What is dystonia and what does it feel like?
It is often very difficult to explain to others what life with dystonia is like, so I want to provide some information about what it 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 have written numerous articles for a variety of print and online publications, as well as a book about dystonia that was recognized by the Michael J. Fox Foundation and featured in Pain-Free Living Magazine and Pain Pathways Magazine. 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. I also have a new book called, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges, which you can learn more about by clicking here.
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 (painful cramp in the hamstring of the leg) 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 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.
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Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
I’ve been dealing with cervical Dystonia for about 12/13 years. I do too hold my head and people at work think I’m on the phone and have to hold it to drive. If I’m standing at work just standing doing repetitive work I get a pain in My back so bad , feels like someone is stabbing me. Really unbearable pain, my neck is starting to hurt more. Just ordered some of the cream , can’t wait to get it and use it. Thank you for the wonderful review. I hate this disease, not sure how I got it and am doing the best I can to live with it. People don’t understand what we go through and you try to explain to them then they don’t want to listen . I even had a customer at work make fun of me the way my my head and neck were positioned.
Sorry for the rambling but feels good talking about it with someone who knows and feels what I’m going thru.
Thank you
I am very sorry for all you are going through. I can relate very well. I don’t think you were rambling at all. You were very clearly describing what so many people experience, so for anyone reading this, you made them feel less alone and I thank you for that! Please let me know of those lotions help at all.
My cervical dystonia was a result of cervical fractures. C4, C5, C6. Then later fx C2 & C3 made it worse. Blessed to not be paralyzed but the pain is unbearable at times. The only meds that have worked are now on the list of prohibition. And nothing I can do.but suffer. MY QOL was taken from me. Never abused meds, never wanted to. period. Was a nurse 20 yrs until I could no longer work. With no ROM in my neck by thoriac spine compensated by becoming my neck- a job it wasn’t meant to do. So now it gives me much pain as well.
Hi Tom, I have dystonia that was triggered by medication many years ago. It went away for 20 years and restarted again, without med. Now the neurologist is saying it’s functional neurological disorder. It’s in my neck, back and legs. Which of your books might help, if you have a suggestion.
Hi Debra- That is a very good question. Neither book has specific information about any form of dystonia so if you get one, please understand that the books are more about how to live with the emotional, social, and physical challenges and limitations, as well as daily living strategies for the various physical symptoms (in general) that dystonia brings, along with anxiety, grief, isolation, pain, depression, stress, etc., with strategies for how to best deal with them. I think either book could be helpful for coping well with dystonia, Diagnoses Dystonia being more specific to dystonia. Beyond Pain and suffering has updated material from the first book, but is not dystonia specific. Perhaps if you begin with the first book and if it helps, you can get the new book afterwards.
Hi. I’ve had dystonia at least sometime in my 20’s so greater than 30 years. How does everyone handle the social aspects? Does dystonia predispose us to anxiety and depression? How can one differentiate between essential tremor and dystonia and can you have both? Are any medications beneficial in your opinion? I feel very fatigued and am not sure if this is just normal or does dystonia and/or Botox make this worse? My pain thankfully is under better control but the stress in the workplace especially since COVID is very draining. I appreciate your knowledge in this area and I agree it’s very difficult to explain this disorder to others even physicians.
Hi Cheryl. These are all great questions and I think would be helpful to post them on a dystonia support group site. Most, if not all, of them are on Facebook. I can direct you to some if you are interested. The answers to your questions will vary a lot, and I think help others who are also wondering many of the same things.
Hi Tom, thanks for the article and I enjoyed reading through the comments since I too have dystonia.
I turn 34 this fall, am single yet dating, and am getting so bad from the dystonia that I’m not sure I’ll be able to keep my desk job.
I am not having a good day, hence why I stumbled across your site during my casual browsing of dystonia articles online. It’s been 2 years and I’m just done with it.
I live abroad in Spain and the quarantine here was really really hard. We were not allowed to go outside except for the necessities, not even for a walk. 2 months of living in a tiny room with no space for exercise really messed up my body. Indeed I am actually believe it or not resentful of the Spanish governement for aggravating my dystonia (perhaps that sounds very egocentric but hey I might lose my desk job if this doesn’t get better, so ya it is a blow even if nobody believes me).
I noticed that my breath is very much disconnected lately and that is seriously triggering the spasms, so I am working on that.
Anyways, not really sure what the point of my comment is. Just wanted to reach out is all. I like to say something positive whenever I gripe, and the one thing positive about dystonia is that I am much more aware of my body and the effects of stress on it.
Hi Nat- I really appreciate you sharing your comments about what dystonia has done to you, especially during this very challenging time with COVID. Several things came to me as I was reading and the two that really stuck out was how you are returning to your breath. I think that is SO critical. The other was how you like to add something positive about dystonia. I think that is a great lesson for all of us because it is so easy to get tied down with all the bad things it has done. And the positive thing you mentioned about being more aware of your body….perfect!! That is a lesson for so many of us to take to heart. Thank you. If you don’t have it, I think you would really enjoy my book, Diagnosis Dystonia: Navigating the Journey.
I was diagnosed with cervical dystonia in March last year. I had Botox injections every 3 months for a year – zero effect, minus a few issues with swallowing. They told me at that point that it obviously wasn’t going to work for me so I’m now being referred to a specialist in London, the appointment isn’t until September though! I’ve tried CBD oil, plus all of the pills I’ve been prescribed but nothing even touches it – even morphine doesn’t seem to work like it used to! I’ve tried a TENS machine, a neck massager, even acupuncture in conjunction with a massage but nothing helps in the slightest.. I’m spending all day everyday flat on my back on the bed, minus eating and bathroom breaks, but this is no way to live.. I’m only 28.
Emma, my heart goes out to you. I am so sorry you have tried so many things without any help. I was 30 when it started for me and I also lived on my back most of my day. It is SO difficult!! I feel for you. Have they tried a different strand of botulinum neurotoxin such as Xeomin or Dysport? Has DBS ever been considered? Have you looked into any of the more natural approaches such the the ST Clinic in New Mexico or the Farias Program in Canada? All of them can be done remotely.
Hi again Tom, apologies for the “new” comment, I am unable to use the ” reply” under your reply to me for some reason. (Anne 28th nov 2019).
Anyway I just wanted to update you that I’m now waiting for an appointment with neurologist at our movement disorder clinic. I’m in the UK, I told my Dr about you and how your descriptions of your own symptoms and others you hear from resonate so much with me. I’m grateful for coming across your website here, I think I was taken a bit more seriously when the random jerk of my head happened in the Drs office several times. I’m just constantly exhausted… I’d given up with my drs, but finding your website gave me the push to try again and this time not being afraid to tell the Dr that I am certain I have cervical dystonia. Thank you Tom.
Hi Anne- I am sorry you were not able to reply to the other message. I will check on why that happened. Thank you for the update and I am sorry you had to have that head jerking happen, but thank goodness for the timing so the doctor could see it. I wish we could wear a Go-Pro camera around all day so doctors can see what our muscles do over a 24 hour period. Kind of like a holter monitor for the heart. I am so happy that this site has been of such help to you! Thank you for letting me know. Please keep me posted on how things go with the neurologist when you get the appointment. Thank you and best wishes!
This article is so spot on for how dystonia feels. Although I have to translate Charley Horse for my UK friends! Those who are interested in understanding dystonia find your posts very helpful. I was discussing this with a friend a few days ago, and she asked me how I would describe cervical dystonia in layman’s terms. The best analogy I could think of was, imagine having to do everything walking backwards. People don’t understand how disorientating cervical dystonia can be, because your head is constantly wanting to turn to the side. So I said try doing something walking backwards – you can look over your shoulder as often as you like or need to. That’s how dystonia feels – that makes your neck ache? That’s what we do all day every day! You don’t want to do that any more? We have no choice! Happy to say they got it. Thanks again for your articles and posts, they really do help us to help others understand.
Thank you Barbara! I recently found out that Charley horse was more of an American term so I edited that part 🙂 Thanks for mentioning it. I never thought of the walking backwards analogy and it makes a lot of sense! I am going to add that to my descriptions with other people. Thank you!
Thank you so much for your article Tom. I have been in so much turmoil trying to find someone describing their symptoms that I can fully understand and say “that’s me!” I have have been suffering for 9 years and was told I have arthritis in my neck, physio was debilitating me. I’ve felt so misunderstood and gave up. I’ve done what I can to try to do gentle stretches and strengthening exercises ( repeatedly given to me from GP and pain clinic. ) But I have always suspected this was more than ” degenerative changes”. I always have a pulling backwards and struggle to keep my head in the right place. Permanently felt like I have ropes weighted with concrete hanging off the back of my skull making my neck barely movable. Recently though it has changed to pulling back with random added jerks, and other times its like my head is pushed up, like it’s on the top of a totem pole. I’m exhausted from the weight of my head and upper back. My cranial muscles move weirdly and squeeze. I just don’t know how to get my GP to understand what I’m saying and to stop recommending PT. At my wit’s end. I’ve videod myself when the jerks happen so I’m hoping to get the right referral I’m scared this is going to get worse. Only for the recent jerks I just outwardly look like I have a stiff neck but nobody can see the tremor I feel and the squeezing , head like a concrete ball 🙁
If there is anything you can suggest to help me explain this condition and be taken seriously I’d be grateful.
Hello Anne and thank you for sharing all of that. I am so sorry you are dealing with such horrible symptoms. I know just what they feel like and it is so terribly painful and debilitating. If you have not been to a neurologist who specializes in movement disorders, that is the best place to start. You will more than likely be given oral medications and Botox. This helps some people. Other things I would look into are the ST Clinic in New Mexico (www.stclinic.com) and Dr. Farias (www.fariastechnique.com). Please let me know if you are able to get any help from these things and if I can help in any other way, please let me know. You are not alone!
Tom
Thanks so much Tom. Been struggling to run my business, home, finances and relationships as a single parent with Dystonia. I have often been my own worst critic as it is so tough to work every day no matter how bad I’m feeling. My family in Ireland unfortunately do not get it, and I live in Italy anyway. I have often judged myself as lazy so thank you for sharing how much rest you need. I often work long hours and then do household chores, all the while holding my neck straight with my hand. If I don’t work I don’t get paid, so it is not an option. It hurts when others, specially family, don’t want to get it, but fortunately I have some lovely friends. I also came off gabapentin recently and experienced serious physical and psychological withdrawal symptoms. I had no idea how strong this drug was when my doctor prescribed it, nor did I anticipate the serious side effects I would experience. Anyway, thanks again Tom for your support; it really helps. I have signed a contract to write my first book which I hope will be on Amazon within the year. It is a journal of letters to my Mam who died suddenly in January. Writing is healing for me, and my publisher is very happy with my work so that’s great! Wishing you a good day. X Pauline
Pauline, I am so sorry about your struggles. I am so in awe of single mothers like you who don’t have the additional weight of dystonia and the other issues you mentioned! You are so strong! That rest you mentioned is so imporantant to me and I don’t think most of us give ourselves enough. For a long time I felt it was lazy. Then I saw the benefit, which was greater peace of mind and more energy to accomplish more. So the more I relax, the more productive I am, as crazy as it may sound. I can very much relate to your withdrawal problems. I experienced severe withdrawal for several years after coming off benzos. It is not for the faint of heart. I hope you are getting more stabalized now. The body takes time to adjust and we have to be so patient. I am SO EXCITED about your book!!! Please be sure to let me know when it is available!! Best of luck with it and enjoy the journey!!
Thank you for this article. I have Dystonia in my foot that feels like the extreme Charley horse that is so painful I break out in a sweat and feel like throwing up. I also get a pulling sensation straight down the back of my leg that feels like 2 people are playing tug of war with my muscles. Sometimes my big toe will bend straight up from the contractions.
I also have it in my throat. Again like two men are playing tug of war with the muscles. This also causes what sounds like extreme laryngitis.
For my throat it first triggered with swimming. Now I have to be extremely careful with arm movements. Talking also triggers it.
I’m severely allergic to Botox but I find 2000 mg of magnesium a day really helps.
Hi Sherri. I am so sorry you are going through this, but I am so grateful that you shared your experience with dystonis for others to read. I know it will resonate with many and help them not feel so alone. Thank you!
The link to this article has already been sent to several close friends. The video is spot on…spot on! Thank you, Tom, for being a beacon of light. Only heaven knows how far reaching your efforts will go.
Thank you so much, Sandie! It is hard to find words to express my gratitude for what you said. I am deeply touched. Thank you!
I have LBD. Before I knew that’s what it was I kept finding myself with my left shoulder pinned against my ear as though I were holding a phone against it. In the beginning it didn’t hurt and I couldn’t figure out what the hell I was doing. It still doesn’t hurt when my shoulder goes up and I almost never noticed it happening but as soon as I try to pull it down the stabbing pain starts. I think this is when I get what feels like rocks in my tendons. When I researched it I discovered that the muscle pain associated with autonomic dysfunction is because the autonomic center controls tendon response. Although the dystonia stayed in my neck and shoulders for many years it is now in my breasts and buttocks. I suffered crushing depression as a part of my disease but much of it was alleviated when I realized there was a name for what was happening to me and that I had a measure of control. I have changed everything from what I eat and what combinations in which I eat things to how much news I watch. I haven’t read a book in many years because I couldn’t follow them and I felt like my eyes weren’t working. I believe I could read a book now because I understand the hurdles I’m dealing with. Audio books aren’t the same for me. I would really like to read your book. Disability means a book it is an investment but it would be amazing if the first book I could read could help me in my fight. I’m going to add it to my Christmas list.
Hi Susan. Thank you very much for your message and for sharing what you have been through. I am so glad you finally got a proper diagnosis. I felt the same as you. I had such a sense of relief finding out, after many doctors who didn’t know what was wrong and gave me treatments that made me worse. I really hope you are able to get my book. It offers so much about how to live with dystonia and any other chronic condition, with tools and resources for all aspects of this health challenge. I am like you in that I prefer a book I can hold and touch the pages, versus something I listen to or read on a computer. Thank you again for sharing your story. It helps me and so many others know that we are not alone, even if the way we get to our diagnosis and how it impacts us may be different. There is great kinship and strength among us.
I have lived with Cervical Dystonia for ten years now. Just last year I was diagnosed. I have lost lost the feeling for life that I once had. All I can due is give it to the lord. Why me I say. Love ones can’t even imagine how we feel. Its going into my throat. I need speech lessons now. I wanted to go back to school but now I feel like ” What’s the Point “. I have a boyfriend who gets so mad so easily that it effects my spasms around my neck. I honestly feel that living without him might be best. I have to go for botox injections today. Hopefully the neurologist doesn’t inject to much so I can pick my head off my pillow!!!!! Feeling upset today. Sorry
Hi Carla. I am very sorry to hear that you have suffered so long with dystonia without a diagnosis. I hope your Botox injections today were helpful so you can get some relief. I also hope that the people close to you will be more understanding of your situation. Please know that people like me and so many others understand and are here for you.
I’ve had dystonia for a years, lost a career I loved of 33 years, just went to Abigail Brown due to Botox and meds not working,my head is really pulled to the right with my spine curving. Want my life back, doing Abigails program faithfully daily. But it’s a slow process. Any advice for natural help in state of Wiscosin would be greatful,Thanks! Sara
Hi Sara. I am sorry you have not been able to find any relief. I went to see Abbie in 2002 and it helped me very much, more so than Botox and other treatments. I wish you the very best on her program. Take is slow and steady. The best advice I can give is to be good to yourself, feed your body good foods, reduce stress as much as possible, be careful of your reaction to things so that emotions don’t fuel your symptoms, and if possible, make getting better the focus of your life without guilt, shame, or pressure from anyone. Set firm boundaries for yourself to recover as well as your body will allow.
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.
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.
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.
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.
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.
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
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!
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!
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!