I am 27 years old and most of my life have been a long distance runner. Getting the facial pain nearly a year ago has completely stopped me from ANY exercise. I cherish the days that just raising my eyebrows or smiling doesn't cause a ton of pain so I don't even consider excercising. I know with some conditions excercise hurts for a couple of weeks but then actually makes it better. I was wondering if anyone has just tried going full force and exercising with ATN?? I have pain ALL the time on all three branches, both sides of my face. I am currently on cymbalta and amytriptiline..I have my good days and bad days. Sometimes I just consider starting to run again regardless of pain it will cause. I'm tired of this limiting me so I am wondering if anyone has done this? What was the result?
I used to have no problems with exercise when my TN was managed. However since it worsened a few years ago, (also in all 3 branches, med resistant, which led to MVD ) any form of sustained cardio activity exacerbates the pain. It’s been extremely frustrating for me as I was always active.
The high doses of a combo of meds don’t help, I’m at my most heaviest weight wise, and sedentary despite many attempts to push through.
I recently had my husband buy a recumbent stationary bike in hopes that I could slowly, ( very slowly) try to get some cardio.
I’m only doing 2 minutes on the bike every other day ( like I said, slow!) and hope that with time I can increase…
We’re all different and in different stages of our journey with TN, so my best advice is to try…all we can ever do is try.
(( hugs )) Mimi
Agree totally with Mimi, I like you, have my good and bad days, the last few weeks bad! But most days I persist in walking my dogs, not runnning, but walk a few miles. Have learned limitations, like today windy and cold (well cold for Houston) and wind and cold trigger so had to skip, hate it, but I know it will warm up and I can be back at it. I take topical with me just in case, but I have found on bad days just a slow walk does help relax and can get through most pain, like today some days a no go but 98% of the time we go each and every morning. Sounds silly but there is something so relaxing about just going out for a walk with my beloved fur kids, they love it so and I find it an escape. Yes there are days I think I can't do this, but I look at those big beautiful dog eyes so desiring to get out, it helps. So maybe baby steps and just walking a bit and see how it feels and take it a day at a time. TN is so frustrating and I have had some bad moments lately, but I have it, can't change it, no insurance for now so just trying to keep on the best I can! The frustration and pain suck, we all know that, but I find the more frustrated or stressed I get the worse it gets so sometimes just doing something I love and what was totally normal before TN is calming. That and meds! And Mimi you hang in there, you are always an inspiration! Let us know how it goes and know we care!
Sometimes exercise is the only thing to stop ATN pain for me. I know, kinda strange. But there has been more than one night where I've bee out pacing in circles in my backyard in the middle of the night.
I have ATN and use to work out it does seem to make my pain worse now. I think it raises my BP? I have it on the area of V1 and 2
Hope you’re feeling better soon too…((( hugs ))) xx
It’s really limiting ! And no one can see it or even understand… Sorry for you
I have classic TN and decided to go for it and go back to belly dance classes 2x a week. Bellydancing helped me feel better but once the pain was triggered from 1hour classes I had to scale it back :( It's a matter of wrapping my mind around the fact that I have to re-learn how to do most things. Be extra patient with yourself. Go slow & find what works for you on your good days. Good luck!
I would encourage you to continue to run should your MD approve. I have ran over 10 marathons and I find running my go to when all else fails and it help me fight depression. Start slow and take it easy!
I find that I don't have trouble when I exert myself, whether a little or a lot (even if it is slow) - it is the pain that comes on Afterwards. Does anyone else have this same issue?
Sw88 - I would take it slow and see what happends (keep your pain meds handy just in case).
I do zumba four days a week and doesn’t help with the pain but does help with the depression and gives me a sense of control. I recommend you start running again.
Thank you all for the replies... I agree with Jodi, while I'm excercising the pain is almost non-existent (maybe bc of hormones/adreneline <-- that just me taking random guesses) but its the pain that comes after that is crazy. I work even though there are days I literally suffer through each minute of the day but I just keep praying for this to go into remission at some pt. I was hoping that someone has had success with ATN and maybe excercise "curing" it. Doesnt appear so!