I'm still scratching my head with my fnd diagnosis, and after the latest cold and dismissive gp appointment, I am researching harder than ever to try to confirm this diagnosis in my own mind...
I was curious as to how others were affected in their walking?
After I'm well rested, such as first thing, I simply waddle (with some balance issues which is I think related to nystagmus that I seem to have developed recently, and gets worse with tiredness). Then once I am trying to cover more than 5 to 10 metres my legs start to get tired, until my left hip seems to give up completely and I have to 'throw it' through to move forward. After around 10 metres I can't get much further, and have to use a wheelchair. The exertion of trying to walk makes me feel exhausted and a little unwell, and if I continue to try to push it, things like my speech and swallowing become affected (but these other symptoms usually resolve within a few minutes if I then properly rest).
If I get too hot this also makes things much worse (slightly worrying with a summer holiday booked in July :o!).
I was really interested how many people recognised this pattern of rest, and feeling much better?
I have now learnt if I need to function better on a particular day, I just need to make sure that I walk as little as possible and use my chair for the whole day the day before, even for short walks to the loo etc. In other words not exerting myself at all, then I can function so much better for the following day (Unfortunately careful pacing hasn't worked for me to improve things long term).
Does this sound familiar?
Kaz x
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Kazandlily
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I Also have walking problems , mostly right leg which I have to scuff along the ground. Surprised I have any soles left . Any distance leaves me feeling exhausted. I tried going into Tesco yesterday and resulted in a horrible seizure then I can't walk at all. Today I am so tired 😴
That sounds pretty horrible, I'm sorry. Hopefully there were people there to help you?
I don't have the typical foot dragging issue, but I can imagine how your shoes must suffer! At least you have a good excuse to go shoe shopping once in a while! Annoyingly my shoes seem to last for years and years so hubby wont let me buy anymore :D!
Hi I'm new here and trying to get my head around this dignose . A neurologist dignosed me while I was in hospital last week very unwell. But yes I totally sympathies with you. It's also my right leg . I also keep losing my Ballance with all my other physical conditions of 20 year's. I call my Los of balance playing with gravity an if u fall I say gravity won haha it's just my way if trying to cope an out some humour into the situation . Only thing I do on bad days like you had yesterday , is to just have a shower in the upwards direction on my legs ab back and make sure to hold each side of your bathtowel and dry upwards from your ankles while supporting yourself by keeping your back against the wall . This stimulates the muscles and opens the oxygen vessels for the fresh blood an oxygen to flow that will help with pain an lack of strength. I hope what helps me will help you and I wish you a wonderful day keep strong
I am in the same boat. I am often trying to save energy...but have yet to find anything to help. I do find that my mornings are better. After a full day of work i have more trouble moving.
I use 2 forearm crutches to move around. They do help. Im trying to avoid the use of my seat walker. I am way too young.
my tolerance is variable and I'm still dealing with all of this as many here are. sorry I'm not much help. Tired today. PT wore me out yesterday.
Thankyou, you too! I think keeping a sense of humour is essential too.
Physio says he can't help anymore as it makes me worse rather than better.
Unfortunately my arms get too tired with crutches or a stick too, getting fatigued like my legs. I keep trying though as so many people online talk about the use of a wheelchair being a bit of a slippery slope, but I just feel so much better after being in it...so it can't be wrong can it?
Hi again , I've only just been referred to neurophysio with a 4 month waiting list. I can only walk indoors on my own , I need assistance outside. Thought about arm crutches but also have a problem with right side arm weakness so not sure if they would help. I'm only 47 and trying to stay mobile as long as I can. My partner is also disabled so unable to push a wheelchair. I can't afford a motorised one and as the neurologists believe this to be reversible don't think I would get much help to get any funding. Last weeks visit to mainstream neurologist who is from Italy hasn't a clue about fnd , she actually said I was walking quite well , I honestly could have slapped her !
Ah yes, Ive wanted to throw a punch before now! It might still be worth considering going for funding such as pip if you are in the UK? If you are awarded some payments you just notify them when you are better. In the meanwhile it could fund the hire of an electric chair or scooter. My friend had it temporarily after breaking her leg very badly, and was immobile in a chair for eight months. They knew it was temporary but still awarded her funds to help in the meanwhile, it meant she could hire a scooter to get around.
I know how that feels. I tell the neurologists all my symptoms but when he sees me my arms and legs are able to move, I’m not slurring but he only sees me a few minutes but that’s the time that counts and is recorded in his medical chart that he sees no weakness no slurring and patient is able to walk, it’s no wonder why they don’t believe us.
Welcome to my world. It took 3 years to dienoise me with My FND condition . It was my local Stoke unit they told me and my son. My son help me and my dog too. But my family don't understand about it . So I have to get on with it.
I had two functional strokes and after two weeks diagnosed me with conversion disorder and said it was stress. I didn’t believe it so went to many other specialists and more tests and neurologist said functional neurological disorder where the brains software is malfunctioning. I accepted that answer because I know mine wasn’t caused by stress as I was laying down reading a book when it happened.
The longer I've been on this journey the more I realise that everything said by the specialists is just educated guesswork...Two consultants have independently told me that they just don't know enough about the brain yet. I think this explains to me clearly why explanations don't always make sense, and why different specialists can contradict each other in terms of theories and advice. My personal challenge has been trying to find someone to help that is open to trying to understand more, rather than being frustrated that they can't help and then giving up on me
It also drives me mad when they utter the word 'stress'... Its such an easy cop out as ANYTHING can and will be attributed to it as far as some docs are concerned ;)!
You want someone to understand what you are going through so bad especially since our tests show up normal, we don’t feel validated and feel like we have to work hard to convince our doctors and even our families how bad it really is for us. If there are more medical tests you want you have to fight for it. In the meantime get your physical therapy and psychiatric therapy because it will help some if not a lot.
I can relate to the waddling. Not a 'typical' FND gait, I don't think. In fact, it seems so untypical that I have struggled to accept my walking issues are FND related.
I hike the hip too when I get tired and my legs feel stiff.More recently it seems the nerves at the ankle (linked to hip strength?) are affected and my feet turn in slightly. If I sit and rest, I can go again. Like you, if I push myself I ache so badly later and even my voice gets hoarse if I overdo it.
I am having a gait assessment with a neuro physio at the end of the month and after a year of worrying, it cant come soon enough!
fingers crossed for a good appointment for you Mic67, it will be great for you re advice and moving forward. You'll have to let us know how you get on. And Ajastar I know what you mean re convincing family, I kind of get frustrated at hearing 'but you look so well!' aaaargh! 😆😈
I got to see a neurophysio in January and was half expecting to get a slapped wrist for using my chair so often, but surprisingly they have encouraged me to use it more in the house...the idea is to find my 'baseline' where I feel consistently well and retain power in my muscles for several days in a row, and then very very gradually add more little stands and walking trips, all the while keeping that 'well' feeling. Initially I felt much better not pushing myself to walk but am now having more poorly days than good ones again so perhaps the better days initially were just coincidence. Then interestingly what I thought was a completely unrelated issue of at first dry eyes, and now a dry mouth plus a few other new physical symptoms drove me back to the docs, and they are now investigating Sjogrens, the symptoms of which make interesting reading when you dig deeper to also look at things like neurological symptoms...
It will be interesting to see if yet another series of tests come back negative, but even the Doc has said it might now end up being a waiting game until something develops or deteriorates enough to show up on a test. Not that I want to pooh pooh all peoples diagnoses of FND, as I'm sure some are right, but I can't help but keep coming back to the fact that once upon a time poor people with migraines, schizophrenia and more recently certain forms of Ehlers Danlos were once dumped in the FND bucket too, before docs realised they were their own distinct illnesses. Sorry...I'll get off my soapbox now 😆 it just makes me wonder x
You're right about finding your baseline, my therapist pushed me to use a stepper and it’s been over a week and I’m still weak from it. When I go back we r going to have to take it slower. The therapist didn’t know about FND and the center doesn’t have a specific tailored program for it.
Yes keep an eye on that...I've been set back by well meaning therapists. I think with some people (including me) the fatigue behaves like ME/CFS, perhaps see if your therapist is more familiar with that?
Patty and Kazandlily . I wouldn't worry about feeling too young to use aids. I initially felt the same (mind you I suspect I'm probably older than you both). But now I think to heck with that, if it is going to help me conserve energy to do the things I actually consider more important or I want to do then I'm flippin' well using it.
I think positively of my walking stick, rollator, wheelchair and scooter now as things that mean I can do more, not less. Particularly as my health is deteriorating for other reasons. Ironically my 85 yr old MiL refuses to use anything except a stick and consequently her breathing is rubbish and she can barely walk a few hundred yards. So now she only gets out if someone else takes her in their car. Stubborn and cutting of her nose in my opinion!
I know what you mean. I have the chair...I just am fighting to go down that track.....but there are times like the other day I could not manage and had to but scoot down my stairs. When I get up off the floor, I also have to but scoot to furniture in order to stand. yea an immature pattern when I think about it. I have helped many children with disability learn to walk....i basically use my education on my self. oh my.....
Anyway, I can relate totally....I also get worse when i laugh. lol My PT and I have had that same conversation. oh well..laughter is so much better than crying. right?
It is what it is....we can only do what we can and take it one step at a time. My grandson was cute the other day...said. "grandma you don't walk too well. let me help. Ill get your crutch"
Hi kaz, I'm unsure about the resting part as lack of sleep doesn't help anyone but I hardly do anything much anymore but when I do try to do anything even visit my parents I have massive seizures, awful symptoms, pain and come home and partner put me to bed, two hours later awake and totally not with it. Maybe some people can rest then do more but it makes no difference to me, even the spasms come back and feet don't want to move. My life is just passing by and no improvement yet. Permanent resting and doing next to nothing is not an answer for me. Maybe others on here help you more. Best wishes Lisa-anne.
I'm sorry for you Lisa-anne, shame visiting my mother-in -law didnt have an effect on me...then I'd have an excuse not to go ;)!
I suppose what I'm trying to find out is if my walking issues are typical of fnd, as I don't seem to fit the typical patterns, but figured that maybe there is no 'typical' as websites and medical videos would have you believe is there for fnd, eg hoovers sign, dragging foot etc.
Heh heh like about the mother in law, I have read on one of the FND websites that if you don't walk properly you shouldn't keep walking like it otherwise you are reinforcing your brain signals to keep walking in that way, I drag one foot, or lift to high as always tripping over doorways, or get other foot twisting in. When I walk I try not to think about it but just do it and think and look at scenery, this sometimes works for short distance then tire and back to limping, dragging or stop. This could work for you as if you don't concentrate on walking your brain might just keep you walking in a good way. Good luck 😉 Lisa
Thankyou, yes will keep trying the distraction technique. I think I must be doing it wrong though, as the more I try to think about other things, the worse my walking gets, like information overload or something. I've also tried that old chestnut of walking backwards but I just fall over 😁!
My standing joke at work when My balance is bad is I've had one gin too many, but not everyone thinks I'm joking and gives me a strange sideways look.., hahaha!
Hi just to let you know you are not alone. This weekend I tried to do some normal every day tasks and a trip to a supermarket and oh boy am I suffering for it now. Seizures have kicked back in and I am shattered with a body that feels like lead ! Will need a whole day in bed to recover, it's so frustrating and disheartening and unless you have fnd there is no way anyone could imagine what it's like. Struggling to type this , hope tomorrow is better.
Hi Ailsaw, I feel like like that trying to walk one of my dogs a short distance, haven't tried for a while now as partner had to pull me home and was totally shattered and like you totally disheartening. A shop is a no no as noise, lights I become unable to walk, understand and go into spasms, my short dog walk was my goal. I hope your feeling better today and well done for keep trying. Hugs to you. 🤗🤗🤗🤗
I remember when I went to supermarket hoping to be normal I suddenly felt vibrations then the numbness and tingling on right side of body, then all of a sudden it felt very light and was losing feeling on my right side and I literally felt like I was half a person. Scared me the freak out.
I get those strange looks all the time! I have taken to singing and "dancing" wherever I go accompanied by fun outfits, that way they just chock it up to me being crazy. LOL
mine comes and goes, but seems to be coming more often and intensely lately. I had a massive episode when I got home last night, then after being on the couch for 4 hours, had to hike up everest (2 floors) to get to my bed. Gotta love townhomes and FND - great combo!
I'm not above using aids or assistance in walking or just surviving really. That ensures my and others safety, which I value over anything. Unfortunately, my forgetfulness gets in the way most of the time. Gotta carry the cane to be able to use it. At least chairs are a bit more in your face, so that you can't really forget it.
Hi, I didn't didn't have walking issues the first year just pain, then exhaustion on doing a lot the second year eg I was back in U.K. Still not diagnosed and pushing myself to go to interviews and go shopping. I used to get my fortnightly pay and after work go buy clothes, nice costume jewellery and go out with a friend at the weekend. Seems like a lifetime ago. Iv never been a crazy clothes shopper. I know what I want and where il probably get it and get in and out without trailing round, but I had to buy a wedding outfit a few months ago, went to one department store and couldn't even hold a hanger with a blouse on it and trying on clothes took over an hour as I have no power in my upper arms when I used to do a daily dumbbell workout so felt like I had ran a marathon in this changing room with 5 minute breaks between outfit.
I was given a walking stick recently and I have thought about that whole progression from nothing to wheelchair and I admit I'm vain, when I don't even bother with makeup anymore, the guys might not get this, but I lived in a hot country so minimum was tinted moisturiser and waterproof mascara but no one knows me here so I got out sans makeup, glasses and beanie on. I tried recently to put mascara on and felt like I'd just done a 5kg dumbbell workout, ridiculous.
Anyway getting back to the aids. Because my neurophysio is FND trained and really nice I feel positive with her and instead of feeling sorry for myself il makes jokes about the fact il never be a tightrope walker, can't stand one foot in front of other, couldn't coordinate walking with a walking stick which she gave me to take home but I tried it a few times. Problem is I'm a really fast walker, when I got married I ran down the isle with my bro, Also fast walker, giving me away to see my mother in law filming us and my mother silently yelling and waving slow down. So our video must look really stupid as we stopped half way and slowed down, never saw the video. But I still feel the same when I'm out. I know I get tired quickly so I keep tasks short and walk fast to get home so I can die on the floor for 1/2 hour til strength comes back so walking stick didn't work for me as I couldn't move it fast enough or coordinate it with the right limb and then I had a bad weak day where my arms couldn't tolerate holding it etc and I wanted to just drop in the street so I gave it up. Shame because it did help my balance. I can look like a drunk person in the queue at the supermarket staggering while stationary.
And I can't use crutches as my arms are weaker than my legs. So the next step would be the roller thingy. Although I'm vain and don't want to go there yet but I think it would be great for sit down rests and I'm a big no for a wheelchair.
I have a lot of admiration for those of you who have moved on and are getting about with wheelchairs and other devices, I just feel I'm too young and maybe because I spent my life working with people in wheelchairs? Who knows. Maybe I'm just an idiot.
I too have a weak right side so get a dragging right leg. There is no consistency to it whatsoever but I feel when iv been out too long all limbs going and I mildly panic and aim for home asap.
Then when I get home, will feed pets, sit and rest until I can feel sensation return then make a very simple dinner and veg on couch.
Iv in the past told myself exercise and push against this and it's made me so much worse. Iv had a lot of injuries over the years from jobs iv done and always got back to health with exercise and just working again so for me this makes no sense.
Iv seen and experienced some traumatic events over my life and if this is psychological then this wouldn't have given me FND. When my car crashed I'm a spinal nurse so checked myself and the driver and got out to help the other car people but a few steps out and neck was saying don't move so I sat down on ground. It was broken.
I was even joking with paramedics as I knew some and silently excited when tanned muscly firefighters came to put me on a spinal board and neck collar as there was wait for ambulances the were so many involved. I was more than happy on a nice sunny afternoon to wait and look at tanned rippling biceps in tight shirts than think about my injuries. Even after when I got to hospital I was telling weeping friends, I'm fine, il have an X-ray and go home and be a bit sore. It was 2 hours in I was getting neuropathic pain and saying - hey any chance iv broken some fingers I'm getting that feeling in my right hand? That was the start of my neuropathic pain.
That's why when me and Dan were discussing the brain stuff and how the base of you brain at the top of your neck which controls all your breathing, heart, etc it basically controls just about everything in your body including your organs and nerves and that's why I believe for me this is definitely physical as iv had worse injuries which have healed but this neck injury within an hour was giving me FND symptoms and I believe it comes from the brain as I was positive even 12 weeks later when my friends took me out for lunch and I was still in a neck collar and my noodle salad was not getting from huge plate to my mouth as I couldn't bend to see the plate. We were all laughing our asses off, I was hungry but never mind 🙁 Anyway I digress a bit from this topic but I'm trying to keep going without aids as I don't have that arm strength.
I could do without seeing my plate for a bit...would be a good way for me to diet! Sitting on my posterior doesn't do a lot for toning my abs!
I wish I could have some of your speed...I timed myself walking over a 20metre path at work recently and I clocked just under 4 minutes lol 😁! if you mixed the two of us together we'd even each other out!
Hi there reading all these replies with great interest. After struggling with FND these past 2 or so years.....like many on here gone from sporty last 40s sooty fit active lady to using a 'collapsable 'very light weight waking stick( amazing) at the end of the day when tired and walking is slower and more n more difficult ...
Anyway, after reading about you reminds me of myself as I was such s fast walker too !! ....until 5 days Neuro Physio last year taught me about 'pacing' and boom then bust!!!
It was a very tough lesson and I still don't get it right at times...but it means I can do more each day by planning and 'pacing' my walking....taking breaks 'before' I think I need too ...thank the lord for all the coffee shops in Brighton these days!!!.....I take my collapsable walking stick in bag always...fits in small back pack easily..just in case....this helps give me more confidence and feel less anxious being out alone.
Anyway hope this helps a little, even though we all have different types of gait disorders to challenge us. Take care Lucy
Hi Lucy! Yup I second how fab and convienient those little folding walking sticks are, and you can them in some not so old and frumpy designs ;)! X
Yes iv thought of that but it would have to fit in handbag which it wouldn't and I try not to carry anything. Il use a small rucksack to go to shops for heavy items as arms can't tolerate weight. I too miss exercising and having some muscle definition. Sitting all day not good. People have suggested yoga and Thai chi . The problem is my arms. Reaching for an item out of a high cupboard is an excerise
I was in tears again last night as this time last year I was enjoying my weekly Zumba class and had met a lot of nice people , now a set of stairs is equal to Mount Everest and walking is difficult and sometimes painful 😖 perhaps when I recover I will just have to settle for yoga - trying to stay positive but as you will all know not an easy task !
I totally understand your tears 😭 2 years ago I went to see my 1 great friend who looks after her mum 24/7 as she had a stroke and can't be left on her own as she has the mind of a child, now I can't just get in the car and drive to see her once a fortnight as all social services will give her. 4 hours off a fortnight. I've seen her twice in last 2 years and miss her so much, I don't contact her as just makes me cry and then I upset her, now my dad has lost his license as he is diabetic I don't see parents either. Sometimes it's all too much and just sit and sob, Magic stick please for all of us. Xxxxxxxx
Lisa anne l know how you must feel. My Mother totally depended on me and l had to judge how long l would be gone if l went to the store or doctor. My mother passed away last month. l miss my Mom and every morning l have my cry.
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Am so sorry for your loss, I also worry as my parents are in their 80s and not in great health and I think I've already lost over 2 years with them now, I'm travel sick which is why I always drove. To get out in car makes me so ill, I've got travel bands but nothing works. I've never lost anyone close and can't even imagine how you feel, my greatest sympathies to you and a big huge 🤗 coming your way, sorry took so long to answer, I do struggle with technology and missed your reply. Kindest regards Lisa-anne
Dear Kaz, it all sounds all so familiar to how I started my FND movement problems and even today I have not improved my control over my body -my muscles have a mind of their own, lol! All I have learned over the years is to adapt my self management of day to day tasks.
Firstly I will say something that my now retired wise GP told me, "Even if the Neurologist has got the diagnosis wrong, and there is so much of the brain not understood currently, it is still a brain condition affecting movement and the NHS only has one possible treatment being offered for those sort of symptoms- Multidisciplinary Therapies".
However once you have had those Therapies, you are very much on your own in my experience!
The Therapies besides explaining further what the medical profession believe the FND condition is and what needs to be fixed to improve or cure the symptoms, boils down to Self Management of your condition and Pacing. Pretty much all the other major Neurological Conditions are recommended to do this, with the exception that the other Neurological Conditions like Parkinson's, MS etc get a big budget, full medical/mental support and several drug regimes, unlike FND sufferers.
Secondly, yes to a certain extent managing daily life as best you can and pacing is the key and yes, easier said than done? I am terrible at both of those, but as a veteran of FND now I am starting to see some patterns to when my walking fails and when I might get a complete brain fog period etc. Obviously we are all different and especially our symptoms can be very different in the FND community, so what works for one does not necessarily work of someone else. That said, I do believe there is a physical link problem not a mental problem as to why muscles get misinformation overload from the brain and that in turn causes loss of walking ability. Muscles and joints need time to sift through and process the movement information sent from the brain, pushing yourself when they are not ready is what causes the fail-safe protection mode to kick in, physically holding you back from moving.
Yet ironically, I find resting for too long means that you shutdown the muscle information processing prematurely they switch modes, this causes a kind of reset in the brain and the whole drawn out system has to start all over again from scratch! There are always times when nothing works, but you have to say to yourself, oh well it will all be okay again - this is not a permanent state, else you will get so angry and frustrated you will throw more adrenaline into the mix and confuse the brain totally!
So to recap, try to do tasks little and often, try and separate mental and physical tasks - I usually have a selection of 3 tasks a day (1 mental, 1 physical, 1 bit of both) so I can toggle between them as my body allows (if indeed it allows anything that day). Rest when you need to, but try and limit to a shorter periods where possible say 15-30 mins max. If muscles start to go while in the middle of a walk or task, try shifting your weight from one foot to the next, stretching out tight muscles or if at home rest with use of ice packs if none of that helps. Focusing on what went wrong will make things much worse, accept it did and move on, even watching an action movie will make things much worse (believe me I've noticed), the human mind is complex and needs reassurance that things can happen correctly and things can go well, so focus on the tiny achievements no matter how basic! Remember be kind to yourself, it takes the coordinated action of over 200 muscles in the human body just to take one normal step forward... you are an extremely complex being, no wonder walking is hardwork!
Hi Kaz,I had a stroke 2 years ago and after a 10 day stay in hospital I was diagnosed with FND I left with weak left side and told to use a website to understand what it was all about and to this day I still dont understand it all when I have to walk I waddle then when I get tired I drag my foot some people think I'm drunk as my speech gets slurred and I look and sound drunk I get embarrassed when this happens and people are staring,I've seen to Neurological specialists and both have said definitely Fnd and theres no cure and told me I'll probably never work again it's so frustrating.
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FND with muscle wasting
Hi from a guy with FND
7 years with FND, getting worst.. 
Probable FND, I disagree with diagnosis 
