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Functional Neurological Disorder Awareness

Hello everyone,

My sister suggesting creating this thread in recognition of the recent events raising awareness of functional neurological disorder (FND) around the world. FND, which has also been called by other names such as conversion disorder, is a condition where someone has physical symptoms that stem from unknown causes. Some people find that their symptoms are preceded or made worse by stress and others don't. There is nothing structurally wrong with a person's body and brain that doctors can identify. Rather, the condition is thought to stem from 'faulty wiring' between the brain and body. Some people use the analogy of a computer where the hardware is working fine but there are errors in the programming and software that prevent the system from functioning properly. FND can manifest with a wide range of symptoms and everyone tends to be affected differently.

It's a really long story, but my sister started developing FND symptoms in the second half of last year after a few falls at school after having major knee surgery earlier in the year. Then she got a lot worse after a procedure that was supposed to relieve her pain. She has only been diagnosed with it this year in part due to the lack of awareness of this disorder. She experiences complex regional pain syndrome (from what I understand there is quite a bit of overlap between CRPS and FND and much of the treatment is similar), leg tremors, shaking, jerking and tingling and is currently unable to walk or bend her knees properly. She requires full time care and a rehabilitation program involving psychotherapy and physiotherapy. It has been really tough for my family and I. When she started getting worse, we had to change a lot of our plans and take things day by day.

In creating this thread, I hope to raise awareness of FND as none of us knew much about it prior to her diagnosis. I also hope to dispel some of the myths about FND such as the belief that it is 'all in the mind' or controllable. When my sister was first admitted with her symptoms, some of the nurses said that it was behavioural and suggested she was trying to get out of going to school. We also didn't receive much support from the school she was in at the time because they didn't know about her condition or how to support her. That was really upsetting for us. Additionally, I want to reach out to people who might be experiencing FND or similar things. I just want to say that you are not alone and it's a long journey, but you will get there in the end. Heart

Re: Functional Neurological Disorder Awareness

Hi @WheresMySquishy,

Thanks for sharing that with us. That was very brave. I imagine this must have been difficult for your family to manage. It really sucks to hear that there is a lot of stigma and myths surrounding this disorder. Have you found any resources or support that might help other people who are experiencing this? Heart

Re: Functional Neurological Disorder Awareness

Hi @Taylor-RO, thank you for your response and kind words. My sister's condition has really taken over our lives so it's been really hard. It's really tough for her especially to be a young person and confined to a bed almost all day while she waits to be admitted to hospital.

Another thing that some people think about this disorder is that it is always caused by some kind of mental trauma. My sister's condition started suddenly, escalated quickly and there was nothing major happening in her life around the time she developed it.

My sister found that distraction and her hobbies, such as watching and making videos, writing and drawing, really helped. We have found that distraction changes the kind of tremors she has. Sometimes they lessen when she tries to do a mentally challenging task at the same time. We also found 5-4-3-2-1 exercise (five things you can see, four things you can hear...) really useful for distracting her from her pain.

Some apps by Noigroup, such as one called Recognise, helped her at first. They are supposed to help train your brain to reduce pain and improve function. It's really good because she can do this anywhere and anytime. They can be useful for anyone experiencing chronic pain.

There are also lots of resources online about FND such as this website: https://www.neurosymptoms.org/
It really helped with understanding her condition and helped to reduce the stigma of it. Although my sister attacks of severe leg shaking rather than seizures, we found this to be a really helpful resource: https://publicdocuments.sth.nhs.uk/pil2072.pdf

My sister said that talking to supportive family and friends really helped her. She also found support in online communities because she didn't have to constantly update people on her condition and could discuss things she was passionate about instead.

Re: Functional Neurological Disorder Awareness

@WheresMySquishy thank you for making such a brave and important thread, and for pulling together so many helpful resources Heart

My heart's going out to you and your family right now. I can hear how much you care for your sister and support her in everything you do Heart I can't imagine how tough the day to day of managing everything must be...

Really hope that everyone who could benefit from this amazing thread is able to see it, and that it helps people learn and foster empathy for people living with FND xx

Re: Functional Neurological Disorder Awareness

@ecla34thank you so much for the kind words. My sister is taking comfort from all of the lovely messages.

I really hope this thread helps people. It has helped me too. I hope there can be more resources for people with FND and their families. It was hard for my sister to understand that her brain and nervous system were responsible for her symptoms and needed to be 'retrained'. It is more common than a lot of other conditions yet it's hard for doctors to agree on how to diagnose and treat it. My sister was seen by several different medical professionals from three hospitals before it was finally recognised by a fourth hospital. It's hard to imagine that you can have a sometimes debilitating condition like this in Australia yet it can take months for anyone to help you. As a result of the delays and system failures, her condition has worsened and it will likely take longer for her to recover. I have heard of a lot of people having to go interstate or to other countries to get treatment for FND and CRPS. A lot of people tell us they can't believe how we were treated but I know that there are people worse off than us.

It is so hard to organise things around her care. It has sometimes taken equipment and several people to help her up if she falls as she cannot stand on her own. It can also take her an hour or more to get around and transfer with our help. Some people think that it is controllable and she can just get back to normal functioning at any time but she says, 'If I could, I would'. She would not intentionally cause us to suffer like this. One of the hardest things is that my grandmother has been calling every day in tears over what has happened. The hospital has just organised for some new equipment to come to us which will hopefully make things a bit easier.

I hope that other people with FND can put effort into their rehabilitation with the support of their families and team as a lot of the hard work has to come from them and there is no quick fix or cure. My sister is dreading the rehabilitation process because it is so painful and exhausting for her but is looking forward to getting better.

Re: Functional Neurological Disorder Awareness

@WheresMySquishy  ahh that sounds so frustrating, having people just assume that she can control her symptoms and just get back to functioning like she used to! It's like you said, if she could she would!

My sister has a very different medical condition to yours, but I know she also really struggled with people's lack of understanding and still does. People would say to her things like 'wow, you're so lucky to miss school all the time' and she was like 'not really guys...', and they just... didn't get it, you know?

 

Gosh, it's so far beyond okay that it took so long for your sis to get a diagnosis, and that she's suffering more now because of it Smiley Sad I'm glad to hear she's looking forward to starting recovery though, even though she's scared too about the rehab Heart All the virtual hugs sent you guys' way Heart

Re: Functional Neurological Disorder Awareness

@ecla34  Yeah, I don't think she will go back to how she was before without undergoing a good rehabilitation plan with a good team of people. She tried rehabilitation at one of the previous hospitals but they didn't know what her diagnosis was or how to treat her and were kind of hopeless. It was only on the last day of treatment that another physio, who had experience in this sort of thing but been on leave the whole time, recognised that they should have gone with a different approach to her rehabilitation. It's kind of frustrating that we have to make sure that the whole team is on the same page.

Wow, I feel sorry for your sister! My sister was told something similar. She really liked going to school but now has to do distance education due to the fact that she can't leave the house without an ambulance transfer. She misses her friends and old teachers though. Luckily, she keeps in contact with them. Reminds me also of how I used to have health problems that would get worse with sport at school and other kids used to joke about how I sometimes I had to miss out on sport. A lot of people don't understand the seriousness of health problems or how upsetting it can be to miss out on doing normal things a young person should be doing. Being unwell isn't something you expect to happen as a young person. I feel like my grandmother who is almost 90 has better health than my sister Smiley Sad

Thanks for all of the kind words! It means a lot to us! Heart

Here are some more good self-help resources for FND patients (or chronic illness in general):
http://fndaustralia.com.au/resources/FND-Workbook.PDF
https://fndhope.org/ (this site has a lot of videos, explanations, print outs, etc.)

Re: Functional Neurological Disorder Awareness

@WheresMySquishy Thank you for this!

 

I was kind of aware of conversion disorder, but I'd only seen it referred to as headaches, stomach aches, and going to the doctor "despite not being sick", so I'd never considered it as a possibility.

This is definitely something I'll ask my doctor about if we find nothing physically wrong.

Re: Functional Neurological Disorder Awareness

@Tiny_leaf  Yeah, I didn't realise that it could be a whole spectrum of different symptoms either! I've heard of a man who had functional blindness, which some people can have with this condition. He makes eye contact but has to walk with a cane. I believe his brain cannot process the inputs coming from his eyes. I've also seen other people in the news who cannot speak, swallow, or sit up. There are also people who can have 'attacks' that are like seizures or where they fall to the ground. Before my sister was diagnosed, one of my family members in the medical profession wondered whether she could have multiple sclerosis, but it turned out to be FND.

In addition to the leg pain my sister has from CRPS, she also experiences redness, warmth and discoloration in her legs, also symptoms of CRPS. The area of the pain tends to vary but her knees are always in pain. I think it's because she had knee pain to begin with. She says that she gets a 'burning' and 'shooting' type of pain in her legs and that they hurt a lot to touch or even if a breeze goes on them. It was really hard to see her screaming in pain at the hospitals she went to and when she initially came home. You could hear her down the hall! None of her current medications make her pain lower than 7 out of 10. When she first went to hospital, she could still walk a bit, so sometimes it makes me angry that her specialist at the time didn't pick up on her conditions and handed her over to people who were more experienced in it before she quickly got much worse.

Re: Functional Neurological Disorder Awareness

@WheresMySquishy ouch... I'm lucky in that my pain's usually a four or five out of ten unless it spikes, a constant seven out of ten sounds awful...

 

And I've heard of them, I think they're called non-epileptic seizures. I've wondered for a while if I've been having those, so it was interesting to see them on the list of symptoms, along with a heap of other stuff that was previously dismissed as just something my body does.

 

And that sounds horrible, I can't believe it took them so long when her pain was so bad!!