I’m new to this group, only found it last night. I suddenly developed a problem with my left leg in March 2018 & have over the last 3 years had all the tests, attended foot specialists, bought orthotics etc. etc. & am physically & mentally exhausted.
I would love some tips on how you try to get on with your lives & what you tell people who ask because I really don’t know what to say to people anymore & this anxiety is making my symptoms worse.
Thanks so much for reading this & any tips would be really appreciated 😆
Written by
Misunderstood2021
To view profiles and participate in discussions please or .
Hi and welcome, i can relate to this as most of my pain ect is all in my left side. I sometimes find it hard to walk as left leg and mostly foot are in pain or dont seem to work properly, unfortunately like urself no1 seems to know wat it is as everything comes bk normal, FND is such a horrible disorder i hope u get some answers.Love an light😁
Thank you so much for your reply. Just to know someone else understands means so much. I was feeling really down after just coming home after barely getting through work & the fact that someone else knows what it’s like was lovely.Hopefully there will be a breakthrough with this horrible illness soon 😊
I also have trouble down left side, I have to mentally concentrate to walk, and use my hands, if anyone asks, which they rarely do, I say it's a software problem, brain doesn't communicate with your body. People are often surprised, because I am slow in speech, they think I'm not on the ball. Mostly people are kind. I find it helpful to find positives in my life. I call it my new normal, neurologist gave me the label, FND until further symptoms. Take one wobbly step at a time. Medical professionals take their time. Take care.
Thank you. I have been avoiding the question for so long when people ask, I just shrug it off. I find the harder I concentrate on walking the worse it gets, so frustrating.I will try dwell on the positive because I know compared to a lot of people my fnd is relatively mild with only the one symptom.
Hi, I'm new to this too. Adapting not stopping doing things is good.Took me ages to adjust to powerchair outdoors, but i manage indoors. It is exhausting mentally,but when you've found another way to do the same thing you feel so good. Best tip don't worry what other people say or do, it's your life. After fnd physio, I learn't if I waddled like a penguin, from leg to leg I could stop my tremors. People do stare sometimes but I know if I do that I won't fall over. Result.
Thanks so much for your advice. I really appreciate it. I am beginning to be more open with people when they ask about my limp & that definitely helps me mentally.Onward & upwards 😆
I drag my left leg and some days are worse than others, I use a stick at work mostly for the stairs unless I’m having a really bad day which fortunately as a vet nurse the team are lovely when I’m struggling and employed me knowing my limitations which makes them even more special. Doing anything where I need to walk further than around the garden I use my walker I couldn’t get round the shops without it I’ve found it super helpful I highly recommend one. The fold down ones that fold up like a pushchair are the easiest to transport. I used to be able to go down shops from home with just my stick but now I need the walker. When people ask I just say my legs are ignoring me when I ask them to move, I say it’s my audition move for the hunch back of notredamn when it’s really dragging but that’s just how I work I find laughter a brilliant cure. I hope you find something that works for you my neuro physio I saw said the aids are there to help you keep moving when it’s difficult and that’s really important if you can still get out even a short distance it helps so much.
Thank you Susie for your lovely message. I really appreciate you taking the time to reply. I am still walking without an aide even though I feel it’s getting harder. I hope we can get some relief from this exhausting illness soon.Have a lovely weekend 😊
Hi I have lived with Motor FND for 13 yrs now i.e walking issues with both legs/back part-time wheelchair user. I have done all the Multi-Disciplinary therapies and seen many a Medical Professional in those years.
I think understanding that FND is a sort of `short circuit' problem in the brain where normal communication to the body is confused and that certain things in your daily life will trigger more severe reactions is key.
When it comes to Family/Friends: best to limit your comments to things they probably have experienced and can relate too, like fatigue issues, forgetfulness when stressed that kind of thing and they will realise that your walking problems are beyond your conscious control and more systemic. Also if you need help with something, be specific about the task, then they will feel good about being supportive and you get the benefit - rather than waiting for them to ask or feeling embarrassed to ask. If it all goes wrong, try to laugh not cry or be angry, it is easier on you and indeed on them in those kind of awkward situations. Everyone makes mistakes and everyone is human after all?
When it comes to other general people: I simply say `it is a brain condition that affects my muscle coordination, bit like Multiple Sclerosis' - again using an example that more people will be aware of helps.
When it comes to Medical Professionals: unless they are FND trained you will never get them to hear your issues properly or understand your situation - they neither have the time or the interest in that brief consult. Do not worry about it, sadly although FND is quite a common condition, the medical needs of the condition are just not widely known or supported in any Country!
However, do always stress to any medical professional that this is a genuine Neurological condition with actual physical changes in the brain - your symptoms cannot be dismissed as just `all in the mind', it is not under your conscious control, only limiting the severity of symptoms might be!
There is a brilliant website by Professor Jon Stone neurosymptoms.org which can help you understand more about FND and how to cope with FND life.
Always a big plus is learning what are bad and good triggers for you, pacing yourself (physically, mentally or emotionally) to stay at a medium level, thus preventing unwanted `Fight, Freeze & Fight' survival brain circuits kicking in and overloading your already struggling signals/feedback. Try not to overstress yourself, no one else will suffer except for you at the end of the day -other people can wait!
Finally and crucially accept that you will have to adapt your methods/timings for doing things, but that you will eventually reach your goals. The trick is to be mindful of what you are doing but not to dwell on the issues/activity too long - allow your Automatic Nervous system to take the major strain with the minimal of brain guidance!
I've been dragging my left side behind me for several years now. I do find it helps not to focus on the movement and to try to distract the brain, so I play a song with a strong beat in my head. I use a walking pole on good days and a walker if I want to do more in a day. If people ask, I say I have a brain condition. Nobody knows what FND is - I didn't before I was diagnosed - so there's no point saying that. Hopefully one day it will be as well known as MS or Parkinson's.
Thank you so much for your encouraging message. I still struggle to accept the diagnosis & I know that until I do that things aren’t going to change for me. This group has really helped.Have a good week
You're welcome. I wouldn't worry too much about accepting the diagnosis. I think doctors make too much of that. You know that there's something wrong and if you listen to your body, you can probably figure out what it needs. There's a really good website called FND Recovery where the lady did just that. All the best.
I’ve read a few of your replies that talk a lot about coping. Don’t give up on getting over this-there are people who can help. After ten years of terrible torticollis, weird facial movement, Botox, brain surgery and going on disability from a job I loved, FND was finally mentioned. I was sent to a psychologist who specializes in FND. She came up with a plan to reprogram my brain. I found out that simply touching my tongue back and forth to the roof of my mouth makes my face stop moving and moving my head back and forth helps my neck. I’m distracting my brain from the abnormal movement and growing new neural pathways that are normal. In a way, repairing the software that was corrupted. There should be some specialist that could figure out what you could do. Perhaps, find some way that makes you unable to use you good leg so that you brain has to find a way to use the leg that’s affected. This technique has been proven to work with stroke patients. There are intensive programs that are successful with FND. Do some research. There are only a few universities that have programs and one specialist in particular. Let me see what I can find and I’ll write back.
Dr. Kathryn LaFavor at University of Kentucky, Louisville has a multi-disciplinary program for FND, also Emory in Atlanta Georgia and I’m sure more places. You have to persevere until you find someone who knows what they are doing. Finding out that the brain has neuroplasticity is a relatively new finding in healthcare as is FND. Watch the TED talk by Dr. Caroline Leaf to learn more about neuroplasticity. It’s not about FND, but it made me hopeful that I can get better.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Funcational Gait Disorder and new problems
Vision problems
Lost the ability to walk
Antidepressants/other medications for FND. Can they improve movement and coordination problems? 
Functional Problem vs Psychological Problem
