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

Just thought I would add something as I have been through the information blender for this issue as well and tried just about everything with varying degrees of success. The variation I have made which has made the greatest change and I've never heard anyone suggest is to cut back on the stretching. I got to the point where I would do up to an hour of "pre-hab" before every run; a large part of this would be stretching out all the musculature around the hip. I've found that limiting my stretching to almost nothing has tightened up my hip in a good way which allows less slop in my femur/hip socket and improved my coordination. In combination with hip centric strengthening it's really provided more stability in my hip join which has translated into a more passive and relaxed leg action. It hasn't been a panacea but it's worth considering. This was all driven by a realization that my "bad" leg was considerably more flexible and mobile than my "good" leg. Good luck with your journey. And FYI in my case I am 99% sure the bulk of my leg coordination issue is due to maladaptation caused my a FAI.

Thought I'd check back in to update on my situation. I'm still surviving and running somewhat. I kind of slacked off for a while and I can certainly say that consistency in doing the exercises and running/going to gym do make the problem easier to deal with.

I got two more MRI diagnostics in the last several months. I did one of the lumbosacral plexus. The report said my piriformis was perfectly healthy, but that my hamstring near the insertion had thickening/tendonopathy. They recommended the scraping treatments, but I'm kinda sick of doing the PT stuff and I thought I'd get a hip MRA before deciding what to do next,

My Hip MRA report did show a labral tear. I'm wondering if there is anyone on this board who did that imaging and did not show a tear. At this point I've sort of given up. I could try a cortizone shot in the hip joint, or do the PT for the upper hamstring, but I'm sure those won't do anything. I could take my scans to some hip specialist, but I'm sure nothing would come out of it.

The last remaining move I'm thinking about is buying a new couch. I have this 15 year old couch that I totally sag into when I'm lying on it. Probably wishful thinking, but none of the other things I've tried for the last couple years have done anything.

BTW, thanks Runnn for detailed response!

Ray11, did you have a PAO with Mei Dan? I am also from OH and saw some scope docs here where I live in Cleveland who said I have FAI and agreed to scope me. They did notice I have borderline dysplasia, too. I am planning on having surgery with Mei Dan this winter. Would love to hear how your PAO went!

Did you sit next to Elaine Thompson on a plane?

Just thought I would post here - I have a diagnosis in my case. After nobody having any clue and trying PT forever - glute med exercises, etc. I finally got in to see a world class hip specialist (four month wait for appointment). Turns out I have an impingement in my right hip. Pincher version of fai, which i think is sort of like a bone spur. It was clear as day on an x-ray. None of the other doctors I saw knew to even look for it. They blamed a partially torn hamstring, maybe a gilmore groin, etc. You could tell none of them really had a good idea - they were guessing. Surgery in four months. I am hopeful!

http://orthoinfo.aaos.org/topic.cfm?topic=a00571

hi all --

I've had some success retraining my lack of coordination with an intense focus on strengthening all insertions to the hip joint (which is torqued forward due to mild scoliosis) and awakening deactivated core muscles.

I'm blogging about it here:

https://runnersdystonia.blogspot.co.uk

good luck to all dealing with this intensely frustrating condition.

new research !

For those that have this frustrating condition and know they don't have one of the more obvious culprits (disc issue, piriformis issue, compartment syndrome, MS, etc), it is worth considering Runner's Dystonia. I've recently created a group on Facebook titled, "Runner's Dystonia Q&A," with the hopes to connect people with these symptoms and have an open forum for asking questions and sharing what works to correct it. Thanks!

Link to the FB group I mentioned above, if you can't find it, is: https://www.facebook.com/...388556003/?ref=br_rs

FB Group is at:

https://www.facebook.com/groups/1950441388556003/

Wanted to make sure everyone saw this. I think I had come across this woman's name before in some of my searches (she might have a blog or something)

https://www.nbcnewyork.com/news/local/Woman-Rare-Condition-Runs-New-York-City-Marathon-Backwards-456704563.html

What kind of shoes do people wear for this problem? I've found that for my problem, a flat soft surface works best for me. I've also found more cushioned shoes work better.

I always been a Nike guy, and used to primarily use Pegasus before this problem. I pretty much can only run in Vomero now as this problem needs a good amount of cushion if I run on pavement. Additionally, the latest vomero with the lunar foam is pretty crappy. I can't really get 200 miles before they lose all impact ability.

Looking for others who might be in the same boat (mostly running on flat pavement). Are there better cushioned options. Perhaps rotating between a few different models could also help.

Thanks

mlbfan24 wrote:

I don't know what causes it, but my leg does something very similar. If you can imagine your femur being able to spin, mine feels like it is spun outward as I run.

If you take a few days off, does your coordination feel worse? I just went for a 6 mile jog after 3 days off from being sick with the flu, and my bad leg was the worst it has been in over a month. Everything was going wrong today...calf, hamstring, quad, restriction, weakness, you name it. And I was just jogging along at roughly 8 minute pace.

I have the same problem, if I take too many days off my loss of coordination is absolutely awful and will happen quicker, but it only affect my left ankle.

Saucony kinvara has been working well for me. When coordination is bad i get major blisters on that foot bc its too "loose" in the shoe but on good days the flat surface and light weight are great.

Doing something every day is super important for me. I like to mix it up with cross training as well to try and stimulate the bad leg in different ways. Started doing hip/glute strengthening every day vs 3 or 4 days per week and that seems to help too.

Thank you Turtle. Agreed with you that staying active and not taking too many days off running works best.

Anyone else with shoe advice. Looking for something with more cushioning than Vomero, but also something that lasts longer too.

I would try the Supernova Boost. It has a higher volume medium to wide last. The boost midsole stays consistent having a softer heel and stable forefoot.

For something lighter but similar feel the Reebok Sweet Road(don't judge until you try)

I haven't had a chance to read through but a few pages but I'm having similar issues. Last February, I had a knee hyperextension moment during tuesday night basketball. My knee to foot went numb and I hopped around to get the sensation back. Was able to play for the remainder of the night but was very limited with push off. I continued to run but noticed I would almost loose feeling of my knee. It felt like I had no idea how or where my foot would land. I was a bit concerned about the instability or lack of sensation.I play with my family physician and ended up making an appointment to get an MRI. There were concerns that I had torn my ACL that was repaired in 2009. Ended up staying off for a few weeks as my boy was born several weeks later. Got my MRI results back and had a lateral meniscus tear: MENISCI: There is evidence of a vertical longitudinal tear involving the peripheral third of the posterior horn of the lateral meniscus as best seen on the sagittal images and there is a flap fragment of the posteroinferior aspect of the posterior horn in this region which is displaced posteriorly 1 mm. No medial meniscal tear is seen.

The only other thing I could think of was peroneal nerve involvement. Here's another impression from the MRI: . There is a small amount of soft tissue edema surrounding the peroneal nerve at the level of the posterolateral aspect of the fibular head. This most likely represents a mild strain of the soft tissues in this region related to the recent hyperextension injury. Correlation with physical examination as to a possible associated injury of the peroneal nerve in this region is recommended.

The strange thing is I can play 2 hours of full court ball. I can sprint up and down the court without feeling this sensation of my knee and lower leg getting fatigued/loss of coordination. Whenever I go out and run for a few miles, I feel the onset at 1.5-2 miles. Makes no sense to me. I've definitely fallen off my running routine and gained about 15 pounds since march of 17. I feel strong when lifting and doing single leg exercises. I'm pretty tight all over but I've been that way for a very long time. I just can't recall a time where I haven't been able to jump back in to some base mileage and build back up pretty quickly. My 5k PR was 17:33 2 years back with minimal running and mainly cycling/mtb. Now I'd be lucky to hit 21 minutes for my 5k. Mainly because my leg starts feeling funky whenever I pick up a little bit of speed.

Just checking in for anybody who had the FAI/labral tear surgery....any updates? I am getting the lidocaine diagnostic re-done, and, after 5 years, I am seriously reconsidering the surgery. Thanks in advance for any updates!

Can I ask what happened when you got your first injection. Any relief in symptoms?