Functional Neurological Disorder - FND Hope
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Just Diagnosed with FND

I was just diagnosed with Functional Neurological Disorder in the hospital. I had gone to the ER because I couldn't hold the book I was trying to read. I've been having leg weakness for years but it's gotten worse and now is in my arms too.

So yeah, none of the tests showed anything but I'm exhausted all the time and it's so hard to move I'm having trouble changing clothes. Neurologist says weakness is "profound." But the doctor seems to think all they can do is physical therapy, which I've been doing for six months (I was in the hospital then too.)

How do people handle depression brought on by their symptoms? I can't really go out and do anything social right now.

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Hi Jesdue, me too diagnosed about 2 years ago, all I can say is follow the advice of your Physiotherapist and maybe see a Psychologist to help you with the depression. Have you been on the FND site? fndhope.org/ very good for sufferers, professionals, family and carers. i am happy to share my experiences with you if it will help you.

What part of the planet do you live on?

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I'm in northern Virginia. I already see a psychiatrist for schizophrenia. Which is problematic because a lot of people assume my physical symptoms are a delusion. I'd love to hear people's experiences. I feel so hopeless right now cuz the doctors don't know what to do. I'm really struggling with the activities of daily living.

Also, do you guys have any recommendations for wheelchairs? I have a power scooter, but I figure I should use a manual as much as I can so at least my arms get exercise. I'm currently using a standard hospital wheelchair and it's way to heavy and bulky for me to lift and get into a car, so I have to keep borrowing my father's ramp van. I need something a little more portable.

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I love Northern Virginia!

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Well Jesdue

You have taken a good first step, by posting on here. We (here, us, on this site) actually KNOW about FND and the reality of the dis-order because we live with it 24/7. I have since November 2016.

You can always come here for support/advice/a rant/a shoulder etc.

Depression is a bummer! I have been bipolar for most of my life, well at least the last 50 years, although I have been wonderfully depression-free for the last five years (even with the ups and downs of FND!) So I know first hand justr what what depression is like and how blooming difficult it can be to motivate yourself to do anything! My 'worst' spell of clinical depression lasted about ten years. I lived with it and despite of it. Not my greatest recollection. However I did not let it stop me from carrying on.

There is plenty of self help available. Some of it good and productive, some less so.

An important element is to find something that you enjoy doing and just do it. Be positive.

Take one step at a time. Find a true friend. Use yoga, mindfulness, chanting, prayer, howling at the moon. Be careful with the last one, some narrow-minded people are apt to mis-understand!

A confession: I am very bad at all of the above and falter and slip frequently. So be ready for the bad days but prepare and head for better times.

Have you contact with any family/friends close to you? Do you link up on-line/skype etc.

If you can't go out and do the social thing, see if you can attract the social thing to you.

I find going out difficult because occasionally I have difficulty feeding myself, in swallowing and even speaking. These together conspire to dull any aspiration that I have to party. Also, I (usually) cannot drive, so I have to rely on my darling, long suffering but supportive wife to ferry me places. I choose not to go to (for example) my Buddhist discussion or study meetings (did I mention that I am a Nichiren Buddhist?) because I do not want to add to her already very full support role. I have accepted a back seat in this respect although I am able to maintain my (very uplifting) Buddhist practice by myself and with fairly regular contacts with my fellow members.

Does that give you any insight? You will need to look within yourself and you will find an answer. Giving in and giving up are not options. Personally I am convinced that I WILL beat this dis-order. I am also sure that we, the sufferers, may provide the professionals with the insights necessary to understand the causes, triggers, perpetuators and, ultimately the cure/s of the dis-order.

FNDHope can support and assist. You can recover. Depression can be overcome. Social interaction is a must, if you can manage it.

(I just saw the reply from FNDstuff. I endorse his/her comments, 100%.)

Where are you?

Robert WT

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Wow! Thanks! Is FND really that disabling? Shit.

So I live with my parents (lame cuz I'm 26 but whatever,) and they're both mobility impaired as well. Dad uses a mobility scooter, Mom uses a walker, but she needs a hip replacement so we may be all three non-ambulatory at the same time. Is there anyway to get a caregiver or something? I'm on Medicaid.

I have friends, but none of them visited me in the hospital, and most of them haven't visited me since being home. I guess I expect too much.

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Hi Jesdue

Hell's teeth - you won the health lottery too!

I am in Ireland, you know the 'old country', the so-called 'Emerald Isle'.

Unfortunately some aspects of the health system here haven't completely arrived in the 21st Century. Some are bloody excellent, no doubt at all. I owe my life to Irish doctors.

Neurology is not one of the 'better' represented disciplines, either in skill-set or numbers. Social support is also very limited. I am fortunate to have a carer who comes in to help me with having a bath, Monday to Friday.

You are in a different country, and from the terms that you use, I think its the USA. So you will have to do your own local research into caregivers etc. The FNDHope Community in the USA should be able to offer some assistance.

Yes. Shit. FND can be that bad. Just have a look at some of the posts. I am relatively lucky as only my walking and fine work with my hands (and speech and possibly my hearing) are affected. I have had some specialist physio (in London) and this has improved my life, but I am not cured YET!

Friends? Yes I remember friends.

Preconceptions? Oh boy! Having a diagnosis of bipolar disoder, as with schizophrenia I guess puts that condition front and centre stage (of mind) before you get to any serious addressing of another illness or condition. In ER/A&E when asked about pre-existing conditions, if I start by saying 'bipolar' the shades tend to come down. The assumption is that here's 'mad little Robert having a manic day' and FND are oly three letters I've never heard of so we will stitch up the cut, x-ray and bandage the wrist and send him away. Again.

But take heart. This does not always happen. There are triage nurses/ doctors/ GPs/ physios etc who are not only aware of FND (or at least some degree of neurological disfunction) and who are willing and eben able to help and moreso to try and understand - from you point of view.

OTOH, here in FNDHope we DO understand. Because we have worn the mocassins and we have walked the mile.

Shit happens. OK. It's a truism. It is not an excuse for turning up our toes.

So please keep in touch. Have a rant. Ask for help. Keep doing so. If you don't understand, someone else just might, and be able to explain.

You are a valuable human being. You are truly mazing, not the least for sharing on this site.

Well done.

Talk again soon.

Best regards

Robert WT

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Hi again.

neurosymptoms.org is a very highly recommended site as a resource. Much space given over to FND.

OK?

RWT

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This has been so helpful! I'm in the USA. I hope my FND dosent progress too much further. Am I gonna ask my mom to bathe and dress me? I have too much pride.

Do you guys have any recommendations for wheelchairs? I'm thinking a good lightweight one would help me get out and not be so depressed.

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Free Woebot app for depression. Walmart.com for inexpensive wheelchair.

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Thanks, I checked out Walmart.com. I was looking for one of the ultralightweight ones, which they don't seem to have. My FND manifests with extreme weakness. I want to use a manual wheelchair as much as possible to fight the weakness, but I can't lift my current wheelchair because it's too heavy. Also it's my dad's spare so I really need one of my own. Preferably something that could fit in the back seat of a sedan or else in the trunk.

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I have dystonia and fnd plus ms they are all in the same family of diagnostics I don't get depressed because you are breathing and every day is a bonus. I try to stay positive as much as i can if you like reading like I do try audible books head phones on sit back in my reclining chair and listen to my book.

Don't think about what you have got think positive. Meditation is good as well, I hope this helps from Cheryl

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