Hi everyone. This link at the end of my comment just may in the long run help your conditions.
But firstly clear it with your GP / Doctor first.
It's highly recommend by Dick Vandike himself.
Enjoy and u hope it makes you feel better soon.
Keep strong and be well 🤗🤗😇😇
I’m 100% convinced that exercise has been one of the biggest factors in managing my symptoms and pain ( and even stress of feeling sick). The times when I’m not able to exercise I feel worse and I’ve learned to just get outside and at least go for a walk. The more I research the impact of exercise the more I’m convinced. Running is my favorite, people tell me that I’m crazy to be running so much ( you should be resting!) but the thing is that it’s addicting and it’s when I feel the best. I’ve never been athletic in my life so it’s funny to me that now in my thirties and suddenly sick I’ve found so much joy in exercising.
How do u run with FND?
I don’t know, I guess that’s why I question if I have FND, I have the same symptoms that many on the forum have ( leftside weakness numbness, pain, headaches, seizures, memory loss, tremors) but I’m still able to train six hours a week running, cycling and swimming. I average running 15 miles a week, and my neurologist doesn’t seem to think anything of it...I have days where I definitely struggle more especially with balance . All I know is that the ketogenic diet has really helped me manage my life a lot. But I still haven’t felt “good aka normal “ in two years and I wish I had answers....
Everyone’s experience with FND varies, and I have similar symptoms but I can’t run. I can only walk a couple blocks at most and very slowly. Guess I’m jealous lol
Me too 😂🤣😂 I can walk a few feet and it becomes a fight with gravity an lately it's gravity wins and I end up on the floor 🤣😂🤣😂 🤗🤗
Try to walk everyday, u just might get a surprise and find that you can walk far. Heard someone else had that experience, so I’ve been trying to walk everyday even if I can only just do a little bit.
Hi lass 🤗 that's great news that your getting out for a walk, the fresh air alone will help not only your mood but also your physical health 😄 I so hope that this new week will bring fresh energy, good health and fun for you,🤗 be well and keep strong 🤗🙏😇
You too, hope u r getting the encouragement on your end as well. We feed off each other here and it helps our sanity 😀
😂😂 till you get insulted for no reason 😣 but hey 😂 worse thing's in life 🤗😀😇
I feel jealous of my old self and my life before. I took so much for granted, all the things I fight for daily was in the palm of my hand and I never thought twice about it....
Tell me about it... I’m jealous of my husband who can do all the things I can’t and who I don’t think understands the gravity of how devastating this disorder is to me. I try not to complain too much cause who wants to be around that, so I come here and complain cause u guys get it.
I miss the person I was before too and I also took what my brain did for granted. I never realized how much brain power it took to move normally or even to speak. I tried driving the other day since it’s been four months, and after a couple minutes I got a headache and was starting to feel a little stupid, so I stopped. Guess it was too much to process hitting the gas and brake pedals at the right times, keeping track of other cars and traffic lights and figuring out what direction to take, it was obviously too much for my brain to handle. I got upset because I was feeling good physically that day and figured I could drive since I missed it so much. Can’t walk much and can’t drive..the two things that gives any person true freedom.
I feel the same way! I try not to complain and roll with the punches, and driving is always a daunting and I live in a rural small community with no traffic lights! Haha..And I noticed pretty quickly that if I start confiding in doctors about what’s really happening I’m instantly discredited. I’ve learned a lot of empathy for people who are chronically and mentally ill because I honestly never thought about it. Now I’m trying to figure out how I’m going to gracefully loose my mind, since memory loss and seizures have been my most disabling symptoms. So far I’ve managed to do okay at work though sometimes when I make mistakes ( I’m a reporter/photographer for a newspaper) it’s quite embarrassing because it feels like everyone knows! I just wonder what my future will be like and how I can take care of my young kids... and hate thinking they’ll have to take care of me!
Hi lass me again 😂🤣
Unfortunately if your Putin your energy into what will life be like in the future then your already feeding your subconscious that this is how your gone to be for the rest of your life and with this FND though I'm less then even a month being dignosed with it, I do know that it's our signals being picked up from our brains that's damaged. Do if we are feeding our brain with worry, anexiey and stressful signals of worry what it's then our brains are going to send the signals that no point we're already beaten may as well get out the slippers and 24/7 night gown an throw away the day Clough's and just get a stretcher wheelchair. And from the very little I know from you here , your to much of a fighter to live like this or be beaten plus your hubby won't let you , he won't have you to constantly try to compete with 😂😂🤣😂 so focus lass on what's best to do now not tomorrow because even a 99% healthy person can't know what tomorrow is going to bring an how's it going to effect their health brings.
So put all your energy into doing today what's gone to make today a happy and excited one and then tell your body that night thanks for getting me through today no matter if we had a few hiccups it's better then having major ones in one day. We have to teach our minds and bodies that this is how we are going to handle stress, and worry will be replaced with just concern and repeat the saying pressure is for tires and I have legs not tires 🤣😂👍🙊🙊🙊 I hope this helps you and it will also help anyone reading this. I wish you good health and wellness along with happiness lass🤗😇 be well and keep strong 🤗
You have good words for encouragement. I have been dealing with this everyday for 7 months. For the past couple weeks I have tried to just accept it because you start getting used to feeling bad. And I was doing good even smiling and being a little at peace but then last night I said to myself I shouldn’t be at peace with this because there is something really wrong with me and then I start to worry again. I keep going back and forth. The doctors can’t help so I should just go about my business, just like a cat or dog who just lost a leg or eye, it’s devastating but you see them just go on and about as if nothing happened.
AHH lass there's always times we will get down, it's allowed but the important thing is to not let it swallow you up hole. 😣 You don't want to go down that rabbit hole 😯🐰
On days like what your going through. I can only suggest that you tell yourself that stress , upset and worry is what caused this condition and your already trying to cope with this besides causing a flair up with more stress by letting this condition get a hold of you. So tell your subconscious that your not going to let this condition control you or your life so there for your going to start keeping a diary record of what you managed to get through happily on a flair up day another words a list of a the things you got to accomplish no matter how small it's still big because you did it 👍🤗😀💪 this way you will remember what to do next time you have a bit not so good day. 👍🤗 If you can manage a small walk to even just end your garden or pathway and consintrate souly on just to take some very slow breaths in with your nose hold it for 3 as you then sigh out with parted lips as your walking , then your already showing your condition your in charge as it's something that your condition would not be expecting 😀👍👍👍💪💪💪🤗🤗🤗 . I hope this might be of help to you and give yourself a big hug you have come so far. Don't look behind to see how much look forward to see how far your going to go to claim your life back 🤗🤗🤗 be well and I hope you enjoy your evening 😀 keep strong 🤗🙏😇
You are an angel 😇
As are you lassie 🤗😇🙏💝
It would be great to raise awareness of this disorder with your newspaper, not enough people know about it and we are dismissed just like the mentally ill. I used to think they were crazy especially when they get a weird and spaced out look on their face, but now that I make that same face when my brain starts to feel dopey and I’m slurring my speech I must look crazy too. Didn’t realize they can’t help themselves because they can’t control their brain chemical connections either, just like us.
Hindsight is s marvelous thing Lass 🙏💝 but In saying that and getting back to the rest of your message, your brain sure is not dopey if it was you wouldn't of thought of this brilliant idea if taking it to the news papers 🤗🤗🤗 well done you 🤗🤗😇 it's something going to look into over here during the week when I get time. I have a few contacts that might point me in the right direction.👍 I hope you have a wonderful new week dear girl and chat soon. Be well and keep strong 🤗🙏😇👼
Hi Ajastar 🤗
Firstly you have the right name to help you through all if this as big as it is. You have star in your name and stars Never ever stop shining bright,🤗 even behind the darkest cloud it's still shining bright and just waiting for that darkness to pass so it can do what it does best and that's shine as brilliant and bright as it can to give comfort to everyone and bring a pleasure of distraction from a person mind as they softly gaze at it. Your husband is most likely like mine and others or partners, going through a very hard time also trying to wrap their head's around how can this be happening to the one I love. I promised I would always protect them and this is something I can't protect or make better for them. Thankfully they don't have this horrible condition so they don't know how we feel, but sadly 😣 either do we apart from gutted. But if we can't get our head's around this FND and we have it, how are our partners supposed to understand ? The more we would try to explain the more they are hurting because they are also helpless in trying to get things better so the only way they can handle it is unfortunately close them selves off that's their coping mechanisms. We have to try reaching ourselves that skill that fight or flight in the seance of closing off that takes over a partner/husband.
We must learn ourselves to cope with how our auto response of defense in dealing with situations and that's fight, flight, fleet,hide, avoid and submit. Sadly with us it's to use both fight and also submit we submit to taking this condition as we have no choice and we fight to not let it control us but we control it. We all have to go through the Greave for what way we use to physically and mentally use to be and put that to bed shortly after we do our greaving and consintrate on this is my life now time to make the very best of it and the most of it as well as making as very much happy memories as hard as it will be to make, but it's something we need to do not only for ourselves but especially for those we love because like it or not,😣 they too are going through our condition . I know this from 20 year's ago being dignosed with not one but two conditions that are in the Multiple sclerosis family and I had to go through all if this back then and soon as I got remission and was able to get my physical life back and was back doing all the fun activities I so loved out doors with family and friends and I was struck down with osteoarthritis in my cirvical and lumber spine my two knees and was then having to put that form of life again an had to be out into neck and back brace support 😣 and now this FND again another dignoses that mimics Multiple sclerosis. But even though I have been told it's too late for me now to try reverse it as much as possible, even though it's less than a month I was dignosed 🙄 I'm determined not to let it take over my life nor control me, I'm going to everything in my power to take over it. I so do hope lass that this is of some help to you, if not it be a good book to help you fall asleep reading 🤣😂🤣👍🤣 talk about writers cramp I think I have writers hand lock 🤣😂🤣😲😲😲🙈 be well lass and keep strong 🤗🙏😇🤗
I wish I could write uplifting and inspiring words like you 😀. I can’t because unfortunately I’m still grieving and I’m feeling sorry for myself. But I appreciate your words they made me smile!
Sweet Ajastar, you have every right to have a off day and some times it can even be two days in a row , but the main thing lass to focus on is that your here , your alive and that is one big accomplishment in its self Ajastar 🤗🤗🤗🤗 and I'm sure I speak for everyone here when I say be proud of yourself because I know I am 🤗🤗🤗. I wish you health, happiness and I send you soft healing hugs 🤗 with comfort love ❤️ and light 🙏😇 keep strong 🤗🙏😇
Hi Chingona 🤗
Our lives goes fast enough without wasting time on wondering why , it's just brilliant that you are doing what your able to do on your good days. Unfortunately all your symptoms are describing NFD but thankfully maybe your exercise routine is what is keeping it at bay and not as bad as others 🤗 so maybe you could focus on the planing of keeping up your exercise routine soon as it's helping and working for you. I'm do well jell 🤣😂🤣😂 up to a few year's ago before the arteritis got hold of me and caused a total flair up of all the music physical conditions I have, I was as active as you . Do exercise is the most important key to managing our condition and I'm very delighted and proud of you for keeping your exercise routine gone 🤗🤗🤗 even if I am well jell 🤣😂🤗 hugs keep well and keep strong 🤗🙏
Yes it’s all about challenging yourself and not comparing yourself to others or who you were before, I’ve had to work through that, went through many times when I completely lost my confidence ( and still do) I went for a bike ride yesterday and cried almost the whole time because I could barely stay up right.my boyfriend is a competitive athlete and he is good at not letting me forget the fire within me, but if I go down that road of comparing myself to him or other athletes it’s a battle already lost, tho I would love to beat him at something just once😂 I have arthritis in my neck and scoliosis so I feel your pain😩 it sucky for sure. I have a neuropsychological test coming up soon and another eeg in June so after those results the neurologist will decide if I have FND or not. Honestly I probably won’t accept an FND diagnosis if he gives it to me, all my tests come back abnormal he just doesn’t know why. I enjoy this forum tho because a lot of what people talk about I feel, but don’t feel comfortable talking to other people about it especially doctors (because I’ve been treated poorly)or my family because I don’t want them to worry. BTW: I’m proud of you too! !!!
Thanks so much lass, an hey you do beat him at something an you don't even have to try. Tell him your a woman an women can multitask much more and quicker in the kitchen and every where 🤣 better than men it's a born gift an he can't beat it 🤣😂🤣😂👍🤗
I hope you will soon get your tests and that what ever the outcome that whether you have FND or not that you can message me anytime to just offload or have a chat.🤗 But if it's not FND then it's something it mimics so this forum will still be of benefit to you 🤔 think of it that way 🤗
I hope you be feeling better soon and maybe you could get an attachment that goes onto the back of your bike to support your back? Maybe pop on line an Google back support attachment for cycle bikes? 🤔 Just a thought 🤗 I was born with scoliosis but thankfully it's only a small curve at the end of my spine but unfortunately the osteoarthritis and the L2/3/4 and 5 disc degenerative damage has maid it noticeable it's there the last year so no more cross country for me unless I can manage it lot better then i am an trust me I sure am trying 😂🤣 think that's why I keep testing gravity but then it wins😲🙃😕😖😩 an I lose an hit the deck 😂🤣 my humour is what keeps me from cracking up so I use it all the time especially to crack an cheer others up 🙈🙊😂🤣
I hope lass that what ever you do this weekend an your new week that it's a fun filled memories 🙏🤗🤗😇 be well and keep strong 🤗🙏
I’m getting a kick out of the word lass! I love it! Not something you hear everyday in the US let alone New Mexico 😍 I agree that you have to laugh at yourself and let others laugh with you. I encourage my kids and family to tease me about seizures and memory loss because it helps me and helps them cope with are feelings and we are all that way at home anyways. Today I was wondering are other families as silly as we are? It’s all jokes, teasing, potty talk and play around here. My dad always talked about how important a positive mental attitude was and I didn’t really sink in to what he really meant and what he taught me. But it’s really been so useful these last years for me, and really focusing on what I can do versus what I can’t.
It feels really good to connect to you both and hear your stories ❤️
Hi lass 😂🤣🤗🤗🤗🤗🤗❤️ I suppose this means you now know I'm a Dublin Ireland lass yes?😂🤣😂🤣🤗🤗🤗 I wonder what gave me away 🤔😂🤣 yes your dad is totally right, humour is what makes us stronger and helps us keep our spirits up in times of the likes of our off day's. 🙄😏 But it's up to us ourselves to use our humour for our own needs to get through the day and we are not just doing to to please others.😯 So all in all the humour also puts our subconscious into the fight mode instead of flight / hide/fleet/avoid or submit .💪🏆 So just keep up the great humour and you keep up being ahead of your situation 🤗🤗😇😇 be well lass🤗 and keep strong 🤗
I love your outlook with FND. We also constantly have fun with the ever changing symptoms, with two teenagers they can come out with the best comments and I think the importance of a positive attitude can go a long way. I still get the mum said yes, hoping I’ve forgotten I did, or better yet the infamous shaking jokes. I think laughter is also a way to help them cope on my bad days... it’s easy to forget that our families are also sharing this journey with us.
Hi Regaining control 🤗 your comment to Chingona was like as if I had written it about my family and I 😂🤣😂🤣 my hubby said to me will I hold a glass of milk in my hand and he be back in 2 minutes for his milkshake 😏😂🤣 smart pants Haha. An the famous one they always love doing, they would call each other by name and say mammy said your in dishwasher or washing machine chore an I shout no I didn't and they say oh you having a brain fog moment Mam haha little brats haha. But yes it is great for them to have banter along with us joining in it helps us all to be able to show our conditions they are not ruining our lives or our loved ones time with us🤗😇👍😀, I hope you have a brilliant New week lass 🤗🙏😇 be well and keep strong 🤗🙏😇👼
Hi Chingona 🤗
It doesn't matter what age you are when you decide to run, go to the gym, take up jogging, take up power walking or running or even just getting out every day for a stroll.
The only thing that does matter is that you have decided to keep on living or in some people case only start living.
But this exercise is do gentle and slow, it actually uses as much muscles as doing a run only difference is this dose not cause the pains an akes afterwards.
There is people at the age of late 80's and 90,'s doing it. Just search in YouTube Dick Vandike exercise an you will see for yourself 🤗😀 I hope you have a wonderful weekend 🙏 keep strong 🤗🙏
My wife hasn't been exercising or running as much anymore(she's the one with fnd)but it's true she says she feels better when she goes on long walks..her legs bother her but then she will exercise n go for a long walk..she says she starts feeling better..it probably lifts her spirits
Hi 😀🤗 I'm so glad your wife is finding something that helps . Can I send you in private message some other link's too from YouTube? There is so many but the ones my clients would of used since I had to retire. There is brilliant seat exercise too for anyone in a wheelchair or is not steady on their feet. If you like I can send you a few in private message? Be well and don't get career burn out make sure to take time for you also 🤗 keep strong 🤗 Ce 🤗
Hi,
Thanks, but I'll listen to my consultant Prof Edwards and my physio Glen Neilson. Not some guy because he's famous - that is utter idiocy. It's hard to say this without coming across as rude - just a little irritated.
People with fatigue with their FND cannot exercise or push themselves - it leads to deterioration and can add NEAD to their list of problems. For those who can have the specialist physio for the movement disorder aspect who do not have fatigue it is about distraction techniques.
Please find more about your condition FND Hope and neurosymptoms.org are good starting points. I know we get left out in the cold, but if you don't have a good grip on FND then you'll have at least a chance of recovery, if not at least not making your condition any worse. You need to fight FND in the right way.
If you follow FND Hope on Twitter you can find out about the research being done - you can follow researchers too, there's some interesting findings. There are webinars on Youtube too. There are facebook groups. People are starting support groups. We are getting into the press more in the UK.
Hi thinkin. I'm so sorry that you feel my post has irritated you 😣. I be very grateful if you could read all of this reply and also what my actual post with the video actually says.and yes the NFD forums are so very important and they them selves actually request that we all try to help each other with tips, suggestions and advice if possible. 😀👍😇
Im glad your very happy with the professional that you have, an if you actually watched the video you would see that it's no way possible to cause any damages or cause any problems what's so ever. Plus the only reason why I mentioned that it was recommended by Dick Van Dike is because of his age an the health problems that he had that led him to start doing it years ago. Also it's an exercise that lots and lots into the hundreds of members that's in my health group on Facebook who's already discussed this type of exercise with their physiotherapy and Occupational therapist as well as their medical consultants and all have given them the green light 😀👍 an can I just inform you aswell of two things 😄 one is that it was actually my very own physiotherapist a few years ago who gave me the link to look up on YouTube to watch it and see what I think as I have already two conditions for 20 and 18 years that are belonging to the multiple sclerosis and Arthritis family. An it's from doing these exercises that's prevented me from being in a wheelchair. For as you said you can't Push exercise or it will cause damage. 😣 The second thing I would like to mention is if you actually read my post it actually says to get the all clear from your doctor first before doing these exercises.👍 And last thing just to let you know a little bit about me, I don't do Text arguments or debates , I use my energy for the important things in life like helping others and also my conditions, so if you're reply to me is going to be like what you have sent above, then I'm really sorry 😣😣 I won't be replying or getting cought up in a debate . Sorry if I'm the one who may sound I'm being-rude and also freedom of speech like you just did in writing saying my post is( just utter idiocy. ) But I just wanted to inform you, I'm no idiot and I totally disagree with your view on just throwing in the towel and letting your condition dictate to you how to not fight it. When you have had two other conditions that are from the multiple sclerosis and Arthritis family for 20 year's, then I could understand you maybe out of fight as some would be. But I'm the I'm gonna keep ontop my condition same as I did the last 20 year's by my Orthopedic + rheumatology + Physiotherapist + Neurologist + physiotherapist + Occupational therapist and also my Family doctor that are here in Ireland and have been trained by the best all over the world, not just in the UK where they actually travel interns also for research conferences every few months as well as Canada and Germany. So as I said I'm not (being rude ) just doing as you do, airing my feelings. 👍😀 Take care be well and be happy. Keep strong 🤗🙏😇👼
Hi thinkin,
What a shame you feel irritated by this post, I suffer with FND, Lupus, Chronic Fatigue ext. I find Tai Cheng a very gentle form of exercise which has helped me a great deal with my balance.
When I were diagnosed with M.E ( chronic fatigue ) I were given very gentle movements to do at my local hospital in the phisio dept - Its all about pacing one's self, gentle exercise is good, without it our muscles waste and we loose balance and strength
What is of help to one may not necessarily help another, I think what we have to remember with FND we are all different with different needs.
It is nice to see other's on here with such a positive outlook on life who are trying to encourage others - which is support in it's self.
Keep well keep positive.
