Possible new technique: Hi, I wanted to... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Possible new technique

ChaosCats profile image
5 Replies

Hi, I wanted to share something that has helped me a few times in regards to the muscle stiffness of FND! So for me (and I imagine for others) having FND can feel like being a "marionette" or a "puppet on strings." Basically, body feeling out of control. But a few weeks ago I was having the muscle stiffness and "locking up" in one of my arms, so I pictured that there were strings attached to my arms like there would be on a marionette. From there, I imagined I had a pair of scissors in my other hand and then used the scissors to cut the strings. It made my arm relax and sort of drop. I've used it a few times now and it has worked to make the stiffness go away so I wanted to share it to see if it might help anyone else! Heads up: limbs/muscles in question may get weak briefly afterwards. So for example, if my legs were tight and I couldn't bend my knees and then I do the "marionette" technique my legs might then buckle slightly and my first few steps afterwards might be a bit shaky. But yeah, I just wanted to share something I made up that has worked at times for me although be prepared for possible muscle weakness afterwards. Let me know if it works for you as well or if you want me to clarify something please! :)

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ChaosCats
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thinkin profile image
thinkin

Hi,

I've used such techniques when I had FND migraine from which I've been in remission for nearly 25 years. I started stopping when the symptoms came on and using the visualisation. I recovered in the space of a week after suffering for 15 years after a head injury. Sadly, it hasn't worked with the movement disorder that I developed years later. I may try it again though , these things are always worth a revisit. Thanks.

What I do use is vibration. I use a massager on my shoulders and back and for my legs I have a vibrating massage belt/ heat pack (I don't need the heat pack). I have been able to walk much further with it. When I first started my body tingled for a little while after I switched it off, but it soon got less and less and now I don't have that at all. I managed to go for a walk and take pictures of local woodland and an old abbey. I was so happy. Trouble is, now I'm in my 50's my joints are telling me that they haven't been used to such work in many years. I forgot that I used to ski, even skydived in my teens. It all comes back to haunt you when you start to move again!

I can see that my technique probably would make some people worse. It's not expensive or harmful to try either. We need free/cheap effective ways and more research of course. It would be nice to have some sort of research that would say try this if you have these symptoms or don't even bother if you have these symptoms. We are all little lights shining in the darkness trying to find our way through. xx

ChaosCats profile image
ChaosCats in reply tothinkin

Hi, that might be something worth trying. I know for me heat helps at times but I don’t think I’ve heard of vibrations before with FND. Although I think I see how it can work as tuning forks in eastern medicine seem to be helping. Thank you for sharing your experience and what works for you! I like your statement about all of us being lights!

NorCalFND profile image
NorCalFND

hello ChaosCats, I’ve found similar techniques work well. Distractions or starting with small wins like start by moving a part of body that works well or a toe that will wiggle like you want it to before trying to move the problem at the moment. I’m a firm believer in the “just keep swimming” or “little steps” when you’re having trouble. Anything you can do to keep moving via cutting your strings, stepping over pain, or just moving a toe if you can’t move your leg is a win!

None of this shit is easy but I love hearing things that help! I’m new to this disease but this sense of community is really helpful and hope this helps others.

ChaosCats profile image
ChaosCats in reply toNorCalFND

Hi NorCalFND, I’ve also found that distractions are helpful! FND does seem to be something where you have to take the little wins that come along. I’m working on getting better at that and having small manageable goals versus larger goals. In a way I feel like it’s almost having to play little mind games with yourself. I’ll have to try working on moving just one small part of my body, that might be a good technique so thank you for sharing! If the medical field won’t do too much, then I think we need to lean on and learn from each other!

Lady4 profile image
Lady4

Glad you have found a technique that works for you and thanks for sharing. Imagination can be a powerful thing.

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