Functional Neurological Disorder - FND Hope
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Struggling with FND diagnosis

Hi everyone, I’m very glad to have found this site! I was diagnosed with FND at the end of January so this is all very new to me.

To give you some background I have a very complex set of medical conditions- I have Cystic Fibrosis and underwent a successful double lung transplant in 2012, so I am immunosuppressed. I also have diabetes, high blood pressure and various other bits and peices! In July this year I was in Spain on holiday and suffered a tonic clinic seizure due to my sodium levels dropping very quickly as a result of me over hydrating. After spending 5 days in hospital there, on return to Scotland I was admitted to my CF ward for investigations. My symptoms started then - dizzy/fuzzy heads/shaking, headaches, tingling, numbness, sweats, chills, vision problems, the list goes on! All were put down to anxiety and I started seeing a psychologist, threw myself back in to running my small business as well I could, each day was different and I battled on thinking it was ‘just anxiety’ about the seizure. Anyway, long story short, I saw a neurologist in jan who diagnoses FND, things have got worse, I’m suffering from extremely bad fatigue amongst all my other symptoms. I’ve asked to be referred back to speak to a neurologist again as none of the GP’s I’ve spoken to have any clue about it.

Sorry for the huge long post, and I know there are people in worse situations than me, but I’m finding it very hard to deal with this, having regained a ‘normal’ life after my transplant and now dealing with this.

My question is, how can I help myself.. what should I do now... any advice... please?

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Many hugs and sympathies. First thing first - take it very gentle with yourself - you have a serious illness - treat it seriously or you will burn out energy-wise and make yourself much worse. Really good information on pacing here - stickmancommunications.co.u... - but I can assure you it takes a while to work out what your system will allow - and what will crash you - again be gentle with yourself about this is takes a while to work out what your brain can cope with - and it will vary day to day.

Also regarding neurologists - unfortunately only a few of them have much clue - so ask to see someone who specialises in FND. Good luck - its an interesting journey you've started on - but there's lots of us here for support - and we've been there and gotten the t-shirt - you can survive this well

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Hi as you live in Scotland you may want to ask for a referral to Dr Jon Stone in Edinburgh who specialises in FND.

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Hi Cookie thanks for your reply- can I ask to be referred to a specific neurologist, and who do I ask? Currently waiting on a follow up appointment with a neurologist at my local hospital.

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you'd ask either your GP or the neurologist (if its not too long to wait) and say because its a rare diagnosis and few know how best to treat you'd like to see Dr Stone. You have to be quite assertive - have someone with you to help if possible - but you are entitled to another opinion on the NHS

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As I understand correctly, he has FND himself. I saw a conference he held on fndhope.org

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Thanks for your reply Katherine, I’m certainly finding that things vary for me Day to day, and what I can cope with.i’ll have a good read of your link. Thanks for the words of encouragement- I have been through so much already but this is really flooring me- both physically and mentally, up until all this happened i had a really positive attitude but this has really knocked the stuffing out of me 😕

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Know that feeling all too well - it does impact a lot on mood as well - and that plus the fatigue zombies can really make you feel awful - basic CBT (cognitive behavioural therapy) skills are essential - if you don't have them yet ask your GP for a referral for IAPT counselling. Also Feel the Fear and Do It Anyway book is also very good - gives a basic intro to CBT etc too. MAny many hugs

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For the fatigue, I recommend taking a week off from work so that you don't feel like you're pushing yourself. Near the end of the week and into the future that follows, try to increase your activity very, very gradually. Here is a recommendation for people who have FND and chronic fatigue syndrome: jnnp.bmj.com/content/suppl/...

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Thanks Pickleweed, I wish I could take a week off, but as I’m self employed I’d struggle financially. I’ve limited the amount of work I’m doing so that I’m only working part time, but somehow I manage to find other ways to fill my days! Evenings are generally much quieter and are spend lounging in front of the TV , so I am resting up to a point! I’ll have a good read of your link, thanks so much for your reply.

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You have come to the right place…. everybody SO supportive.

I was diagnosed with FND last autumn after being admitted to an acute stroke ward last February with what looked like a stroke. FND sufferers will recognise the symptoms – weakness down one side, slurred speech, loss of speech, unable to swallow, mouth drooping one side, no co-ordination, unable to walk. Anyway, after eleven days in hospital in a ward full of elderly passing away around me and MRI’s, CT scans, heparin injections, liquid diet, being catheterised, I was discharged with NO diagnosis as the scans were clear (if only I had known about an fMRI..!!).

It was only my husband and daughter fighting to get an appointment with a neurologist did we eventually get answers after six months of searching. He diagnosed FND – but we had never heard of it….!!! Thank goodness for FND Hope. Luckily I only struggled for those six months until a diagnosis. Just to try and walk was a major effort and to cut up my food and find my mouth a real challenge…and all the time not knowing what was happening to me, after being very active and used to multi-tasking. No support from the doctor who referred me to the practice mental health nurse who had never heard of FND so how could she understand what we all experience…? The doctor told my husband we would have to give up our business as his time would be needed to care for me.

But there can be light at the end of the tunnel….. I’ve found that ‘pacing’ works… I’ve had to learn that I can no longer cram in all the things I used to do and have to take each day as it comes. If I do something one day then the next day I rest. Having always been so busy it’s hard not to feel guilty when all you can do is either go to bed and sleep for hours in the day time or rest up on the sofa. I’m now accepting of the brain ‘fog’ and the memory loss. I can now walk the dogs most days, using walking poles and slowly increasing the distance, and it’s great to be outdoors. It might mean I can’t do the ironing but never mind, no big deal. I try not to get anxious if people around me are being negative.

I realise I am lucky as there are so many out there with symptoms so much worse than mine. I know that if my voice starts to slur and I’m having difficulty swallowing it’s a warning and time to slow up, put on the gentle music, dim the lights (light and noise sensitivity another FND symptom), light the candles and chill and with luck I’ll not ‘lose my legs’. I’ve not beaten it as some days I forget how ‘rubbish’ I feel when I forget to ‘pace’, but hang on in there…… I know at the moment you don’t feel much like laughing but I can now laugh, rather than get frustrated and embarrassed, when I have a conversation and the words come out wrong; yet just another annoying symptom with this FND…….

There is some excellent research going on out there on FND so we’ll get the answers in the end. It’s a problem with our brain’s ‘software’ not ‘hardware’ as with Parkinson’s and MS so we have to take it gently and re-train our brains.

It’s a balance between what we need to do, what we want to do and what we can do.

Look after yourself as you have been through so much.

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Thanks for your reply Bren, wow, what a journey you’ve been on, and I take my hat off to you, it sounds like you are a very positive and determined person, and have been through a much tougher time than me, for sure.

Can I ask how your FND was finally diagnosed? Did you have brain scans/MRI’s carried out to rule out other conditions?

I wish I knew how to retrain my brain as you mention. My other medical conditions are all treated with medications, there are clear cut answers to these problems, but FND is so different and I think that’s why I’m struggling to cope and get my head round it all. Take care.

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I’m a good six months along the line with trying to work out a coping strategy so it is early days for you. It’s the crippling fatigue that is hard to cope with so I understand what you are going through. In the early days I had to have help with dressing and washing and having my food cut in to small pieces and now, with careful planning, I’m able to walk the dogs, be it with walking poles – something I never thought I would be able to do. I can even manage now to follow a recipe. It takes some concentration and, having left out a couple of ingredients in the early days, I now measure out everything before I start… but, importantly, it’s realising that this is all I will be able to do for that day and that I will feel totally shattered at the end of it. Then, it is building slowly on this and gently increasing what you can do. It’s a good idea to keep a diary because then you can look back and see how you are doing and what improvements, however small, you are making.

You must take care of yourself, especially after all you have been through. It’s exactly as Katherine and Pickleweed say – gentle, slow progress. Taking it slowly and 'pacing' what you do will help you re-train your brain. I know it seems impossible at the moment, but not pushing yourself too hard is so important. If you have managed to cope with all your past trials so well you will, I know, manage this one…..

My FND was diagnosed by MRI’s which showed no lesions (Parkinson's and MS), lumbar puncture (ouch…!!), and Hoover’s test.

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I was advised that it is very difficult if not impossible to retrain your brain yourself and that specialist therapeutic input is required for good progress.

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Thank you for writing your post, it gives hope. I have also in the past battled with stroke like symptoms, seen a number of Neurologists. Having lost a lot of hearing and have angle closure in my eyes, my balance is terrible. Add a dash of Arthritis and it’s hard to distinguish what is what. Tiredness overwhelming, lots of tingling and muscle twitching polished off with Artrial Fib. My local neurologist talks of non organic causes and functional causes and one asked if I know of anything that may have caused it, which amazed me. There is a shining light in my journey, we finally had a referral to London Hospital who are putting me into the Genome 100 project, where my genes will be shared and kept even after my death as they do believe it’s a rare Disease. Wishing you all well in your own journeys.

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Hi Brenn,

I've noticed in your reply that you mention noise sensitivity.

To what degree does noise trigger your symptoms, as it is a major trigger in setting my wife's symptoms off, especially when people bang.

Many thanks

Tony

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Luckily, Tony, noise is not a major trigger for me; just a nuisance, along with the tinnitus. I just watch where I am and if it gets too bad, say in a room full of people, I excuse myself and find somewhere quiet. So sorry to hear it is a major trigger for your wife; noise sensitivity makes you realise just how noisy people can be....!!

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Thanks for that Bren.

Best Wishes to you!

Tony

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I developed FND in February, 2017. I've spent the last year doing exactly what you're asking for help with: helping yourself. Unfortunately, my experience with this disorder is that is about all you're going to be able to do. There are some good doctors out there who are well-educated and even poorly-educated on FND, but most don't care to know. I had a team of three psychiatrists laugh at me to my face when I explained what was causing my spasms.

That said,

1) Rest! When I first developed FND, I could still do so, so much. A year later, my day consists of a shower, rest, meals and bed. Although I get out once a week, it's exhausting and takes me days to recover. At the beginning, I was still busting my hump to get to work. I was working three jobs, in a wheelchair, seizing several times an hour, sometimes blind or mute, but always with impeded speech. This led to several nervous breakdowns with hospitalization, and after each one, I could do less and less. My point being, watch your energy levels. This disorder saps your energy, and you'll need all you can to deal with doctors, therapists and even more importantly your own life, more often *after* the interaction. In my experience, I don't feel like it's possible to build up a "reserve" of energy, but rather *learning* how to identify "tired" and rest when it comes on. For me, at least, I was a very overly energetic person, hopping from crisis to crisis, and to do that, I apparently subconsciously trained myself not to recognize "tired" or "pain" or "sick." So, when I say "Rest!", I mean rest with intent. Learn from it. Use it to *be able* to rest when you need the energy, because it's hard to rest when your nervous system is out of control.

2) Build An Advocacy Support System! I suffer from some mental illnesses and past trauma that make me cow-tow to doctors. Their "superior presentation" makes me drop into an infantilized state. I used to be able to deal with it, but with the onset of FND, everything is more intense, including the incapacitating aspects of my anxiety and depression. Things got to a point last year when I had to start taking my fiancé to appointments with me. The confusion that comes with FND along with any mental health co-morbidities creates a lot of tension for me when interacting with doctors. I'm also a woman. These things do matter. When my now-husband is in an appointment with me, the doctors talk to *him*, but at least there's less confusion. In a way, it's not unlike distraction techniques for calming tremors: by getting the doctor to pay attention to him, they actually do their job in working with me.

3) Don't Compare! Anything. Don't compare your pain, your experience or, most importantly, who you used to be. I think I've gotten past a lot of the grief of losing the person I used to be. The emotional pain comes up when I interact with people I used to know, but that's becoming more and more rare now. It made me a sad when you said, "I know there are people in worse situations than me," but it's not true. Ill is ill. You had a double lung transplant! It makes my hip replacements seem like a trifle! But I think this is like holding the door for someone; we like to do that, but you don't have to hold the door for anyone. There's no one fighting to get ahead of you in this particular race. Take care of yourself above all else!

4) Find Out Now! When I got sick with FND, my relationships disappeared. Everyone ran for the hills. I've talked to many people who have been sick, and who have also recovered, and they all said the same thing. This can be a dark time, and it's good to have friends who can help. Find out now who you can count on, before you need to count on them!

5) Accept. Radical acceptance is ultimately the only way I can deal with this disorder. Things change all of the time. Symptoms come on in variable patterns, making it hard to plan for much. For me, I had to stop looking at FND as a fight or struggle and instead as a job. This, caring for myself through FND, is what I do for a living now.

6) Occupational Awareness And Pacing Change. Pay attention to your daily life. Are you doing what you need to do? I don't mean, "Do more!" I mean, are the things you're doing necessary for the quality of life you want to have? For example, I don't clean my house much these days, though cleaning was once therapeutic for me. But I still need an outlet for those things, that takes time and creativity, which takes focus and energy, and I don't have much of that these days! So, pace yourself if you make changes to your life to accommodate FND, and consider how you'll replace them. For me, I take a bath instead of cleaning the house: it helps my arthritis pain, and it helps me relax. All the same, there is grief in this process because it focusses attention on what's being lost *because* of FND. I'm slowly shifting my activities away from "productive activities" toward "soothing activities," even if that's just a reframing. For example, when I started to decline late last year, I starting thinking about selling my art: I started drawing and painting when I became ill (the "Do more!" mentality), but I've settled on just *making* art. FND is exacerbated by stress, so just letting myself consider the possibility of creating art without the obligation of financial exchange turned it from a stressor into a coping tool.

I hope this is helpful to you. We're all cutting new trails, I think, with this disorder. However far into the jungle we find ourselves, we howl at the same moon.

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Hi just want to let you know your not alone I have presently been diagnosed with FND but I think it's a cope out when then. they run out of idea's

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