There’s an Earthquake Happening Inside My Body

By Penelope Conway

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.

To me, multiple sclerosis feels like an earthquake went off inside my body and different body parts are experiencing continual aftershocks.

I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.

I sat there staring at it thinking “Okay, you can stop now.” After some time it finally subsided a bit but still goes on these crazy binges from time to time that I have no control over. I have a weighted wristband that helps contain the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.

Because of multiple sclerosis my body has been known to jerk and twitch without being provoked, I’ve thrown things across the room unintentionally, and once I even kicked someone…although that one could have been on purpose. I’ll never tell.

I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”

There are times when I may want my legs to move and they won’t, or need a hand to function and it rebels, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case.

Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.

It kind of becomes like that old saying “If a tree falls in a forest and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do weird things.

Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone. There are others of us who understand and face this unseen monster too in some very weird and strange ways.

Normal is no longer what it used to be.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Comments

  • MaryAnne Stinson says:

    Exactly right, completely true!
    Frustrating!!

  • Shaena Ragin says:

    These weird sensations are the story of my life. I never knew that it was a result of my MS. I loved this!

  • Bobby Chaloner says:

    Awoke aching all over. Burning feet last night for some reason so restless night. Made myself get up and lurched to bathroom and back. Dressed. Went downstairs -backwards is safest- grabbed my walker, then fed the cats. Tea and pills. An hour later typing this and starting to feel as if I just might get through the day.
    It’s the same every day. Everything js a huge effort BUT I KEEP ON DOING IT! I know the day will come when I can’t and it is getting harder but it really helps to know that I am not the only one

  • Kimberlee Polonski says:

    This just happened to me. It really shook me up. No pun intended. I was relieved to find this article. Thanks for sharing.

  • Orlinda says:

    I’m not sure what this is that I experiencing, but yesterday as I was getting ready to walk my dog … suddenly I thought oh my gosh we’re having a bad earthquake!!! This trembling lasted at least 20 seconds and when I begin to focus the trembling was over and I called my daughter right away to see if there was an earthquake… no earthquake at that time, i’m thinking I had an earthquake seizure ????‍♀️ So just another occurrence that I need to address with my primary doctor ???? very very scary first time I have experience this trembling.

    • Angel Blair says:

      Thank you for reaching out and sharing your experience, Orlinda. I am very sorry to hear that you had this occurrence, and I hope it’s something that your doctor can help address with you at this time. If you’d like to connect with others living with MS to talk about your experiences, you can do so on MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. Thank you again for reaching out and take care. Angel, MSAA Client Services Specialist

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