Hi everyone! I was recently diagnosed with FND after being in pain for eight years following an accident whilst trekking. My mobility is very impaired and I struggle just going a few metres now. I am awaiting inpatient treatment for FND and was wondering if there’s anybody, or if anybody knows of anybody who has actually been cured of FND or at least had the pain significantly reduced? My problem is that my body responds to every movement I make as pain. I can’t even make myself a cup of tea now. The only thing I can do really is talk and sometimes I can’t even do that. I started a podcast recently to try and keep myself positive and have some connection with the outside world but I am struggling. I guess I’m looking for a little hope. Best wishes to you all, Lucy
Looking for hope : Hi everyone! I was... - Functional Neurol...
Looking for hope
Hello I have listened to your podcast it is great. I have had fnd and was finally diagnosed in 2005 was misdiagnosed and put on many meds for epilepsy, Parkinson’s, ms and others Botox injections in my neck muscles a surgery on my neck so I wouldn’t be paralyzed from the waist down I kind of gave up on the doctors after all that and stopped going finally the flares of symptoms and pain and mobility started to slow down they stopped and would hit me sometimes for a week sometimes a month sometimes a few days then I went a few years without and thought I was cured then it hit again just a few days here and there my heart sank. And most recently I started back up with a vengeance and a few new symptoms that was in April of this year and still going strong been stuck in the house pretty much since then. I went to a new neurologist the beginning of this month and she prescribed physical therapy counseling that I can’t afford so that is part of my story it can get better everyone is different this disease has a mind of it’s own shows up when it wants for as long as it wants. I don’t know if that helps that’s just my story. I take Nortriptyline for pain which seems to help somedays like yesterday and today have had some pretty bad breakthrough pain but it hasn’t been everyday since I started it so to me that is helping. I also have a wheelchair that I have used twice with my husband pushing me around the store just to window shop because I was going crazy in the house it was better than nothing. Sorry this was so long not even sure I helped just want you to know I get it and am also wishing hoping and praying for a cure as well or at least another remission would be great and I know at least the latter can happen just not sure when this time. You can message me anytime if you just want to chat
Hi thank you so much for replying and for your kind words. It’s so nice to hear that you liked my podcast. I’ve been doing it for a month now and it’s nice to have something to create. I’m currently working on episode eight and hope it will be out tomorrow 
I’m so sorry to hear about your health journey . I hope things can get better for you so much. It’s good to hear that you can get out of the house if only very occasionally. I hope to be able to do that too someday, currently I only am able to leave the house for medical appointments. I totally get that whole being stuck in the house, And feeling trapped. I feeling like I’m going mad. it is so important to have a change of scenery, just changing room for me now feels like a big deal, which is crazy. It’s really great to have people to talk to who understand. Thank you again for your message. Feel free to message me too for a chat anytime. Best wishes, Lucy
Hi Lucy. 🤗🤗🤗🤗
You poor lass, I do sympathise with you.
Lucy I know it's so very hard trust me, I know only to well. But it is so extremely inportant that you Forse your body to desensitise from pain and how you do that is you very gently treat it with compassion and love even though its giving you a hard time, but just like it's not your fault in any shape or form that you have this horrible condition, urs not your body's fault its not able to recive the signals being sent to it.
So if you start giving yourself some time out to let your brain calm down and not be multi-tasking thinking, then you will be able to slow your speach down and have a conversation in calmness rather then through anxiety and stress.
This is what I discovered when doing the research Into this awful condition.
There is lots of very simple easy exercises that physio therapist and consultants are strongly recommening to keep the physical function of the body going for anyone with this condition.
You first go to YouTube and search chair exercises. Then another link you can try is this one here. Even people aged 90 odd with lots of physical health problems are able to do it.
The other things to desensitise your body from pain is to use a warm water bottle inside a very soft fabric and place it on your lap an slide from your finger tips to your elbows up a 'down the warm hot water bottle. It's better than the heat pad for this because the waves of the water is actually massaging your legs and arms the very same time. You can also place it inside a soft pillow case and gently let it slide down your back in between your shoulder blades and down your back. Also Place it against your base of your neck and end of your spine.
You can then place it at the back of your calfs and slide it up to your back of the knees.
Same with your ankles slide it from your ankle across the top your foot to your toes. Place it under the arch of your foot an just let your foot turn side to side while placing very light pressure on it.
As to your speech. Here is a funny but very effective exercise. You go to a mirror and place a clean pencil in between your teeth an look into the mirror an visualise yourself as a little pup with a bone bigger then it in its mouth as you smile lookin on the mirror, this helps not only your happy indorohes to be released but also relax every muscle in your face and ears as well as your eyes once your smiling at the mirror or laughing at the funny side of having a pencil inbeteen your Teath. 🤣🤣🤣🤣 Next exercises is to look into the mirror at your mouth as you gently open your Jaws and mouth as you say A'E'I'O'U
This will ease pain and stretch your tired muscles and vocal cords. But make sure you speek very very slow. Like say one word then count to 3 in your mind then say the other word. Also listen to some pain and meditation guided imagery on you tube of vacation meditation or jason stephenson or the relax me on line. Any of them an so much more will help you. Try to get out into the open air, close your mouth. Part your lips. Breath in only with your nose. Hold for the count of 3 with your eyes gently closed. Then after 3 sigh out technion pain fear and discomfort out through parted lips. Next do it again but see stail oxygen in grey leaving your body as your nose breaths in the white positive healing into your heart lungs and body
Please let me know how you get on and I wish you wellness happiness peace an good health dear friend. Sending you soft healing hugs with comfort and light 😊🙏😇🤗🤗🤗
Hi thank you so much for your message. I will definitely try these exercises. It’s really kind of you to take the time of messaging me with the instructions and links. I use three boiling hot hot water bottles all the time mostly on my back so I’ll be easy for me to try those exercises straight away. I also spend a lot of time in scalding hot baths which helps very slightly to relax my muscles. Of course with this and the hot water bottles my skin is pretty angry. But never mind. I will give the exercises a go and let you know how I get on. I have tried meditation and mindfulness several times in the past but was thinking that I would try it again so hopefully this time it will make a difference. Thanks again 😊 Best wishes, Lucy
Hi lass 🤗🤗 your very welcome. Please try not have your bath water scalding or to hot because it will actually damage not only your skin but also dehydrate your muscles. Warm water close to hot but not ver hot is the best temperature to use but lukewarm shower water after it to close your pores and also cool any inflammation going on anyway too. But make sure you wash shower and dry yourself in a upwards position so that your assisting your oxygen an blood supply to pump and circulate properly in your body to eliminate pains tension and spasms in the body but also to restore fresh energy to your muscular system.
7/10 people with our types of condition all have muscles skaletoes and this was shower and dry in upwards motion is just brilliant for it.
I hope your weekend is going well and your going to have a wonderful new week ahead.
Blessings always. Be well and keep strong 😇🙏👼💐🤗
Hi there! I’m still in the two year process of my neurologist telling me he believes I have FND, but still doing more tests so take what I say with a grain of salt. I was very sick and miserable with a lot of neurological issues. I swear by the KETO diet and low THC highCBD I’m not 100% but I am WAY better, i Can work, drive etc and I’m even a state champion triathlete, I compete in cycling, running competitions and often win first in my age group.
If you read about keto it is very supportive of brain health, and reduce inflammation ( inflammation is the root cause of all disease)
I got off keto once for a month and all my symptoms starting coming back stronger and I was miserable!
I follow a similar diet and I'm a firm believer in it. I follow Whole30 and it has reduced my inflammation significantly.
Hi thank you for your message. I tried the ketogenic diet once as a naturopath I saw tell me about it but he put me on loads of different diets one after another so by the time I got to ketogenic I was disillusioned by the whole thing. I will definitely look into it and maybe try it again. I did try the oil once but I didn’t do anything but make me feel slightly nauseated. I tried the real stuff as well but I had a very bad neurological reaction to it.
Congratulations on being a state champion! So amazing. It’s really inspiring! I really hope that one day I can do sports again. Before I was injured I was at university and played hockey and then before that I rowed crew for my university. I miss that life so much. I did sports my whole childhood - and I really hope for the rest of my life too! Starting really soon ☺️ Best wishes, Lucy
Hi Lucy,
I am so sorry you are struggling. I was diagnosed with FND last May. At the time I wasn't working, and a hard time doing anything, including feeding and dressing myself. I couldn't talk well because of brain fog and I was ticky constantly. It was very frustrating and disheartening. I was extremely depressed.
Fast forward to now, and I'm doing much, much better. I am back to work, in the office full time as a QA Test Lead Coordinator (which is a very demanding job). I also can drive again (except for at night). I would say I'm 80% better. The ticks are still there and I still struggle, but I can function now.
This initially took about 9 weeks of PT/OT 3 times a week. I also started looking into Buddhism, which personally helped me a lot. It was an extremely difficult time in my life, but Buddhism helped me focus on what I had to be grateful for. I also learned how to meditate and I find that extremely helpful.
Honestly, what helped the most besides PT/OT was LDN (low dose naltrexone). I had to go to a naturalpath to get it, since no one would prescribe it to me. It really helped, probably more than anything else. I'm also a big proponent of medical marijuana and CBD. I have been where you're at. Honestly, last year was so bad there were a few times I just wanted to end it all. I felt very hopeless. But I don't anymore. I believe that you will get better too. You just need to find the tools that will work for you.
Love Drea
Hi Drea, Thank you so much for your kind message. I’m so glad to hear that things are going better for you now. Your story is really inspiring and I’m so grateful you shared it with me. Currently I am awaiting inpatient treatment but I haven’t been given confirmation yet as to where and when and the waiting is not fun. I have tried physiotherapy many times but it actually got me worse but that seems to be because it was the wrong kind of physiotherapy and I need someone who understands neurological physio. I’m really excited to try physio with someone who is a specialist in FND and Neurological symptoms. When I saw these physios I didn’t know that I had FND which was a shame but hopefully next time it will work 😊 I have tried marijuana Perfect some reason I had a very bad neurological reaction to it and experienced increased pain and intense spasms and twitches etc. As you can imagine this put me off somewhat . I’ve not heard of LDN and I will definitely look into it. I am really trying to stay hopeful and positive. Starting my podcast has helped me as it gives me something to do from bed and it’s great to be able to create something and have some contact with the outside world. Thanks again for your encouraging words, it really means a lot. Best wishes, Lucy
Hi Lucy,
Having the proper PT/OT definitely makes a huge difference. I was very, very fortunate to work with an OT who was familiar with FND. She had never had an FND patient before, but she knew which techniques to focus on. A lot of those techniques I still use today. A big part of the PT/OT was learning how to 're-wire' my signals. I can at times now even mentally say "STOP!" and the tick will stop! It's too bad about the marijuana. it's very individualized, and some strains are great, some not so great. The CBD has never given me a bad reaction.
The other thing I forgot to mention. Have you had your vitamin levels checked? My FND was triggered by very low B12, Folate, and Vitamin D. Once those levels were better, my symptoms improved a lot. My doctor told me you can't take too much B12 or Folate, so it may be worth looking into.
The one trick I still use almost all the time when I want to focus is I have binaural beats going in headphones. My OT taught me this. That way if my brain "skips" a thought, it can get right back on track. I usually have music playing over it. No one at work knows, because it just looks like headphones. I also discovered for me, that I do much better with computer glasses on. This seems to "reduce" inputs for me, thus less ticks. I'm sure you'll find things that work with your PT/OT as well. I'm looking forward to checking out your podcast. Keep your chin up. Waiting is sometimes the hardest part
Drea
Hi Drea,
Sorry for not replying sooner. Thank you for your reply. I have got the LDM and I’m taking it nightly starting at 0.7 5MG and have increased after a few days to 1MG. What sort of dose did you manage to take-if it’s okay that I ask? Do you remember how long it took to work for you? Can I also ask about your OT, is there any chance you can let me know their contact details? I would also be super grateful if you would be able to tell me what kind of exercises/techniques they used fo you so that I can do them. I definitely need to rewire my brain. And any specific info on what kind of binaural beats you use would also be greatly appreciated. So far I’ve only hard the ones on YouTube. Sorry if that is too many questions.
One thing I forgot to mention in my last message was that I had to have looked into Buddhism. I became very interested in the practice and started listening to books on audible about it as well as philosophy and Philology. I found it helpful but being stuck in bed and not being able to go outside means that it’s very difficult to appreciate life sometimes. I am really trying. I found the power of now helpful and Marcus Arelious’s meditations is also a favourite. That’s why I called my podcast add nothing to it 😊
I have had my blood checked recently and it’s okay, thank you for asking though. At one point years ago when I was told I had fibromyalgia I injected myself daily with B12 And magnesium on the advice of a Doctor who specialised in Fibromyalgia. It didn’t help me though. I’ve also gone through huge herbal protocols and vitamins for limes disease when they thought that’s what was wrong with me. That didn’t help either.
Best wishes,
Lucy
Hi Lucy,
It's interesting that you got a fibro diagnosis. I've heard that fibro/FND can go hand in hand. I worked with a naturalpath with the LDN. We slowly increased my dose from 1 mg to 4.5 mg over several months. I had to do this slowly because I suffer from migraines, and I guess LDN can cause headaches as well. I started to notice a difference at 1.5 a bigger difference at 3 mg, and felt almost normal after a few weeks at 4.5 mg.
The binaural beats that I like are all on you tube. I rotate mainly between one without music (and put my own music over it), and one with music. Both links are below. I also really do well with instrumental music over the top of the beats. I love music anyway, so listening to it all day isn't distracting.
no music youtube.com/watch?v=dME_uH9...
music youtube.com/watch?v=1dnWev0...
My OT had specialized working with kids with autism. Specifically, she was interactive metronome trained so we worked on those techniques a lot. Basically this involved doing hand-eye coordination exercises while listening to the metronome. I think it's also called rhythmic rehabilitation. The link below shows an example of kids doing this kind of therapy.
Maybe it will give you some ideas.
youtube.com/watch?v=WR1lC6U...
The only downside that I see is that I'm pretty dependent on "extra" sound to help me filter things out. So I have headphones or music going a lot now.
I started doing this kind of training on my own, before I could get in to see my OT. The hardest part was trying to figure out what my body still remembered. In the beginning, I couldn't feed myself, but I could put my hair in a ponytail. I couldn't walk, but I could march just fine (I used to be in drumline). So a lot of it was trying to figure out where I was, and create a starting off point from there.
I hope all this helps, and please keep us posted with how you're getting along!
Drea
I just realized my first 2 links didnt come through. But I had good luck looking up "binaural beats" on you tube. I also paid for the membership without commercials. Otherwise I was ticking every commercial break, lol. Also, I found this link for OT and Self regulation. It explains exactly how metronome training works. I hope this helps
otselfregulation.blogspot.c...
Hi Drea,
Thanks! This all looks great. I’ll definitely let you know how I get on.
I was diagnosed with fibromyalgia years ago, I have no idea if that diagnosis sticks now that I have been told I have FND or if it cancels out. My doctors have not been forthcoming answering questions.
It’s interesting that your OT had a background in autism, I have Asperger’s syndrome so look forward to seeing how this works for me on different levels 😊
Thanks again for you help. I really appreciate it.
Best wishes,
Lucy
You're so welcome! I really have hope that these will work for you! It's interesting that we got similar diagnosis. For me, it was FND first and then Fibro. I guess I still have both. The most recent neurologist that I went to felt that I get these ticks because of the Fibro. She explained that it's from the stress of being in constant pain. I'm not sure if I believe that, but I guess it really doesn't matter. For me, everything kind of crashed when my Vitamin levels got critically low. The theory is that this jump started everything else. But honestly I've felt lousy for years with stomach issues and other unrelated things. So who knows?
For me, the LDN took about 5 months to really have a significant effect. But I started to feel slowly better right away. I think that and the intense OT are really what helped the most. If you can't find an OT, I think there's lots of resources about metronome training. I started at home with the metronome and sorting large beads. And then stringing beads. And then un-stringing beads and putting them away. That's also the type of thing we started with in OT as well. Another one that we did was finding objects in a large bin of rice, and sorting them. The objects could be a paperclip, a button, etc. That exercise was really tough. I hated that rice, lol. But it helped, and it worked. I also found this website that explains metronome training pretty well. I hope this helps: amenclinics.com/services/in...
I can't believe how much better I am a year and a half after everything came crashing down. For the most part, I'm pretty independent. I believe you can get there too! Feel free to email me if you like. You've got this! Justdrea81@gmail.com
Wow that’s quite something. I identify with what you wrote more than I can say. My whole life I have been living for tomorrow. Always concentrating on getting to the next place whether that’s a university or a sport or a personal-best in my 2K erg. Before I fell I was driving myself into exhaustion that I probably shouldn’t have been experiencing in my time of life. But as I say that I know how ridiculous it sounds, age means nothing. I choose to put my focus and energy into things that were not my passions and allowed too much of my energy to go on things that were emotionally draining. I went travelling after to university to have ‘a break’, as I saw travelling as escapism in many ways. Since I was injured my family and I have poured so much energy into getting me better. For me everything became a matter of when I’m better I’m going to do this...etc. I have become worse and worse in terms of levels of pain and of my mobility. It has been very difficult to find any joy in the moment or any occupation outside of trying to keep the pain levels as low as possible. I have seen so many different doctors and therapists over the years, travelling abroad to see yet more. This is why I changed my attitude to thinking of what I can do with what I have and not pushing myself to do something which I can’t do and therefore makes me worse. This is how I came to do my podcast. I called it ‘Add Nothing To IT’ as I wanted to maintain that philosophy. I am really enjoying being able to create something from bed, using my voice to have an outlet into the world. I sincerely understand when you say we need to rest sometimes, even from hope. Believe me I am beyond exhausted from the fight. Not just for the right medical treatment but from keeping the hope alive. I am using my podcast to try to give myself some moment that can be enough.
A year ago somebody very close to me died and I realised as I experienced this horrible grief, that I couldn’t grieve properly for him as I was already in a state of grief for my old life and what I thought my life would be. I saw a psychiatrist recently who said that I came across as though I was 21 and not 31. This is not the first time I’ve heard this and it’s not because of the way I look. It’s because I missed out on so many years of development that I have mentally, in some ways, stayed as I was when I fell. Whilst in other ways I have outgrown my peers. This puts me in rather an odd place. But I don’t mind this. I don’t mind ever being different, I just mind the pain.
Thank you for your message. It really was great to read and meant a lot that you took the time to send. If you ever want someone to talk to you or message please keep me in mind.
Best wishes, Lucy
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