Recent FND diagnosis

[Grannycook]

I have joined this forum to try to discover more about FND. My beautiful 35 year old daughter has been diagnosed with FND last week. It is a frightening time.

[JulieG88]

I’ve not long turned 30 and one month later, life brought me FND. I’ve been living with it for about 7 months now. I hope your daughter is doing ok x

[Grannycook in reply to JulieG88]

I think that my daughter is still in shock, to be honest. Have you noticed any of the symptoms improving since diagnosis? Are you being helped with physio? referred to neuropsychiatry? I am so concerned that she receives all the help possible! x

[JulieG88 in reply to Grannycook]

I don’t wish to cause you further concern so please don’t take it that way, but equally I want to be honest. My symptoms have increased, what I started with seven months ago isnt quite the same as today. I would advise if your daughter is on Facebook, to join the FND hope support group and you of course, that’s the best support you’ll ever receive. Whilst FND is the second most diagnosed thing in neurology, there is very little knownledge about it in terms of effective treatment. I am under neuro-psychiatry, I’ve been referred for CBT, speech therapy and physio. I’ve had both speech and physio so far and as they are not tailored to FND, I was discharged from speech after one visit with a leaflet and ok, pshyio, she knows nothing about FND but is prepared to learn and work with me. CBT, that’s a six month waiting list where I am. I’m unfortunately outside the catchment area for most of the treatment I need, something you may come across a lot (medical politics). Be prepared to meet many doctors and many neurologists who don’t want to help (I’m presuming you’re in the UK, if not it may be different), on occasions you’ll meet the odd one who understands but equally has no idea how to treat you. As difficult as it is, keep stress free and be calm when approaching FND, those two things are big triggers for symptoms. You will find there are very little resources for FND, you may find many upsetting and stressful doctor visits, you may feel like banging your head against the wall all to often. When you join FND hope you’ll get a good sense of what to expect and again, how amazing that group will be talking to others with FND and learning how they deal with it.

I suffer with non epileptic seizures, speech loss, blurred vision episodes daily, loss of limb strength, crazy sensations like burning and god awful brain fog. The longer I’ve had this, the more I accept what I have, understand no one will cure me, they may help me control or manage but this is something I’ll always have. I still manage to work, so most things, I just get tired quicker and learn I can’t do everything I used to.

It is a scary thing as it’s the unknown, but I promise given time, you learn to smile x

[Grannycook in reply to JulieG88]

Thank you Julie for being so honest. I really feel for you - this sounds truly horrendous. I have looked on FND Hope. I will take your advice and join the face book group, and encourage my daughter to do so too. I really appreciate your detailed answer and your honesty. God bless you. x

[Grannycook in reply to JulieG88]

Thank you for your detailed reply. I really feel for you!! I will take your advice relating to FND Hope Face book. Thank you - I do hope that you are really helped.

[thinkin]

Hi,

I'm five years in now. It's only been just over a year or so that I've started to tackle it head on. I have made progress, but it's taken a lot of researching and finally learning to change the way I fight. I've certainly improved and although I am house bound most of the time I feel better in myself and I'm even getting more frequent "quiet" times. This is when the tinnitus and fuzziness in my head goes silent.

I was diagnosed with a functional movement disorder with functional neurological symptoms after a year of searching for an answer. Initially I was put on amitriptyline 10mg and I flipped back to normal - more neurotransmitters can help functional movement disorders, though they don't know why. I returned to work and started to do too much too soon and so I had a major relapse. I had flu a couple of years ago and that put in a place where it was difficult getting to the loo, bed bound. So my symptoms have fluctuated. She can get better, but she can get worse. It all depends on how you handle it.

I'd advise that she and anyone caring for her gets a flu vaccine as soon as possible. My husband was left with CFS with the same flu that left me bed bound - not good. Flu vaccines are available on the NHS for those disabled and their carers.

We tend to be high achievers. The ones that dig down deep and keep going when others have stopped. We generally do too much but think we are not. One thing I will advise you to get through to your daughter is that she cannot push through this. Effort will only make her worse. If you have the fatigue the prognosis is worse and you have to be so so careful.

FND physio is generally offered to those without fatigue. This is because the physical exertion can make you worse if you have fatigue. FND physio can help a lot if she is able to have it. In the UK it is about a year waiting list. There's a physio trial going on at the moment at St Georges NHS Trust, London for newly diagnosed patients.

So the key is that there is no panacea. There may have been one incident that brought on the FND, but this is probably more of the straw that broke the camel's back. Some people cannot recognise this and some can. Everyone is different and the treatment needs to be as individual as each one of us. Saying that there are commonalities amongst us.

The FND Hope website is a good resource, but difficult to digest if she has the mental fog. Maybe if you take a look and break it down for her. My mental fog contributed to getting in the way of see my situation clearly. Mental fog is why I tend to write in small paragraphs.

Key to a chance of recovery or improving quality of life is pacing and optimising. It's more difficult for women to pace than men as we have hormones to contend with. Mapping where she is on her menstrual cycle will help her plan her activity level. Staying within 75% of what you can comfortably manage is difficult. Especially as it's easy to think "If I do that I won't get much done". It really interferes with your life, but it's best to take is seriously and reduce the amount of activity and have a chance of getting better than to be brave about it and push though it. If she's unsure she has the energy to do something then the answer is don't do it. Sorry no breaks for birthday, Christmas, weddings and any other celebration.

I have a bad habit of bargaining when it comes to pacing. I've had to gradually learn and the hard way too. Any infection can worsen symptoms, no matter how small. If she is feeling ill, then that's because she is. FND can worsen before the full infection can make it's presence known.

The optimising part takes a bit of rummaging around the internet. You may have to help her with this if she has brain fog. We need a higher level of B12 and D - over 500. A doctor will tell you "normal" - ask for the actual levels. I have gut issues, like many with FND so I take mine as sublingual sprays so it goes into my blood directly. There's plenty on nutrition on the FND Hope website.

The rest is tackling each other aspect of her health to an optimum. That is things like thyroid disease which has it's common deficiencies including vitamin B12 and B6, gut issues cause problems and are common amongst us - drugs like proton pump inhibitors can cause deficiencies. Migraines can happen with or without a headache. Sleep hygiene is important - if she's having sleep problems then there's CBT available on the NHS and a lot on line. Every little thing.

Distraction is also a useful tool. Even she can't do the physio she can distract herself. When she was examined by the neurologist she was probably asked to do a task like take 3 from 100 while she was being examined. This is because distraction stops FND symptoms. It depends on what she finds she likes. I use maths and puzzles (it doesn't matter if you get everything wrong, it's the distraction that's key, so nothing she can do too easily), crafts, sometimes singing. Anything that absorbs all her attention.

Have a nosey around the FND hope website. There's a lot on there so don't overwhelm yourself. Maybe tackle one or two things at a time to begin with and build up. Reassure her that she will have set backs, just review and make any necessary changes and move on.

Yikes. I've written war and peace! Sorry if you are still reading. But I hope this helps. Good luck finding your answers. You are not alone, your daughter is not alone. xx

[Grannycook in reply to thinkin]

This is so incredibly helpful. I really appreciate the time that you have taken to reply. Thank you so much - xx

[thinkin in reply to Grannycook]

No worries, I think I'll end up writing a book! xx

[JulieG88 in reply to thinkin]

Amazing reply and I second the b12 spray. Amazon have a great one. It’s not going to cure but it certainly does help with the brain fog.

[Justdrea81]

Hello, I don't have time for a huge reply, but here is my story so far. I was diagnosed with FND in the middle of May. It looks like in my case my low B12 contributed to these symptoms. I also got food poisoning right before, so I wonder if that set me off as well.

With the right balance of gabapentin, PT, OT, and getting my B12 straightened out, my symptoms have stabilized or improved. I didn't go to neuropsych because I didn't see the point. My depression has been well controlled for over 10 years, so I personally think the idea that this is triggered by an emotion response is BS. Especially since I've been getting better without neuropsych.

I really started to get better when I started envisioning my brain as a PC that didn't get all of its software updates. The neuro paths are still there, I just need to relearn how to use them. Accepting this was probably the biggest change in my recovery. Also, like others said, she can't push past her tolerance level. It took me quite a bit of time to figure that out. If I don't, I end up basically bed ridden for 4-5 days.

I am a QA engineer and fortunately I work for a company that is flexible with time for doctor appointments, and allows me to work from home. I started going back to work about 8 weeks after the diagnosis. It was rough, but it has slowly been getting easier.

The one thing that has really helped is meditation, as hippy as it sounds. There is light at the end of this, I promise.

[Grannycook in reply to Justdrea81]

Thank you so much for your helpful reply! Your message has been so uplifting. My daughter is QA for a charity, and like your work role, it is demanding. I can only thank you for taking the time to write. Bless you xx

[bap379]

I hope that your daughter is ok. I have included two website links that might be able to help you. I also suffer from FND and it can be frightening.

neurosymptoms.org/

fndhope.org/registry/

Good luck xx

[pickleweed]

There is a book called "Functional Neurologic Disorders" that is good but it costs about $220. I bought the Kindle version of it so that I could listen to it be read to me by Alexa/computer.

[Didoleg]

Dear Grannycook

My name is Diana I am 51 years old I was diagnosed with FND three half years ago by Professor Mark Edwards in London since my diagnosis my symptoms have got a lot worse. At first I was just getting spasms in my face and head. Now I’m affected in my face head neck arms and my right leg doesn’t work properly. I struggle to walk any distance I use a crutch stick but it is becoming worse I no longer feel my toes or my heel on the right foot and I’m unable to hold my leg up. My arms just won’t go up so dreeing and undressing is difficult.

It is very difficult to find any support in the community physio just give up as the don’t know anything about it.

It’s very important to stay positive do what you can in the gym yoga etc. Eat well and rest. I was a Marie curie nurse for 20 years and this has been taken away from me. No support from Marie curie at all. Not even a thank you. I know it’s a long hard journey and I wish your daughter all the best. I walk about like Pinocchio with his strings x ❤️

[Mic67 in reply to Didoleg]

Hi Diana, when you say your arms wont go up, do you mean your shoulders are painful and stiff? I have this too but am seriously hoping this is nothing to do with FND.