Running with Dystonia

A BIT PERSONAL -In fall of 2018, I started noticed slight difficulty lifting my foot as I ran. It wasn't every run but by fall 2019 I was diagnosed with Runners Dystonia.  (full story below) 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 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) I very gradually increased training/speed, avoiding 10k or faster paced workouts. And only did a few marathon paced workouts.

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 trauma. Recent research shows that the brain has difficulty processing the repetitive motor pattern due to sensory input impairments. (see youtube video in resources below)

WHAT DOES IT FEEL LIKE? Different muscles can be affected but for me its mostly when running/occasional with walking. I have a few muscles in the calf and foot/toes that will sustain muscle contractions (causing foot to turn/pull out of my control)  I first called it my floppy foot because my foot would drag and sometimes I trip. It took a while to figure out what was happening but common ways to describe are a sense of muscles pulling one direction, loss of coordination, dead foot feeling, foot turning in and down, toe curling/light cramping. No obvious pain or pressure/nerve pain, although people can develop pain if continuing to run with a wonky gait.  See my IG @recorefitness for videos.

DO I HAVE IT? See a Movement Neurologist for proper diagnosis but here are a few things that tend to describe runners dystonia

1)-If symptoms occur while running or walking- try changing direction; run backwards, do lateral steps or go barefoot (helpful to test on grass) and see if foot or leg coordination is normal or better?

2) Does it feel like muscles are pulling in a certain direction out of your control?

3) Was it painful before coordination symptoms started? Most don't have pain when dystonia symptoms start or at rest either unless they have developed a seperate musculoskelal injury due to continuing to run on a wonky gait but Dystonia does not typically cause nerve pain or pain from compression/vascular issues.

If this sounds familiar..record gait video and bring to a sports ortho for referral to movement neurologist. 

There are various types of dystonia and other neurological issues that can cause dystonia like symptoms. It is important to get a specific diagnosis and to rule out other types of neurological disorders or injuries that can cause coodrination issues. Neuros will test other issues with EMG, nerve testing and MRIs. Not all cases are the same and some can deal with coordination issues post injury/surgery that are not dystonia. FPAES (functional popliteal artery entrapment syndrome) can cause similar symptoms as well but is usually a painful calf/shin issue, although I know a runner who did not have pain was diagnosed with dystonia (by outruling other things) and later a functional test found it to be FPAES. 

Task speciic dystonia or Focal dystonia is rare. but cruelly challenges the one thing you really love to do because you do it the most. The brain “short circuits” on a very specific motor pattern and some muscles will sustain contraction, causing coordination issues, light cramping and distorted postures. It also sometimes happens to guitarists, pianists, violinists, and distance runners.

At the time my symptoms began in fall 2018 -I was training for a marathon in Dec. I had just gotten over a very mild calf strain in that leg and looking back was dealing with a lot of personal stress but didn't feel overtrained or exhausted. Workouts were going well. With a background in exercise science, I've tried to be careful to not overtrain, take breaks after races, not train through injuries, continue to strength train and try to get good sleep.

After 3 yrs with this, I joke that the brain says- “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 the old 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 ....it may get worse." 

TREATMENTS - While there is no known cure, there are various ways to help manage symptoms. Many try medicine such as; Botox, Parkinsons meds, CNS muscle relaxers, sensory brain tricks or neuroplasticity exercises to help retrain a more coordinated motor pattern. In very 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 over-contracting muscles will chill out a little on that movement- such as pushing a stroller, juggling a ball etc. Many will also find the brain recognizes a slightly different movement pattern on different surfaces (trail or sand) or going barefoot on grass. Some can bike, stair climb, pool jog or run on an anti-gravity treadmill with no issue.

TRIGGERS: 

Stress:  While maybe it affects symptoms a bit..I really haven't found it to be a trigger for me. I had my best 6 months running during a high stress time not sleeping great and had my worst symptoms at a low stress time.  I also pay attention to my heart rate, HRV which stays pretty normal.

Speed/Intensity: This seems to be the biggest trigger for me but again -no research on it. I have been able to have a couple PRs but with limited interval training as symptoms will increase within 2-4 faster workouts. I have had to be very very gradual about increasing speed and intensity... only getting away with it for a short time and avoiding too many fast strides or fast drills with regular training.

Something that has worked so far for me is to do the most similar motion to running that I can without the symptoms acting up to help retrain the motor pattern, then repeat that movement many times daily 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 sensory brain tricks to no avail -chewing gum, listening to music, podcasts, dribbling a basketball while running.

While I have my flair ups and am learning to accept that running fast and pushing myself is tricky, so far these things have been the most helpful in continuing to walk fairly well and run some:

• -GO SLOW (walking or running)..along with retraining exercises to calm down symptoms
• -VARY YOUR MOVEMENT PATTERNS AND ENVIRONMENT - find some non-repetitive exercise to do..tennis, pickleball, volleyball etc
• Avoid running or walking much with bad motor pattern if foot is really acting up
• -Try running barefoot on grass (smooth soccer fields) -This 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 or Deep Pool Running - While not my favorite..its something and seems to be a different enough movement for the brain for me usually.
• -Stair Climber - I like it because its easy to go slow (sometimes I skip every other stair and go sideways) and get Heart Rate up--similar motor pattern movement to running while getting some good leg strength work in also
• -Run/walk - It usually takes 30 sec -2 mins for my symptoms to start up once I start running. So if symptoms are more severe...I'll only run till I feel the dystonia start up then make myself stop or walk and then repeat the run/walk to continue training a better motor pattern. 
• -Run in place - This works well for me so far..different enough motor pattern (not much hip flexion) so the coordination is good.
• -Run easy/gradually longer once symptoms are very mild (have to combine with retraining exercises) 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 miles..all the way down to 1 mile over the course of 5 months while doing cross training with a similar motor pattern exercise. Then I avoided speed and had 6 good months leading to Boston.
• -Motor control exercises (breaking down the movement) a bit time consuming, but can be helpful... better if I can do them everyday. bear crawls, slow wall knee drive, run in place, marching, eyes closed balance marching exercises
• -Isometric Holds in various running positions- this may help improve “encoding” for cognitive process which can help create muscle memory. Static holds require more concentration and focus, helping to improve that motor pathway.
• -Botox with retraining exercises?..I'm still unsure how much this has helped me..but I think it has somewhat..will keep you posted (read below)
• -Life stress management, (sleep, hydration, keeping pressure off and low expectations with running or not being able to run sometime

• RESEARCH - Unfortuntely there is very limited research on Runners Dystonia and it can easily be mistreated for years as a muscle weakness or nerve compression issue rather than neurological.  Seek a movement neurologist for diagnosis (bring video of gait) and ask for a neuro PT referral for neuroplasticity type exercises or seek experts below.

Here are a few great resources. I have not personally consulted with any but may at some point.  

*Nancy Byl - PT, MPH, PhD, FAPTA, Leading researcher in dystonia. Podcast on her research and clinical approach to rehabilitating those with Focal Dystonia. They were able to develop dystonia in monkeys. She discusses brain mapping.

NIH - National Institute of Health - You may qualify for a free evaluation for Botox treatment clinical study.  They can test for specific diagnosis, do a functional EMG find out what specific muscles are acting up. https://clinicaltrials.gov

*Dr. Julie Hersberg PT, DPT, NCS @Reactivept. Great multidisciplinary approach. Youtube video Neuroplasticity Approach for Dystonia Rehabilitation. They combine NeuroPT (sensory and motor control) while working with Neurologists and/or botox injections or medication to become more functional. 

*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.  Most success is helping those improve walking. He also offers online workshops.

YOUTUBE VIDEOS

Video -Research, Rehabilitation and Treatment for Dystonia. Professor Mark Edwards in the UK. Well sought after. Known for his multi-disciplinary approach to minimizing symptoms, retraining the motor pattern and getting proper diagnosis. 

Video-The role of sensory information in the pathophysiology of dystonia - In this presentation Professor Richard Reilly discusses his research into the role of sensory information in the pathophysiology of Dystonia

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 mostly 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! Thankful 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 so happy  (notice a pattern with races?? maybe lots of brain stimulation?) But within a few days symptoms came back.

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 2 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. 

Nov 2020 -While minimal..symptoms weren't going away so 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 quit 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 help. 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 - Grass runs were helping still somewhat so attempted another mile PR. Trained on grass barefoot then one track workouts even! Ran 5:23 on the track and then 5:19! a couple weeks later with some pacers to chase.  Finally broke that 20 yr old PR and I couldn’t believe how good my foot did. Symptoms came back shortly after.

Jan 2021 -I got back on the roads, kept it easy and noticed my symptoms were improving. 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 and not trip. 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). Still wasn't sure if Botox was doing anything 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. My symptoms were gone by 1-2 miles 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 -reached 80 mpw.. but limited how many marathon paced workouts I did..and avoided strides and anything faster than 10K pace.  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 -Continued feeling some symptoms but better after a few miles. Ran Houston Marathon..got sick last 6 miles and threw up mile 25. Just happy to finish. Ran a 3:23. 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.  

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. Always doing some strength work 2 times a week. Feeling some improvements and after a few weeks so started running a bit. Its better but still some ups and downs. Trying to get to Bruce camp which I signed up for in Apr when I was managing it well. 

Aug 2022-Made slow improvements over a few weeks with pool jogging! Got to 1-2 miles of run/walking before coordination would improve. Excited to get to Bruce camp and just appreciate what I could do. Every day got better there! The last two days when coordination was pretty good, I sped up to a few 7 min miles (some downhill) . Coordination felt off again the next few days and long run took 5 miles to improve ugh. Back to pool jogging most days. Waiting to get back into Neuro and also frustrated symptoms are back a little more, but makes sense that speed triggered it. Will slow it down and see how it goes. Ran today and got to 3.5 miles before coordination improved.

Sept 2022 - Symptoms have been frustrating but thankful just with running not walking. Not sure pool jogging helps as much as grass running so tried the barefoot grass runs again. Actually felt pretty coordinated so have done that 4 times now and just had my best run 6 miles feeeling really good. 3 on soccer fields barefoot  then 3 on the road. Coordination improves after 3-5 miles running most days. Still run/walking the first few miles. But only doing 5-8 miles total a few times a week right now. Saw the neurologist and she mentioned that symptoms tend to settle by 5-7 years. But she couldn't confirm that speed is a trigger. She also has only seen it in the hand. I really want to avoid walking difficulties at this point. I may be seeking a second opinion but will try the Botox (higher dose) in 2 weeks.

Mar 2023 - My symptoms have been more diffucult to manage with running unfortunately. Walking however continues to be good! Neuro wanted to gradually do the Botox (Oct, Dec, Apr) to make sure we were doing the right muscles. So in April I will finally have all 3 muscles injected like I did in 2021 (had my best year running) so we will see if it is as helpful as before or may need higher injection dosage. I run/walk on grass mostly (soccer fields) and havent been doing more than a few miles a few times a week. 

May 2023 - Had 3 injections beginning of April. It has slowly gotten better but I've found if I don't keep up on my brain retraining exercises..I have worse days. I think the botox helps calm some spasticity but not totally. Maybe I haven't gotten the right amount injected. I do still have to work daily to improve coordination. Currently walking 3-5 miles a day, run in place 10 min a day for 3-4 days a week with a few other exercises to help run better. Getting in about 20-25 miles in a week right now. 

Jan 2024 - Currently running a few miles at a time, haven't had botox since April. Dealing with more calf tightness, waiting to get into NIH to explore improved botox injections and maybe look into FPAES.

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.