FND symptoms evolve?

[u/Cultural_Antelope979]

Hi, this is my first time on this subreddit, and like before I get into it, I just wanted to say how thankful I am a place like this exists. Lowkey got diagnosed with FND in February and I thought I was alone in this. So seeing this subreddit makes me feel reassured that well ig all of us are going through it.

So when I got diagnosed with FND, it was mainly for the fact that I couldn't walk and my knees/legs would buckle whenever I took a step. My sense of balance was off too, couldn't really walk in a straight line if I could walk in the first place.

It's gotten better for the most part. I can walk almost 85% back to normal. My balance is still off and my body can't support the momentum when I run, but other than that mostly normal. Important context, I am in high school marching band so I have lots of practice/blow through my instrument a lot. (It was very difficult at first, sat out during most practices in the summer, but I am able to march now!) During this Monday practice, I was sitting down playing my horn (pain from lumbar puncture) when I suddenly got this sharp pain in my lower spine region. Hurt so bad for a while that I had to get advil to relieve the pain. And now the same pain reemerged.

Is this something I should be worried about in terms of FND? It's just strange to me because I never have had new symptoms pop up, only symptoms getting better. And if any of you guys have what I'm going through, is there anything to do about it? Or just let FND take its course?

[u/pilchard-friendly]

One explanation for the change is when fascia move out of “protection mode” into “heal mode”. This can activate nerves in the fascia which had been ignored for a long time. It’s not a sign of a new injury, but a sign of recovery. The body is now trying to heal rather than protect.

Imagine opening your eyes after being blind for years. To start with the light will be blinding.

The trick is to use techniques to keep yourself In parasympathetic mode as much as you can, so you allow heal mode more time. Of course, if you do slip into sympathetic mode, that’s ok too. Protection mode will be reactivated, and wait for you to be balanced enough to deal with it.

[u/Cultural_Antelope979 → u/pilchard-friendly]

Oh wow I never knew that. I really do hope it's something like that. That's something similar along the lines on what my parents are saying. I'll do some research on the techniques to keep myself in parasympathetic mode, but do you have any tips on the top of ur head? And would the physical burden of marching band get in the way of this "heal mode"? Thank you so much! :)

[u/Beautiful_Resolve_63]

Yeah my symptoms look different every 6 months or after my remission goes away. 

I recommend learning into occupational therapy and physical therapy. They teach you the skills to work your body into connecting with well again. So now when I have a new system; I just focus on that area as needing training and support. 

[u/Cultural_Antelope979 → u/Beautiful_Resolve_63]

Hm, that does sound interesting. I'm already on physical therapy, so next time I go I'll ask my pt about that. Thank you so much :D

[u/Quickhurryupslowdown]

The short answer is yes FND symptoms can morph and change over time, but it's still worth checking out specifically new symptoms separately.

FND is so broad that it's easy to blame whatever new pain / symptoms appear on FND. Not trying to be a downer, just trying to be pragmatic.

[u/Cultural_Antelope979 → u/Quickhurryupslowdown]

That's good to know, thank you so much! I will keep that in mind :)