What a difference a month can make! Now talk me off a ledge!

At the start of this month, my "dystonia" got really bad again, maybe the worst flare up I had had since the start of it a year ago. I had done a 2.5 run on 4/29 and 4/30 my leg just turned into a peg leg -- like super stiff -- like a pirate during a walk (and a walk where there was a very stressful conversation I'll add). I had about 48 hours where I freaked out and I was looking up mobility scooters to purchase for our Disney trip and panicking out I wouldn't be able to do it exactly reliving my trauma from last year where that all was the case.

On 5/1/25 I said NO MORE this is ridiculous. There is no reason I should be worse now. This doesn't even match my recovery trajectory this past year where month by month I was able to walk longer and faster and when I started running it made walking easier, not worse. I was thinking around the lines of this is an extinction burst or this is another symptom imperative because it's not exactly what my dystonia normally is (which is an obvious contraction of ankle rolling movement). Or given some really big stressors in my life right now and also the upcoming trip, my brain is trying to replay the same playbook.

After dabbling in TMS for a few months, mostly thinking about how it related to my pain, this is where I really threw myself into THIS IS ALL TMS and I have been pulling myself out of the dystonia and out of the pain and away from the chronic hives and itching. My peg leg improved in 1.5 weeks because I did not stop walking or living my life even though it was so hard. After 2.5 weeks the chronic hives itching I had had since 3/17 was gone (I was taking 3 Allegra a day for weeks and now no more) and I have been managing the pain better (definitely room for improvement).

Today I walked and I was FAST. I said maybe today I will hit a 5k which I haven't walked in over a month. I walked 2 miles straight at about a 13:30 pace which is like brink of running. And then all of a sudden into that 3rd mile, I just starting running.

AND I RAN A MILE. AT A SUB 8 MINUTE PACE! My last 0.25 mile was 7:38!!!! HOLY CRAP! (For the non runners it might mean nothing, but my old pace for a mile would be closer to 7:00 and thus far in my recovery my runs have been mostly 8:30-9 minute miles.

I wasn't prepared to do this lol. I wasn't even wearing a sports bra or workout top! I was way overdressed in a heavy sweatshirt because it's cool here. Luckily I was wearing my running shoes and track pants.

My dystonia felt great! My pattern is I start off good for 2 minutes and then for a few minutes it tries to rear its ugly head - but this time it was only about a minute and then gone. I also ran this on PAVEMENT which supposedly for Runner's Dystonia is the most difficult because flat surfaces don't give as much sensory input. (I'll tell you though I'm questioning that concept now, I'm questioning everything I've been told about dystonia. Too long for this post). And I had ZERO pain during the run.

NOW here is the problem. I know that the next 24-48 hours, I'm gonna go off the cliff. No, I don't have to, but this is the pattern, so I do not want to this time. Usually I get an increase in stiffness, or major pain, or hives, or something. My brain LOVES to do something to say you pushed it too far you shouldn't have run. I said over and over again I was not going to run before Disney because I am so afraid of injury (this was my mantra for my September trip last year even though I was ready I was too afraid) but this is the exact fear of TMS so over the last few days I said I think maybe I need to try. I am trying to tell myself there is no way I'll get a "stress fracture" (one of my top fears) or injured my knee or got tendinitis by only running a mile. There is NO WAY.

The last funny thing is, when I started my walk I started crying at different points thinking about everything. It just came out. And of course I burst into wailing tears in the middle of my neighborhood after I ran. I used to do that last year with every new walk goal and run goal I accomplished but I had not done that in a long time. It felt so good.

So any suggestions or words of encouragemnt for me to NOT PANIC the next few days? Because it's already starting, my right foot is like are you sure we shoulda done this?

 

Same sort of stuff would happen to me if i tried to excercise or stand in one place for too long but although it hurt like hell i didnt react to it and just allowed it to be there, thats the key just dont give a monkeys that youve stiffened up and in a bit of pain and just do your best to get through the day

 

@JanAtheCPA - In your experience, do you think this would be effective if something is looping (i.e. same thought keeps getting thrown at you). Also, it feels like it sometimes creates more looping or just going further down the rabbit hole while writing about it, par for the course?

 

Thank you. WILL DO!

 

I love doing this! No rules, just (w)rite!

 

Thinking of you @dystonicrunner. Congrats on the MAJOR breakthrough yesterday.

Sending strength and support for this new day.... a new emerging pattern as we enter the next '24-48 hours.'

 

Okay here is the report. I did, as the kids would say nowadays, "mid."

Negatives:
1. Yesterday afternoon started with a new random pain obsession that I called Charlie (but proceeded to tell it all night it was silly).
2. This AM once I woke up and checked on Charlie he came back. But once I got moving, Bubbles came on with sharp and angry pain way worse than Charlie. I proceeded be angry at Bubbles today, yelling at it through the day saying things like, you can't hurt me when I'm in Kroger I won't have that today. We aren't stopping today you are not welcome. We are fine I did not injure myself so you need to cut it out. (I said way many more expletives).
3. Did not get to journal last night due to social commitments
4. Considered running today, even around the block, but I wussed out due to Bubbles... I have such a hard time letting go of the pains being I overdid it when I run.... but see below #5

Positives:
1. I still walked a lot today (already 22,000 steps)
2. I tried running up stairs for the first time (have not done in years)
3. I picked up a 32 pack of water without stretching and doing knee bends and first and I brought it up the steps in my house (have not done in months)
4. Journaled today
5. Got REALLY mad today at how I feel my pains have been seeded by being a "runner" and it seems like all the runners I know tend to freak out over anything that is an orthopedic injury. Other people's injuries and how they comment on other injuries or pains perpetuated the freak out which I am a pro at. After developed dystonia and started walking again, people told me don't overdo it don't overdo it. "Your walking now is like your running" and told me to take a day off just like you should take days off from running. That made me so mad. I am a human we are meant to walk everyday. And I also didn't need to hear that because I was my biggest gatekeeper of overanalyzing what was too much what was too little. And it was all SO STUPID. I had nothing wrong with me structurally at all. My foot surgery had been months prior. I was not that far gone yet with losing my fitness. Even my three doctors I saw during that time said GO WALK AND WALK AS MUCH YOU CAN THERE IS NOTHING WRONG WITH YOU. (Shocking right?) But no, I listened to my stupid brain and all my stupid running friends who also probably all have TMS about anything that might stop them from running. I should have kept going. Instead I said now I have this terrible disorder (Runner's Dystonia) and I'll never run again and walking is so difficult and I'll never be able to do it without a brace and Botox. I am weak and broken and can't do anything. I have been living in that now for 13 months and it ends now.

6. Biggest accomplishment: Last time I ran a month ago, I ended up not being able to walk again 24 hours later because my left leg decided not to work, and it took me about 2 weeks to crawl back from that. That absolutely did not happen today!

 

That’s huge!

 

All of this is pretty freaking amazing - even the awareness that showed up in the negs. still seems to be a W in so many ways.

And, this is awesome - now you can give your brain new data to replace some of the predictive coding it's been doing using that old, outdated, erroneous data! System upgrade.

Thanks for the update!

 

Just learned this predictive coding term a few days ago -- gonna have to learn more about it! Thank you!

 

Thank you! I am also a pro at a solid rant!

 

Ah, my fellow runner. This is me every time I run. My brain hasn't stopped kicking out that conditioned response yet that yep, this is gonna hurt later. I did a 10K race on Sunday and I am paying for it royally. But little by little I'm getting better at telling myself yeah, it hurts, but that's it. It just hurts. That sucks, but it doesn't mean anything.

 

Further update. I ran 2 miles the last 2 days. I've only done that one other time (ie back to back runs) in 18 months. Trying real hard over here! I think it's working! Bubbles and Squeak are letting up but Charlie came and made his appearance today. But when running the last 2 days minimal pain. Keep telling myself I did not injure myself which is my number one fear.

 

That is so amazing I am so proud of you! I would kill for a 10k again... it's been since January of 2024 since before all this happened to me. I'll make it again I know I will. I hate this pattern of doing something great and feeling great about it and paying for it the next day or week. But I totally expect it so it happens! So I have to work on changing that. Improving slowly....

 

This is awesome. I also love your code names!