Luckily they managed to get the intensive six week therapy which I think should be offered to all newly diagnosed sufferers, so the habits don't become ingrained.
Here is a couple of extracts from the site:
"I was passed from specialist to specialist until eventually I spoke to a neurologist who asked me, as we were talking, to tap my thumb and middle finger together on my left hand. As I did so, the tremor in my right arm stopped."
"I wanted to tell my brain to stop but it wouldn’t listen. But as I began to learn, I could distract it. Tapping out a pattern with my fingers or toes, as the neurologist had shown me, shifted my brain’s focus away from my tremor or seizure and stopped the symptoms."
"Research has found a connection between FND and the stress hormone cortisol. Whenever I was stressed, tired or anxious, my brain went into autopilot and I would have a seizure. This loss of control of my body was terrifying and the fear caused my body to produce more cortisol, creating a debilitating loop."
I actually recall asking for cortisol level check but there was deemed no medical reason (after reading an article).
"It is common for FND patients to exist in a cycle of boom and bust. On the days where their symptoms feel more manageable they do too much, leading to a flare-up the following day and a negative impact on both the individual’s mood (following the burst of cortisol) and their perception of their ability to live a 'normal' life. The physiotherapy and occupational therapy worked on a graded exercise plan so that each day a patient would do slightly more than on a typical 'bad' day and slightly less than on a 'good' day, breaking the cycle to create steady improvement."
"Patients are taught ways to manage their symptoms, both physically and psychologically. Alongside learning more about tapping techniques to distract my brain, I was taught to lean into the involuntary movement. If my arm was trembling, I would try and make that tremor bigger and more pronounced until I could control the movement of it, then slowly reduce the speed until stopping it. I learned that the seizures were linked to anxiety or stress triggers and was taught breathing exercises and meditation techniques to calm my nervous system and reduce cortisol production. Similarly, CBT worked to manage thoughts and behaviours that could be marring my recovery. "
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Lady4
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That is interesting, and very useful but I am unsure I have the 'standard' version of the tremors/shakes...never having had a FTF consultation with the neuro psychiatrist! My shakes do not last for long, but involve whole body movements and unlike, as mentioned above, are worse when the body is relaxed ( = less cortisol ?) e.g after deep breaths, after a pleasant phone conversation, after some flow roping, sitting down not doing much .. the shaking seems to be a release mechanism, so my aim has to be to stop the initial inner body tension. Unlike the video of a tremoring person on the St George's site, I can override mine with intentional movement and don't have up and down energy patterns.
All this just points to the fact that each FND patient needs thorough individual assessment from an experienced practitioner...something regrettably in short supply. The info will help many, so thanks for that.
Thank you for redirecting the conversation toward some positivity. FND is difficult and exhausting to manage, even when one has a handle on it. Sharing what your neurologist spoke of with the finger tapping is good information in that it led to the idea of distracting and refocusing the brain. I am certain many readers can benefit from it.
Like you, discovering how paramount pacing my life is has allowed me to manage my symptoms much better. Literally, I put rest periods and days in my calendar with the same importance as booking a doctor appointment or a social event. Only one event of any kind can happen in a day. If a big event is on the horizon, say my grandson’s birthday party, I book at least one rest day before and after the day of the event. This pacing has allowed me the ability to do a moderate amount of things.
No matter what, I have some crappy days, weeks, and even a string of a few months. However, there are more periods of manageable days and weeks since I have learned to consciously pace.
Listening to my body rather than fighting to work through the various motor symptoms, pain and exhaustion, is serving me well.
Living with FND has been the hardest thing I have ever tackled. I have had a 4 year learning curve to get where I am today. I have a lot more learning to do. I am being proactive. I am discovering new and improved methods and information.
So I thank you again, Lady4, for your post. I hope you have a good day!
Just gunna pop in with a reminder that this doesn't work for every FND patient, and if it doesn't - it's not your fault 💞FND is a Neurological condition that we can't directly control - we can only control and train triggers. If the triggers are based on your body temp, you can only learn how to spot it not how to stop it via thought.
Managing the condition is the goal, and that can vary greatly between us.
Absolutely what works for one might not work for another. If you can detect your temp rising, try a cooling towel.
I am not a fan of CBT alone, it can help as part of a multi-disciplinary approach for reversing negative thought patterns but showing your brain you have got it, is more powerful (taking back control).
I refuse to believe I’m at the best I can be - HenriettPoultryfoot summed it up so well for me - trial and error can often lead to improvement. We just have to learn, learn, then learn some more about what works for each of us.
These types of posts are what keep me coming back to this site!
Exactly that I'm really struggling with the symptoms especially pain and temperature of my body and I slightly moved my leg and I really screamed in pain and with a limp now when I transfer from my wheelchair to my chair or bed etc. I had spasms as well and my body like my shoulders and elbows quite painful and feet just on several parts of my body is very painful and soreness and everywhere at the moment and body parts and so wet and sweating and wet on my skin it's really uncomfortable and unbearable hot cold at the same time very unmanageable can't control my body temperature like a thermostat not working properly anymore pain is levels is too high degree and body temperature too high degrees and can't control it
I can't control my temperature because if I take a layer of clothing off I am then freezing cold and if I leave it on I am really sweaty hot and wet I do get a warm towel and dry the wet off me without taking any part of clothing off so I don't get freezing cold. It's very difficult to deal with. Even can't use any solutions they have to be warm up. The amount of like it was torturing me when the nurses at to change my dressings when I at to have dressings and they couldn't understand why I wlas screaming just by them applying solution to clean my wounds and I said it's really painful they said its not painful but for me it was excruciating pain and then taking old dressings off my skin was excruciating pain and eventually they believe me and I told them put warm water and they listened to me and they said its because they have not experienced anything like me in this sort of pain taking off old dressings and using solutions that were in this amount of pain it's not normal but for me it is. I said it was my brain signals as the brain gives signals of pain levels and temperatures and movement and our balance and hearing and vision it it's not working properly it's giving out signals that are far too high which I cannot control them. Yes it shouldn't be this extortionate of pain levels but it is what it is. That's why the nervous system isn't working properly it's damaged and I think it's through my trauma in 2020. As it started at that time.
Also instead of taking clothes on or off, think more of a blanket. You could get a cooling weighted blanket, when you are feeling hot (it also has a calming effect). Maybe a soft fluffy warm blanket when cold. Blankets are easy to throw on and off when a home.
I does seem you may have developed a high sensitivity to touch and maybe there is a program that may help you de-sensitise.
The nervous symptom is necessary damaged its more out of balance.
I have my fleece blankets and gloves and hat on indoors when I get cold in my body temperature it also happens when I am in bed with 3 fleece blankets and quilt as well and I also have to put gloves on and hat. It may sound crazy but I get freezing cold I have no control over my body temperature. I have to have eyedrops 3 times a day and my carers put them in and if they don't warm my eyedrops up it's like putting a whole ice cube in each eye which is 2 ice cubes with both eyes one in each eye is torture so a few carers warm my eyedrops up before they put my eyedrops in. Anything that is cold is not just cold but freezing cold not just this time of year all year round every day 24/7 7 days a week and I have had this since 2020. My nervous system is damage that's how FND and Sjogrens syndrome started and I was in trauma at the time. My Neuropathic pain is just very sore to even touch at the moment I'm in great pain levels today gabapentin I take as I also have eye seizures and non epileptic seizures as well. This all started in 2020 and numbness in my both legs since 2020 on several occasions it's like my arm isn't part of my body or my legs isn't part of my body like I only have half of my body even though my legs are part of my body and arms because I can see my legs and arms I cannot feel they are on several occasions that they feel numbness and that's why I don't think that they are part of my body it's very difficult and hard to explain it feels very strange to put it in to words as sometimes my words don't get out very well either. It's difficult to say words and how to say something right or things come out wrong as well.
Are the eye seizures caused by your epilepsy? If not, curious, when did they start?
I wouldn't describe FND as a damaged nervous system, more an unbalanced one (para and sympathetic).
Neuropathy comes to mind. An extract from a medical site:
Extreme sensitivity to touch can be another symptom of peripheral neuropathy.
The sensation of numbness and tingling of the skin is medically known as paresthesia.
Yet, all that said, my son had leg and thigh numbness/thigh spasms and I recall using hot and cold therapy and massage but it all stopped later on in the day and eventually ceased after a few weeks. I think we may have had a school holiday break then (a while back now) which he would have been calmer (although never aware anxious) and we all are unique on this journey.
No it's part of my FND symptoms they said and they started at the same time as my FND and Sjogrens syndrome and mental illness in 2020 my brain signals change at all the sudden at the same time as everything else physically and emotionally and mentally.
I have spasms and very bad tremors and pinching, and tingling memory problems with it and lots of what my Neurologist gave me a website information to read about FND and it makes more sense than its like the software on a computer gone wrong John Stone describes it as a computer its not the hardware but the software. I can't even speak hardly today I can't get my words out today I have lots of ticking like a clock a lot worse recently I get embarrassed about it and other parts of my mouth making noises that I wouldn't of done ever. I have sensory loss.
It you have leg spasms our neuro physio said for my son to just keep trying to stand but I think if you add in a sensory element (ie bare foot on a fluffy carpet) that may add another input (but make sure a soft landing). With leg tremors try the Hoover "rule in", you will be amazed that by concentrating on the leg (ie lifting the one that isn't in tremor) stops the other leg from going into spasm/temporarily but this can be improved upon. Google it, you will see therapist showing how it works in practise.
Thanks Lady4 I described things differently because I'm autistic maybe not that it's damaged but it's not working normal as I should maybe I described it as a thermostat gone wrong maybe that's a better way of describing my temperatures as that's how it feels with my eractic freezing cold and too hot temperatures. But that isn't it it's effecting my whole brain and body speech and communication problems and memory problems hearing and vision problems as well and pain levels are overwhelming too high sensory stuff I can't eat hot food because of the very strong smells of food and I can't go to cafe or restaurants because they smell of just walking in there can't bear the smells. I have numbless legs and it just happened one particular morning when I woke up that morning I couldn't move my legs and I could stand but didn't have any balance or movement in my legs but the day before that I was walking on a walking stick and for a few years in 2020 and I still couldn't do it now that was in 2020 now its just turned 2025 and I still can't get my balance and move my legs to take some steps and I have lost half a stone in weight and I had OT physiotherapist to get me moving with my balance and movements they tried very hard and I tried very hard they got me a wheelchair sometimes I wake and I can't move one of my fingers don't want to move it's lost it's movements in my finger sometimes I just wake up and my arm lost it's movement sometimes it's my leg or my foot it's happens all of a sudden especially when I have just woken up and the movements of my joints lost movements of moving them and muscles have lost movements it's really excruciating pain.
I understand, I think my son is on the autistic spectrum. I think you need to practise with sensory input / reduction, what works for you.
I think maybe not all hot foods smell but you have a strong reaction to some and as that has been your reaction for sometime, your brain predicts it will be the same again and doesn't correct that prediction with actual sensory input (it effectively gets lazy).
Don't think about what you can't do, think about what you can do to counter balance.
Say, noise for example, noise cancelling headphones can help. Or even actively being in a conversation. I saw one video of a lady who experienced symptoms (can't quite recall which ones) but they got out the car still engaged in conversation and were walking around.
Some say they struggle to walk properly but with practise (and external focus/sensory input) can run on a treadmill for example, thats because they have ultimately taken back control. Everything takes time so don't be too hard on yourself.
Grounding techniques can help also if you feel a seizure coming on. Worse case scenario let it wash over you (accept it, get to a safe space, lower yourself to the floor if you have time). Think of it like a wave going gently over your head.
I do all this got eat defenders for noise control and dark glasses for lights and I eat what I can and I do a lot of groups and church and I do colouring letters and I do practicing keyboard and xylophone as well I go to the lake near me every day and I fo gentle exercises as well as I still have a life to live and life is for living the best you can and enjoy life as well and I I do bigger than myself and strength comes from God when we don't have any strength left I pray and read the Bible this helps me to go out each day and I get through everything each day I say to myself how did I get through this battle today and I thank God that he got me through this day and I thank God that he got me through my struggles and its amazing what you can do when we give it a go.
I don't have epilepsy I have non epileptic seizures I know everything in it that's happening around me I just can't open my eyes or speak l understand and hear everything the are saying and know if they touched me which I don't like it because it makes me in it longer if they touch me or don't understand why I can't speak.
Sorry, my misunderstanding. It was the dry eyes and eye drops bit I didn't understand, unless that is something that you already suffered from before.
I get what you are saying about the NEDS, is there anyone that can spot you going into that diassociative state, thats the best time to try and regulate.
No I can't because I have to have different types of eye drops each day because I have eye disease and it's severe because my cells is dead and if I leave them out my eyes deteriorate. As it can cause blood clot in my cornea or scaring as well. I have prescribed eye drops.
You could try the external focus and mirror technique for trying to regain movement in your limbs when they temporarily won't move. It kinda acts like brain entraining but with positive results.
What symptoms did they associate with Sjogrens syndrome?
Yes it's good that I have sensory aids and I have had these for many years and they really help me with the difficulties with sensory stuff that is very overwhelming for me.
Thank you really helpful as when you told me to try and click my fingers , when I was having troubles with my foot dragging and not picking up , when I stop as my foot drops , I click my fingers in step and focus on the movement of the fingers clicking , a lot of the time it works. Because of this I have been experimenting with other techniques of distraction, tongue to top of mouth, tap my left thigh in time again it can work . Lady 4 you are an inspiration and full of amazing information, Thank you 🙏 for taking time out for all of us . Have a great New Year . Love to you all for 2025 let’s hope our FND behaviours better , we master new tricks. Xx
Your welcome, the clicking fingers bit was from another post but I could relate to the technique (additional sensory input = sound + external focus = watching yourself click your finger (opposite side I think the post said).
Our education classes teach us to layer the inputs, so maybe add another sensory input too . Your doing great.
You can also dial down a sensory input or layer on another.
Also, although the article says "there is no medical reason" for a cortisol check, I would disagree. I would think that, together with the explanation of the effect of too much, would help people to understand better, therefore become less anxious and thus able to manage their symptoms better.
Feeling seizurey today and my bladder is playing up today I have had so many uti that I have these every few months since 2020. They are very painful my bladder really hurts and couldn't stop going to the loo since middle of the night and having urge to feel I keep wanting to go but at times it was just a urgency to empty my bladder but not that I needed a wee and bladder was really painful and I wanted to stop the pain by toilet tissue it is not nice to have. Every time I have this the Doctor gives me antibiotics and it does help me feel better.
Keeping hydrating and regular toilet trips during the day should help. Maybe set yourself some reminders (physical notes), its easy to forget when dealing with so much else.
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