Did you have treatment to retrain tou... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Did you have treatment to retrain tour brain?

Jazymay profile image

If you had treatment to retrain your brain, did you have it straight after your first symptoms, ie, ed - diagnosis- retrain brain.

I can't get my head around this if my symptoms were in the background (at most) and not causing problems, then suddenly one day i couldn't walk. How can you suddenly lose the ability to walk?

15 Replies

Think you may need a good heart to heart with your neurologist. Is there any underlying reason for your symptoms i.e. PTSD/trauma?

Can you walk a little or have you lost the ability to walk in full? I suffered with temporary paralysis in my right side.

My symptoms were described like being a computer, there is no hardware malfunction (disease like MS for example), but it's more like a virus that affects the wiring signals (from brain to body).

I was referred to a neuro physiotherapist as they deal with those with neuro illness/disease. That treatment started with very basic stand and sit exercises and putting one foot in front of another. That dried up due to lack of progress and me needing neuro psychology treatment. After nearly a year without that physio, I'd honestly say that around 70% of my physical improvement has been of my own effort and bloody mindedness. It's been tough, painful and tearful and I'm still not like the old me, but I'm getting there. Fortunately I knew a bit about rehab and exercise and have been able to tap into others in the know to make that physical progress.

Good luck. Dave.

Jazymay profile image
Jazymay in reply to DMA1664

Hi. That is for your reply!

My symptoms are very different to what you describe. I was unable to walk without support - initially 2 nurses, on admission. I was in for 5 days, but only started rehab on the 4th day due to the weekend. I decided to walk up and down the corridors with a game, over and over again. No one told me to. I just couldn't sit in bed all day!

Saying that, I was easily tired. So I slept often too. I think it was the rest that helped, and maybe my stubbornness in just trying to walk.

I now have a cycle of wobbly legs where I need a stick or crutches for balance for a few days. This is after doing some simple housework, with rests. Then I have weakness in the left leg, then some days of general pain that knocks me out so much I do nothing. Then back to walking ok again for a few days. I try so hard to pace myself.

I do have complex PTSD, but i feel my symptoms are managed quite well.

I have only been able to build up to 10 hours of work a week since the PTSD was so bad 9 years ago I had to stop.

You know, it's weird. As I write I put the jigsaw together a piece at a time. Just waiting to see the big picture, lol.

The only thing is, I dont know how to see the neurologist. I was diagnosed and then discharged with physio at home for a week. There IS no follow up.

MyRomen profile image
MyRomen in reply to DMA1664

My movement is in my face and head what therapy do they do for that

MyRomen profile image
MyRomen in reply to DMA1664

When the movement is in the face what do they do for treatment

i have functional dystonia of my left leg ... i'm on crutches ... how did you retrain your brain ?? thanks

I didn't retrain my brain yet, but it is what some therapy is based on. Especially the newer therapies.

so let me know what you try ... my understanding is that functional dystonia is due to a software error in the brain ... the signals to move normal are all messed up ... therapy revolves around imagining normal movement again ... that is my understanding ... much easier said than done ... you need a therapist who knows what they are doing

Unfortunately, I don't have any treatment options because I was discharged without follow up. But I am planning on talking up swimming again, so I will let you know.

are you taking any medications ? i can't swim because of the spasticity and rigidness in my left leg

No. I take meds for PTSD, but not FND. Though they would use Cymbalta for pain in some cases, I still have pain.

Even if you can't actually swim, you might get a lot of relief in a pool because it takes your weight from chest deep. That relaxes the muscles more than you can out of water.

I have a participant at work with left arm weakness, causing severe tightness in her shoulder an back. In the pool she can stretch out and move much more. She can even swim with an arm that doesn't work post-stroke.

Also, if you just practice walking up and down the side of the pool, the water catches you if you fall, but it strengthens you too because of the resistance. Just remember to stay chest height for best effects.

right ... good points ... it is easy for me to walk in the indoor pool but i can't swim freestyle because of the leg spasticity ... but i can walk in the pool ... thanks for your perspective

Hello Jazymay

I have conversion disorder but it is environmentally stimulated however when I am triggered a major panic to those who are around me an ambulance is called and it takes a while to regain normality.

I get lower limb paralysis very suddenly but there will be a childhood traumatic memory to go with it, mother pulls a scary face then limbs become paralyses slightly while thinking about it.

Trying to solve this great mystery that is within myself cannot be relying on today's medical mishaps in my experience.

It is a case that I get put into a situation that a therapist states that I can conduct a treatment but it may make it worse don't know until we try.

The ancient philosophers knew

I am going by the theory of the wandering uterus

Jazymay profile image
Jazymay in reply to Rambo51

Interesting! Do you want to expand on the ancient philosophers and wandering uterus. What is we take that idea as symbolic rather than literal?

I read about that wandering uterus and wondered if those ancient Egyptians were right. My symptoms worsen right before and during my period. I have fibroids in my uterus and I read these fibroid cells hold more of the estrogen and progesterone hormones. Any connections with this to FND

I think there is so much of the brain yet to be discovered, think about it they can’t even cure the common cold

, maybe we expect to much , so much still to be discovered ,I’ve been told not suitable for brain retraining at moment as I have major on going issues with Chronic Pain which I’ve had for 26|7 years....... mind you they may just find I don’t have a brain ?GOTTA laugh , I to have been told the problem is brain not talking to the body [wiring gone wrong > Dysfunctional < ] it certainly is sorry difficult to get things out . Hope this helps

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