Runner's dystonia / loss of coordination in leg UPDATED

Triathlon Forum
1

am posting about this unusual condition because it’s a misery for committed athletes and there’s not a lot of consensus on what it is or how to treat it. I’ve had it for about eight years, and am finally turning a corner on recovery.

It first showed as occasional toe drag in left leg, and a foot permanently plantarflexed while pedalling. This progressed to increasing difficulty running (esp on treadmill and pavement) and then walking.

Despite this I raced triathlons throughout, consciously forcing the leg to hold a better position, and/or wearing a brace that kept the foot reasonably level.

Multiple exams by physicians – including MS investigations, lots of MRI’s (all clean), a peroneal nerve release (ineffective), suggestion of hip surgery (slightly torn labrum and impingement). A dystonia specialist suggested medication, which I wasn’t interested in. Also strength training, rolling, etc. etc.

Here’s what worked. A great, intuitive physiotherapist, who ordered complete cessation of running and biking (which, as it turns out, was ingraining the bad movement pattern – 100% quad dominant on the left – even deeper). Six months of 90-minute strengthening sessions, every other day, with leg lifts, squats, adductor work, single leg hip bridges, single leg deadlifts, and fast walking on a steep incline. BORING. But it worked.

What it taught was very interesting though – a good third of the bad leg’s/hip’s musculature simply wasn’t firing. If a muscle is deactivated, you don’t realise it until it starts working again, and then you’re like “what the hell is that and where has it been!” Much of the rest was locked into hyperactivity. I suspect the root cause was poor hip/core strength causing the quad to hyper compensate, a pattern that got ingrained (thanks to stubborn refusal to stop training) and eventually overwrote the code for good, natural movement. The right leg was enabling the bad movement by bracing, which further disrupted the pattern.

Long story short, it’s now 80% better, and improving by the day. It’s not possible to fix by doing the same old same old workouts and hoping to push through. It’s a comprehensive reeducation. The deactivated bits must be lit up by repetitive movements without stress. Once the brain is convinced the hips are strong enough to trust with a normal pattern, it will find its way back to it.

Don’t imagine this is relevant to many, but hope it may help some.

2

never heard of anything like this.
did you fall a lot? seems like running like that would be dangerous. i know there are times late in trail runs where i don’t have the control of my legs that i do at the start, and don’t always land where i think i’m going to. emotionally/mentally very draining; can’t imagine having whole runs like that.

3

yeah, I tripped a lot, most spectacularly the first (and last) time I wore Hokas. Muffled input made it worse.

By contrast, running in five fingers helped, because of the great proprio and light weight. I still prefer them to proper trainers.

4

I’ve had this problem for 7 years. It’s very on and off for me. But what seems to be working is a lot of band work, strengthening with weights, and constant thought of keeping my ankle and knee aligned when striking the ground. It’s not perfect but I’m on the mend. A big part of it is weak or non-functioning glute medius.

5

How did you arrive at dystonia, rather than something else. I deal with a similar issue, and after reading through the below (massive) thread on LetsRun arrived at having a Trendelenburg Gait pattern. Weakness of right gluteus medius throws my entire body over to the right to compensate for the lack of stability provided by the weak medius, which in turn causes the left leg to stretch and lack strength and coordination. For me, this has thrown my entire left side from foot to shoulder to hand to be more stretched. I likely exacerbated the problem for several years thinking the weakness was actually on the left side rather than the right, so I did exercises that likely further engrained the issue. I shimmer my left cleat as well for a few years thinking the leg might be short, which is not the case at all. In any case, from what you describe, the strengthening/treatment protocol sounds the same (or very similar) for both - which has helped a little so far.

http://www.letsrun.com/forum/flat_read.php?thread=1644998

Thanks for posting your experience.

6

I am going to reply back in some more detail later, but I hope some of this may apply to my current scenario.

7

Really interesting thread, as by brother has an issue with drop foot and lower leg issues, and after a few years has been temporarily diagnosed with CMT. (Genetic nerve disease). Can I ask if any of you had the nerve testing done (forget the name) and if so, were they normal? He has no feeling whatsoever so this may not be helpful, but I’m always trying to find him help. We raced one another for a lot of years, and I sure would like him back.

8

I have not personally had any nerve testing done, only the standard scans and x ray that showed everything is normal structurally. The thing that really made me fully buy into my arrival at likely Trendelenburg Gait as noted above, is I’ve started using powertap P1s since May and to my surprise, my “weaker” left leg consistently does 53-57% of the work when looking at L-R balance. Also, I’ve periodically performed single leg pedaling drills and noted the left side fatigues significantly slower than the right. All said, I’m not positive my non medical self diagnosis is correct, which makes me interested in what path was taken to get to dystonia.

9

Really interesting thread, as by brother has an issue with drop foot and lower leg issues, and after a few years has been temporarily diagnosed with CMT. (Genetic nerve disease). Can I ask if any of you had the nerve testing done (forget the name) and if so, were they normal? He has no feeling whatsoever so this may not be helpful, but I’m always trying to find him help. We raced one another for a lot of years, and I sure would like him back.

I can’t really add much to this, but my tests including various MRIs, nerve conduction test, other test in doc’s office have come clear for any upper motor neuron issues…well according to the brain specialist, my issues are in the peripheral nervous system, according to the periphery doc, they are caused by crash/head injury 5 years ago…but this does not explain being able to do everything for 3.5 years post rehab on round 1. The only thing he saw was disks torn in the lumbar spine but they should not cause spasm resulting in foot drop and they only kick in when my left leg passes the center line of my body, not in front ever and never when unloaded (example running in the water). Doc says there is a chance that there is mechanical entrapment of the nerves that feed my lower leg through the soft tissue which we are not seeing in the MRIs further aggravated by the disk tears. He suspects the mechanical entrapment was already there post 2011 (which partially explains slower run times, tripping over things small obstacles like twigs on a trail and lack of pereonal stability on skis and on trails) but add the torn disks and its spasms on every step all the time for 10 months

10

I was having similar (but seemingly less severe) problems with my left side as well. It came to my conscious attention when I realized my left ankle was always sore, then I began to notice that I was tripping frequently while I ran, leading to turned ankles and persistent soreness.

I worked with a physical therapist who determined that my proprioceptors were not functioning as they should. Proprioceptors are the nerves that allow you to sense body position and for instance, touch your nose with your eyes closed. ( I an not a doc of any sort - more info here https://en.wikipedia.org/wiki/Proprioception ) My PT gave me a series of exercises that eliminated my tripping within a month. Magic!

The exercises consisted of lots of one-leg balance exercises ( squats, squats with eyes closed, toe-taps in patterns around my stationary foot, etc… )

It sounds like you had a more severe case brought on by trauma? In any event, my simple solution was a wakeup call that we all need to focus on balance and core as we get older, I’ve worked these drills into my regular weekly routines.

Good luck getting to 100%!

11

responding generally – I arrived at dystonia because I can do anything with my ‘bad’ leg at a standstill. Total command, solid strength and responsiveness. Nerve conduction tests showed nothing, but of course they happen statically rather than in motion.

Because medicine has been unable to give a firm diagnosis or treatment, I’ve had to come to my own conclusions after years of literally thinking through every step.

My sense is this. We have movement codes that are instinctual, run out of the cerebellum and spinal cord and cross talk between the muscles themselves, at a level below consciousness. If there has been an injury, or if the body is being commanded to move despite critical weakness somewhere in the chain (by a stubborn athlete or musician, they get it too), compensatory firing patterns will kick in, where muscles that ought to be motive start acting as stabilisers, up and down the leg. The instinctual good movement is corrupted, and the bad code gets embedded as months and years go by.

Getting back to basic, correct, firing patterns through simple (instead of compound) exercises was the starting point. Then, very oddly, my legs swapped dominance, and a cascade of improvements took place. Now I initiate all movement with my (bad) left leg, starting with a hard toe-off the (good) right foot. The result is relatively fluent, and I understand how very poorly I was moving previously, bulling the leg through the gait rather than letting reflexes do the work for me.

Apologies for the length of this and the woo-woo, which of course is all speculative. Once science can start imaging a firing pattern in motion, help may be easier to obtain.

12

responding generally – I arrived at dystonia because I can do anything with my ‘bad’ leg at a standstill. Total command, solid strength and responsiveness. Nerve conduction tests showed nothing, but of course they happen statically rather than in motion.

Because medicine has been unable to give a firm diagnosis or treatment, I’ve had to come to my own conclusions after years of literally thinking through every step.

My sense is this. We have movement codes that are instinctual, run out of the cerebellum and spinal cord and cross talk between the muscles themselves, at a level below consciousness. If there has been an injury, or if the body is being commanded to move despite critical weakness somewhere in the chain (by a stubborn athlete or musician, they get it too), compensatory firing patterns will kick in, where muscles that ought to be motive start acting as stabilisers, up and down the leg. The instinctual good movement is corrupted, and the bad code gets embedded as months and years go by.

Getting back to basic, correct, firing patterns through simple (instead of compound) exercises was the starting point. Then, very oddly, my legs swapped dominance, and a cascade of improvements took place. Now I initiate all movement with my (bad) left leg, starting with a hard toe-off the (good) right foot. The result is relatively fluent, and I understand how very poorly I was moving previously, bulling the leg through the gait rather than letting reflexes do the work for me.

Apologies for the length of this and the woo-woo, which of course is all speculative. Once science can start imaging a firing pattern in motion, help may be easier to obtain.

The part in bold describes my left leg motion post accident in 2011. It just got dramatically worse in Oct 2015 after the disk rupture.

Dev

13

Your thought process seems reasonable. It seems through reading a few experiences in this thread, plus other online recommendations, that regardless of the actual issue, the training/therapy appears the same. A lot of single leg exercises which force the muscles/nerves/whatever in the weak leg to fire.

To add to the other good recommendations on here, I’d offer that I purchased a Bosu ball about 6 months ago and when I first purchased it, all I did was stand on one leg - I’ve since progressed the exercises slightly. I’d also offer that the consensus online appears to be to never stretch the leg that appears weaker.

14

Can you explain what the hard toe off with the good (right leg) did. Did it open up the hip and get the spine rotating in the correct way to set up the start of the stride on the bad leg? I just tried that and had better success just getting some basic motion going without spasms.

15

i think there’s a stretch reflex communicating between the right/left hip.

As was the case with a poster above, my right (‘good’) hip revealed itself to be more unstable (doing single leg deadlifts) than the left. I think a lot of core muscles on that side were just not working right as well.

By toeing off hard and accentuating a stretch through the groin/rectus ab/oblique on the good side, the bad hip automatically positioned itself better, to fall into the step rather than hoist into it.

good luck!

16

omg, i am going through this right now and it’s really hard. am glad to know that you stopped running entirely as i think that is what i am going to have to do. thanks for sharing your story…it gives me hope! my emg came back basically normal…i’ve had a herniation at l4-5 basically my whole life and do have some spinal stenosis, but that’s to be expected. i’ve been walk/running and doing lots of pt and started yoga. one interesting thing is that i can run backwards with no problems, it’s only forward running where it is so bad.

17

omg, i am going through this right now and it’s really hard. am glad to know that you stopped running entirely as i think that is what i am going to have to do. thanks for sharing your story…it gives me hope! my emg came back basically normal…i’ve had a herniation at l4-5 basically my whole life and do have some spinal stenosis, but that’s to be expected. i’ve been walk/running and doing lots of pt and started yoga. one interesting thing is that i can run backwards with no problems, it’s only forward running where it is so bad.

I can walk and jog backwards with no problem. Cannot walk or run forwards without constant leg spasms.

18

i think there’s a stretch reflex communicating between the right/left hip.

As was the case with a poster above, my right (‘good’) hip revealed itself to be more unstable (doing single leg deadlifts) than the left. I think a lot of core muscles on that side were just not working right as well.

By toeing off hard and accentuating a stretch through the groin/rectus ab/oblique on the good side, the bad hip automatically positioned itself better, to fall into the step rather than hoist into it.

good luck!

Interesting. This morning on the spin bike I tried to think about what you were saying in terms of “bullying the bad leg” into the motion instead of letting the stretch reflexes do their proper job. I just realized that the entire stroke I am holding the quads and hamstrings in a degree of constant tension. I believe this stems from my early experience post 2011 crash when smashed my left knee cap into the front of a house and partially tore the patella tendon. So when I started riding, I was constantly “protecting” it. I don’t need to do that anymore so I focused on pedaling like I do with my right leg (the good one) and let the reflexes help contact and relax the muscles when they need to. What is interesting is when got off the spine bike I was also walking a bit more relaxed.

Thanks for starting this thread. A few small things from here are a bit encouraging, but will check back in a week later to report if it’s just in my head and wishful thinking or if some of this gets things firing better.

19

omg, i am going through this right now and it’s really hard. am glad to know that you stopped running entirely as i think that is what i am going to have to do. thanks for sharing your story…it gives me hope! my emg came back basically normal…i’ve had a herniation at l4-5 basically my whole life and do have some spinal stenosis, but that’s to be expected. i’ve been walk/running and doing lots of pt and started yoga. one interesting thing is that i can run backwards with no problems, it’s only forward running where it is so bad.

I can walk and jog backwards with no problem. Cannot walk or run forwards without constant leg spasms.

You can be backwards run guy at your next IM like fireman guy. Maybe add some charitable angle to it.

20

I just realized that the entire stroke I am holding the quads and hamstrings in a degree of constant tension. .

me too, especially the quad.

it (and specifically a node about a hand’s length down from the pelvic crest) had assumed the work of stabilising the hip, so that my mind thought the hip hinged there rather than 6 inches up. I noticed it especially when doing supine single leg lifts from 90° to flat, legs scissoring. That part of the quad was so hypertonic it literally blocked the other leg from crossing.

it’s was only when i started consciously relaxing the quad that the proper patterns began to re-emerge. Clunky at first, i could only manage every couple of steps, then back to rigid.

Anyway you will find your internal cues to get it to release, it’s iterative, and will build. Give it a couple weeks.