Twitches and the like...

[crystallinecanine]

So from what I’ve seen among these posts, quite a few people in this community experience dystonia, Myoclonus, jerks, drop attacks and seizures. Everyone has different triggers so I’m just curious as to what everyone has to deal with. What are your triggers and how do you handle the movements when out in public?

(Side thought: Among all other symptoms, the abnormal movements are personally the worst. It does something to your pride. It’s easy to show others a laugh, but I honestly just want to go and hide! Lol)

[Hidden]

Yes I have those symptoms, I also have limb weakness and gait disorder now.

I deal with it in public by understanding that its self image and being comfortable in your own skin. I've come to the realization that it's no ones fault and I cant control it. People have stared at me but it's because it's not everyday u see a man with a Walker walking like that. So I just let it go. I have waived and smiled takes alot of stress off. I understand I'm different now so I might as well get used to it.

As for triggers the one big thing still is either overactivity mentally or physically. And underactivity just sit all day or watching tv.

I live and accept everyday as Gods gift

[crystallinecanine]

I love your viewpoint on life. There’s a lot of people with disabilities that are just angry/bitter at the world and with everyone who doesn’t understand their illness. They might get angry at those who stare or ask questions.

I don’t mean to sound like I’m talking down to people who have those feelings, but in my opinion it takes a stronger person to put aside anger towards others and smile and wave it off instead! After all, staring is a part of human nature, we can’t help it sometimes lol!

It’s an interesting journey, FND is. I appreciate you sharing your thoughts!!

[Thirza]

Hi, I'm so relieved to see that you have listed embarrassing memories as one of your triggers. I just thought I was really weird! I agree that staying in the present helps and I tell my inner child that we do not have to revisit upsetting or embarrassing memories and bring myself to the 'back in the room' status. I was prescribed Clonazapam in ever increasing doses for many years (I have had all these symptoms for 40 years) but now I don't take any prescribed medication. I slowly weaned myself of all of the medication just to see who I would be without the 'medical cosh'. The answer was that the pain was no worse, the myoclonus remained the same and that paracetamol would take the edge off of the arthritic pain. Rest and sensible planning has kept major relapses and myoclonus to a reasonable level. Now that I am 70 I wear my AFOs ( bilateral foot drop) comfortably over the top of my leggings and completely on show. My comfort comes before fashion on all levels now. Thank you for your encouraging words.

[Regaining-control]

I’m like Matt and struggle with underactivity and over stimulations such as shopping etc. noise, lights.. I think my worst was both times I’ve gone out for family birthday dinner. Full body freeze and disassociation and the other I jumped in my seat the whole time the shaking was so bad. By the end ( and we only ordered mains) my arms were flinging everywhere and I walked like a drunk 🥴. I take s small ball everywhere for distraction. Rolling it in my hand stops the tremors and helps with brain focus. We play with the shakes in the shops when hubby asks if we need something and I shake no whilst saying yes... people stare but we have to find the humour and laugh. I wouldn’t be honest if I didn’t say it doesn’t get to me sometimes with people watching you but I can walk again so I’ll take that anyday!!!

[M3rry]

Not as bad as you describe but tonight I have been plagued - by restless legs and a fly.

The restless legs are particularly bad triggering deep muscle twitches which are just a little painful tonight. It settles a little then the fly comes around, walking over my legs and triggering the next bout of twitching and pain.

Getting through by imagining dire punishments for the fly - the best one is catching it and nail gunning it to the ceiling!!!

Why is it the little things that make life so bad?

[ToesKnees in reply to M3rry]

I wonder if the restless legs are a cause of my fasticulations. The pain flare ups are unimaginable