3 years later

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3 years later

Postby trajon_34 on January 19th, 2014, 5:03 am

Hi everyone! I wanted to check back in for those people that appreciate this stuff. My original post is here:

viewtopic.php?f=8&t=16375&p=119055&hilit=Trajon#p119055

And subsequent 2 year update here:

viewtopic.php?f=8&t=19041

In short I can almost guarantee you I twitch more than anyone (although a few out there might be close) ;). And I went through just about every symptom mostly because of the stress and anxiety we all place on ourselves through this. Once I got through that mentally and accepted I was going to be fine things got MUCH better. Not easy to do but it can be done. My 2 year update tells how I did that. Anyway, I still twitch hundreds of thousands of times a day and don't even care anymore. I Promised myself I wouldn't look at them several years ago and this only aided in my reduced obsession. In fact I feel them going crazy as a type this. I still run way too much and have really grow to appreciate my otherwise good health. In the grand scheme of things I feel lucky to have bfs cause people suffer from much worse. I know this is easier for me to say than someone fresh into this experience but I promise you that you will eventually get there.

I'll check in a few times in case anyone has any questions but will eventually check out again for another year. This is a great website with some awesome veterans that are extremely smart of the subject.

Thanks!
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Re: 3 years later

Postby emmie.s on January 19th, 2014, 8:37 am

trajon_34 wrote:I still run way too much and have really grow to appreciate my otherwise good health. In the grand scheme of things I feel lucky to have bfs cause people suffer from much worse. I know this is easier for me to say than someone fresh into this experience but I promise you that you will eventually get there.


Wonderful!!!!! Thanks for checking in!!!
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Re: 3 years later

Postby donnastar on January 19th, 2014, 10:49 am

Thanks so much for update and providing us encouragement. I'm going to take your offer of questions. I read you pushed through the symptoms and continued to run. I also love running much shorter distances and prior to BFS found running very therapeutic. My mind goes into a zone that is such a great stress relief for me. I want to continue running but find the arches of my feet act up with twitches so much so I get foot cramps, pain and sometimes are even stiff in the morning. Also in the last six months I've start yoga but find that too makes my feet worse. Any suggestions on how to push through?
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Re: 3 years later

Postby Yuliasir on January 19th, 2014, 11:05 am

Hi Donna,
I am not a runner but my sworn brother is, and he noted that the footwear means alot. For example, he runs in a high boots becasue he has hypermobile ankles and can not run in sneakers properly. And furthermore he found that one pair supports him, while another causes quite a pain in calves and fatigue - supposedly due to slightly different construction in soles.

Maybe you may found your previous footwear does not fit you any more, or maybe you would need orthoses to support the arch, or more rigid or, vice versa, more flexy boots or sneakers to run.

Running in fact causes so called bilateral stimulation to the brain so no wonder it has a bit hypnotic and notable releiving effect on those happy people who can enjoy it. So I wish you good luck inrestoring your running experience!
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Re: 3 years later

Postby Steph on January 19th, 2014, 11:51 am

Thanks for the update! Reading your story and reassurance was timely for me. I too am a runner (although not nearly at your level) and recently have been struggling with exercise intolerance/muscle soreness. I have run several marathons and halfs, but have gotten somewhat out of shape in the past two years. I was still running 3 or 4 miles 3 or 4 times a week when all of this started in August (clear EMG in mid-October). Since then I have been trying to increase my distance and speed to prepare for a half this spring. Every time I push speed or distance I pay with severe muscled soreness and extreme twitching in my upper legs. I ran 7 miles yesterday at a decent pace, but my legs were so sore/stiff afterwards that it felt like I had raced a full marathon. I get what feels like delayed onset muscle soreness only a few minutes after finishing a run. I am debating on whether or not to run again today, as my plan was to run 5 miles this afternoon, but my legs are still fatigued and sore. Do you have any advice for working through this?
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Re: 3 years later

Postby trajon_34 on January 19th, 2014, 1:11 pm

donnastar wrote:Thanks so much for update and providing us encouragement. I'm going to take your offer of questions. I read you pushed through the symptoms and continued to run. I also love running much shorter distances and prior to BFS found running very therapeutic. My mind goes into a zone that is such a great stress relief for me. I want to continue running but find the arches of my feet act up with twitches so much so I get foot cramps, pain and sometimes are even stiff in the morning. Also in the last six months I've start yoga but find that too makes my feet worse. Any suggestions on how to push through?



Great question. I specifically remember a moment within my first year when my hands started cramping. Which I'd never experienced before in my life. Scared me to death!! Needless to say this also happened in my feet and legs. Especially calves and arces (where I twitch the most. About 90% of my twitching).

I think there are three ways I got through this. 1) I was on gabapentin for a year which was AWESOME for nearly stopping this symptom. And this drug is pretty tame as far as neuro drugs go. I was also on a fairly elementary dose, as my nuero stated. 900 mg a day. 2) your body adjusts over time. I wanted to get off gabapentin because at 28 it wasn't something I wanted to spend another 50+ years taking (I expect to live long ;) ). Been off it for 1.5 - 2 years now and your body does an amazing job at adjusting to a new normal. Took me awhile but I think number three played a part too. 3) finding a place mentally that allowed me to move on. I know this sounds very " coom by ah" but once your get over it your mind really stops amplifying everything. And if there was one single way we can control this it is with our control of the depression/anxiety/fear/etc. I really can't emphasize the impact this has on new symptoms and old. I didn't really believe this in the beginning but 100% do now after 3 years.

Hope that helps!
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Re: 3 years later

Postby trajon_34 on January 19th, 2014, 1:29 pm

Steph wrote:Thanks for the update! Reading your story and reassurance was timely for me. I too am a runner (although not nearly at your level) and recently have been struggling with exercise intolerance/muscle soreness. I have run several marathons and halfs, but have gotten somewhat out of shape in the past two years. I was still running 3 or 4 miles 3 or 4 times a week when all of this started in August (clear EMG in mid-October). Since then I have been trying to increase my distance and speed to prepare for a half this spring. Every time I push speed or distance I pay with severe muscled soreness and extreme twitching in my upper legs. I ran 7 miles yesterday at a decent pace, but my legs were so sore/stiff afterwards that it felt like I had raced a full marathon. I get what feels like delayed onset muscle soreness only a few minutes after finishing a run. I am debating on whether or not to run again today, as my plan was to run 5 miles this afternoon, but my legs are still fatigued and sore. Do you have any advice for working through this?



Hi! I feel your pain. My muscle burning and soreness was mostly in my quads. As my original story stated it kind of just hit me out of know where. My post above can be very applicable to this as well. I would actually get some extreme stiffness in my legs too. I do believe that gapabentin helped me through the original symptoms (obviously this is a personal decision to make). BUT I also think you don't need it to get through this intolerance. Since there were times I was sure if gabapentin was more of a placebo for me. Although Im confident it did help with cramping.

Regardless I'm a strong advocate of being reasonable in what you are doing but just pushing. I think it helped mentally because I could prove to myself that I was really the same as before and the only difference was a "feeling" that didn't ultimately dictate would I could and couldn't do. Not sure if that makes sense but I started treating it as only a feeling/symptom that was just now my new normal and part of running. Sure it made running a bit less fun for awhile but I eventually ran through it and past it in a sense. Can honestly say now that I don't experience any of it besides twitching.

The best part is that other than the mental stance I stole the push through it from someone else on here that also had success doing this. So, I'm not the only example of this working.

The only real way that I can explain the mental stance is that if I was in the middle of the road and a car was about to hit me I knew I could get out of the way. Despite the feeling that I was so tired and muscles weak and burning I could get out of the way. To me this said, these feeling are only that. Feelings. And they don't dictate what I can actually do if I try. Sure the feeling effect you mentally but that comes with time.

Hope this makes sense!
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Re: 3 years later

Postby veryworried123 on January 19th, 2014, 5:48 pm

Thanks for checking in
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Re: 3 years later

Postby donnastar on January 21st, 2014, 7:46 pm

Thanks for answering my question much appreciated and it does help. Getting used to the "new normal" sucks but you're so right about answer #3. Went for a short run on Sunday and consciously tried not to focus on the feet after. Worked as I went for another run yesterday. Hopefully don't get to the point I need to consider gabapentin but good to hear it worked for almost a year for you.
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Re: 3 years later

Postby trajon_34 on January 22nd, 2014, 9:17 pm

donnastar wrote:Thanks for answering my question much appreciated and it does help. Getting used to the "new normal" sucks but you're so right about answer #3. Went for a short run on Sunday and consciously tried not to focus on the feet after. Worked as I went for another run yesterday. Hopefully don't get to the point I need to consider gabapentin but good to hear it worked for almost a year for you.



Good to hear. It's definitely a mental game you master over time. I remember being good for awhile and then slipping back and then gaining some more ground and loosing a little. Eventually it become a non-issue though. I'm doing more now (90-100 miles per week) than I ever have before. Obviously its' all relative and the amount I run is borderline insane but we had the same issues holding us back in the beginning.

I'm sure you'll do awesome!
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Re: 3 years later

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