recently received my runner's dystonia diagnosis..is it over?

Yeah, i get where you're coming from, thank you for opening up about that. My only concern is say i do embrace the dystonia, my running would still be heavily compromised either way. I don't see how embracing a major barrier to my running is going to make me cope any better? Every run i try to do from now on will be a reminder of what could have been. This time last year i was running 10 mile tempos comfortably at 5:45 min/mile pace, flash forward to now and i cant string together a 2-3 mile easy run without my leg giving out..its seriously demoralizing. I have tried to run through it but there comes a point where I seriously need to stop or im going to fall flat on my face or snap my ankle

from what i'm hearing though, you were able to get back to mostly symptom free running?

I have no experience with any type of dystonia, but I do have lots of experience with illnesses and injuries that traditional medicine could not cure... and usually I found a cure or treatment. The proof is that I'm still running after being told that my injury meant that I could never run again, that the illness I had was untreatable and that I would have to live with it, that multiple tests showed that I was normal and I didn't have a problem! Well, I'm still running because I found a solution in each of those cases.

You need to look into alternative (complementary) therapies. Don't expect to find any studies... just see what others have tried that worked for them.

You could start by...

Doing a Google search for dystonia support groups and join them. See what has worked for some people.

Join the Facebook Dystonia Support group. See what has worked for some people.

Do searches for dystonia alternative medicine, dystonia treatments, dystonia complementary therapies.

My experience with alternative therapies is 15/85... That is, 85% of the time, the alternative approach won't work, but if you're persistent, you might find the one of the 15% that does work.

When I find an anecdotal testimonial, I ask three questions: What is the financial cost to try it? What is the health risk of trying it? Have several people found success with this approach?

For example, on a whim, I did an Amazon search for dystonia. Typing in dystonia gave me a lot of second words... dystonia brace, treatment, book, and so on. Looking at the books and devices gave me a general sense of what others might be trying... yoga, neck braces... and neck braces gave me the idea that chiropractic might help since the signals move from your brain to your legs through the spine, right? At least I would have an idea of the general areas to look into.

Bottom line: What your doctors are doing isn't working so you need to be proactive to find something that does. That means you might have to come out of pocket to pay for some alternative therapies that don't work until you find one that does work.

Example: I had severe lower back pain last fall. It was so bad that I couldn't run. My sports doc couldn't cure it. I asked around and finally saw a couple of chiropractors and a physical therapist. After about 4 weeks, I found an approach that worked!

The irony is that the approach that worked cost only $20, but I had to spend over $1,200 to find it. To me, that $1,200 was money well spent even though most of it was spent on the 85% of things that didn't work.

Anyway, I hope this gives you some optimism. If you're persistent, you can probably find a cure or a treatment that will allow you to continue running at a high level.

Mostly. Right now it's hard to tell how much I'm limited by simple lack of running fitness coupled with aging, versus the remnants of the dystonia. My remaining stride problems make me hesitant to really push myself when tired, as I'm still afraid I'm going to trip and fall because of the occasional foot-scuffing. I don't know whether it will ever resolve completely, or turn around and get worse again.

Fisky, I think that's a very good general philosophy. I looked into all sorts of therapies for dystonia. I tried a couple that were inexpensive (or free) and appeared very low risk. They didn't help, but they did no harm to either my health or my pocketbook. The things like botox injections and deep brain stimulation sounded potentially quite dangerous and I wasn't going to touch them unless I became completely disabled.

I e-mailed the question. I sent him one last Friday and the answer only came back today so I don't know when I'll hear back.

You're screwed. Time to find another sport.

amkelley, tooperceare, HRE: I know how incredibly frustrating it can be to have an injury/condition that doctors don't understand. I've developed my own protocol to find solutions. For what it's worth, I'll share it.

Find support groups... online, reddit, forums... and see what people are doing.

Do the internet search for dystonia plus key words, eg: dystonia supplements, dystonia therapies. Once you look at 5-6 .gov and traditional sites, look for sites that have an alternative medicine name.

Amazon is a great place to look, especially in the reviews of products to see if it worked and if the reviewer recommends anything else. I found several ebooks and a half dozen ebooks that were free on kindle unlimited. Read the reviews. Yoga was mentioned more than once.

Here's what I learned from a quick search. Magnesium is mentioned several times. However, there are more than one type of magnesium and they operate differently in the body. I'd try to find out which type people were recommending and try a bottle.

I found a supplement called Dystonia Miracle.... sounds like snake oil. I was immediately skeptical... It had less than 100 reviews and 29% were one star! Still, I read the reviews and found that it didn't work for more than half of the reviewers, but maybe 1 in 5 had nearly complete relief! 1 in 5... that's great results for a supplement. I checked the ingredients and found that it contained vitamin C, D three B vitamins and some supplements you'd find in most pre-workout mixes, and something called vinitrox. I looked it up. It's a blend of polyphenols.

Would I immediately buy Dystonia Miracle at $34/bottle? No. But it gives me a LOT of information that I didn't have before reading the ingredient list and the reviews.

On second thought, maybe I would try it. If it worked, I'd have a solution! $34/month is dirt cheap to be able to run again. Plus, you should probably be taking vitamin D and a B Complex supplement anyway.

Are you folks taking any supplements? I strongly believe that as runners, we need more of certain supplements than we can get in a normal diet.

It's over.

Bless you and curse you. I'm a total sucker for supplements. No way I'll be able to resist trying this stuff. The only thing I'm taking specifically for the Dystonia is a prescription drug called, oh lord, I have to try to spell it, Trihexyphenadrill. It's often prescribed for Parkinson's. They tested me for Parkinson's. That's not my problem. But they think my brain is sending too many signals to the muscles at the very bottom of my spine to process correctly. This stuff is supposed to reduce the brain impulses. I do think it's helped but it's doing it very slowly and incrementally. Seriously, thanks for that post.

I had what I believe was runners dystonia. It lasted for years and was unbearable to run with, both because the messed up stride put very unnatural strain on my tendons and because it felt so frustrating/irritating. It was a very frustrating 5 years of my life. I wasn't officially diagnosed (I did talk to a lot of confused doctors and do several rounds of physiotherapy - neither of which helped). I don't know for sure that it was the same thing, and I don't have any scientific/medical backing for anything I'm about to write. I just want to share my experience of what helped me because it was such a frustrating/depressing experience.

Over the last couple of years the issue has improved to the point where I have been able to run a couple of all out 5k and 10k races without even noticing it.

For me, the odd movement/coordination was worst when running fast on flat ground (all out sprinting was better though, maybe because it is a different movement pattern).

What I think helped me was 1) time off 2) running very slowly 3) running on slightly uneven ground. All of those points have important caveats:

1. Time off alone didn't work and I made numerous failed comebacks. But, time off did get me to a point where I could do a short, very slow jog without it being an issue. It also let the muscles/tendons heal from the damage of trying to run through the bad movement/coordination.

2. There was a time when I couldn't even run very slowly without the coordination issue. Running through it never helped. It was only after time off and finding the right pace/surface/time of day that I was able to start improving.

3. I tried running on very uneven/hilly ground like trails and hills. Although it felt better to run on that type of surface, the coordination didn't improve. I think it might have been because the movement pattern was not similar enough. What helped was running on a slightly uneven surface, like a grassy playing field, e.g. a surface you could run on with your eyes closed, where your stride is basically the same on every step, but there is just a tiny bit of variation.

OP, this is great that you post about it – I've been going through a similar thing for six months now. Doctors don't know whether it's a nerve/muscle/other problem and have decided it's either a nerve that needs to repair or runner's dystonia.

Before going through treatments like Botox or other injections, I'd like to explore more options. OP, what were your symptoms?? For me, ONLY when I run hard or fast for longer the foot starts spasming outward and I lose control of the leg from the knee down. If I run easy, it doesn't happen.

Hey sorry to follow up again but I’d love to talk about this some way or another. I’m so frustrated about this and the toll it’s taken in my running so if possible id like to compare symptoms. As I think we have a similar presentation of them. Thanks!

I just got back to you via email

About 12 years ago I was having weird problems with coordination, to the point even walking was difficult. A sports doc diagnosed weak hip abductor muscles, which I thought was odd, and he set me up with some PT exercises that the therapist said would address it in a couple months. It didn't.

A couple years ago I first read about runner's dystonia, and thought, oh, that fits. Basically, I never quite know what my right leg is going to do; as a result, my stride is uneven. I periodically fall for no apparent reason, like my leg just freezes for no reason, especially if I don't stay hyper-focused. It was dramatically slowed my pace, and my form is really terrible. I've cut distance.

It really shows up on my shoes. Although historically I've been a heel-toe runner, the ball of my right shoe shows excessive wear, even if the rest of the shoe and my left shoe show little or no wear. I thus go through shoes like crazy.

I've been running 50+ years, accumulating over 100,000 miles. I can't say that the act of running itself is ever much fun, but I still keep at it.