Functional Neurological Disorder - FND Hope
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Depression & FND

My partner was diagnosed with FND around a month ago. He’s has quite severe depression and FND was diagnosed as an onset of this. He’s having quite severe anxiety & panic attacks (we’ve been told getting this under control will alleviate some of his FND symptoms which we’re trying to do).

I’m looking for help & support that may help him firstly both come to terms with the diagnosis and perhaps give how us and him help on how it can be managed. Myself and his family could really do with some tips on how to manage both the depression & FND too so we can help support him properly.

Like quite a few of the posts i’ve seen here, he’s been diagnosed and the discharged to just ‘deal with it himself’, we’ve had no steer on what we need to do or not do, to help him and are kind of navigating this blindly. This is terrifying for him, and us. If anybody can give us any help to understand this a bit better or point us in the right direction of how we can best support him, it would be appreciated. Thank you.

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deepest sympathies on the mind gremlins - they always make coping with this bugger of condition so much harder. The Samaritans are brilliant - particularly in the dark hours of the night - you don't have to be suicidal they will just let you talk - I used them quite a bit when I was first diagnosed. samaritans.org/how-we-can-h... Personally I manage it with a lot of pacing strategies - Hannah Ensor's website has loads of brilliant resources to help with this stickmancommunications.co.u... decent CBT for the mind gremlins, and Alexander Technique for trying to de-stress physically - can highly recommend these guys alexandertechnique-itm.org/... Many many hugs you are not alone

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Thank you, will definitely give those a try :-)

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Hi,

Firstly being diagnosed with FND is devastating, but you have to understand that FND is a very real neurological condition and that it is not anyone's faulty.

I too was only told to look at the web site......Very helpful!

What I will say is look at the bits that effect you and not at them all! As everyone is different and so are their symptoms.

I have found the best way to think of FND is as similar to a computer with a virus! Hence all the different symptoms.

Also read lots of blogs, NHS sites and all FND sites.

As to panic attacks I have found it is when my brain can not cope....

A busy, noisy environment, lots of people, being RUSHED and being asked questions. It's as if my brain can't cope with too much information! So I have to go and have a coffee if out to calm my brain down, ask people to give me a minute or 5 and try not to get upset or angry as this just makes it worse.

Be honest with family and friends and be kind to yourself, both of you are having to deal with the FND!

Lots of luck!

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Thank you, sounds familiar! How long have you lived with FND for out of interest? Any tips to alleviate symptoms a bit?

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Sorry to have to tell you 20+ years, only diagnosed in Jan 2016 though.

Tips to help

Try not to do too much- you will slowly get to grips of when to stop but this can also vary from day to day, week to week. So it can be a long process of learning the signs to stop.

I tend to have periods when I get worse and then I improve but never to the same degree.

Illness, stress, over working, can all make me bad, so I have to live my life 'on go slow'.

Trying to keep calm in busy situations can be difficult but it can help big time!

Try and do a hobby(s) you really like as this will help calm the brain.

I find listening to music, reading, crafts and jigsaws helpful when my head is racing but you will have to find what helps you.

Sorry it takes me a while to answer but I find writing/typing difficult now. It is so frustrating as I use to be a receptionist in a large business (in my other life)

I always plan if I am going out- 'where, how, when, who with' are all useful steps to help me.

Keeping a 'how am I feeling and why' diary can be helpful to see if there are any patterns it is also good evidence to show your doctor, consultant etc.

Good Luck

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You have described my triggers so well. Anger, stress, loud noises. The whole nine yards.

I have determined to be WELL again. I WILL BE! 100% certainty. Some days are worse than others. I see hope on some days. Setbacks on others. With this website I know that I am not alone, nor a freak of nature. I am human. I am capable. I will improve.

So much to be done. Treatment in St George's pushed me in the right direction. Now it is down to me.

There are many techniques out there - mindfulness, yoga, and everything else. I practice Nichiren Buddhism which includes the premise that life and the environment are linked. So there is f*** all use looking/blaming someone else for our condition. In a nutshell!

Well done Borrow, for having the guts to write. Thank you for confirming my own observations about triggers and things. I am sure that many of us have/are exoeriencing similar things.

The external things don't go away. How could they? WE, the victims must find the right (appropriate, convenient, timely) way of coping.

I am still learning. I shall continue to do so.

Thank you for the encouragement.

RWT

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Hi,

We are all in this together, whilst we may feel alone,

WE ARE NOT!

Together we will/ we can cope, some days better than others but today the sun is shining and I am going into the garden and enjoy!

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Hi Borrow,

I think that we are 'agreeing furiously!'

I so agree that we are not alone. That really was just my point. The support and empathy that we give and get is so important.

I agree with everything that you say. Yes, some days ARE better than others!

Keep well.

R

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My heart goes out to your family. I also remember when being diagnosed with FND and being sent home with a website, workbook to order and a six month follow up appointment. The unknowns were overwhelming and for myself I could not accept how one could be healthy and active to not being able to function and I felt very lead to continue searching.

I learned that I had to listen to my body as it was experiencing so many things. This was the biggest lesson learned from this for myself...in stillness I was guided to many things that would help me to regain health which I am so grateful for.

For myself rest in the beginning was extremely important. Learning to keep my neurological system calm as it felt so overstimulated which would effect my symptoms. Ear plugs, calm music, diet change as well as many other things. What symptoms is your husband experiencing?

After we continued searching for answers we learned by testing out of the conventional medical that I have neurological lyme, bartonella, mycoplasma and other things as well( co-infections). I share this as I would have never thought Lyme/ Vector Borne Illness could cause so many variation of symptoms and unfortunately it is hard to get a correct diagnosis for this.

Remain hopeful and may you find the answers to regain your husbands health. It takes time however it is possible.

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Thank you x

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Your welcome.

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Thank you too. So positive. Wise.

Thank you.

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Your welcome.

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Take a look at my reply to a similar post here: healthunlocked.com/fndhope/...

You’ll,have to scroll down. I think it’s the second comment.

There’s not a lot of coordinated help out there. FNDhope and the associated Facebook groups are a good place to start.

Take your time. This is survivable. It’s difficult, especially to adjust to it. For me, i can only use radical acceptance.

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Try the Woebot app for cognitive behavioral therapy.

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Hi I've been diagnosed a year ago with FND and severe depression I've been booked to stay for 8 weeks in psychology department so I will also have to see if its going to be of some help in future my left side is not responding so well but I'm looking forward to the help I'm getting .I will stay in touch with my progress .

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hi Arlene

im intrigued where is your inpatient stay, ive too a left side weakness & am in a wheelchair....fnd is isolating sometimes, im finding the lack of others expertise is leaving little trust in my capabilitys, however tired they are, I always try to stay with the now & have faith that awareness provides understanding which can at least at times be reassuring to self if no one else, I wish your journey and treatment to be well xx

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Yes Cliff

Please stay in touch. We are family. We need and support and nourish and encourage each other. Together our pieces of the picture might just help someone see the answer, or one of them.

Good luck.

RWT

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Hi everyone, we’ve since had an update. My partner has now been diagnosed with an under active thyroid. Doc said apparently that this could be making his FND symptoms worse, so he’s started taking medication for that now. Its been a week and we haven’t really noticed much difference yet but fingers crossed.

Another thing he is really struggling with though is sleep, last week he was awake for nearly 4 days, doc said this could be down to thyroid too (zopiclone not effective whilst thyroid was untreated). Has anyone else experienced this? When he does sleep he has terrible vivid nightmares.

Yesterday he woke up and his left foot is completely swollen, his right side is he side affected by FND so this is causing extra difficulty walking.

Thanks in advance for your help

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Just wanted to add to the above incase anyone else has experienced similar, my partner is sceptical that he has even been correctly diagnosed as having FND. He believed his under-active thyroid symptoms could’ve existed for months un treated & all this could be an onset of mis prescribed medicines. Thoughts?

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Anything is possible.

For over a month a 'respected' hospital in Ireland pursued the notion that I was suffering with serotonin syndrome and treated me for it. This was unfortunate as SS either kills you or goes away after 72 hours. But 23 days later, I was still noted as having SS! This was manifestly wrong. It took a further 7 months, abandonment by my neurologist and refusal to treat from 3 more, to get a correct (I believe) diagnosis of FND from Professor Mark Edwards.

Follow every lead. Exclude no thinking that MIGHT lead to a correct and treatable diagnosis.

In spite of everything, there are dedicated and knowledgable neurologists out there. We have an advantage because we KNOW how we feel. The frustration, anger, depression, hopelessness.

Do something positive.

Tip: Look out for the next FBDHope coffee morning. Second tuesday of the month (June 12th I think) Details on FNDHope website/fb page.

Despite internet connectivity difficulties, I was able to speak to a charming lady, Dee, in Australia! (She's the international organizer for FNDHope activities.) We are family FND. We fight. Fou ourselves, for each other. For answers, for cures. For everyone.

If interested in a chin wag, you will have to set up a Zoom account and use the FNDHope access code (available from Dee when you register for the event.) Then it is easy peazy!

Just an advanced notice.

Robert

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Thanks Robert, I didn't know anything about these coffee mornings, will give it a go. Great that we can all help each other by sharing information like this, keeps you positive!

Dot

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Thank you Robert!

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