Hello

[IceOwl]

Hello, I was diagnosed with FND in February after having several stroke-like episodes. My 2 main triggers are too much noise/activity and fatigue. I’m being dismissed from work at the end of this month because of the condition and I just have no clue how to navigate moving forward with this. I’ve never reached out like this before but I’m a little bit terrified to be honest and exhausted, so exhausted 😬🩵

[Littlecook]

I know having been diagnosed with the condition in mach of this year I've found to just keep going down hill but things are improving slowly not with my health but benefits, my boss asked me to resign from my position of domestic Assistant in a care home being that I can no longer work but I've suggested that thay get medical reports so that I don’t lose any money owed to me. You will find us all a friendly bunch on here so keep posting and good luck .

[IceOwl in reply to Littlecook]

Thank you so much for your reply - I’m sorry you’re experiencing all this too - it’s a lot to navigate for sure! I’m so grateful I’ve found this group 🙂 wishing you a peaceful day ☺️ x

[Crystallmatters]

Hi IceOwl,

Yes , I feel what you are experiencing is normal in terms of someone who gets FND, It is a leap forward if you have an idea to triggers. In my case it’s the combination of what appears to be the subconscious mind and the perception.

I started with stroke like symptoms , symptoms that looked like to many electrical shocks then fits and then I would wake up in hospital , not knowing what was going on . I did know I have failed spinal surgeries, loads pain , loads fatigue.

A great start to being anxious, starting stress and worry, well does anyone blame us , it turns out all these things feed FND, again the complexity in FND, we all have similar but respond differently, depending on many factors . Pain does not have to be a cut or injury or failed surgery, pain can be due to any type of trauma, including childhood abuse.

To even begin to pinpoint can be difficult and cause anxiety and stress trying to diagnose. I can only speak from my own experience, yes it’s completely to do with me my own brain how I see things , feel things. I am still learning about FND and with help. Fatigue can be a major part or off kick due to the condition.

I seem to start off with a little trigger called back surgery and then bang , feeling along , helpless , doctor’s guessing, getting it wrong, not knowing what FND is not helpful.

Trying to calm the situation is really not easy when you are having things happen to your body, your brain you don’t fully understand.

We all have different makeup and at anytime a something little can trigger an emotional thought which could lead to a rollercoaster of emotional pain and anxiety these to things alone are possible causes of FND.

Jon Stone can be some very good pod casts to listen and learn from when it comes to FND.

With the help of my family’s support, Optimise Oxford , being lucky to have a few FND specialists I can speak to .

It has helped lower my anxiety, worry , stress and this along helps my FND be better, or me at least understand why my body is doing things I don’t want it to do.

I admit , I had a crap childhood and have needed help for this too , I just want you to know you are not alone, by sharing some of our own experiences it might help in some small way. For me it still seems like a terrible nightmare.

Now that I have finally grasped giving some compassion to my situation does help , some recognition. It a good start.

I have to pace a day, expect flare ups but don’t panic , learn to live with pain and try to get right the balance between the right medication, how much and should I do that.

If you can try to stop, recognise the situation with compassion it helps. I find my condition is greatly effected by what I eat drink and think, Pain effects me, being cold is no good for me. I am slowly learning to live with the new me.

I am not saying anything I have said is like you, however there might be the odd thing that might make you know you are not going mad. This site is brilliant, you can learn a lot from everything, everyone’s experiences.

I am so sorry you are have a rough time and wish you the best David x

[IceOwl in reply to Crystallmatters]

Morning David,

Thank you so much for your kind and open reply. I understand so much of what you say - FND sure is a wild and unpredictable beast but you are absolutely right about compassion playing an important role in helping to tame it - I’m working on this but it’s easier said than done though isn’t it amidst the flames of frustration and expanding list of new limitations. I guess mastering compassion doesn’t happen overnight so I afford myself compassion in this too. I’m very grateful for finding this group as I was feeling quite alone. Wishing you a peaceful day ☺️ x

[Westie_1]

Hi IceOwl

I also suffer from light and noise sensitivity and constant fatigue facial droop and pain. But over the years Ive learned to deal with it better. I would say I understand more now what is happening to me as alls I was given was a sheet of paper and told to go read it. It’s trial and error with the meds. I medidate when I can, use ear defenders for the noise but can only control the light when I’m home as I have sleep masks that I put on or whilst I’m working on my laptop I change the screen so it’s not bright. They are just a few ideas. I hope you are happy either way them dismissing you if not it can be a case of discrimination. That’s if you want to pursue that? I wish you well and know that some days are better than others. Please give yourself self care and compassion. Sending you a virtual hug 🤗 X

[IceOwl in reply to Westie_1]

Thank you so much for your message and the virtual hug 🩵 I’m getting better at giving time for meditation and I’m also finding gentle yoga helpful - I think I’m still struggling with ‘acceptance’ and spend too much time and energy fighting and resisting which only makes episodes more frequent but it is a hard one to accept - I guess it all takes time though. Wishing you a peaceful day 😌

[Shimmyaway in reply to IceOwl]

Identity loss of the person we once were is so difficult, but as Raven Feather says, it can also be the springboard for a different life focus. You have got FND, but don't let FND have you, You will need time to find a way to manage this and amidst the pressing practical issues, shift your focus to something you can look forward to.

[Crystallmatters in reply to Shimmyaway]

Hi Shimmyaway,

Wow powerful and so true, a few weeks ago I passed a mirror and looked into it , I don’t know quite how to describe the feeling but , I felt like a bolt of lightning went through me , in fact an out of body experience, I realised, I was not me anymore, I was a new me with FND and pain doing my best to get a grip on compassion for myself . I thought I had the world , the best wife and children and then first pain came along through both a fault in my lower back and the the first of many failed surgeries. Misery , Hell , no more Able to think straight , then through a brilliant family and mental health team mixed with others , I started to get a grasp on acceptance , Compassion for me and others , to realise my brain in my head is responsible for all these thoughts , how the circle of pain , anxiety, stress , depression, being depressed fuels both FND and Pain how we can if we can get a grip on how the complexity of our brain is , how we can control the volume of pain, what part food , drink and medications play, how we can involve vision , hearing , touch , feel , breathing, to help me. You know ! I am still learning, experimenting with it all , Pain yes it can be very lonely, it is all very hard to grasp.

I can’t believe I did not get a hold on this years ago, I think maybe I had to take this long journey, the one I am still on and whilst I hope it might go away , I know it won’t, so the best , I can do is help my self in believing, experiences, tail tail signs that show me , I am not mad and truly having recognition and compassion of my situation is real.

I am to very great full for the help and support of everyone on this site , but wish we all did not have the difficulties , suffering and pain we do.

Also yes , I have experienced many doctors and specialists who think , I we make it all up, this definitely does not do any of us any good, Eventually, I did meet good doctors and specialists, that know pain is real and we are not mad, this is a big step forward, in helping me.

I will leave it there, just loads love to you all, we are not alone and can find away as you say to find a new us. XXX Embrace to help us

[IceOwl in reply to Shimmyaway]

Thank you so much for this ☺️ honestly your message has been so helpful in seeing the possibility of reframing to think of what can be instead of focusing on what no longer is. Bless you x

[Shimmyaway in reply to IceOwl]

I am just happy to have been of some help to you. I think staying in your own reframed comfort zone, which maybe quite small given the limitations the FND will put on you, is important to reduce the anxiety, which feeds the FND. You can always expand that zone when you start to be more comfortable within it, but hopefully without the initial anxiety you must be experiencing from the shock of having your life turned upside down. I found the first few months very hard too.

[Westie_1]

Acceptance is a hard one to swallow it took me a few years and I still don’t like the FND label to be honest. I wish you well and hope you find peace with this dx and thank you I am having a peaceful day 🙏 😊

[Van604]

I have a similar story to you. I had collapsing episodes, extreme fatigue and weakness, and sound/light sensitivity. I also had a tremor, and slowness, so was diagnosed, by 2 neurologists, with Parkinson's/dystonia at first and my employer was supportive. After 2 years, the diagnosis changed to FND during my second hospitalization for the stroke-like episodes. My sick note was written by a neuropsychiatrist (I had been passed over to him) and that's when everything changed with my employer. They didn't want me back. I filed a human rights complaint, but after a year and mediation my lawyer advised me to give up because they were playing hard ball, and he could see how the stress was affecting me (I was hospitalized 2 more times during that period). The neuropsychiatrist was annoyed with me for giving up because he thought I was getting a "secondary gain" from being on sick leave (he is a massive Freudian!). He wanted me to push myself harder and harder, even though I was getting sicker and sicker. So I eventually ditched him and decided to listen to my body instead and things have improved. I haven't collapsed for 5 years, the tremor has almost gone, but I do still have the fatigue/weakness/sensitivity and pain. I've learned how to manage it - I pace myself, take naps, eat well, and do things that soothe rather than stress my brain. I'm a lot poorer financially, but I moved to a cheaper place and live more economically. In some ways, despite the pain and restricted movement, I am happier now. I think FND was my brain's way of forcing me to slow down, because my life was pretty manic before. I hope this helps - feel free to ask me any questions.

[IceOwl in reply to Van604]

Thank you so much for your message ☺️ I’m so sorry you’ve had such a long and difficult battle with FND. It’s so hard isn’t it!! I’m starting to see that, like you said, FND is my brain and body’s way of slowing me down a bit and forcing me to operate in a calmer, kinder way! I’m struggling to adjust though and on good days feel like I can out-do it only to be brutally reminded that I can’t 😫. It’s wonderful to hear that you haven’t collapsed for 5 years! I have way fewer episodes when I listen to my body and limit stress but it’s definitely easier said than done sometimes! I wish us all peace x

[Van604 in reply to IceOwl]

I think that's the key though - accepting that you can't just push through it, even when you're having a good day. Because you will pay later. I was told to do a little bit more than I thought I could on bad days, and less than I thought I could on good days. This has worked well. There's also a "spoons" thing, where you have so many a day to spend. That came from an OT. The way I look at it is, my brain wants the best for me so I should listen to the warnings, and pull back. Otherwise, I could get a heart attack or stroke, like so many other Type A people my age!

[IceOwl]

Ahh that’s excellent advice! sounds like a great way to aim for a bit of balance! Thank you 🙏 and do take care 😌