FND Diagnosis. Feel scared and alone

[FNDrunner]

I’ve just been discharged from hospital with FND diagnosis.

I’m scared and confused.

3 weeks ago I was training for my second marathon, now I can’t walk upstairs, speak properly, breathe properly, swallow properly and have lost all strength.

It all seems rather scary to be discharged. I feel completely disabled. Does it get better? What should I be doing to get better?

I have no previous history and this came out of the blue. I got ill 3 weeks ago and it just kept getting worse to the point where they hospitalised me.

What can I do? I feel very low and confused.

[WorriedPappa]

Everybody's journey is different. There are some good FND Facebook groups that you should join so you don't feel alone.

[WorriedPappa in reply to WorriedPappa]

neurosymptoms.org/ is a good place to have a read to understand a bit more

[Van604]

Hi. I've also been diagnosed with "functional weakness" which is a ridiculous understatement! Some episodes have been so bad, they think I've had a stroke. In 4 years I've been in the hospital 4 times - one time was for 8 weeks. So they really need to come up with a better name for this! I've learned not to push myself - just listen to my body and not overdo it. It's tempting on good days just to go for it and do as much as possible, but then I pay for it. So pacing is key. I suspect nutrition plays a part, so I try to eat healthy. Did they test your B12? I'm very deficient, so I supplement. Did they just discharge you with no follow-up? There are specialized FND clinics you could attend. Some seem to have good results. Unluckily for us, FND is somewhat of a medical mystery, but there is growing interest in neurological circles, so I'm hopeful they'll figure it out eventually. I find it helpful to learn as much as possible about it. The FND society puts on weekly webinars. You can sign up on their website. You're not alone - there are many of us, but this is not a widely known disorder, even though it's as common as MS, Parkinson's etc. All the best.