Functional Neurological Disorder (FND)

I had my stroke on 30th November 2021 & made some good early progress with physio. Then one day my affected leg suddenly felt very heavy like a lead weight had been attached to it & I was no longer able to lift it.

I spoke to my physio who felt it was an unusual stroke symptom. I felt like they didn’t believe me but when they tried lifting my leg they could feel the heaviness.

A few weeks later they mentioned that it might be FND. It was explained to mean in terms that a stroke causes problems with the hardware & FND is more a software issue. I was told to go away & look at the website www.neurosymptoms.org & let them know what I thought at my next visit. I left this session very upset & feeling like they thought I was making it all up.

I looked at the website but wasn’t convinced I had FND as it discussed lots of things like tremors, tics & seizures; none of which I have.

Following a subsequent visit to the stroke team they confirmed the FND diagnosis via a hoovers test & said that it was likely triggered by my stroke.

It’s taken me a long time to accept this diagnosis & the fact that I may never see any improvement in my leg & my walking. On the flip side it could also correct itself one day & I remain hopeful.

There has been no improvement for months despite all the physio & exercises I did/still do & has quite an impact on my mobility. In essence I have a leg that has a full range of movement if someone moves it for me but it doesn’t move on its own. It holds me up & enables me to move around (dragging my leg along) slowly but is useless other than that. If you lift my leg & let go it crashes to the floor as I have no control over it. I also have a foot that turns inwards & a type of footdrop. I have, what I call a happy & a sad foot :grin::grin:

Compared to some though my symptoms are mild for which I am grateful.

It’s a condition that medical professionals understand little about & as a result people with FND often get fobbed off & any other symptoms they have get labelled as FND without further thought. It’s cost me a small fortune in shoes & socks as dragging my foot wears holes in them :rofl::rofl:

Not really sure of the point of this post other than for awareness. If you’re still awake & have reached the end thank you for reading :grin::grin:

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Thank you for sharing your journey. I suffer from extreme tightness which limits my mobility and the Drs have mentioned post thalimic stroke pain, complex regional pain and post stroke parkinsonism. It looks like you experience the same nuero unknowns. I empathize with you on that. Keep up the good work and update if you feel like it. I would be interested in anything the medical professionals get correct, hopefully. Take care.

@Mbhope thank you. It’s frustrating isn’t it when we can’t get the answers we want & need. I’ll definitely keep you updated. Hope you get the progress you crave soon xx

Thank you Loraine (@Loshy). I’ll never lose hope & will always keep trying. Gets a bit frustrating at times but doesn’t get me down for long.

Sending hugs right back at you :hugs::hugs: xx

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Oh Ann. (Mrs 5k)Sorry to hear your story but hope your leg recovers on its own one day soon. My arm and leg don’t seem to improving now and I’m struggling with the physio regarding a splint or brace or anything to stop my foot turning over. I feel in the house last week which has dented my confidence. The physio is getting advice from a senior person at the hospital to see what he can suggest but it all takes so long. In the meantime I’m getting more and more frustrated.

@Apple how frustrating for you. Try not to let your fall dent your confidence. Easier said than done I know. I often stand on my toes or catch them on things as I can’t lift them. Thought i sliced them through the other day. Made me swear a bit :grimacing::grimacing: really hope you can get some answers soon. Take care Ann xx

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Thanks @Mahoney it’s so difficult when drs don’t understand. My GP said she’d never heard of it & did I mind if they parked it for now as I had other issues that needed sorting. I was ok with this at the time as I was waiting to see orthotics. I may need to revisit it now though.

Hope you’re doing ok xx

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I hope this update is posted in the correct thread. If not please let me know. I haven’t been around the Forum very much because of my increasingly overwhelming symptoms. It seems I now have Functional Neurological Disorder FND. I am relieved to find others here in a similar situation to mine.

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@Bibs i have moved this post to this topic as I felt it might be more helpful for you as it already discusses FND. Like you I have FND. I don’t know how it affects you specifically but mine affects my left leg - functional limb weakness. I also get a lot of dizziness & fatigue & not sure if these are FND or stroke related or both (I suspect both). I’m currently waiting a face to face ENT appointment re dizziness & really hoping for some answers then.

Hope you get some help for your symptoms soon xx

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I looked at
Fnd
Which gave me an overview of FNDs

Seems to me it’s another one of those seemingly medically specific terms that equates to “we don’t know”.

Its as specific as ‘cooking’ or ‘art’ - an umbrella for a thousand and one things.

I’m sorry that you all have symptoms of an unknown cause that’s labelled so generically that identifying treatment options requires deeper understanding -

When there aren’t causes the medical profession don’t know which path to take to prevent.
then it seems that often it lacks something to suggest coping strategies and compensating techniques.

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You’re absolutely right @SimonInEdinburgh it is very much a we dont know so we’ll give you a label & leave you to get on with it. Well that’s my experience at least. Some areas do have access to much better care.

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Thanks for moving my post and leading me to some useful information from others. I had Hypnic Jerks for years; NHS says they are normal so I did nothing. Since my stroke they have got a lot worse; strong spasms all over which won’t go away at night until I get out of bed and start some daytime activity. I had an opportunity to see a neurologist and he has confirmed likely FND. I don’t know if I am sleep starved or it’s FND, but my short term memory and aphasia are very bad, I stagger all the time, struggle to look after myself and have no energy or strength.

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That’s true Simon. I don’t have my next neuro appointment until 21 May 2024! So I am exploring other options to FF any help or advice. Luckily, living in Scotland means that I might have access to a world authority on FND in Edinburgh. That’s the person you linked in your message!

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Cool !

Is that at RIE Little France?
That’s about 2miles from me or are they at Asterley Ainsley or Longstone - Either way Good Luck :slight_smile:

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I really hope you can get access to thecworkd authority in Edinburgh. Help for FND is very scarce around the country & many are just left to get on with it.

I don’t know if you use Facebook but there are a couple of groups on there for FND - FND Hope & FND - Action. They also have websites.

There is also an app in the app store (neurosymptoms.org) that you can download which has lots of info & a symptom tracker i think.

I’d love to hear how you get on with any appointments if you’d be happy to share.

Best of luck

Ann

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Ann I am so sorry for my delay in answering your post. I have reached a point of tears and dismay. A report confirmed my FND in November 2023 but the next available appointment is seven months later - to discuss things and explore any treatment if need be. Since my FND was added to my post-stroke clinic attendance I am also not discharged from that. Put another way, it is likely to be about 17 months before I can drive. I am very grateful for your suggestions; I need to disconnect my FND progress from my stroke recovery. Thank you so much; your luck is going to help me.

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Looks as though I won’t need to cross the Forth Simon. Having a lot of problems this side of the river though. :slightly_smiling_face:

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R U in Fife?

Ps what the cats name?

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Did you ever have an injury in your left leg? My jerks keep me awake most of the night so I catch up sleep in daytime. Once awake I can distract myself and after about an hour go back to sleep. I jerk all day but it is less obvious. I get a lot of dizziness and fatigue. I leave lights on; drop just about everything I pick up and my short term memory is very poor. Like you I think the FND makes the stroke effects a lot worse and it’s impossible to tell the difference. Have you had your appointment yet?

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@Bibs i understand the tears & dismay. I remember when my physio first mentioned FND to me she made it sound like I was making it all up despite saying it was not my fault. I left that session in tears. It took me many months to get my head around the FND diagnosis but i’m there now. I hope you get through this stage quickly. Not being able to drive for 17 mths must be very frustrating for you.

7 months is a long wait to see someone especially when you just want answers & a way forward. I have been waiting 18 months now & still not seen anyone. I don’t think there’s a FND service in my area which doesn’t help.

I’ve never had any injury in my left leg at least until I had my stroke which left me with left sided weakness. I know they often put FND down to previous traumas. When my physio said it can be caused by trauma my response to her was I’ve not had any trauma. She reminded me a stroke was a trauma…fair point I guess :slightly_smiling_face:

In relation to your dizziness have a look at PPPD.

pppd symptoms - Google Search

I’m wandering if this is my dizziness. I’m waiting to see an ENT consultant re dizziness so guess I will find out more then.

I hope you manage to find some relief from your symptoms soon.

Best wishes

Ann

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