Warrior’s Page

This page will be dedicated to posting anything sent in by others living with FND.   I'd love to hear your stories of diagnosis, what works/helps with symptoms, what makes things worse, how you manage stigma, what inspires you to keep going, the whole works!  FND can be such an isolating illness, due to it being misunderstood, or just not heard of.  Perhaps by sharing what we can, each of us can find different ways to improve our ability to function, together. 

 

March 24, 2023

I have officially started receiving emails from fellow FND warriors!! (I am smiling from ear to ear right now, since you can't see me!) Let the sharing begin!!

Here is the very first email sent in from K. with permission to share! Thank you so much K. for writing, and thank you for your courage!

 

Hello comrade!

I started to cry reading your blog. All the symptoms you went through, are the same. The pain (overwhelming pain 🤬), the fatigue, the lack of concentration, forgetfulness, etc….
It was so refreshing to hear someone who goes through the same thing. Knowing that my doctor has dismissed me, but that all of these things are real… And I can overcome them!
I can’t be too frustrated with my doctor, as he really doesn’t know a lot about this. And besides his is one person and this is not his specialty. He will be leaving in July so I can have a new doctor be assigned to me. My hope is that this doctor listens and wants to learn more.

You my permission to use my story

Here's another informative email from a fellow FND warrior! Thank you Barb for allowing me to share your story; 

Hi there,

 

What a great site! I can relate to a lot of things that you've written. Please share this e-mail if you wish 

 

I was diagnosed with FND in June of 2021 triggered by the first dose of the COVID vaccine. It started with spasming, balance, and coordination issues and then pain and sensory issues. I was also very active and athletic and now not so much. I struggle with brain fog as well. 

 

It's been a struggle because I was given a brief description about what FND is, a prescription and told to try physiotherapy and Cognitive Behavioural Therapy. I did my own research and pretty much put my own treatment plan together by trial and error.

 

This is what I have found helpful for me. 

 

Physiotherapist - I went to 2 other ones before I found one who is knowledgeable about FND and treatments.

 

Chiropractor - she takes a holistic approach and does other techniques other then your typical back cracking. This has been helpful in managing my pain. 

 

Naturopathic Doctor - I was never big on supplements but I'm glad I've tried them because B12 and especially a mushroom supplement called Lion's Mane has really helped me with managing my sensory Issues and brain fog.

 

Barb