I was diagnosed with FND four years ago this month, and still can’t come to terms with it, I was just getting my life back on track after bringing up my children to an age where I could go back to work, then one night my face started dropping thought I was having a stroke, four years on I still don’t understand how I developed this illness with many other symptoms that go with FND I also feel like a burden to my family I feel like I’m trapped in a bubble that I can’t pop, as many of you it’s turned my life up side down I’m so low and don’t know how to pick myself up has any one got any ideas or tips to help me I’m at a loss to pick myself up and try come to terms with it, It would be much appreciated maybe I won’t feel so alone now I’ve just joined this site
Lost : I was diagnosed with FND four years ago... - FND Action
Lost
Hi there, you’re not on your own I know how you feel I too can not except the FND diagnosis tears roll down my face as I write this it’s such a cruel debilitating illness.
I have a functional gait disorder so I usually look ridiculous when I walk and sometimes have to use a chair I also have a functional tremor in head, arms and legs so I feel I just look stupid and people do look, sometime these things don’t happen it’s so unpredictable! I have a number of other things also happening to which the neurologist commented on being quite a list! as I had wrote it down.
I am waiting for some specialised physio and have been put on a different antidepressant mirtazapine( I am on citalopram at the moment )and clonazepam for the tremor but can only use that max 3 times a week! What help have you been offered? Sending big hug x
Hi there chocolots thank you so much for your reply the same as you I’ve just broken down reading what you had to say and are going through, your so brave going out and letting the world see you have this horrible illness,please don’t feel stupid it’s not your fault hun you never asked for this pig of an illness, I’ve shut myself away a lot as I’m afraid what people may think or say I was so out going and independent before, I’ve done the five week CBT at a hospital in London there was five other ladies there to all with different symptoms, I found only the physio side helped me as I’ve got vertigo too, my medication has been changed so much at the moment I’m on propranolol for the migraines as I suffer them a lot, and just started on Trazodone for the depression I was on mirtazapine but it didn’t help me I just put lots of weight on with it but it may help you better we’re all different with meds, I have real bad trouble sleeping and suffer with restless legs and insomnia now also so, I’m on ropinirole to help with that, but the face and neck attacks as I call them are very painful ( like the stroke advert on tv but more intense) they can last for ten minutes or over half an hour I might just get one but can go up to twelve a day, like you I get body tremors also my hands don’t work properly i can’t grip or hold things at times and pain all around my body like needles being shoved into me, still waiting to get pain meds sorted out. Last year the hospital told me I have probably got this for life which was even more devastating for me as they said some people recover from it and some sadly won’t I think that’s why I struggle so much to come to terms with it, I feel like I’ve been robbed of my independents and a burden to my family I was the glue to the family and now I have to rely on my family it’s so wrong. I’d never heard of this illness before getting it, had you heard of it and I’ve never seen any one with it other than the five week CBT program in hospital I went on. The physio will help you it helped me, have you tried the CBT yet. A big fat hug coming right back to you 🤗
Hi there, thank you for such a heart felt reply, can’t reply properly to yo yet as heads is not working as I would like! Don’t think I don’t care, thinking of you x
Hi ya, sorry to read your not feeling well I hope my text wasn’t too overwhelming for you, if it was for that I’m sorry it never crossed my mind that you don’t care bless your heart, same as you my day hasn’t gone the way I was hoping, just rest as much as you can and thank you so much for your your replies my thoughts are with you also xx
Hi there, hope you are doing ok 
so sorry you have been suffering so much. I keep being offered CBT too but really can’t see how this will help, glad the physio helped you hopefully I will be able to get some at some point. I am not doing too good on the Mirtazapine and I am putting on loads of weight too it’s just cruel!
I too get the face attack’s but a lot milder it must be really distressing to have them as you described. I get the sharp needle pains too that can occur anywhere I hadn’t mentioned them to anyone so it is reassuring that it’s not just me.
I have been told that I might recover but I really don’t see how, it’s not that I am being negative I am just being realistic.
The most difficult thing is losing independence it’s just so upsetting the simple things that I took for granted are no longer an option. I know how it feels to rely on family and the guilt that it make us feel when we want to be the carers not the other way around.
I have never heard of this illness before, neither had my poor dentist that a saw the other week I had a huge attack on the chair I looked up to see the light violently shaking and the table attached to the chair was rattling with all his tools in luckily I did see the funny side to this 😂
He just looked confused!
Take care xx
That's happened to me at the dentist with me having no diagnosis I find it really embarrassing like I'm a complete freak. They never say anything to me, but I see exchanged glances of wth! They do though know I've been critically ill in an induced coma & am still after over two years not yet fully recovered. Maybe I never will be, but at least you survived is what I hear a lot of from other people. I'd have happily not woken up, I was in heavenly bliss free of illness, stress, sadness, anxiety, depression & bad memories and filled only with the purest love found nowhere in humanity on this earth. Love on earth is always tainted with personal dislikeable traits. There was none of that interference in the love I was filled up with where I was. Leaving that behind has left a serious gaping wound of overwhelming loss in my life that can't be filled as that kind of love just isn't found in humanity on this earth.
Hello, I also had the shaking experience at the dentist, I had to go 3 times in 2 months and it happened each time. On one occasion the dentist escorted me to waiting room to make sure I got there!! Everyone kept staring as I couldn't stop shaking. Even husband looked a bit alarmed. x
Sounds like you and others have Bell's palsy, lupus, plus essential familia tremor.
Personally I believe that we need face to face and voice to voice contact. Being online is great, but there are times we need to be able to 'talk' to someone who gets it'. Understands. I spoke to my FND treating Professor about this, and asked if she thought it suitable to make 'phone friends'. I got the idea from working online, and making connections all over the world, via Skype. Sometimes a cuppa and good chat really is the answer - Those with FND can be so isolated, and liek yourself, I am older, have raised my children, done lots of stuff - and then been diagnosed with FND at age 55. After which i was promptly told, it has been the reason for so many challenges throughout my life. Perhaps consider making friends online. I hope this helps you. Happy to be a friend btw!!
