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

Final update on my runners’ dystonia. Neurologist had me try three pharmaceuticals that have been reported to treat this disorder. Sinemet (L-dopa & carbidopa) had no effect on my running but did give me vivid, color dreams. Carbamazepine (Tegretol) actually made things worse. Finally, I tried Trihexyphenidyl (Artane), an anti-Parkinson’s drug. (I don’t have Parkinson’s). Started with 1 mg/day, and immediately found that I wasn’t dragging the left foot/leg as much. Slowly upped to current dosage of 2 mg, 3 X daily. I have had significant improvement and actually am starting to feel like a runner again from time to time. Each time the neurologist upped the dosage by 1 mg/day, I got a bump in decreasing my time to cover the same daily route. At its worst, I was running ~11-minute miles. As I’m getting fitter again, I’ve decreased that to 8+-minute miles. Will see how this goes as my fitness level improves. May need to increase dosage. Only side effect for me is dry mouth. Just glad to finally be getting better.

I posted several times on this thread around a year ago and thought I should give a final write-up of what’s been going on. Since I last posted, my coordination issues have greatly subsided; still present, but FAR more manageable. It’s tough to say why exactly either. I slowly began running more and more and over the successive months the issues popped up less and less. I can’t tell you the last time I’ve had to drop a run because of it, and over the last few months I’ve been in better shape than I ever was before these problems.

I think having Graston work done on my hamstring helped, as well as basic strengthening and easy runs that didn’t aggravate the issue, and I believe sprinting helped as well. My theory as to why the problem initially occurred involves several factors. First, pulling my hamstring and not taking adequate time off. This lead to the scar tissue. Second, was running in large, clunky, maximalist Hokas. I believe this lead to my hamstring being “phased out” as it was not getting activated adequately on runs. Third was not preforming proper strength/rehabilitation exercises that further deactivated the hamstring, and made the rest of my muscles in my legs compensate the work that was being done by the hamstring. Take all of that with a grain of salt, because it is just my unlicensed hypothesis. But once I switched to minimalist shoes, began doing more strengthening work after having my scar tissue broken up, my condition only improved.

I hope this can help someone, and I am unbelievably grateful to be running well again.

I have had all of these symptoms that you guys are describing. Dead leg sensation, weakness, loss of control/coordination in my leg that honestly renders running pretty damn scary. For me, it feels like I lose control of the leg below the knee. I experienced occasional tingling and difficulty lifting my foot off the ground after walking or running for a while.For a long time I thought this was all due to ankle instability (as my issues began following an ankle sprain 3 - yes 3 - years ago). I have done so much PT for my ankle but honestly even though it is currently pretty strong, that has not helped with the 'lack of control' feeling in my leg. Hence, I began to consider other potential causes of my issues and saw a really great sports med doctor who ordered a nerve conduction study, not expecting to find anything significant but telling me there was a slight chance that we would. The result? Peroneal mononeuropathy at the fibular head. There was a 10 m/s conduction drop posterior to my knee in the peroneal motor nerve. Luckily recruitment patterns of muscles in my leg all turned up normal. So, while I am not saying that this is what everyone on this forum has, I am saying that nerve issues are worth looking into.

Anyone afflicted with this ailment,do yourself a favor and give it up. This is truly a lost cause.Save yourself the time, energy and heartache of looking for answers. There are none. It's just a slow, steady demise.

Here's an article on the problem from the January 2018 issue of Runner's World. They even mention this thread in the article:

https://www.runnersworld.com/health-injuries/a20865203/runners-dystonia-mysterious-malady-causes-mind-and-muscle-to-lose-touch/

I remember reading this thread way back when it was started, because I had the same symptoms -- for years it felt like my left leg was going to give out, and like I couldn't control it. Sometimes it would just stop responding, like there was no power when I tried to run.

In 2012 I wound up being MIS-diagnosed with Multiple Sclerosis. I had a lot of neurological symptoms, tingling, numbness, nerve pain, would slur my words in the heat, and had the "MS hug" pain. I had repeat brain MRIs and have lesions all over my brain. Despite all this I ran multiple marathons and was in phenomenal shape.

This year I was CORRECTLY diagnosed with Lyme disease, Babesia, and Bartonella (Lyme co-infections). I do not have MS. I never saw a tick bite, never got a bullseye rash, and never had joint pain (Lyme does not always cause joint pain, I didn't know that).

Less than 50% of people who are bitten by ticks get a bullseye rash. Nymph ticks are the size of poppy seeds so good luck finding one if it's in your hair. You can also get Lyme and Bartonella from spider bites. Bartonella is called "cat scratch disease" because you can get it from a cat too. There are 29 different strands of Bartonella, and new Borrelia bacteria (Lyme) are being discovered every year. Testing is incredibly unreliable and false negatives are VERY COMMON. Your dr. may tell you your Lyme test was "negative," but in reality they don't know how to read the test results. You should have Igenex testing done and see a LLMD.

Lyme is more common than breast cancer, there are over 300,000 cases each year and that is just the people who are properly diagnosed (misdiagnosis is very, very common).

I have had tons of tick exposure over the years, so I don't know when I was infected -- Lyme can go dormant for years, and will re-emerge after the flu, surgery, trauma like a car accident, or stress.

I don't know what the hell "runner's dystonia" is, but it sounds like a bullshit made up disease. If you have any strange symptoms over a long period of time that come and go and move around your body, if you ever had a "summer flu," if you have been to different doctors and can't get a proper diagnosis or are told it's an autoimmune disease, MS, Lupus, ALS, mono, CFS or fibromyalgia -- GET TESTED FOR LYME. I have read so many stories about people being misdiagnosed with ALS and it turned out to be Lyme, it's terrifying.

I hope this post helps someone.

Look up Runner's Dystonia as previously mentioned, this seems to be the issue. Unfortunately it is quite new and there is no cure. The meand of suppressing the effects seem kind of expensive and to be honest, I have seen no real success stories yet.

Curious if treatment for Lymes has helped your symptoms?

I think I may be dealing with this issue. What's weird about it is that I have yet to experience symptoms when racing the 5k. 10k it has happened twice and also during a half although I somehow was able to stave it off and finish decently. I've been considering just running many miles and doing only hill repeats and strides otherwise and just sticking to 4 mile and under. Basically I've been told my hip on the left isn't pulling it's weight and my foot is trying and failing to compensate.

I'm curious if after all this time if anyone has had any success? After going through the entire thread, there doesn't seem to be much of a consensus on anything. It seems to me (as I believe that I have experienced this a number of times) that this seems to be neuromuscular issue. Glute weakness seems to be a major culprit, however, strong glutes would be rather inconsequential if hips are out of alignment, particularly the sacrum being out of place.

Some observations/questions/ideas:

Does anyone experience these symptoms at the very end of a race (i.e. kicking) with the sensation being that of extreme lock up?

Has anyone experienced these issues while doing continous fast runs on a steady incline? (treadmill tempo)

Could adductor strength (or lack thereof) be a primary reason why this occurs?

This has happened to me during treadmill tempos, a steady uphill tempo run, and continous struggles at the end of races (inability to kick without extreme lock up). Happens sporadically but is easily the most frustrating injury(if thats what you want to call this) I have ever experienced.

Stumbled upon this. Have been dealing with this for 5 years now. I saw one post that is correct: this is a slow steady decline. 2 surgeries later (sports hernia and labral tear, neither of which fixed the issue) and countless PT, graston, PRP, whole blood shots, dry needling with stim, etc. - has not improved anything. This ultimately has pinpointed itself to be a tear with irreversible nerve damage to the tendon and part of the femoral nerve (called the cutaneous femoral nerve) attaching to the hip at the lateral rectus femoris/TFL.

Now I am getting scared because my muscles compensating for the past 5 years are mainly the adductors and center of the quad. I am literally tilting as my affected leg doesnt have the lateral strength and wants to track directly under the center of my body. My unaffected leg is hurting constantly at the inner ankle and is doing a lot of the work. Ever since this happened I do not have the feeling at the outer foot and outside of the thigh because of the nerve damage. That femoral nerve has been damaged.

I went to phenomenal doctors - UMass Medical and Boston Children's - and they just never really figured it out. At least not quickly enough to catch it and fix the damage. Honestly I dont know what to do - have been staying in shape by still running about 2-3 miles 3x week and mixing it up, but I have to accept that this is coming to an end. I have a young daughter less than a year old and I'm torn with despair that I may not be the guy I always thought I would - running around, hiking to faraway places, playing sports.

If there's one thing I wish I could have done: this all started when I thought I was too good for just 5k's and started getting into tri's and half marathons. I ended up getting a hernia, which I got fixed with mesh. I came back too quickly and even though the doc said I was ok to push it, I ended up doing this damage to the other side. And I would hold off a few days, then push again. Just didn't know how to heal it because I could always just "run it off". That ultimately wasn't the case, and now I'm hosed for good.

So please, don't feel pressured to do that marathon. The short stuff is good enough. Throughout my years of running, very few humans are built for long distances. Most just get too addicted to beating themselves up and are worse for it.

Hello friends.

As many others, this has been a long-term issue for me.

However, I think maybe I’ve stumbled on something that might help. (I literally discovered this last night, so I haven’t run in the leg yet).

When I did what’s indicated in the video, I started getting a rather strange sensation in the affected leg; viz. almost as if sensation and blood blow was being restored to the affected leg. From what I gather, this posture gives the piriformis a lot of slack. It makes sense, then, that the sciatic nerve is not being aggravated in the same way.

I know we’ve discussed labral tears, MS, FAI, etc., and perhaps there’s truth in all these, to some degree. But, perhaps it really is the most simple explanation after all, i.e. the piriformis is screwing up the nerve.

Try this video and let me know if you feel the same sensation. I’ll post again later after I run to let you know if it seemed any better.

https://youtu.be/h-vfPIIMMhA

Hi all,

I just remembered about this thread. I'm slowly making my way through reading all of the posts on this thread as I think I've been experiencing something sort of similar to some of you (but also different). I posted about it on this thread and would love insights if anyone has them.

https://www.letsrun.com/forum/flat_read.php?thread=10755133

Most of us have different length legs. Some more than others. I think this is the main cause of these problems.

This is true for elite athletes also.

The best way to illustrate this is to run in snow covered ground about 1 or 2 inches deep and you will see that your left and right strides are noticeably different lengths.

Also, when you kick a soccer ball, do you favor your left or right leg? Most of us are much stronger on one side than the other.

This is a little known fact about our bodies and how they function in exercise. With such a lack of knowledge and understanding, we have a long way to go to understand these muscle tensions and how to treat them. But at least it's a start.

That's interesting, I didn't realize the issues people in this thread have had are related to leg length (I'm still pretty early reading through it). For me personally, the problem is uniform throughout both of my legs, both at rest and during exertion. I would no better be able to train in swimming or cycling than I can in running.

I'm sure it's been years since I posted on this thread, but here is a quick update.

A few years ago there seemed to be a greater awareness of runners dystonia being a possible cause for what many of us seem to be dealing with. I joined the Runner's Dystonia group on Facebook and discovered there was a list of doctors that could diagnose this condition.

Back in July I was able to get an appointment at NIH with the neurologist Dr. Mark Hallett and his team. I was given a thorough neurological and physical exam. The main finding was that I have asymmetric hyperreflexia which means that the reflexes on my left side (the problem leg side) are much stronger than my right. This was noticeable in my biceps, triceps, knees and ankle. It was and still remains unclear if this hyperreflexia is the culprit or not.

MRIs of my neck and brain were ordered and there were no findings from either. I asked Dr. Hallett if he thought I had dystonia and he said probably not. He suggested coming back in a year for a follow-up brain MRI although it seems highly unlikely there will be any findings since my issue has been stable for 15 years and my two previous brain MRIs did not reveal anything.

So I am not really any closer than when I started, other than I now know I do not have some type of dystonia. I'm still not sure if the hyperreflexia means anything within the context of the loss of coordination in leg, but after 15 years I strongly believe this is some type of neurological issue and not muscular.

The good news is that I can still run 6-7 days a week and find courses that minimize my symptoms. I also discovered that running a hard mile on the track in spikes does not seem to trigger it. There is something about the spikes and going hard around the turns that keeps things at bay. So I'm going to train for the mile for the foreseeable future and see where that takes me.

Hey- just curious did you ever figure this out ? I have the same symptoms as you. Been dealing with it for over a year now . Please email me mddwinters@gmail.com

-OK, folks, so I’ve pretty gotten this thing under control, after about 11-12 years or something.

-To keep from rambling, I’m going to post this in point-form.

-The cause seems to be a combination of things, so I won’t get too much into that discussion. However, I’ll mention what appears to be at least ONE cause: nerve aggravation due to overstriding.

-Here’s what I do to manage things:

-Pre-run:

-Lie flat on back and wrap strap around bottom of foot. Pull foot upwards as far back as you can, and hyperextend your knee. With your hands, gently move the leg up and down as you feel the nerve stretching. Do this before you run.

-Also, before you run, do the “Reverse Nordic” exercise, and, also, really stretch the calves, especially on the affected leg.

-While running:

-First, please understand: I am 100% not in any way affiliated w/ Pose running.

-However, probably the most important recommendation of all, learn the principles of “pose running.”

-It appears that “overstriding” causes the aggravation of the nerve, and the leg losing control (e.g. spasming, foot flailing inward, etc).

-You should be barely voluntarily moving your legs.

-Running should essentially be: jogging in place with a good knee bend, “tall posture” and then “falling”. Don’t consciously try to drive the legs.

-The video below REALLY helped me get this under control.

-On your easy runs, shift your focus/intention from anything whatsoever resembling “driving your knees” or deliberately “extending the leg/hip”.

-Instead, keep your leg muscle as limp and relaxed as possible, and allow your forward motion to be nothing more than you falling forward.. In your mind, it should almost feel like your two feet are in the same place, viz. slightly behind you, and making very small gentle, but fast steps as you merely jog in place and fall.

https://youtu.be/_DTd7t8nzEg

How are you doing now ? Any update ?