What is dystonia and what does it feel like?

September 21, 2017

September is Dystonia Awareness Month so I wanted to provide some information about what dystonia is and how it feels. Please share this with your family, friends, doctors, and anyone you think might find this helpful. I am going to give the general definition of dystonia first, and then provide information about how it feels and the impact it has on our lives, which is the hardest part to understand.

Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and sometimes include a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe. In some cases, dystonia exists without visual symptoms. Some people have muscles that involuntarily contract, but they have no change in physical appearance. Pain is almost always present regardless of physical presentation. People often describe their muscles as feeling like tightropes.

Unless you live with dystonia, it is very hard to understand what all of these symptoms mean or what it feels like, let alone the psychological, social, and emotional challenges that come with it. For some people, dystonia permeates every single part of their lives, demanding so much of their attention that it can be the only thing they think about. Their symptoms never stop long enough for them to get a break. The pain for many is excruciating.

This chronic lifestyle is very hard to comprehend for a lot of people. It certainly was for me until I developed dystonia nearly 20 years ago. It has challenged me unlike anything ever before. You can see in my photos below how dystonia can affect my body. It turned my world upside down and has taken me many years to find my bearings and treatments that make me more functional. Not wanting others to suffer this same torture, I made it my mission to educate people about it, so I became an active patient advocate. I also wrote a book about it that was recognized by the Michael J. Fox Foundation. It is called, Diagnosis Dystonia: Navigating the Journey. I encourage you to get it for yourself, your loved ones, and your doctors. You can learn more about it if you click here. Use the coupon code AWARE for a 20% discount this month.

I find that the best way to describe dystonia is to share an example of something similar to what other people have experienced. At my worst, I used to say it felt like someone constantly had a power drill in my skull, neck, shoulders, and back, and a rope tied around my head yanking it towards my right shoulder. Of course I don’t know anyone who has experienced this, so it is not relatable and thus, probably not the best explanation. I would get empathy, but it was accompanied by blank stares.

Similarly, I often hear people say it feels like the affected body part(s) is in a vice, they are being squeezed by a snake, their head feels like it is being pulled off or is the weight of a bowling ball, and/or their muscles pull, turn, and twist uncontrollably. While most of us with dystonia understand what all of this is like because we experience it, it makes little sense to someone without dystonia. In order for them to better understand, we must use specific, tangible things they have also experienced so they can relate. Or, be creative and have them do things that mimic what you feel. Please see my video for some ideas.

While this video does not describe all the many different ways dystonia feels, I hope it is a good representation of what the vast majority experiences. Clearly, dystonia is not a fun disorder to live with by any stretch of the imagination. Take one of the examples I give about a charley horse. Imagine what your life would be like if you had a charley horse that never went away. It is almost unfathomable, but this is what dystonia feels like for so many of us. Is it any wonder some of us may not be the same person we were before dystonia entered our lives? Chronic pain can change everything, which has forced us to adopt coping mechanisms that don’t necessarily reflect our real level of discomfort.

When we say we are in pain, it is often worse than usual; much of the time we are just coping and trying to sound happy and look normal. The gal in the picture below is evidence of this. She was in major pain in this picture, but her smile tells a different story. Also take note of how she is holding her head; a gesture that is very familiar to those of us with cervical dystonia.

Sometimes we hear others say, “You just need to push yourself more.” It may be hard to read how we feel on our face or in our body language, but we push ourselves all the time; sometimes too much and we pay for it later with worse symptoms. Finding balance is one of our greatest challenges. Some days we do nothing but push just to get through the day. Sometimes it took every ounce of will power to get out of bed to just eat breakfast, and that was all I could do all day. A far cry from the life I lived prior to dystonia!

This is the reality of dystonia for many people, which can be a difficult concept to grasp. It is even difficult for those of us living with dystonia to sometimes understand. This video and article should provide more clarity. Too many people with dystonia do not get the support they need because those close to them simply do not understand the gravity of the situation, including our doctors. I hope this helps in that regard.

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom’s coaching practice and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram
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9 responses to “What is dystonia and what does it feel like?”

  1. Regina Vanetten says:

    Tom, you have been a beacon to me. This article hits the nail on the head. I am not a complainer. So even if I feel horrific pain, when people ask how I’m feeling I always answer, “Fine”. But I’m never fine anymore.. The pain is like being hit in your neck, back and shoulders with a baseball bat… And it never goes away. Botox and meds help…… But this condition trumps them all. I would just love for people to be more aware and try to understand the extent of this pain. Thank you for your strength and understanding.

    • Tom Seaman says:

      Thank you for saying that Regina. That was really kind of you. I have often used the being hit with a baseball bat analogy also. Also the feeling of a power drill in my skull, neck and shoulders. “How are you feeling” becomes a tiring question and hard to answer. “Fine” is often the best way to go. Sometimes I say “great!” even if I don’t feel great. It takes the attention off me and it makes me actually feel better. I will quickly follow that up with a question for the other person so we stay off of the pity party people often like to have with me.

  2. Anjie Holt says:

    Thanks for this Tom. So true that when we say we are in pain, it generally means that it is just worse than usual. We just get used to living with constant pain.
    Also, I think that others would find it hard to believe/understand that we are in some degree of pain most of the time, because most people (who aren’t in chronic pain) can’t just carry on as normal usual when they suffer pain…but we have to!

    I am lucky though, as Botox does seem to work for me in general. I feel for those who are really struggling with pain.

    • Tom Seaman says:

      Thank you Anjie. I never really understood what pain was like until dystonia, and I experienced a lot of it from many sports injuries. What I have recently come to realize is that the pain at my worst was like the point of injury that never went away. This might be another way to describe it. If a person can think of a time they injured themselves and then imagine that feeling at the moment of injury never going away, it might help them understand. However, no matter how we describe it there really is no way to fully appreciate the magnitude of the pain and how that pain can affect our overall well being. And like you said, we get used to living with it and carry on as best we can, because we have to. The human spirit is mighty powerful! I am so happy to hear that Botox is of help to you. It is such a lifesaver for so many. Thanks again very much for your comments and insight.

      • Anjie Holt says:

        Great description Tom. I’ll try and remember that one.

        I think dystonia sufferers need one close friend/partner who is happy to spend time listening and trying to understand what we go through at our worst.

        Thanks for your blog and trying to build a support network.

  3. Nancy says:

    Hi Tom,
    Excellent article..thanks. I’ve never had anyone ask me what dystonia feels like but have been asked what it is. I try to keep it as simple as I can before I notice peoples eyes glazing over & realize they are no longer listening. I’ve tried botox, that didn’t work for me either. I’ve seen you mention the TheraCane before & I guess it’s worth a try. I’m in NY & was just approved for MM. I’m hoping that will help to relax me. I first was diagnosed with CD but now it’s generalized..I can’t think of a part of my body isn’t effected by dystonia. I have yet to purchase your book but I’d love to read it. Being September & awareness month I will buy a copy today. Thanks again, Nancy

    • Tom Seaman says:

      Hi Nancy,
      Thank you very much! Not too many people ask me what it feels like either. They usually ask what it is and since the description often falls on deaf ears (and the eyes glaze over like you mentioned), I decided to also add what it feels like. This seems to help people better understand. Sorry to hear Botox has not been of help. I am in the same boat so I use many other things. My book goes into it in greater detail. I hope you get a copy. I think you will find it to be a valuable resource for all things dystonia related. Please let me know how MM works for you. Also the TheraCane if you decide to get one. I love mine and use it every day. It has been a life saver. Thank you Nancy and I really appreciate your comments!

  4. Tomica says:

    This article made me cry! I will send this to my Dr. and all of my close family members. It’s like you took the words exactly out of my mouth! I purchased your book about a year ago, which is very helpful. I also purchased the theracane with your recommendation from your last newsletter and I LOVE IT! I tried the Botox shots for pain and was unsuccessful. So now, I’m not sure if I want to try the CBD oil or the pills? I suffer with terrible tremors and nonstop pain in my neck, shoulders, and back. And I also take pics just like that, and l just realized it. You are Awesome!

    • Tom Seaman says:

      Hi Tomica- You are so kind… Thank you so much! I remember your name and recall being in contact previously. I am so happy to hear how much you enjoyed this and I hope it helps those with whom you share it. It is so difficult to get others to understand. Please let me know if this helps. Thank you so much about my book and for the feedback about the TheraCane. I love it too! My favorite tool. Sorry to hear that Botox has not been helpful. It can take several treatments to get the right muscles, so if you have only been once or twice it might be worth another try. There are so many CBD options. The one I prefer of those I have tried is Liberty Lixir Ultra (1000 mg). If you decide to try it, I would love to hear if it helps. Thanks and I look forward to hearing from you again!

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