Loss of coordination in leg - Official runner's dystonia / focal dystonia discussion thread

Hi everyone, I found this thread almost two years ago when I was started losing coordination of my legs when cycling or running. I used to be a triathlerte and did an Ironman race. About a week or two after I finished my first Ironman I started losing coordination of my legs while cycling. It would usually happen after around 1-1.5 hours of cycling that I would just totally lose coordination of either one or both of my legs. I would feel a slight tingling sensation in my feet and then eventually my leg would just start flailing outwards and my foot would want to point downwards. I couldn't control it and would have to stop cycling and it would stop. Then it also started happening while running. At anywhere between ~5-10 miles of running I would start to feel tingling in my leg which would lead to it just flailing outwards and me being unable to control it. I would have to start walking and it would go away, but then I would start running and it would come back making me unable to continue running. I was convinced I had whatever was being discussed in this forum.

Anyways, I went to see a neurologist and he basically said that it didn't seem like it was anything neurological but more likely a muscle issue. Long story short, I'm in medical school and started learning about electrolyte imbalances. I was looking at the symptoms of hypocalcemia and was like sh*t, that sounds an awful like what it is that I'm experiencing with my leg when I cycle/run. When I would do my long rides and I would usually only drink water unless I was doing > 2 hours. I also sweat like a pig so it made sense that I might have been deficient in electrolytes. So I started supplementing rides or runs longer than 70 minutes with electrolytes and lo and behold my weird leg thing went away. As an experiment I did a long bike ride where I only supplemented with maple syrup (no electrolytes) and the leg thing came back after around 2 hours. Next week I did a long 3 hr ride and supplemented with electrolytes and never had the weird leg thing. I was never able to go longer than 2 hours since this started happening.

So I'm convinced that what I was experiencing in my legs was paresthesia and tetany as a result of being deficient in electrolytes. I've been supplementing with gatorade endurance and all my runs and rides longer than 70 minutes and it has gone away. Just thought I would add it here in case it might help anyone in the future.

for anyone who may be interested - I made a youtube channel discussion my dystonia/lack of coordination. For me it began in 2020, where I found myself on this exactly forum scouring for answers and falling into a deep depression. I have found my way back to running bit by bit - not 100% normal, but normal enough to get out there racing again. I plan to post videos weekly or biweekly if I can.

Wonky, if you're still checking this thread, what hip and leg exercises did you focus on? And did you work with a PT on identifying this faulty movement pattern, or another specialist? Or did you analyze your own running gait?

Keep pounding out the miles. You got this!

Bump

Thanks

Is running on the elliptical good for this?

I spent nearly 5 years trying to determine the neurological cause of this. It seemed so clearly neurological at the time. Gradually, after several years, I realized it was a muscular imbalance caused by deskwork, horrendous posture and a lazy running form.

Although I have now identified the form and posture I was missing, and thus identified the root of my leg atrophy, it is too late. I lost my late 30s in a running sence, going from a 2.30s marathoner to someone who might hold that pace for a km on a track. Also, the imbalance is now, in a sense, engrained: even after improvement, it persists, with one leg and all associated tendons far more active and stronger than the other.

The strong leg would sort of craw and draw me forward - this was also the leg that would give out,not allowing me to controll it after 10-15km. Over time, it became more pronounced and early in my runs and, eventually, walking.

There no way possible for you to make lasting improvements?? How do you know for sure?

what would you have done earlier about this if you knew the cause then?

My symptoms are when l run one leg is stiff and won't bend. I barely clear the ground and l scuff the ground as I run. This has been going on for 4 years now. When l am stressed l also drag the same leg when walking. I don't have the money to go to all those specialist. Any ideas?

Hello I just want to reemphasize that if anyone here has not been supplementing their runs with something like Gatorade Endurance, please do so. This very well could just be an electrolyte issue. This might not be the answer for everyone but it was the answer for me. I was only drinking water and had all the symptoms listed in this thread and I was going crazy thinking I had to quit running/cycling. I started drinking gatorade endurance while working out and it all went away. Very simple solution for something I thought was far more complex

Hello.

Does anybody have the time to go to CHATGPT, and ask it to summarize these 67 pages? And then post the results here

Don’t have reliable internet here out in the sticks….

Hello

5 years ago I was afflicted with runners dystonia and even posted here myself looking for answers . I always came back to this thread looking for someone who came out the other side and was running again. I came here to say that person is me. I, like many of you, have been through the wringer with this. Seen everyone , got the shots, the mris, the scans, the Pt. I can honestly say the thing that got me out of the hole of despair was PRI… it’s not a fix all but it helped a ton. Sometimes I feel symptoms creep back in and I know that just means I need to get left hamstring working again or left oblique or whatever . I’ve come such a long way and I have actually started doing coaching calls if anyone is interested here is the link. Just know there is hope.

calendly.com

Dystonia Coaching Call - Dr. Maria Winters

Open link

mlbfan24 I’ve read every post you have about the loss of coordination while running. I’ve had this for about a year now. At first it seemed like I could push through a 7 mile run maybe stop once to alleviate the discomfort and then go again but recently I’ve started to feel like even 0.1 miles into a run. I’ve gotten MRIs both with and without a contrast injection I’ve gotten x rays and done band exercises to strengthen my hip. No doctors know what it is. I’ve going to a marathon specialist to figure out if he can help. I get this pressure build up along my right quad when I run and every time I lift my leg i feel the pressure build up which leads to my leg stiffening up and me losing control of it. I feel like the doctors think I’m crazy. I do have a hip labral tear as seen by my MRI but my symptoms that I’m facing aren’t consistent with the tear so that may just be another thing. I love running so much and don’t ever want to give it up. I run to relieve stress but this is causing me even more stress.

did anything happen to work for you? I know you last posted 3 years ago and started posting abt this 18 years ago but any advice would be appreciated.

All,

Followed this thread closely in high school. This is my answer back to anyone trying to figure these symptoms out.

I was a 4’30” miler who didn’t get better after age 16. My symptoms were the same as many described— couldn’t raise leg properly, sluggish and difficult to sprint, lower back issues. Stretching did not help. I walked onto my college’s XC/Track team and later had to leave because I couldn’t figure it out.

Get your psoas checked out. 5 years of not knowing what it was, to include multiple PTs, visits to the doctors, and coaches who didn’t understand it. A masseuse noticed my Psoas was tight and told me. 25 now, and I can run enjoyably again. I’m not saying it’s definitely the issue for everyone. For me, rehabing my psoas explained the back pain, weak leg symptoms, etc.

Years later, I hope this helps someone. Working through an unsolvable injury as a distance runner had an impact on my self esteem and mental health in general. I didn’t get the college career I wanted, but there are many important things besides running that will bring you happiness.

Note- I’m going to bookmark this thread and check once in a while. Feel free to reply or leave a contact if you have questions.