Functional neurological disorder help and support

sorelle77

Hi, I’m new to the site so do t know how to navigate it yet. But I was diagnosed with Functional neurological disorder in May this year and still trying to come to terms with it but would love any advice from anyone that suffers from this condition. Would really appreciate any help and support x

Jimm_Alumni

Hey @sorelle77, welcome to the community 😊 I don't actually know much about Functional Neurological Disorder, would you mind explaining how it affects you if that's okay? While I don't have it, maybe I've had some similar symptoms from my own conditions that I, or other community members, can help give advice on?

mummabear1001

hi @sorelle77 I was diagnosed with functional neurological disorder a few weeks ago. I had originally been admitted to hospital with a suspected stroke and was in for 5 nights, didn’t get to see any specialists and was sent home with a diagnosis of syncope and vertigo. I continued to get worse and numerous a&e and ambulances called and sent home every time saying it wasn’t a stroke!! My gp referred me to a neurologist and was finally diagnosed with FND. I have weakness down my right side and my arm and leg won’t do what I need them to do and constantly feel dizzy. I have been referred to an FND specialist in Ashford in Kent and am waiting for my appointment but the waiting list is long. I was diagnosed with hypertension high blood pressure in May this year and have had numerous tests on my heart as even basic tasks like getting out of bed or even brushing my teeth my heart rate goes into sinus tachycardia. Just standing up with FND is hard enough but add on heart palpitations and skipped beats and it’s a nightmare!! My last trip to a&e was after I rang 111 for some advice and the out of hours doctor called an emergency ambulance! Once again I was waiting 12 hours to see a doctor just to be sent home as the cardiologist said I have had all of my tests so didn’t want to see me even though the doctor in a&e wanted to admit me the cardiologist said no send her home. I was wearing a zio patch heart monitor for 2 weeks and that was send back a few days ago so now I am just waiting for the results and hoping I don’t get fobbed off by the cardiologist again but I spoke with my gp and asked for a copy of the report as soon as the hospital send it over as I have decided to see a private cardiologist to get answers as my gp, paramedics and every doctor I have seen at a&e suspect POTS but the cardiologist is very flippant and isn’t concerned that my heart rate goes from 40bpm to over 170bpm just standing up. Do you have any associated heart problems with your FND?

Qid

Hey guys. I think what makes FND so hard to deal with is that the symptoms are individual to the person, it does make it hard to find true support. Also, the more I read into it you see that, really, there is no set accepted course forward. Some people accept they live with the symptoms for ever, some are able to realign their neural network and show a real recovery.

One thing that I find very useful is to keep note of things that you feel are out of the ordinary for you and try to track triggers. The Cause and Effect can be unique to you and knowing what it is can really help. For EG if I go out for a walk with my kids, 10 min walk up to the park and back, I will become overwhelmingly fatigued. I will overheat and need to sleep for a couple of hours. I have passed out at my desk its that bad. BUT, if I go for a walk on my OWN, I am fine. The impact looks to be when I am with people I care about and am worrying and or protecting them in the back ground in my mind it mentally fatigues me.

Another thing I get is when I am training well (I try to stay as fit as possible) certain things and training styles can have a massive impact, I've done nothing but, say, arms and my legs flood with lactic acid, finding what and why helps me work it out.

Knowing what triggers and why really helps. Keeping a journey helps as sometimes you're just tired or in a **** mood, but you'll see patterns.

Be open to weird connections - its incredible the things this can impact and in weird ways!

Mary_Scope

This is some great advice @Qid! My disability isn't FND but I've found that tracking what I do has been so helpful in finding out triggers and avoiding them if possible can make things a bit easier.

How do you stay fit? What sort of activities do you like to do?

A big welcome to the community as well😊 It's lovely to have you around here!