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.
Seriously if you can’t add anything of value rather than make lame jokes, probably best to stay out of this thread. It’s not really fun to not be able to walk properly for 10 months (literally unable to take more than 2 forward steps with the entire body seizing up) of which 5 months were exclusively on crutches, so if you can hold the lame humor for another thread where we’re not trying to discuss medical paths to get back to regular quality of life, it would be highly appreciated.
Hi. A friend sent me a link of your post (thank you for posting). I having been dealing with something very similar the last 6 years without a diagnoses or improvement. Would it be possible to connect with you directly (via email) to run a few questions by you? If so, please let me know how I can connect.
Thank you in advance for your help. As you can imagine its been a tough road.
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.
Seriously if you can’t add anything of value rather than make lame jokes, probably best to stay out of this thread. It’s not really fun to not be able to walk properly for 10 months (literally unable to take more than 2 forward steps with the entire body seizing up) of which 5 months were exclusively on crutches, so if you can hold the lame humor for another thread where we’re not trying to discuss medical paths to get back to regular quality of life, it would be highly appreciated.
I apologize to everyone in the thread for the lame humor (or apparent lack of it). I know too well the pitfalls of chronic pain and have lost my own season because of it.
Sorry.
Hey Chris, after I typed that, and got a coffee, I realized I should have probably taken it down. All of us being athletes on here, I am certain that we all want the best for each other so I should have read the “good” in your post (and being able to walk and jog backwards is actually a good sign according to my neurologist in that all of this should be peripheral nervous systems and mechanical entrapment related and not central nervous system as another neurologist had previously diagnosed). Pardon my overreaction and hopefully you get over your pain also and loss of season. Now let’s get back to Russian dopers, Lance calling out Cancellara, team Sky’s unreal performances and other assorted diverse entertainment
If you’ve not already tried, you might see if your physicians think its worth considering an inversion table if there is some possible entrapment going on. As I said above, I’ve not gotten very far with the medical people I’ve gone through related to my own issues (but obviously not as severe issues as yourself and kiki are dealing/have dealt with) because all scans/etc… are normal, and I’ve tried various things that seem reasonable on a trial and error basis based on others with similar problems. In addition to all of the single leg exercises it appears are recommended regardless of the root cause of the problem, I’m fairly certain inversion for 5-10 minutes every morning and evening has assisted in some of the improvement I’ve seen. A lot of people have various strong opinions on inversion therapy, so I was hesitant to mention it above, but I certainly don’t think it’s hurt anything related to my own condition.
I have had similar issues and it ended up relating to the spine and disc issues. I am right now recovering from a flare-up with L5, which means I had terrible leg pain, foot drop, and instability with the left side of my pelvis.
I knew that I had a protrusion at L3 and L5 and had worked through some issues stemming from a flare-up in 2008. I had Lake Placid and Chattanooga on my plate this year. Bailed on Lake Placid but I am going to swim and bike Chattanooga and play the run by ear and see how it goes.
Things that helped…Chiropractic and Inversion table had the biggest effect. I have also had massage, acupuncture, dry needling, cupping, steroid shot at the onset.
The warning signs of the impending detonation of L5 was an occasional weakness in my left anterior tib. that I attributed to my legs being a bit tired from cycling. I only really noticed when running without earphones , I could tell a slight slapping with my left foot…
Give the inversion a shot and get your pelvis balanced but with the Chiropractic , I would go nice and easy , no aggressive stuff. Just my .02 .
If you’ve not already tried, you might see if your physicians think its worth considering an inversion table if there is some possible entrapment going on. As I said above, I’ve not gotten very far with the medical people I’ve gone through related to my own issues (but obviously not as severe issues as yourself and kiki are dealing/have dealt with) because all scans/etc… are normal, and I’ve tried various things that seem reasonable on a trial and error basis based on others with similar problems. In addition to all of the single leg exercises it appears are recommended regardless of the root cause of the problem, I’m fairly certain inversion for 5-10 minutes every morning and evening has assisted in some of the improvement I’ve seen. A lot of people have various strong opinions on inversion therapy, so I was hesitant to mention it above, but I certainly don’t think it’s hurt anything related to my own condition.
Thanks, one of my friends lent me his inversion table, but I have only used it 2-5 min at a time so far for a few weeks. I’ll need a few more weeks to build up to longer sessions. My neurologist has referred me for a cortisone epidural shot at L5-S1…so now on the endless Canadian wait list for that. Have been doing chiro and accu now for 9 months and that seems to have gotten me off crutches to getting around on my own feet. Doing a zillion other exercises on one leg and PT exercises daily…all of which are adding up. Keep in mind I had a fairly traumatic injury to head-neck-pelvis-psoas-knee in 2011. The recovery from that was long and most docs did not expect me to walk properly again (went on to do 10 more IM’s…even rolled down to a KQ), so there is a ton of scar tissue through the entire chain “in the way”. One of the neurologists I saw during this stretch was surprised I did all that and basically resigned me to anti spasticity meds for my entire life (I have not gone on them because it does not make sense that I could do everything like a regular human in between).
Sounds like you have it covered. Good luck with recovery. I think you will be fine. Problem is these issues take 10x longer to heal/recover from , I think the mental side is the toughest at times… Luckily our chosen “hobby” requires a good bit of stubbornness and grit which helps…lol
Sounds like you have it covered. Good luck with recovery. I think you will be fine. Problem is these issues take 10x longer to heal/recover from , I think the mental side is the toughest at times… Luckily our chosen “hobby” requires a good bit of stubbornness and grit which helps…lol
Yes, I agree on the stubbornness and grit. Sometimes that is what gets into trouble in the first place (in my case 4 years of compensation around old injures and then a single traumatic event that broke the proverbial camel’s back), but indeed the same stubbornness is assisting in climbing what is seemingly a never ending mental mountain. On a plus not since our hobby requires variety, I’m just in the pool a lot. When the day comes that I can compete I SHOULD be Front of Pack in M50-54 on the swim leg. In the mean time, the 1ish hour I spend in the pool daily is a refuge from discomfort and allows me to feel very much like a normal person, rather than someone who is visually cripple for other day to day activities.
I’m really glad you found someone who could help you, and that it’s 80% better. I hope you get to 100% very soon. Major kudos for being so good with doing all the exercises.
I think I might have this as I’ve been extensively worked up and tests don’t find anything. That said, I wanted to share that I created a Facebook group called “Runner’s Dystonia Q&A,” as an open forum to share information and stories. Obviously this isn’t too common, but hopefully as the group grows, it can be a source of information and sharing results. https://www.facebook.com/groups/1950441388556003/?ref=br_rs
I wanted to share that I created a Facebook group called “Runner’s Dystonia Q&A,” as an open forum to share information and stories. Obviously this isn’t too common, but hopefully as the group grows, it can be a source of information and sharing results.
since we’re back on the front page :> thanks Hollyanne for starting this FB group. Information-sharing is key to resolving this perplexing condition.
i’ve had success relearning to run with an overhaul of my routine and specific strength exercises. I don’t know if my situation applies generally, but am blogging here and am happy to answer specific questions by Private Message, under the welcome pulldown.
I rarely post here but after reading this, I have to. I am also having this to a certain extent. It’s noticeable most on a TM as others have said. One thing that doctors miss is pelvic wall dysfunction. Please don’t discount this. It might appear on the surface to have nothing to do with gait at all. But how things are enervated, it can absolutely cause coordination issues and then the search or assumption for serious back issues comes in (of course, as it makes sense). I accidentally found out during a pelvic exam and one press/poke internally, recreated intense and odd glute and leg pain that I had had for 1 year with no resolution. The doc knew what was going on right away.
There are special physical therapists as unpleasant as it sounds, that do internal work. We have no conscience control over these pelvic wall muscles. We can’t relax on demand. It all fell into place after that exam.
I rarely post here but after reading this, I have to. I am also having this to a certain extent. It’s noticeable most on a TM as others have said. One thing that doctors miss is pelvic wall dysfunction. Please don’t discount this. It might appear on the surface to have nothing to do with gait at all. But how things are enervated, it can absolutely cause coordination issues and then the search or assumption for serious back issues comes in (of course, as it makes sense). I accidentally found out during a pelvic exam and one press/poke internally, recreated intense and odd glute and leg pain that I had had for 1 year with no resolution. The doc knew what was going on right away.
There are special physical therapists as unpleasant as it sounds, that do internal work. We have no conscience control over these pelvic wall muscles. We can’t relax on demand. It all fell into place after that exam.
I am curious to understand this better. Can you point me to some references? I just want to understand as there is some limitation through my pelvis, but I think it is more related to the old psoas injuries throwing the entire complex out of equilibrium.
I will do some checking and will list what I find. I will say that men can have pelvic wall dysfunction also of course. I really thought I was going crazy because no one believed me that I was tripping or missing a step on the TM, etc.
After finding out about the pelvic wall issues (which led to bladder issues, other intestinal issues which led to a colonoscopy and I’m pretty young) I was talking to the 1st physical therapist that was trying to help. When I mentioned the pelvic wall dysfunction he said oh that can cause coordination issues which leads docs to start looking for equina syndrome and other things and that there was a specialist that did this type of therapy in the same building. Who knew!
I realize it’s a stretch but if no other reason has been found and in the absence of any solid medical findings it may be worth looking into. There is no way I could “feel” it though. It took someone pressing my pelvic wall internally and then an interesting biofeedback session to understand that these muscles were on lockdown.
One telltale sign is that I would have someone work on me, I would get better for a day thinking they fixed it only to have it come immediately back. This is one thing the ob-gyn said while examining me “I bet you get worked on, feel great for a day and it comes right back”. I could not believe she said that actually. I can understand for women it would be easier to “find” however.
An update. This perplexing condition will affect very few on this board – if you’d like to chat directly please PM me.
I have hypermobility (lax connective tissue) – this has certainly played a role in the complex of symptoms.
From childhood, my hips were extremely imbalanced – the good leg worked normally, the bad one revolved through gait as an appendage, swivelling latitudinally around the ball joint rather than longitudinally to and fro. When that’s your normal, you don’t perceive it, and I trained and raced aggressively around it.
As a cause or result of the hip imbalance, I developed an impingement (FAI) at the hip joint. I believe my body raised it to stabilise the compensation.
As a cause or a result of the imbalance, I also had a subluxated sacroiliac joint (mildly dislocated). Incredibly, I had no idea.
training and racing despite these skeletal issues caused a tight network of fascia to develop to support the compensation. It eventually distorted my entire leg (valgus at the knee, varus at the ankle) and badly affected even walking. I never had any pain, and at a standstill, had decent muscle control (meaning was very good at compensating around my problems, which effectively masked them).
So there we were.
I had the FAI removed, and started aggressively activating a largely deadened hip/psoas to work through the right plane.
After many months of hip/core strengthening, I spontaneously snapped the SI joint back in (having had no idea it was out – in fairness, neither did any of the docs and physios that had examined me. Even my hip surgeon hadn’t caught it.)
Since then progress has been excellent. The challenge now is getting out of the thick fascial web that developed to stabilise my malpositioned leg.
(This webbing may be specific to hypermobility, I don’t know. Anyway the fascial overgrowth had the effect of isolating muscle groups from each other, limiting range, and deadening sensation. The nerves were pretty much muffled within it).
I’m getting free of it by distracting one element of the skeleton against its opposite side, and pulling the soft tissue across bone, given really good hydration and very warm tissues (bikram helps). It’s slow and deep work but I’m finally getting freedom and firing pattern normalisation back after nearly a decade of disability. Meaning the joints all work fine, they simply couldn’t talk to each other.
I realise this may sound like science fiction! But if you know someone with an undiagnosable lack of coordination they may be experiencing something similarly weird internally. Again, please PM for more info.
i had the nerve test…an emg…and it showed that i was missing a “signal” to my lower right leg. glad to read this post as I have been dealing with this for about 5 years:( lots of strength work helps as does yoga, but it’s still very on and off. I did fall lots at first, so stopped running for a while as that was dangerous! i mostly walk/run now, but have been able to race 5 and 10ks decently and have had good results walk/running half and full marathons using the galloway method with speed.
Any idea how you got your SI joint to pop back into place? Oddly enough, I’ve been fairly religious with the happy hips program from Lawrence van lingern (sp?), and this past 2 weeks it feels like something really wants to “pop” back into place right around the joint on the affected leg.
with all the ab/core activation I was increasingly able to draw the top part of my bad-side pelvic wing (along the crest) backward, as it seemed to “float” slightly within the abdomen. It felt as though it was sitting tipped anterior, versus the other side.
So I was playing with it, pulling the top element back, and at the same time squaring the base, as if to do a heavy deadlift. In it snapped. What’s weird was that I didn’t understand it was dislocated until it clicked in. The sensation (and instantly improved flexion down my leg joints) seems to point to that as the problem. Fortunately it’s been stable ever since.
Hey thanks for sharing. I’ve been going through circles trying to get back to bike and running and finally I am. The key for me was to use the rowing machine and strengthen my lumbar spine and core area. So far I am on a 5.5 month stretch of running. I am generally running around 20-25% slower than 10 years ago (5 min per km pace feels like 4 min per km pace). My left leg is just excess baggage as I can’t dorsiflex it fast enough on recovery to have my foot flat (relative to ground) when I land. Its still pointed downward a touch, so I am constantly worried about coming down at the wrong angle and twisting my ankle. When I finally have hard contatact with the ground my brain is ready to push off so there is this “pause” in the gait and rather than swinging my left leg though from in front of my body past centerline to behind my boy, its more like throw it forward, wait for it to land and then pause it it is under me and then try to push off. I also have too much vertical oscillation because I need it to clear the foot drop because my hamstring is not lifting my heel high enough on recovery before I swing the leg forward. Running on a treadmill in front of a mirror is helpful.
On a plus note after 4 years, I did 4 Olympic tris and decided to roll the dice and jump into a half Ironman. My swim+bike times to t2 are similar to 10 years ago. The runs were all 48-51 min in the Olympics and 1:51 in the half IM. But almost any day I can go out and run now. I am doing a ton of core work in the pool with all the dolphin kick training for IM and butterfly strokes and am finding a fun outlet doing masters swim meets.
