dystonicrunner
Well known member
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?
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?
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