FND Diagnosis. Feel scared and alone: I’ve just... - FND Action

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FND Diagnosis. Feel scared and alone

FNDrunner profile image
3 Replies

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.

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FNDrunner profile image
FNDrunner
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3 Replies
WorriedPappa profile image
WorriedPappa

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

WorriedPappa profile image
WorriedPappa in reply to WorriedPappa

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

Van604 profile image
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.

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