Hi! So I have had a long journey and I have successfully managed to decrease my FND a lot compared to what I started with (don’t even want to remember my worst 😖). I still have some lingering symptoms that don’t want to go away (but I’m hoping I can manage that as well).
Has any one managed to bring it down to almost nothing or nothing at all? If so, how easy or difficult was it to go back to your normal lives (if you could) by going to work or studying etc?
Thanks! 
Well done you. I'm just over 2 years on and symptoms are better but not quite there yet. I'm hoping another 12 months and I'll be as good as I can be. There's always the hope I'll be symptom free.
This condition is so slow! But definitely something that improves if you work really hard on it. I wish you luck and strength as well!
Shali queen I love this question I am currently making a full blown documentry about this along side sheffield university I was an athlete a runner a boxer now I am this i have donated my brain and body to the science departments so when my time comes we can all have a good look lol if you are interested in following the story my face book page is (tal taylor) and my cover photo is a field with ref to organ donation behind it, this has changed my life so please take a look blessings mat
Hiya ... this is fascinating. Just took a peep hope ok. May I ask what symptoms you experience now?
I have improved over last 5 years .....still use my walking stick at times.... will need wheelchair assistance to fly to Spain on holiday .... but it’s still a big part of my everyday life too.
The sick is a must for me at all times I still use a buddy buggy my seizures attack in my sleep all my teeth have been removed I was biting chunks out of mself I had the worst day ever yesterday and caught some on camera the this may sound strange but I can no longer drink water over the past year its got so much worse its complete madness I am so ill after just a couple of glasses it's been put down to copper not getting processed now in my blood I always have this awful metal taste in my mouth now my vision is failing in my left eye and I still probably run a marathon a week with the the seizures although the explanation is more stalls than seizures from the brain I push hard everyday and adapted a training program from the Ukraine where in certain cases massive amounts of endurance are placed on the brain trust me its been crazy but for the past 3yrs I have pushed so hard with rucksacks full of rocks I am currently working with a sack that weighs in at over 10 stone what happens is under stress of endurance there are surges of unimaginable strength and raw adrenaline it's worth following my story because my pain is your pain blessibgs tal
I had a look at your documentary video. I want to commend you for the willpower. It’s inspiring to see that you worked so hard and decided to make a documentary to show people. Please keep at it. 👍🏻 and stay strong.
Hey Lucy I had a massive problem with getting lost and confused and I mean very lost so I invested in a service dog poppy the short haired collie she fetches post watches the bath and when the word home is used nothing stops her getting me back to my door she also wakes me up while having seizures she is saving my life
Wow that’s great pleased helps with a few things and good company too no doubt. I got a Yorkshire terrier 6 months ago... as I found my limp from the loss of control of my left leg..worse when it's tired.... was less so when walked a friends dog it helps me get out even on the bad days.
I guess as he distracts me my walking improves a bit ... wish I got him years ago now.
Interesting to read how sporty and fit you were pre NEAD / FND.... me too ... seems like that was a different life now ...
That’s wonderful to hear that you have improved your symptoms! Please share your treatment program with the rest of us. We all need tips 😀 and I feel hopeful.
My symptoms include: tremoring all over body (pretty much everything), pain (developed fibromyalgia— this condition is connected to FND by the way), emotional outbursts, higher stress levels would cause drop attacks, occasional inability to move limbs (or it feels really hard to move) and hypersensitivity to stimuli (like fear for example). When I first started I did physiotherapy and went to see a psychologist. I think it’s important to find the right psychologist (one who can help you see things clearer about your own behaviour). Being able to assess, control and understand my feelings have helped me show what I need in order to feel content. This I think, helped to reduce the emotional imbalances I have with FND. Now that I feel more secure about what I feel and why I feel things, when I do get emotional for no reason I know it’s not me (well it’s me but it’s for no reason). So that’s helped. I increased exercising to increase my stamina but that was hard to do initially. So exercise is something that was hard for me to do for the most part until my symptoms decreased. And I started monitoring the stress levels I have with things. I tend to over tax myself for no reason. My stress levels were always a huge contributor to elevate my condition so I made sure I stayed stress free for a bit and when back to attempting my normal life and I am again taking a break so that I can reduce it down (like a reset for stimuli on my body). So what I am doing now is basically go into almost a normal environment (accepting the challenges) until my health plateaus, and then relaxing again to reset myself if that makes sense. That seems to be helping me at least. And now that I’m doing that exercising has been a lot easier for me. But maybe resetting and then going back and then resetting it helping me to relearn how to live normal life maybe? My current state is that I usually have one tiny symptom everyday (maybe pain briefly or hand let’s go if things etc). I don’t have major episodes anymore (as long as no emotional stimuli). And my stamina has increased significantly to last doing things for longer amount of time (but I always change things up to be on safe side). Here and there bad symptoms that are a little more do come but not unless there is a reason 👍🏻. I hope this helps.
Please, please look into LDN. I really think it could help you!!! I haven't done anything with a psychologist, but I also tend to over stress, which will definitely trigger my symptoms. I started daily meditation, and that helps with stress for me. I also have a huge brain/body connection. I think I always have, and FDN just made things go haywire.
I also have tried naturopathy! I forgot to mention. And I’ll look into LDN! But if you have a brain body connection I suggest you to look into a book by Elaine Aaron about highly sensitive people. Maybe you are one too. I think people who are more emotional and sensitive are more susceptible to FND (hence you get more stress).
I'll definitely look into that book. Anything that helps, right? My sister has had some good luck with the AIP diet (she has a ton of other bizarre issues). My NP wants me to start that, and now that I know my job a little better, I might. I am already gluten/dairy free because I'm allergic to both. I've heard both of those intolerances tend to be looped in with all of this. No idea why.
Thanks, Shali_queen for the information about the book by Elaine Aaron, I've just ordered a used copy online from Abe Books UK for £3.09 including postage! Will let you know what I think. It's had loads of very positive reviews, so really looking forward to reading it.
Best of luck in all your efforts! X
Yes please do! I have spoken to some other people with FND and have also heard that their more emotional than others in nature. So maybe it helps!
I have! I initially worked hard in PT/OT for 3 months. I still use a lot of those techniques today. Probably the most helpful was LDN (low dose naltrexone). Along with LDN, I was diagnosed with fibro, and I'm not sure what symptoms are for which. But LDN has helped reduce all of my symptoms drastically. In the USA I couldn't get a doctor to prescribe it. So out of desperation, I made an appointment with a natrualpath. It was initially expensive, but sooo worth it. I'll never look back. Before LDN, I was working from home with great difficulty. I needed 10 hours a night minimum to function, and at least one coma day on the weekend where I didn't leave bed at all. After work, I would usually drag myself to the couch. I also couldn't drive, because I got 5-10 pseudo seizures a day. After LDN, I am back in the office, working full time. I drive now, except for at night. I can do 1 chore a day when I get home from working. I only need 8 hours sleep, and a nap on the weekends instead of an entire coma day. And my pseudo seizures are only 1-2 a day (if at all). I've reduced them to a quick eye roll, and I recover from them much faster I could go on and on. It has changed my life.
How does LDN treat FND? I thought this primarily helped biological disorders like autoimmune conditions. Are you sure you don't have an undiagnosed condition instead of FND?
I have fibromyalgia, as well as FND. The LDN was prescribed for the fibro. But because it works for chronic pain, it has also made my FND almost non-existent. It reduced all the inflammation in my body, which then reduced the FND as well. I only get ticks when I'm very tired now. They don't happen nearly as much as before. I had mentioned taking LDN for FND when I first started it on this board. In addition to biological disorders, LDN reduces anxiety. So I guess for me the reduction in inflammation/pain/anxiety also caused a reduction in symptoms.
Has anyone experienced FND/CD symptoms getting worse during autumn/winter time? 
any one else with FND feel like their bones are crumbling?
Struggling to accept FND diagnosis. 
