Running with Dystonia

14 Mins
Running with Dystonia

A BIT PERSONAL -It’s been 3 1/2 yrs since my symptoms began and 2 1/2 years since I was diagnosed. I've shared my journey occasionally with gait videos on IG but then with pro runner Kara Goucher recently announcing her diagnosis, I've had many asking how it has been going for me. I realized I've never put my story down in one spot, so here goes...

While often deflating to think I will most likely always fight this, I continue to have a lot of good days and try to focus on that. I just had 6 of my best training months; barely felt the muscles act up (until these last few weeks).  I had been feeling a bit super human with runners dystonia; reduced symptoms and very very gradually increased training, avoiding 10k or faster paced workouts. I actually ran a PR in Boston (3:08) this fall after running the last Boston really easy due to months of symptoms. (see my story below)

WHAT IS RUNNERS DYSTONIA? Runners Dystonia is a task specific type of Focal Dystonia; a neurological disorder that causes involuntary muscles spasms (usually on one extremity) with a specific repetitive movement. Dystonia occurs in the same part of the brain (basal ganglia) as Parkinsons. Cause is unknown but may be the result of genetics along with extended fast repetitive use, a fall, injury or possibly high stress/trauma.

WHAT DOES IT FEEL LIKE? Different muscles can be affected for others but for me, it is 2 in the calf and 1 in the foot that like to co-contract. I first called it my floppy foot. Loss of coordination, dead foot feeling, toe curling. No nerve pain or numbness.

DO I HAVE IT? One way to test for repetitive dystonia is if symptoms act up, try changing direction; walk backwards or sidewalks or barefoot and see if foot or leg coordination is normal? Record this on video and bring to a movement neurologist. Runners dystonia is repetitive issue usually with only a foreward motor pattern (running, walking or both)

There are various types of dystonia. It is important to get a specific diagnosis and to rule out any other types of neurological disorders. Not all cases are the same and some can deal with coordination issues post injury that are not dystonia. 

Dystonia cruelly challenges the one thing you really love to do because you do it the most. The brain “short circuits” on that very specific motor pattern and muscles will co-contract, causing coordination issues, light cramping and distorted postures. It’s rare but sometimes happens to guitarists, pianists, violinists, and distance runners. At the time my symptoms began I was getting over a calf strain in that foot and yes dealing with some extreme stress at the time. 

Basically with focal dystonia..the brain says- “Ha ha..for the rest of your life—this specific movement pattern is going to be faulty. You are going to have to work your butt off constantly to retrain the brain to coordinate a better motor pattern. And when you slack…I'll resort back to the faulty pattern. And if you go too fast for me to process the movement with the faulty motor pattern....it may get worse." 

 

TREATMENTS - While there is no known cure, there are various treatments to help manage symptoms. Many try medicine such as; Botox, Parkinsons meds or CNS muscle relaxers and neuroplasticity exercises or sensory brain tricks are also used to try to help manage the symptoms. In severe cases, a Deep Brain Stimulation Device may be implanted in the brain. 

Sensory brain tricks or dual tasks can help distract the brain enough so the co-contracting muscles will chill out on that movement. Many will also find the brain recognizes the movement slightly better on different surfaces (trail or sand) or going barefoot. Some can bike, stair climb and pool jog or run on an anti-gravity treadmill with no issue.

Something that has worked so far for me is to do the most silimar motion to running that I can without the symptoms acting up to help re-establish a better motor pattern, then repeat that movement many many times and slowly introduce running or walking more (easy pace) Learning a new motor pattern can take 4.000-6,000 times. Remember Malcolm Gladwells book "10,000 hours" to get good at something? Similar concept but not that simple as it can be difficult for some dystonia symptoms to calm down enought to retrian the brain. And the struggle to keep that motor pattern good can be very difficult.  I've tried many brain tricks to no avail (chewing gum, listening to music, podcasts, dribbling a basketball while running) Running on a treadmill seems to be the hardest for me (super repetitive terrain for the brain) although I have yet to try an anti-gravity system.

So far these things have been the most helpful in continuing to run fairly well:

  • -Avoid running or walking much with bad motor pattern if foot is really acting up
  • -Running barefoot on grass (smooth soccer fields) -has worked well for a few years..although this is becoming more challenging (foot occasionally acts up and stubbing the toe barefoot is extremely painful)
  • -Shallow/Deep Pool Running - While not my favorite..its something ha and seems to be a different enough movement for the brain for me.
  • -Stair Climber - I like it because its easy to go slow and get a good workout in, similar motor pattern movement to running, while getting some good leg strength work in also
  • -Run/walk - It usually takes 1-2 min for my symptoms to start up once I start running. So if symptoms are more severe...I'll only run a few min till I feel the dystonia start up. Run for 1-2 min, stop for a minute or two, then repeat the run/walk to continue training a better motor pattern. 
  • -Running with friends while talking -Doesn't always work, but if symptoms are mild..it goes better when I'm distracted in conversation. Better than listening to podcasts or music. I’m not a huge talker so it doesn’t work all the time, but If I’m talking for a bit, it seems to help lessen symptoms
  • -Run easy/long/everyday gradually once symptoms are mild..I'll test to see if it improves the longer I run. Sometimes it lasts the whole run, but by Jan 2021 it got better after 6 miles , then 5 mile..all the way down to 1 mile over the course of 5 months while doing cross training with a similar motor pattern exercise.
  • -Motor control exercises (breaking down the movement) a bit time consuming, but so helpful... better if I can do them everyday. bear crawls, one leg running motion, slow wall knee drive, marching, eyes closed balance marching exercises
  • -Isometric Holds in various running positions- this helps improve “encoding” for cognitive process which can help create muscle memory. Static holds require more concentration and focus, helping to improve that motor pathway.
  • -Life stress management, (sleep, hydration, low stress ha!)


  • RESEARCH - Unfortuntely there is very limited research on Runners Dystonia and it can easily be mistreated for years as a muscle weakness issue or nerve compression issue rather than neurological.  

Here are a few favorite resources. I have not personally consulted with any but may at some point, but have good resources online.  They either have research, books, podcasts or online classes.

*Nancy Byl - PT, MPH, PhD, FAPTA, Leading researcher in dystonia. Podcast on her research and clinical approach to rehabilitating those with Focal Dystonia

*Dr. Farias in Canada- https://dystoniarecoveryprogram.com and book Limitless -With his neuroplasticity exercise protocols and research, he is a pioneer with understanding dystonia and has been doing this for 20 years!  He also offers online workshops.

*Dr. Julie Hersberg PT, DPT, NCS @Reactivept. Youtube video Neuroplasticity Approach for Dystonia Rehabilitation

SUPPORT -Facebook Runners Dystonia Q&A Group - I felt so alone and a bit crazy..till finding this group. Great supportive group of people with runners dystonia.

 PS -I am not a doctor. Please consult a Movement Neurologist for proper diagnosis and specific medical questions. 

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MY DYSTONIA STORY

Oct 2018- I went out to walk my kid to the bus and felt a strange sensation in my left foot. It felt heavy..and somewhat difficult to pick my foot up. I felt like I was going to trip. So I tried picking my foot up a bit more and it started to resolve when back in the house.  Then I noticed the feeling in my run that day. This went off and on for months but walking felt fine.  I was training for a marathon and didn't feel it everyday, but eventually noticed a pattern after hard days. Some days I would go for a run, get frustrated, go back to change shoes and try again. For some reason, some shoes were better than others. But I had a few runs where I tripped over nothing. This started to freak me out...that maybe it wasn't just a muscle weakness issue. I had no numbness or pain.

It was then in December I remember googling "loss of coordination while running" and a Runners' World article (thank you Cindy Kuzma) popped up. It talked about the rare Runners dystonia issue and reading it felt so eerily similar...foot inversion, dead feeling, loss of coordination, ankle buckling, toe curling.  I joined a Runners Dystonia Q&A facebook group just out of curiosity. The group was so positive and helpful with stories, doc recs and therapy ideas.  While I learned many were not running much, there were some and that gave me hope.

Since symptoms weren't getting worse; no pain, numbess or issue with walking, I decided to try not jump to conclusions and just go to a few PTs looking for answers. I had 2 different gait analysis done. One said to work on foot eversion although I tested well with that and calf strength. Another told me to work on glute strength...so I did. I even asked about Runners Dystonia and they shrugged it off. I started calling it the "floppy foot”. I still had mostly good days and decided to go ahead and race the Phoenix half marathon and was surprised how well the foot felt! Strange but so so happy it was a good day.

Feb 2019 - Symptoms became a frustrating almost daily feeling. Runs were feeling like an exhaustive chore; trying not to trip, somewhat dragging foot around. Then I started getting foot pain from running on the side of my foot more. I stopped running and set up an appt with an Ortho and planned to show him my strange running gait video, honestly hoping he'd send me to a Neuro. Agreed the gait was odd but wanted to tackle pain first. He suggested taking time off then getting some nerve conduction tests done if still an issue. I didn't run for 2 months, did some cross training and walked/ran Boston Marathon last minute. Was planning to just watch but was registered and decided day before that I'd do it for fun. Ran/walked a 3:48. Foot felt okay!! I was on top of the world (notice a pattern with races?? maybe lots of brain stimulation?)

Apr 2019-I went back to Ortho, he agreed to have the tests done since symptoms were there most of the time again. Went to neurologist for the EMG and nerve conduction test. All the muscles and nerve responses were great. They gave me the results and a referral for the Neuro. 

Fall 2019-I had started running barefoot more on soccer fields at the time and it was really helping so I paused the Neuro visit.  I felt amazing. Symptoms were almost non existent. I felt good enough to even try speed. I decided to resume my attempt to break my high school mile PR of 5:21 (22 ys ago) Trained on the soccer fields for a few months, ran 5:25 on grass, then ran on the track a few weeks later and still 5:25. Then symptoms came back.

Running on grass barefoot was still fine but walking got worse. I realized Chacos were the only shoes I wanted to wear around. My toes had to work differently in them (slightly different motor pattern) and my foot behaved a little better. 

The strange symptoms were enough to make me feel crazy. I tried all the tricks I had heard about. Tried listening to certain kinds of music, listening to podcasts, chewing gum, dribbling a basketball, etc. But it either had no effect or only worked one day. While not perfect..guess what helped somewhat? Talking while running. Social runs for the win.

Nov 2020 -I finally got in to see a Neurologist at Vanderbilt who officially diagnosed me with Runners Dystonia. I was crushed because I had already read so much about it, but was holding out it was temporary. I still had a lot of questions and knew there were a lot of unknowns. Thankfully I was not told to stop running. The neurologist didn't know or suggest much about neuroplasticity exercises but felt if motor pattern wasn't bad that I could continue. I told her about all my barefoot grass running and how it always seemed to work. I know she thought I was crazy. The doc had mostly seen it in musicians. She was surprised how functional I was with it..and suggested first trying a CNS muscle relaxer (but didn't end up helping). 

Nov 2020 - I attempted another mile PR. Trained on grass then a few track workouts even! Ran 5:23 on the track and then 5:19! a couple weeks later with some awesome pacers to chase.  Finally broke that old PR and I couldn’t believe how good my foot did. Symptoms came back shortly after, but was able to keep them minimal and decided to back off the speed.

Jan 2021 -I got back on the roads, kept it easy and noticed my symptoms were getting better with my easy long runs. About 5 miles in, the coordination would actually improve! This was new!! Usually if it acted up that day..it was the whole run. It was still a struggle those first few miles; picking that foot up a little more, praying each step that I land the foot just right. Running with friends always seemed to be a helpful brain distraction; but seeing if the symptoms would improve while running also kept me going.  

Feb 2021 I saw a Movement Neurologist at Vandy who suggested trying Parkinsons meds (didn't notice anything) and then tried Botox in 2 muscles. Kept it easy on the roads, ran a few times easy on the grass a week. Coordination was improving by miles 3-4 most runs.

March 2021 - Decided to sign up for Boston. Felt like there was a chance I could maybe actually train longer than a month for a race!

May 2021- Decided to try running everyday. Got one more Botox treatment (this time 3 muscles). I wasn't sure if Botox was working but the coordination was still slowly improving from January the longer I ran. Seemed to be good by 2-3 miles most days! 

Sept 2021- Decided to skip the next Botox shot. Wasn't sure it was doing anything and didn't want to have too many in short amount of time.

Oct 2021-Made it to Boston! Running continued to go well. I was able to do my highest mileage ever.. but limited how many marathon paced workouts I did..and avoided faster paced workouts.  I was afraid to go too fast and bring on more symptoms. I actually ran a marathon PR 3:08! Felt on top of the world that day...despite some heavy cramping in the quads for 8+ miles.  I only felt the foot for the first two miles!

Jan 2022 -Ran Houston Marathon..got sick last 6 miles and threw up mile 25. Just happy to finish. Ran a 3:23. Symptoms are back a little but only while running not walking. Days off to recover tends to bring my symptoms back..Hopefully this will be short lived again. Barefoot running is getting to be a challenge because my toe occasionally drags and stubbing it while barefoot has been extremely painful. Also the ankle buckling is becoming an issue if on uneven terrain. Going to go back to some run/walks, easy running and slow motor control exercises and hopefully be able to feel smooth again. 

Feb 2022 - Did a few run/walks and now have been running 4 days a week (4-6 miles a day) last couple weeks with a couple 7-8 milers.  Dystonia symptoms are improving again already. 

May 2022 - Felt pretty good last two months. Did some strides occasionally and decided to test a few couple min-track workouts out, two weeks in a row in May. Have now been dealing with more dystonia symptoms unfortunately and have had to run/walk a bit last two weeks keeping the pace easy.  Have also been super busy and not getting the best sleep..so going to see how this week goes.

July 2022 - Had to stop running early June. Symptoms just kept getting worse..even trying to run longer. Took a break and went back to pool jogging almost daily. Included some bike riding for cardio. Feeling some improvements and after a few weeks started running a bit. Its better but still some ups and downs.

I'll continue to update the timeline here. If you are interested in following my journey..I occasionally post vidoes etc about it on my  IG page @ReCOREfitness 

If you are dealing with dystonia, would love to connect on the Facebook group as well.

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