • Jessica
    6 months ago

    Hi all! I’m new to this community but was diagnosed with MS in February 2013 (after experiencing a BIG attack that temporarily paralyzed my entire right upper body & parts of my right leg & abdomen). After lots of PT, OT, & ST, I went back to work & still work full time as an Accountant. Sitting at a desk is pretty much my life 5 days a week. I recently started going to Massage Envy one night a week for my stiffness & tense muscles, & massage has helped my spasticity SO MUCH. My therapist focuses on my “knotty” parts which are primarily in my right leg, shoulder blade, & forearm. He uses his fingers to roll out every little knot he finds & then for about a day, I feel mostly MS free (body wise anyway). I rest better the night I have a massage more than I do any other night during the week No tense muscles, no curled up fingers, & no “hot spots.” The temporary relief of my physical symptoms is so worth it for me, & the more I have gone the less tense my muscles seem to get. But when I miss a session, it is back to square one, so it is something that I need to do consistently to get the most benefit. I hope this information encourages other MSers to give Massage Therapy a try if you haven’t already. They also offer assisted stretch therapy at Massage Envy. I have only done that once since I would rather spend my money on massages, but that did seem to help too. Massage & Stretch Therapy can be expensive, so I use my flexible spending account at work to pay for the sessions since insurance won’t cover them. I also have started selling unwanted “junk” around my house on eBay to help pay for my sessions. If you have or can find the financial resources, I would encourage trying massage & stretch therapy to help alleviate some of the awful pain spasticity & spasms can cause.

  • DeniseC
    5 months ago

    I ended up going through a cycle of chronic pain when I was getting a regular massage. Glad it is working for you.

  • dg02904
    6 months ago

    I

  • mhaar
    6 months ago

    Struggled with this for a long time, but finally problem solved! Baclofen and tizidine both made me sleepy, and only “sort of” worked. Neurologist tried 4mg ER ropinerole, works like a charm!!!!!
    It will not make it stop, but since taking the ER kind daily, it seems to keep it from starting! Have not had the spazy thing in my leg since starting (except the two days where i forgot to take it and was at work) i still get the stiffness here and there, but it totally solved the painful, ANNOYING, spasms.

  • MegMS1954
    6 months ago

    I do get spasms, quite often. More severe at night. I do take Baclofen to address my Spasms. It is a helpful medication for addressing my spasms. Especially do I get spasms in my legs, feet, and upper right arm. My legs and my hands get spasms that can be quite painful. It is the same with my feet, bilaterally. Too is it such with my upper right arm and shoulder. My back also gets spasms. Baclofen is my Go To Medication.

  • Devin Garlit moderator author
    6 months ago

    Thanks you 1k9ly29! Baclofen is an extremely helpful medication to so many people with spasms. I’m glad to hear it’s helpful for you too!

  • 7 months ago

    I have been using CBD (non THC) gummies with some success due to Marijuana not being legal in Texas. It really helps!

  • Devin Garlit moderator author
    7 months ago

    Thank you, I have also had a great experience with CBD: https://multiplesclerosis.net/living-with-ms/cbd-hemp-how-helped/

  • lesliec1971
    7 months ago

    I can relate to all of this.Try”theraworx”foam.
    Over-the-countercvsforspasms.
    It is miraculous.

  • lesliec1971
    7 months ago

    I

  • NmsB
    7 months ago

    I am a big believer in the benefits of medical marijuana and CBD oils. My biggest issue is the spasticity in my legs. I’m actually experiencing it right now. I discovered a CBD oil with added AC/DC terpenes works wonders for my pain and spasticity.

  • DeniseC
    5 months ago

    Do you have a brand, or do you get it made up for you?

  • eengel1984
    7 months ago

    I

  • Cindisque
    7 months ago

    Hello! My first post on this web site: when I get the ‘spasms’ I take Magnesium, and they clear right up.

    Currently taking Mg Gycinate 200mg tablets: will take as many as 3 tablets at night before going to sleep. I take as many as needed until spasms stop.

    I took 1/2 pill of Baclofen one time – had EVERY side effect listed, including dizzyness, so stopped that.

    And – I thought my muscle spasms were ‘restless legs’ syndrome until logging into this web site!

  • Weezy
    8 months ago

    I have tried describing my symptoms to my primary doc but just can’t quite come up with the words. The left side of my body and the right side of my face are numb…Maybe that isn’t the right word? If I run my fingernails across my left arm or leg, for instance, I can feel the pressure, but it feels as though I am being touched through a heavy coat. I can burn myself and not notice that I did it. Ditto with bruises. No idea where they came from because I have altered sensations. Is that what you all call numbness? The pain (pretty wicked) in my legs feels as though someone is taking a rolling pin and rolling it all the way up and down my legs as hard as they can. At night, the muscles in my legs and esp my calves will spasm hard enough to wake me up. I tried Baclofen and NSAIDS, but it gave me gastritis, so no more of that for me. Copaxone gave me hives. I had 4 different neurologists (after MRI’s, spinal taps and extensive testing) give different opinions: Yes, I definitely had MS, Maybe I had MS, No I didn’t have MS, and one wasn’t sure, but couldn’t figure out what else it could be. I got so frustrated that I finally just quit going. (None of them are still practicing in my area.) I have also tried CBD oil for one month. Didn’t see much improvement. I can’t do medical marijuana as I would instantly be fired from my job as a nurse. After 32 years, I would like to make it to retirement with a clean record. Can anyone relate to these symptoms? I feel like I am nuts sometimes. The pain is so real!

  • itasara
    3 weeks ago

    You said, “I can feel the pressure, but it feels as though I am being touched through a heavy coat” and I can related to this. I feel like I have socks on when I don’t. And when I walk on the floor I feel like I am walking on sand. I do know that this was permanent damaged caused from Transverse Myelitis 13 years ago and that was the first and only major symptom I had and have had that let to my MS diagnosis. So I understand when you say numbness is hard to describe. I do have feeling in my toes and foot. Maybe it isn’t the correct term but I haven’t found a better one. I had two lesions on my spine that caused this.

  • dali
    5 months ago

    Weezy,
    I feel for you! It took me over 10 years to get diagnosed, after getting so many different diagnoses. I don’t know how far you live from a major teaching hospital, but that’s what I finally did (UCSanFrancisco). Even though I didn’t want to have it, I must admit it was a great relief to know what was wrong.
    And I then realized that in fact I’d had it since my late teens, though wasn’t diag. until age 42 which explained a lot about my life.
    Here’s the thing: what happens if you live life as if you had MS and really took care of yourself. Getting a ton of sleep, eating well, trying not to put yourself in stressful situations. Even if you cannot get a diagnosis right now, see if that helps you in any way. Then if you get a little more energy, you might decide to try going through the gauntlet of more testing, or not.
    Wishing you well.

  • NmsB
    7 months ago

    Try CBD oil with added Terpenes. I’m not saying it will work for everyone, but it does the trick for me. I’ve been taking CBD oil with AC/DC terpenes and it has worked wonders for me. 🙂

  • kymrob
    8 months ago

    I have the same thing as you do, but I also have a lot of nerve pain in my feet. My daughter made me some essential oil for my face (wrinkles). I was desperate one night, and rubbed it on my feet. I slept better than I had in months! It was frankincense and Myrrh, with some other jojoba?? oil. I know this mixture has not been proven helpful for nerve pain, but I swear it works!!

  • DeniseC
    6 months ago

    Hi there. Interested in the essential oils recipe. You just never know where the win will come from. Thanks for your feedback

  • Sycoraxepp
    8 months ago

    My right foot and big toe have been moving for a few years now. My big toe for almost a decade. What bothers me though is something that started about a year or so ago. It’s my stomach muscles, possibly my diaphragm too, not sure. It causes my shoulders to jerk forward each time they flex , unflex my shoulders go back. Over and over quickly. I’m wondering if I have a 6 pack somewhere in my stomach. Anyways, it eventually causes pain for me. I find when I’m hoping to sleep is when it comes most often. It seems to be my upper stomach area.
    I will try the medical pot for it hopefully a little puff will stop it. Im getting great success with the nausea from vertigo with the vaporizer.
    There are so many things I didn’t know why or what it is called.

  • vonda_b
    8 months ago

    Tizanidine 3 times a day and Requip 1 or 2 times a day have helped my leg spasicity. Stretching throughout the day helps, but that’s not always possible, especially when I’m at work.

  • MoonShadow
    8 months ago

    I suffer from severe spasticity in my legs and torso, which Can’t extend all the way up to my torso. My back muscles tend to become rigid, making simply getting out of bed difficult. I am currently on Valium 45mg/day, which I hate,And also on Zanaflex. Bacolfendoes not seem to work for me anymore.I hear medical marijuana is the best treatment, but I have not discussed it with my doctor.

  • Devin Garlit moderator author
    8 months ago

    Thanks so much for sharing MoonShadow. Many people do have good success with marijuana and/or CBD oil, however everyone is different. I’m sure something is out there that will help you find some relief, you just haven’t found it yet. Good luck on the search and remember that getting some new opinions from other doctors can be extremely helpful.

  • freedom
    9 months ago

    Hi. I suffer both. Mostly stiffness in my quads, calfs. It is slowly becoming more frequent. So painful at night. Disrupts sleep. Already have chronic insomnia. I’m on all many drugs….ugh. Thank for your writings. Gives me hope. I’m not alone.

  • Devin Garlit moderator author
    9 months ago

    Thank you freedom, never give up home!

  • sevensix
    9 months ago

    While Baclofen tabs are awful leaving too much to be desired, the Intrathecal Baclofen Pump is the cat’s meow for treatment of spasticity. One problem, though, it may take months or years (as it was for me) to achieve an effective titration. After 40 months of experimenting with increasing titrations I arrived at what is now an effective dose of 614.7 mcg/day. I’m happy with that for now.
    Be patient, it does take time. My first titration was 15 mcg/day. Like I said it takes time, but worth it.
    -sevenxix

  • Michraf
    9 months ago

    I am going for the morphine pump trial in May 30. I am very leary of it. What was the procedure/recoverery like.

  • Devin Garlit moderator author
    9 months ago

    Thank for sharing sevinsix, finding the right titration can take a while, as you point out, it’s important to stay patient! That’s true of so many treatments with this disease!

  • kettlemess4u
    9 months ago

    Thank you. This is the first time I have commented on this blog. I was diagnosed with MS in 1979 at the age of 27. I have been bothered with intermittent muscle spasms and stiffness for about the last 20 years(I’m now 70) and the baclofen worked well. This past year that all changed. I opted for a knee replacement. Hoping that would help my failing use of right leg(drop foot etc.) and progressive arthritis. even my neurologist said to go for it. Immediately after surgery the muscle spasms were so bad in that right leg that a could not do therapy the way I was suppose to and long story short I’m now in a wheelchair. 9 months. The hamstrings and glutes are so retracted that I’m trying different things including a fancy brace 3 times and day etc. to try and stretch them.The pain is considerable. I’m on a ot of baclofen and also pain med through a pain clinic. They have been very sympathic and helpful with the pain. My state is s still illegal (Alabama) for med marijuana. My cognitive issues have gotten much worse and that could be the high doses of Baclofen. and of course the fatigue is great. Thank you for letting me ramble. I haven’t been able to do that. I know that there are those with much worse things going on and that in many ways I am Blessed . Your spasticity issues in your story touch me. Thank you.

  • DeniseC
    6 months ago

    Had a fall and needed a total hip replacement. They said three months and I would be back at work! What a laugh. Pain and spasms after the op had me in chronic pain. Finally after 18 months and working with a pain clinic the pain has subsided. I got off Celebrex a few months ago and have just moved across to a walker with a chair last week. Trying to eventually walk the distance to the local coffee shop 2 blocks away. Some say that the anaesthetic messes with things because I have MS. Hang in there warrior I am totally on the same page as you.

  • lhalvor
    9 months ago

    Thanks for the definition.

  • rolly
    9 months ago

    Thanks for sharing your experience with spasticity, much of which sounds very familiar to me.

    It is indeed crazy that I have legs that no longer carry me or fulfill any kind of useful function (other than as a surface to put things on), and which I can no longer intentionally move, yet which often – and usually at the most inconvenient times – take on a life of their own.

    For me, spasticity also comes in the form of involuntary movements. Mostly those spasms happen at night in bed (keeping me from sleeping) or during transfers, but sometimes also when sitting in my wheelchair, hitting me out of blue and sometimes knocking a foot off the footplate.

    And then there is the spasticity in the shape of muscle stiffness. At the worst times this prevents me from transferring from bed into my wheelchair, as my legs will not allow themselves to be bent. They’re like wooden logs, and it can take quite some time (and some massaging by my wife) to get the stiffness out of them.

    I’m on Baclofen at the daily maximum dosage (80mg) my doctor allows. Sometimes it works, sometimes it doesn’t. But at all times it increases my fatigue. But it’s just something I’ve grown to live with. No marijuana here, sadly, so I have to help myself with the Baclofen, massages – and a lot of patience.

  • Devin Garlit moderator author
    9 months ago

    Thanks so much for sharing rolly, your’s is a very common experience and I appreciate you taking the time to talk about it. I love getting as many perspectives out there as possible!

  • Nobu
    9 months ago

    I have radiating pain that is on my right flank at the bottom of the rib cage. I also have a lesion near that location on the spine. I had lidociane patches for a skin issue and tried using one on my flank at night. What great relief, and I only need to use about a 2×3 inch part of a patch, (they can be cut with a scissor). I have a specific spot where the pain emanates and only use the patch when the pain really ramps up, but what a help it has been.

  • sevensix
    10 months ago

    Somewhere in my past I got suckered into Baclofen tabs (20mgx4) for mild spasticity and later used Tizanidine to calm the nerves while terrorized by wild hallucinations. The hallucinations were cheap entertainment but the Baclofen tabs were not fun at all. Then one day at PT whole body spasms hit like lightening sending me to ER for immediate treatment. A week later another ER visit. At that time it was decided to treat with liquid Atavan, a very effective remedy but a powerful sedative. Memory loss was legendary like cog fog deluxe. achieved the window of pharmaceutical effectiveness.
    To the rescue eventually came the Intrathecal Baclofen Pump. Forty-four months later I have finally arrived at the perceived therapeutic window of effectiveness utilizing bi-level dose delivery. My spasms are less violent, infrequent, responds very well to infusion; however, I do request small increases every 92 days during pump refills. I am happy with the pump.
    BTW surgery is a simple one hour procedure with super fast recovery. There was no pain or discomfort although in the process of positioning the catheter I did develop a headache from a lumbar puncture leak at the insertion site. Overall, a beneficial experience with positive outcomes. Thanks.
    -sevensix

  • Michraf
    9 months ago

    Thank you. Good to know. I will talk to my nuero about using baclofen instead of morphine,

  • sevensix
    10 months ago

    Oops. Please disregard an obvious proof reading error. That one got away from me.
    -sevensix

  • Devin Garlit moderator author
    10 months ago

    Thanks for sharing sevensix! I think a lot of folks tend to not have great results with the tabs. Some people really swear by the pump though! Thanks for sharing your story, it’s appreciated and helpful!

  • lightweaver
    10 months ago

    Baclofen never worked for me. Am on flexeral which works. There are other meds you can try.

  • Piggie13
    10 months ago

    The muscle spasms I experienced were so severe as to land me in the ER a few times, and even forced me to switch to a car with an automatic transmission. And for me too, Baclofen only made the already profound fatigue exponentially worse, while having no effect whatsoever on the spasms. I was prescribed Flexeril as a last resort for really horrible attacks at home but that literally knocks me unconscious for up to 12 hours and takes 20+ minutes to start working. When medical marijuana was legalized in my state, my doctor (3 of them, actually) finally convinced me to try it, using a vape pen as the quickest and simplest method of delivery. I was shocked and relieved to find the spasms will stop in their tracks within 90 seconds to three minutes max after only one or two draws on that pen. One 500 mg cartridge for around $35 will last me over a month, sometimes longer, used as directed by the specialist who prescribes and monitors it pursuant to strict laws regulating MMJ in our state.I can, of course, only speak for myself, but for the past 4 years I’ve had 100% effectiveness with 0 side effects every time I’m stricken with the muscle spasms using MMJ, so I’m absolutely convinced. I’m so grateful to be living in one of the 29 states (+DC) whose legislators are enlightened enough to understand there is no place for dogma, politics, or mythology in medical science.

  • Cathy
    10 months ago

    I was diagnosed in 1985. Did the Betaseron injections every other night for 18 years. I would hear many MS sufferers talk about pain with MS but I didn’t have any. Well, a few weeks ago my Mom passed away and I guess the stress of it all took it’s toll because I started to get pain in my right hip and running down my thigh into my knee. As the week went on every time I would try to step with my right foot, my leg was stiff and spasming and then I would fall. This happened many times so I decided to spend most of my time in a wheelchair for safety reasons. Bone density test and x rays of hip and thigh show osteoporosis and arthritis. I was prescribed once a month Boniva for the osteoporosis and Celebrex for the arthritis. I have a PT coming twice a week to my house to help with stretching my leg as it is so tight but it is very painful. I was prescribed Baclofen 20 mg three times a day and it helped a little but I was so tired all the time so I now just take 20 mg at night. A friend of mine told me about a TENS unit. Has anyone used one for the stiff muscles and did it help any?

  • Devin Garlit moderator author
    10 months ago

    Thank you Cathy. I had a similar problem with baclofen. I have tried out a TENS unit for leg pain in the past, however, it didn’t help me much. That said, I know that it can be helpful for some people. It might be good to mention that to your PT and see what they think, they may even be able to get one for you to try.

  • Goldnurse1
    11 months ago

    I have intractable burning muscle spasms in my upper back below scapula on my right side. Been there for years. NOTHING helps! From botox to intrathecal pain pump (and everything in between) Blinding white fists of fire spasms.
    Any ideas?

  • jdsbruce
    9 months ago

    I’ve been getting nearly the same pain! Mine happens on the left side and extends to just below my waist. If you find answers, please share!

  • dawn1267
    12 months ago

    I have a lot of spasticity in my legs and across the top of my shoulder blades…weird stuff. I experience most of it when trying to sleep and my legs are just uncomfortable with the “zingers” I call them. I have most issue with muscle tightness. I run and bike as much as I can (not fast, mind you) but my trainer wants me to spend soooooo much time stretching because I have the tightest hamstrings and quads of anyone he has ever seen and they do not seem to get better. In my brain, I think ” duh” , but I still stretch every day. I think that being active and stretching has made it possible for me to be as mobile as I am and to limit how damaging my MS is to my lifestyle desires. I take Zanoflex for my spasticity–it seems to help quiet my legs at night better than Baclofen did and it is not as sedating. Marijuana is legal here, so if I wanted to I can with no hassle, but I have not liked the effects on my brain – making me feel stupid, so I don’t do it very often.

  • Dawnceleste
    5 months ago

    Hi dawn1267, you sound like you have some of the same symptoms I have; weird tightness and spasticity in legs and shoulders esp at night. I try to go on night walks for a few miles, then after i get home i pay for it.
    Try the topical marijuana. They have it as a balm, but you could also try CBD only vape pen cartridges. If there’s no THC, it won’t get you high. I’ve used “P&B Relief Balm”; it works pretty well when my calves stiffen up. I tried Baclofen and it did nothing for me, but I hate having to take pills continuously to keep a steady amount in your blood. Tizanadine (Zanaflex) makes me dizzy. My doctor prescribes me mini Soma (250 mg carisoprodal) and it works somewhat. I usually have to take 2 and be careful of the timing with my other scripts so I don’t get dizzy (I wish my doc would just give me the regular 350 mg Soma). I take 400 mg. Magnesium daily too. Good luck!

  • JanG6036
    1 year ago

    mine are different they hurt a lot and cause my good leg to bounce ( Right side ) bad side will hurt and draw up and all that with the Itch.

    I found that my Ropinirole 0.50 and a hot shower works on my legs a lot and it only takes 5 min to confuse the nerves and such.

  • OneDayAtATime
    1 year ago

    Thank you so much for addressing the issue of medical marijuana. People look at me like I’m nuts when I say I use it for the spasms and pain in my legs! I wish it was more widely acceptable.

  • Shady1388
    11 months ago

    It has been the only thing that has kept me upright! Medical marijuana has helped with quite a few symptoms. It has also assisted in taking me off 5 different meds!

  • katrina
    1 year ago

    I don’t think your nuts. I have heard good things from other MS patients who have used or to use medical marijuana (or regular marijuana..) CBD oil is my choice when regular meds no longer work for spasms and pain. I live in south florida and it has become the new thing here and all of the doctors are getting certified or whatever they need in order to subscribe it. On my last visit my neurologist asked me it I wanted it. I was a little surprised but thought its great there is another option. Downside is its not covered by insurance so its an out of pocket expense and so far there is no real research to determine the right dose for MS patients, so its trial and error with your MD.
    Your not nuts!!

  • Devin Garlit moderator author
    11 months ago

    Thank you @barnowl, it really does take some experimenting. Trying the same amount of drops for a good period of time consistently. When that doesn’t seem to work, increasing and so on. I think with any treatment regarding MS, it takes time and experimentation. This disease requires so much patience, particularly when it comes to treatments.

  • barnowl
    11 months ago

    I finally tried CBD Oil And have been noticing good results but never am quite sure how many drops to use.

  • Sue
    1 year ago

    I know what you mean. I have them too.

  • katrina
    1 year ago

    second post same subject.
    One thing that also helps other than medication is weightbearing..just standing even if leaning against a wall. It is a neuro technique (joint approximation) that helps calm down the spasticity so i can walk better. if i sit too long and then try to stand, it kicks in from the waist down. Sometimes I can walk for a little with my knees and hips bent so the extensor tone doesn’t kick in. Or somedays i walk backward a bit because its less work just to get where I’m going. (usually when no ones around..makes people uncomfortable..lol)

    Then good old stretching feels good and helps keep the tissues lengthened despite them tightening up again. in the last few months I’ve started getting spasticity in my upper extremities, neck/upper traps too, moreso tightness but occasionally spasms.

    Also, spasticity is velocity dependent. The faster you move/walk the more the spasticity will kick in. I walk slower not only because of the MS but also it allows me to control my legs better. I’m lucky, i still get a few hours of the day that i can look normal with all of these techniques and meds, so it may not work for everyone AND like everything with MS everyday may be different on how your body responds. (Yay! sarcasm)

    Just something i have become more aware of that increases my spasticity is if I am in public and worried about how I look or about what my legs are going to do or not do. I have to balance walking. Not enough, but too much walking increases it..and then there can be weakness. And, if my bladder is full and i need to get to a bathroom it will increase my spasticity. (I do take meds for this too which made a huge difference in controlling my bladder)

    For me, mornings are bad and then it eases up and then returns by about 3pm.

    In reference to baclofen …I had bad headaches and tried taking something for that just to take the baclofen. i stopped it for about 3 months and then tried it again and the second time I could tolerate it without headaches. No, the extra fatigue sucks, but i have learned to work through some of it and then go home and rest every afternoon. None of the “anti-fatigue” meds worked for me. Rest is still the best medicene. And staying hydrated, drink water.

  • Singalot
    1 year ago

    I have constant stiffness with spasms, i take Baclofen helps the stiffness to some extent but not completely. So i grin and bare it. I’ve heard medical marijuana works but never tried it.

  • Shollay836
    1 year ago

    Medical marijuana has been my relief.

  • stumblingbumbling
    1 year ago

    I have recently and currently been going to physical theropy. they have shown me a few simple stretches that helped a great deal.So much so I have been able to park my walker at times. give it a try!

  • Devin Garlit moderator author
    1 year ago

    Thank you stumblingbumbling! I’ve had some good success with PT and I always recommend that people give it a shot. Our MS care really should involve much more than our neurologist. Physical, Occupational, and Speech therapists can be essential. As can a good counselor and pain management specialist.

  • kiki33
    1 year ago

    I have had spasms in my leg for 22 years. The leg spasms are a little easier to hide. The spasms in my right arm cause my arm to fly in all directions…violently at times. If in public, I try to hold my arm down. If I don’t control them soon enough, pain sets in. Baclofin helps somewhat, but I can only take at bedtime since it makes me very drowsy. I started applying Copaiba oil. It helps with inflammation and pain in muscles.

  • Devin Garlit moderator author
    1 year ago

    Thank you TLH! I hope you find some relief. I had a similar issue with baclofen, it made me so tired. That while already having bad fatigue made life pretty miserable so I no longer take it.

  • kellyhenson
    1 year ago

    Hi Devin. I’m new to this forum. I have terrible muscle spacticity all over my body, but for the past several months it’s been in my neck and shoulders the worst, but also in my lower back. Do you have any tips for managing this? They are very severe and are extremely painful. I have problems with range of motion because of how stiff my muscles are. I’m currently not on any muscle relaxers. I do, however go to pain management, and they give me trigger point injections. They work well, but only last for 3 days. I’m miserable. I’m hoping you may have some suggestions. Thanks, Kelly

  • Michelle
    1 year ago

    Kelly, I hope you have found some relief. If you haven’t tried PT, defiantly give it a try. Make sure the doc words the federal to include working on ballgame, muscle strength, speciality, etc. I had been doing it for a little while and was only referred for balance, so I was stuck on only balance thanks to insurance…. I’m getting a new referral. ,
    I do have prescription for tizanadine that I take at night, but I can’t take too many days in a row or out makes things worse. I can’t take baclophan(sp?) as it makes things a hundred times worse including being to exhausted during the day and muscles being so tight I end up barely able to walk. I am lucky enough to still be anymore to work, for now, but I have a new boss do.that may be changing), so the use of marijuana is a big no no as there is a zero tolerance policy. And because it is federally illegal, medical cards will not make it acceptable.

    I have issues with tight muscles causing pain in my neck and lower back. Sometimes a nice warm shower helps them to relax and be less painful. I recently stumble on something by “n.aturulz” called total body wellness. It actually helps, significantly. I’m sure you could Google it to see what is in it and find something similar if you wanted.

  • Devin Garlit moderator author
    1 year ago

    Thank you kellyhenson, sorry for the delayed response, I’m playing catch up on a lot of my posts after going through a rough patch. A lot of people have success taking Baclofen, I have not though. Lately, I have had success using CBD oil (https://multiplesclerosis.net/living-with-ms/cbd-hemp-how-helped/) and medical marijuana (https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/). Neither completely rids me of the issue, but it makes it much, much more bearable!

  • DeniseC
    1 year ago

    Yes I struggle with spasticity with MS. I am in pain most of the time. If I sit for more than 15 minutes my groin muscles will stiffen and it will be a struggle to get up. I cannot tolerate Baclofen and so take Diazepam at dinner time so it has kicked in by the time I go to bed. Also taking Lyrica and Endep for sleeping at night. Wake up with a bent leg locked solid every time. Massage and stretching and trying to tell myself I can wait to go to the toilet! If I try to get up without stretching it out my legs feel like they are going to snap.

  • KBee
    1 year ago

    It has taken me awhile to join in, I am never going to be in “my” right frame of mind so I decided to just jump in…I am finally on an MS Med (Tysabri) that is preventing relapses! This article struck a chord with me.

    I was diagnosed 5.5 years ago. Started out with Neuropathy starting at the tips of my toes and running up to my breasts. It started 2 years prior to my diagnosis, it took 3 Dr’s. and many tests to figure it out. My Spasticity consists of muscle hardness that runs completely around my torso. It flows with my circadian rhythm, starts around 1:00 pm and lasts until morning. I have all of the “conditions” one can have with this disease, and have been told that they will be with me for the long haul, along with the comorbidities aside of the RRMS, like hypertension, mood disorders, sleep disorders, arthritis, bursitis in both hips as well as Global Fibromyalgia. Of course each condition needs to be treated by a “Specialist”, I am on SS Disability, needless to say this Disease is not Cheap. But I take a breath each morning and tell myself something good is going to happen today. It could just be a Blue Jay nibbling on the seeds outside my kitchen window. My faith is bringing me through this, along with friends and family. Meditation, Sailing, and staying as active as possible is all one can do.

  • DeniseC
    1 year ago

    I have had an Eastern Rosella nest at my front door for the last 4-5 months. They make such a pretty tune. Her little ones are so big now that they must be ready to fly as they cant fit in there undercover nest properly. All 4 newbies were practicing their song yesterday. I keep the door so that I I can hear them every day and remind myself that not being employed anymore does have some benefits. I used to go to work in the dark and it would be dark by the time I got home. They make a nice deflection from the pain and spasticity I have currently.

  • DeniseC
    1 year ago

    I started getting a twitch on my leg after a total hip replacement 18 months ago. At 12 months the constant twitch shifted across to include contractures a couple of times a day, and a locked bent leg at night. Baclofen has never worked for me. I do find that taking a Diazepam with dinner (8.30pm) allows me to sleep and bypass the twitches phase. 5-10 drops of Hemp oil before bed takes the edge of urinary urgency

  • DeniseC
    1 year ago

    Oh just to add, I still have a locked bent leg at night but figure that if I am only getting up 1-2 times to go to the toilet at least I am getting a bit more sleep. I actually think that the twitching is the worst as it just goes on and on…12 months of hardly any sleep really did my head in. Thank you diazepam and thank you hemp oil for taking the edge off!

  • tessed
    1 year ago

    Ugh, Spasticity.

    For me, the worst part of Spasticity is that it is only in my right foot/leg. Which means if I feel like it is working up, I can’t drive! Imagine your video and my foot on the gas or brake! Not good for ANYONE! So there are days, like today where I have to wait it out. My spasms culminate into a cramp, like a charlie horse, in the right foot. Turning it inward and stiffing it for about a minute. Then it releases and sort of flops and is weak for another minute or two. Usually I am lucky and get a warning, but once when driving I didn’t. There were some guardian angels working that day as I was able to use the left foot and steer into a side street and safely park until it passed.

    I am on 60-70mg of Baclofen a day which do keep these at bay and I have a “release” about every two weeks. When I am sick, say with the flu, or under very high stress it does flare more often. But the days of multiple times a day have passed as I have found the right combination of Baclofen and then Valium at night for the longer periods.

    I will go off on a slight rant here. I was on a clinical trial for 12 hour Baclofen and it work excellent. The best thing about it was that I actually felt better stomach-wise not even realizing what digesting 60-70mg of a medication a day can do to you, plus it was only one medication versus two. Well it never went to the FDA and my thought on that is because it is such an inexpensive drug, the drug companies would rather we needed 6-7 pills a day versus two a day. Really grinds my gears!

  • DonnaFA moderator
    1 year ago

    Hi Tessed! Thanks for being here & sharing your story! That must have been very scary! Have you considered, or spoken with your doctor about hand controls for driving? They may even be able to be covered by insurance. I hope this helps! -Warmly, Donna (MultipleSclerosis.net team)

  • JennPenn
    1 year ago

    I have heard this is a symptom, but didn’t know that I actually suffered from it until you posted your video! Yes! I have spasticity! I just thought it was a random twitch that I get from time to time and that everyone in the world gets it! I am recently diagnosed and that has been my mantra this whole year! Thank you for enlightening me!

  • djg769
    2 years ago

    double vision now is that not fun? no

  • djg769
    2 years ago

    drives me crazy to be so tired but not able to sleep cause my leg either jumps or just aches. I try to get up for a few and then try to go back to sleep

  • DeniseC
    1 year ago

    Try putting a warm hot water bottle on the leg that is doing this. Never hot though as it has its own issues. I also find that Deep Heat takes the edge off + taking Diazepam a couple of hours before you go to bed works to at least stop the twitching/jumping initially.

  • Devin Garlit moderator author
    2 years ago

    Thank you djg769. I very much sympathize, it does make it extremely hard to sleep! If it gets troo bad, make sure you talk to your MS specialist about it, some people do get some relief from things like baclofen.

  • Freida Bailey
    2 years ago

    Yea I suffer from spasms and leg cramps so badly. I’m in tears.
    I am recently diagnosed.
    But this has been going on for years.
    More frequent at weather change.
    I am still working. Not sure for how long .
    It’s so painful and depressing. No one understands. And blury vision also.
    Dropping things.
    Ugh!!
    Staying as positive as possible.

  • tessed
    1 year ago

    Oh yes, the weather really puts me out of wack! Especially when we go from say 70F down to 50F in one day. Watch out leg!

  • Devin Garlit moderator author
    2 years ago

    So sorry to hear Freida! Always remember that there are people here that understand, you are definitely not alone!

  • Shelley D.
    2 years ago

    Hello Devin~ This is my first post! Spaticity, especially in my right leg has been an issue for me for 20 yrs. I ignored it most of the time, trying to stretch to relieve it. I was prescribed Baclofen in the early 2000s, but it seemed to weaken/fatigue me, so I quit taking it. I’ve spent this last year in a wheelchair, & the spasms/tightness have worsened. One of my doctors suggested Botox injections in my quads & a couple other leg muscles. They are a hit or miss attempt, like others (getting the right drug & dosage). It’s an option I didn’t see mentioned yet. Good luck!

  • Freida Bailey
    2 years ago

    Hang in there. Prayers to you.

  • Devin Garlit moderator author
    2 years ago

    Thank you for reading and sharing your experience Shelley D! Really appreciate it! Baclofen had a similar effect on me, making me even more fatigued than I already was (which I’d have thought was impossible!). Thanks for mentioning Botox, I have heard about that now that you mention it!

  • linda walters
    2 years ago

    I am finding taking 200mg of carmanzipine at bedtime helps but only takes me to 2 or 3 am..so now stretching exercises are helping. Hopefully it will continue helping. Baclofen doesn’t do enough. Last year my spasms built up n made my knee so bad I could barely walk. Could not bend at all. I dragged that leg around for over a month. Eventually voltarian creme n physical therapy helped. But it is a constant battle. More so in cold months for some reason. Best of luck to everyone searching for relief.

  • Devin Garlit moderator author
    2 years ago

    Thank you linda walters! I am always interested to hear what others do and am very thankful when they share it here. Sometimes learning what we all do is so important, you never know when someone may see something they haven’t tried, then they try it and it ends up making a massive difference in their life. Thanks so much!

  • Marsha
    2 years ago

    Hi, this is my first time to post.I have PPMS,since 2006.I have recently read alot of your posts Devin, thanks for sharing. You pretty much hit the nail on the head about fatigue and spasms. I get so sick of always feeling guilty about not doing enough to help myself feel better. Whether it is eating better..more exercise..more sleep.I am still able to get around,I use a cane. It seems like my whole life is just this rotten ms.How do you all deal with it??

  • Devin Garlit moderator author
    2 years ago

    Thank you Marsha! (and sorry for my delayed response!). I’ll tell you, it’s hard to deal with it all. I fight feeling depressed often. I try to remember (with my wife’s help) that it’s ok, it’s ok to not do everything, it’s ok to simply do what you can. Easier said than done, guilt is something I battle a lot too. My issues with MS are a big part of my life, I do my best to accept that and adapt as best I can. From everyone I’ve met with MS, I firmly believe MS hits the people that can handle it. It hits some tough people. That’s why that phrase “MS Warrior” is so appropriate. I try to remember that!

  • katrina
    2 years ago

    Ugh. Not looking forward to my future. I have mild spasticity and occasionally muscle spasms which never last long so i just deal with them. i take baclofen for the spasticity which does help me so far with the pain and some of the stiffness associated with the spasticity. Thank you all for sharing. There isn’t always alot of posts related to this topic and MS. Articles are usually associated with spinal cords. However my lesions are all spinal cord so I guess it has similarities. I have found doing an aqua zumba class helps, although not easy to get to. It sounds corny and people will look at you if you walk like frankenstein afterward like me, but it really did help me feel loose the next day. (fyi- the exercise increases my spasticity right after and takes awhile to ease up) But its not a pill and it does help if you can find a class near you. The pool is also outdoors, not a heated indoor pool.

  • Devin Garlit moderator author
    2 years ago

    Thank you katrina! Remember, the future for us is the brightest it’s every been. There are new medications and treatments coming out all the time, so there is reason for hope. I have heard such great things from people who have MS and are able to use a pool, thanks for sharing your experience with that!

  • DonnaFA moderator
    2 years ago

    Hi Katrina, thanks for sharing your thoughts and that you’d like to see more articles on this topic. I’ve passed along your suggestion.

    Oh my goodness, you’re very brave, an outdoor pool in November! I’m glad to hear that the class does help in the long-run.

    Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • marilyn
    2 years ago

    I have spasticity in legs and arms, most of the time I am slipping cause left leg decided to do what it wants,the muscles are so tight they hurt especially when trying to sleep. My thigh muscles are so heavy, tried Balcofen no help, Soma eases it but makes me so groggy. Arms fly in any direction sometimes. Sitting on couch or trying to sit on side of bed is terrible sensation. Often feel like I am turning to stone. Have had MS for 13years now, anyway thanks for letting me vent, have many other symptoms but another time.

  • Devin Garlit moderator author
    2 years ago

    Thank you marilyn! I’m always happy to listen to someone vent, I find it to be super helpful, so I always welcome it! Thanks for reading!

  • DonnaFA moderator
    2 years ago

    Hi marilyn, thanks for sharing your story. I’m sorry to hear that you struggle. Please know that you’re not alone, and that we’re here to share support, and happy to lend a friendly ear when you need to vent. Please never hesitate to reach out here or on our Facebook page. -Warmly, Donna (MultipleSclerosis.net team)

  • Julie
    2 years ago

    This looks just like my legs! Well, except mine aren’t hairy. lol

    My neuro has me taking baclofen and it worked well for a while until my nerves decided they were in charge and not the drugs.

    I haven’t found anything that completely gets rid of the spasticity (which is very painful) so I also do stretching. I pretend this works too. At least it has me actively doing something which I always think is a good thing.

  • Devin Garlit moderator author
    2 years ago

    Thanks Julie! I know exactly what you mean about the stretching, just actively doing something yourself to try to help can make a pretty big difference mentally!

  • Peg
    2 years ago

    I have both of these problems as well. The spasms are mostly in my feet and luckily can be diminished by removing my shoes. I’m in a wheelchair, so this doesn’t stop me from getting around. The stiffness was something else, and I finally had a baclofen pump inserted. The spinal location of the drug release tube takes care of my body below the waist. This alleves the necessity of taking up to 15 oral baclofen tablets. The only upper body spasticity is my right hand. I do take a couple of baclofen tablets a day to relax it enough to keep it semi useable. The only other thing that sometimes helps is having someone stretch my limbs, although family members are not always willing or available.

  • Devin Garlit moderator author
    2 years ago

    Thanks Peg! I have met a few other folks with baclofen pumps. Thank you for mentioning it here. I wanted to mention that but forgot! Thanks for reading and sharing!

  • jensequitur
    2 years ago

    Devin, I’m not a medical professional, but I think what you’re experiencing are fasciculations. They’re caused by damaged nerves. I had this in my right thigh yesterday, and yes, it’s very distracting. They used to say that muscle twitches had nothing to do with MS, but you and I both know that’s BS – I didn’t have them before my diagnosis, and now I have them all the time. Basically the nerve is in constant contact with the brain, and when the signal is disturbed, the muscle will automatically contract. This is why spasms and spasticity occur. I don’t know *why* fasciculations are different from spasms, but with spasms the muscle is in constant contraction, whereas with fasciculations the muscle is getting an intermittent signal.

  • Devin Garlit moderator author
    2 years ago

    Thank you jensequitur!

  • Sue
    2 years ago

    I’m in the progressive state now. My left side is like a hunk of wood. At two or three, I will wake from a deep sleep with spasms in one or both legs. My ankles go flying. I try to get to the edge of the bed. Once I get my leg over, it becomes rigid. I cannot bend it. I try to work with the spasms. Finally, if I can stand and shift the weight the spasm may go away. Maybe not. Before bed I always pop a Baclophen,a neurontin,a Trileptal and a Valium. Sometimes this works, but not always. When the spasms go on for two hours, I want to cry!

  • Tsebitah
    2 years ago

    I can relate to your night time pain Sue. I also wake up in the middle of the night with pain.I take Baclofen, Cardiodepra-levodepa, Valium, at night also and it has begun to quit working…..sometimes I add a sleeping pill also and that sometimes makes the pain go away.

  • Devin Garlit moderator author
    2 years ago

    I’m so sorry to hear that Sue! I hope that you can find some consistent relief soon. Your story is a good example of just how bad spasticity can be, thank you very much for sharing it!

  • cjtmn
    2 years ago

    I’ve been on a walking program for about 8 weeks now, and while my cardio has improved, I feel my legs are getting worse. The stiffness from my rib cage down to my toes makes it difficult to do much of anything. I am not sure if this falls under spasticity or not…but it is awful.

    I’m trying to stretch each day (several times a day), but I don’t know if it’s helping. Seems that my muscles tighten right back up!

  • Tsebitah
    2 years ago

    I have also found that walking and exercise cause me to have pain and stiffness later. But we are supposed to exercise? Ugh

  • Devin Garlit moderator author
    2 years ago

    Sorry to hear that cjtmn! Tightness can certainly fall under spasticity. I’d mention it to your neurologist or physical therapist and see what they think.

  • Gordy
    2 years ago

    I have PPMS , and the spasms plague me terribly. They follow no pattern but seem to get worse if I drink caffeine or eat too much fatty foods or I’m just tired. It’s a lose-lose thing. I also get the ‘straight leg’ thing occasionally, when the muscles just don’t want to bend . Annoying, but I just accept it as part of the whole ugly MS deal. I’ll try medical marijuana , and let you know if it works for me !

  • Devin Garlit moderator author
    2 years ago

    Thank you Gordy! Sorry to hear you have spasticity issues as well. Really appreciate you reading and sharing your thoughts, though I’d never wish it on anyone, it is always comforting to know that others have experienced it and understand!

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