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  • MS_Navigators
    Spasticity is one of the more common symptoms of MS – affecting 80% of people with MS. It may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Because spasticity varies so much from person to person, it must be treated on an individual basis and demands a true partnership between the person with MS, physician, nurse, physical therapist and occupational therapist. Have you found ways to manage spasticity? Share your tips and tricks below.
     
  • maria1
    Gee, I think I feel fine,, then I realize the muscles are solid like a rock, I am almost immune to the awareness of it. I go on about my business as though nothing is bothering me. Once i do begin to notice the spasms everywhere even there where I never thought there were spasms. After pondering awhile I think about how tired I always am. Aha! no wonder, my muscles are always locked and yet I do things. Like driving a car with the locked brakes, only I can muster some movement. No wonder I am so tired. A body in motion tends to stay in motion, but moving something that does not want to move is stupendeous. That I do anything is a mira   cle even though I do not believe in miracles, only surprises. lol

    Yoga, massage, relaxation exercises, meditation, stretching, accupuncture, deep tissue massage, inversion table, hot tub, treadmill, stationary bike, weights, diaphramatic breathing and a variety of drugs. All at times have been good.

    Learning how to pay attention to my body, to keep scanning myself to make sure I am not adding to the tension is catamount. Yes, I am always in spasm, but my attitiude is not making it worse. I am not keeping extra tension. relax relax relax.

    Now that i have graduated to spms things are different for me. All the muscles are always tense. What is making it tolerable is pacing myself, doing a little, noticing when 'overexertion' is making things worse. Learning my new limits, and cursing them, they often piss me off big, when there is a job I want to do, and I only do ten percent, pisses me off good. I am glad I still can get angry.

    It is summetime so the temperature is set for 80 degrees to keep me cool and get a massage. It is easier than getting someone to take me, wait for me, them return me. maybe cheaper too, not so sure.

    Gamapentin three times a day, baclofen twice a day. The most valueable tools I have learned are, body scanning, the exercise i posted for Re: pressure headaches and treatment, and the thought reprogramming I learned from the research project, Take Charge of My MS, which notes I have posted under the Topic: Treating MS in the discussion::: Since No One Has Asked(which does not show up in the search box, but must be paged through all to find it).

    Being satisfied with what I do, knowing that my muscles are like locked brakes, is a big deal, 'being one with myself', who I am, not who I want to be. All the time, seeing who I am, so I am not making matters worse, like the old saying, 'bite off your nose to spite your face'.

     
  • rbrockbank
    I also recently graduated to SPMS.  However I've had spasims for several years.  Seems they hit me when I start to get up from a chair (arms and legs) and when I'm sleeping (just legs).I'm guess I situation is better than your's as once the spasim ceases, I can go back to what I was doing. A while back the spasims led to severe cramping in my legs, however 500mg of magnesium daily has subsided most of the cramps.  I'm finding my spasims to be more of an inconvience (at this time) than a problem.
  • cindynut
    maria1 wrote: Gee, I think I feel fine,, then I realize the muscles are solid like a rock, I am almost immune to the awareness of it. I go on about my business as though nothing is bothering me. Once i do begin to notice the spasms everywhere even there where I never thought there were spasms. After pondering awhile I think about how tired I always am. Aha! no wonder, my muscles are always locked and yet I do things. Like driving a car with the locked brakes, only I can muster some movement. No wonder I am so tired. A body in motion tends to stay in motion, but moving something that does not want to move is stupendeous. That I do anything is a mira   cle even though I do not believe in miracles, only surprises. lol

    Yoga, massage, relaxation exercises, meditation, stretching, accupuncture, deep tissue massage, inversion table, hot tub, treadmill, stationary bike, weights, diaphramatic breathing and a variety of drugs. All at times have been good.

    Learning how to pay attention to my body, to keep scanning myself to make sure I am not adding to the tension is catamount. Yes, I am always in spasm, but my attitiude is not making it worse. I am not keeping extra tension. relax relax relax.

    Now that i have graduated to spms things are different for me. All the muscles are always tense. What is making it tolerable is pacing myself, doing a little, noticing when 'overexertion' is making things worse. Learning my new limits, and cursing them, they often piss me off big, when there is a job I want to do, and I only do ten percent, pisses me off good. I am glad I still can get angry.

    It is summetime so the temperature is set for 80 degrees to keep me cool and get a massage. It is easier than getting someone to take me, wait for me, them return me. maybe cheaper too, not so sure.

    Gamapentin three times a day, baclofen twice a day. The most valueable tools I have learned are, body scanning, the exercise i posted for Re: pressure headaches and treatment, and the thought reprogramming I learned from the research project, Take Charge of My MS, which notes I have posted under the Topic: Treating MS in the discussion::: Since No One Has Asked(which does not show up in the search box, but must be paged through all to find it).

    Being satisfied with what I do, knowing that my muscles are like locked brakes, is a big deal, 'being one with myself', who I am, not who I want to be. All the time, seeing who I am, so I am not making matters worse, like the old saying, 'bite off your nose to spite your face'.

     


  • lindy-evans1970
    thoroughly enjoyed you're journey story.  I think it's so relative to me also.  Your attitude has inspired me to do the same.  Stop battling the inevitable and just go with what you've got.  THANKYOU for taking the time to share this in lay mans terms as I finally feel like I'm getting it now. It's keeping all parts of relief in a puzzle really and you've just proven it works.   Best read I a long time.
    new member dx ms early 2016, sufferer for approx 7 years and looking to be spms.

    cheers
  • msunites
    Very good Spasticity Lecture from Dr. Aaron Boster (Ohio Health MS Center):

    SPASTICITY:
    https://youtu.be/8RHIr5_S6_k?list=PLrLDtjEaWrDvra_5pxihRhuT68Re1dqiO

    THIS ONE IS ALSO EXCELLENT (Memory & Cognition):

    https://youtu.be/43rU_QujXZo?list=PLrLDtjEaWrDvra_5pxihRhuT68Re1dqiO



     
  • lynettepowers
    Thank you so much for posting the spasticity link!  It is a great lecture!!  I will be watching the other the other one soon.
  • ladycee954
    First thanks for the links. I watched part of it so far and I like the information. I think it will also be helpful to share with family and friends, since, no matter how much they may care, it's difficult for us with the disease to explain sometimes, and even more difficult for others to understand the varieties and degree of symptoms, and that any part of the body can be affected by this and other issues.

    MS is not one of those diseases whose damages caused to our Central Nervous System is "one size fits all" or like "cookie cutters". Every single Individual has it's own set of symptoms to deal with, some are more prevelant in many with the disease, but even those have different degrees of damage/symptoms than could be explained and understood easily.

    I used to be on Flexerall which didn't help at all except caused servere heartburn that I had to take daily Omaxeprole for. Btw, as soon as I decided to stop taking this useless for me medication, my heartburn left with it! Anyways, I happened to accidentely find out that Valium helps me a lot with Spasticity. I got a prescription for it when my Anxiety levels would prevent me from doing weekly Avonex Injections (thank God I'm no longer doing them, started to have severe side-effects after about 3 years).

    And regarding the Valium, and it helping me with Spasticity: I had a REALLY bad pain in my right groin after/while recovering from a bad auto accident, and after having been taken to the emergency room by ambulance since I could only lay in 1 position w/o screaming and crying from the severe spasms (and none of the opiate pain meds helped at all!), they've diagnosed my condition came from Sciatica AND PRESCRIBED VALIUM and bedrest for several days. That was the final straw that convinced me that Valium indeed was controlling the Spasticity I used to experience. And I'm quite sure I'm not the only one that knows this little secret not many seem to be aware of. lol

    However, continuing the topic, I also take 20 mg Baclofen 3 - 4 times a day for the constant spasms in my neck and shoulder area, even though that may need to get re-adjusted since I've been having more pain. I also take Magnesium Supplements 500+ mg/day, these are a lifesaver regarding cramps/charliehorses. Since I've been taking this Supplement I haven't had a really bad episode of that. I still get some mild cramping, mostly in my lower legs and feet, if I stretch too much in the mornings mainly, but all that I mentioned has given me a lot of relief. I'm still taking opiate pain meds, but these I can adjust as I need them. 

    On another, more personal note: Unfortunately, even those of us afflicted with this unpredictable disease, don't always understand why the disease is affecting someone else not at the same rate, degree/severity as or lack of as themselves. This sadly happened to me with a close friend of mine. We both were diagnosed 3 months apart, and she was fortunate enough to be enrolled in a trial for oral medication, and as it turned out when the trial was over, she had been and was able to continue to take the actual new oral medication.

    I wasn't that lucky. And she's still able to work and support herself, doesn't suffer from heat sensitivity the same way I do etc. And subsequently our friendship ended on the tremendous misunderstanding on her part of how this disease had damaged my CNS to the degree that I'm no longer able to work and receive SSD.

    Believe me when I say, I would much rather be able to work and support myself since I can barely survive on what I receive monthly from SSD. But that's a story for another day. I wish her nothing but the best. I'm just still sad that our friendship had to end for reasons that shouldn't have to be the cause for it.
  • sharon-peer
    Thank you! I watched the spasticity lecture. It is excellent. My daughter's doctor has discussed the baclefen pump and this video gave a very understandable explanation of how it works. 
  • lindy-evans1970
    Best video I've ever seen.  His personality and humor certainly helps too.  THANKYOU for passing this on.  I'm getting family members to watch it too so they can comprehend it. 
    I suffer severe spasticity daily. Great.
  • levo12
    Around the time I first started having problems that appeared to be the start of MS I also began to have sudden cramps/spasms in the muscles of my sides.  (I wasn't diagnosed with MS until some years later.)  These cramps/spasms were always in the same general location between my hip and ribs.

    They were apparently unprovoked.  They would just sneak up on me at the worst possible times.. and they were pretty rough.  There were a lot of times I had to pull the car to the side of the road and wait for improvement. 

    Just curious, but has anyone with MS had cramps/spasms in the side like that?  

    Is that how the "MS hug" behaves?   
  • Snarferer
    I used to have very severe charlie horses in my right leg, right arm, and rarely right hand.  We tried several muscle relaxers to no avail.  I tried yoga, stretching, diet changes as well.  No noticeable difference.

    I had given up until I heard on the radio something about medical marijuana being approved for "severe and persistant muscle spasms due to MS" in a neighboring state and ding! a light went off.  Fortunately my state allows the medical and my doctor was 100% on board with me trying it.  It has absolutely changed my life.  I can generally tell when I'm heading towards a bad cramp and I just medicate myself.  

    The clinic I go to has many options including varieties that provide muscle relief without impairiing your faculties.  (I was told this was developed so that children could use it)  And multiple ways to get the medication.  Rolling up a joint and being zonked out the rest of the day isn't the only way!
  • Snarferer
    Double Post. Sorry
  • believe_n_cure88
    I have all of the above symptoms you mentioned and I chalk it up to the MS hug. It is really hard for me because although you're having this going on inside of your body no one can understand how you're actually feeling. 
  • KatrinaCo
    Hmm I've had muscle spasms just below my ribs for decades, always the left side and usually when sitting, often triggered when leaning forward.  What you describe sounds like what I experience but I don't think mine is related to MS as I've only recently been diagnosed.

    As for the MS hug, I'm having what feels like spasms in the muscles that cover the ribs.  I feel tightness if I take a really deep breath or if I stretch my arms out or twist my torso.  It's not all over tightness, just a specific area (left back).  I think that is how MS hug is manifesting in me.  But as I'm discovering with MS - every individual experiences it differently.  
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  • nel
    MS Hug! Ugh! Worse pain I have ever felt. L side muscles tightened up so intense all I could do was scream. Boyfriend yanked me straight up and they stopped. 
    Every now and then I feel a twinge there and I try to do a few more exercises to keep it strong. Seems to help. 
  • nel
    MS Hug! Ugh! Worse pain I have ever felt. L side muscles tightened up so intense all I could do was scream. Boyfriend yanked me straight up and they stopped. 
    Every now and then I feel a twinge there and I try to do a few more exercises to keep it strong. Seems to help. 
  • violynce
    My spasticity manfiests as permanantly stiff muscles, like that bone deep muscle ache you get if you really worked out hard at the gym the day before or did a lot of physcical labor, only mine never ever goes away and is litterally body wide from my toes to my fingers to even my jaw. When it first started 4 years ago I kept feeling like if I could just stretch them out enough the pain would stop, but then I realized it never did. I do get random muscle spasms, usually small in scale, or small twitches in various parts of my body, but the day in, day out, 24 hour a day, never ending pain is the worst. I take multiple muscle relaxers all day and it takes the edge off, but even those have started to not work now. I have trouble sleeping because of the pain, and some days it's a chore to move. It is so very frustrating.
  • chapmanginger42
    I have just been diagnosed since April of this year.  Now I am noticing all the aches and muscle pain.  Before I just chalked it up to sleeping wrong, or charlie horses.  Now I have consistant pain in my left hand and just recently have pains in my right foot.  But it is really frustraing because people at work do NOT understand and don't want to hear about my aches and pains, so I have had to learn to just work and NOT SAY A WORD.  People are really not understanding that anything is wrong unless they see crutches or canes to assist you walking.  They think you are just wanting sympathy.  It is really hard to work in this environment.  But I pray several times a day for God to help me through the day.