FND and Mental Health

[Loobyloo1966]

I’m confused about FND and Mental Health. Do you have Mental Health issues if you have FND? To my knowledge I don’t have issues but feel it’s the only direction I can get help in. Neurophysio has been requested but It’s been cancelled because they are waiting for a report from neurologist in London who has just cancelled with no other appointments at this time. Unless I go down the Mental Health route there is nothing . I have been diagnosed with FND just want the right help not just help because it’s the only one I can get Gutted??

[Jofisher]

Go and see an FND specialist they won’t push you in the direction

[Loobyloo1966 in reply to Jofisher]

Hi Jo the person I was due to see was in London and he cancelled so only available services appear to be down Mental Health route which I don’t think is right for me. I’ve not been referred the them just had a diagnosis like many others it appears with no support. I’ll probably end up using mental health services creating a drain on services I didn’t need. This diagnosis is rubbish 😔

[Jofisher in reply to Loobyloo1966]

Your right there this diagnosis is blxxdy rubbish, the things I have found that help me personally good sleep hygiene healthy diet pacing is key to everything exercise but start really slowly and when your ready don’t do more than you can otherwise you’ll suffer. Accepting the condition and concentrating on what you can do not what you can’t do and learning to say No and keeping away people that stress you out and drain you.

[Loobyloo1966 in reply to Jofisher]

It’s just the frustration which itself creates the stressor. Acceptance wouldn’t be an issue if there were enough specialists and services out there that didn’t let you down. Let alone the lack of knowledge from other services, professionals etc 🙄 sorry I sound so miserable but being diagnosed with FND creates mental health problems I’m sure . Thank god my husband supports me.

[Jofisher in reply to Loobyloo1966]

Yep I know this condition is bound to affect us psychologically because of the lack of support from healthcare professionals they know this is the case but nothing changes. I was hoping long covid would end up helping us in the end so I’m still hoping for that.

[Jofachiz1]

Hi. Sorry to hear you have been diagnosed with this. You don’t necessarily have mental health problems but whoever diagnosed you with FND believes you do. That is why the only help is psychological or in some cases Physio. I have done extensive research on this. There are some very rare diseases that are often misdiagnosed as FND. Are any of your tests abnormal? What are your symptoms?

[Loobyloo1966 in reply to Jofachiz1]

Hi I have migraines which when I had MRI they said I had white spots on my brain which have increased in number but consultant said that’s normal. I am exhausted all the time and have chronic pain in my upper arms shoulder, neck and hip area. I have awful word finding and memory. I tend to repeat questions and conversations. My balance is dreadful I have a weak left leg and hand with pins and needles. I can’t climb stairs. I stumble and trip up regularly. After a recent fall I injured my right knee which I’m told is weak due to arthritis so basically a right sorry state.

[Misstea in reply to Loobyloo1966]

That sounds like some of my symptoms, sans the hip pains. The neck pains I go to PT for, My balance comes and goes, which is annoying for me. I was diagnosed with anomic aphasia by a speech pathologist, and I also suffer migraines, which are mostly under control since I avoid soy. I just need to go to sleep.

[Clarabella47 in reply to Loobyloo1966]

Same

[Jofachiz1]

Sorry to hear you are dealing with all that. Pain, fatigue and weakness quickly take the joy out of life. Worse that all of that is the lack of support or understanding from medical professionals. I have been exactly in your position and had the same symptoms, plus some. I was misdiagnosed with FND only later on to be diagnosed with episodic ataxia which is treatable. I know it can overlap with migraines and have a whole host of symptoms. I am mentioning this because you say you are having trouble with balance and weakness. Have your doctors also ruled out autoimmune and other causes of your symptoms? If not, don’t stop trying to find answers. If your Neuro, is unhelpful, you may need to see someone else. Also the white spots have to be in very specific places and meet certain criteria to be relevant to illnesses such as MS. I have some too, but I don’t think they mean anything based on where they are located. I hope some of this information is helpful. Again, sorry to hear you are suffering. Hugs 🌸

[Loobyloo1966]

Thank you for responding again. I have got a rheumatologist referral but on a 38 week waiting list 🙄☹️ I think some of my symptoms are fibromyalgia related?? I’ve had MS ruled out. I hope your health improves 😊

[Van604]

There is so much controversy and disagreement about this among both doctors and patients. I think it depends on whether the doctor wants you to have the therapy because they believe that FND is psychogenic or because they think it will help you cope with having the condition because they don't know what causes it. I was unfortunate to have the first type of doctor, who basically gaslighted me for 2 years, during which time my symptoms got worse. Since I stopped seeing him a year ago I feel a lot better, both psychologically and physically. Like with you, it was the only treatment on offer at the time and I was so desperate that I took it. What did work for me was talking to other people with the condition, both on message boards and in support groups (which the doctor actively discouraged me from doing!). It's worth noting that conditions like MS were considered psychiatric until the MRI was invented.

[Flower589 in reply to Van604]

I'm really sorry you've experienced this type of treatment. It resonates with me deeply as I am currently innthe same position with my consultant. His treatment has caused me such big problems. Are you UK based?

[Van604 in reply to Flower589]

No, I'm in Vancouver, Canada. There's only one FND specialist here (a neuropsychiatrist), but he calls it conversion disorder and insists that the patient has to acknowledge that there is a psychological cause for their condition, or you can't get better. I've seen two neurologists elsewhere that specialize in FND (one in Toronto and one in London) and they saw it differently. I have much more respect for the doctors who admit that no one really knows what this is about and that they haven't yet invented the scan/test that can diagnose it.

[Flower589]

Sorry you're going through this.

If you don't have underlying mental health or FND driven or exacerbated by a mental health diagnosis I would recommend pushing your consultant for an appointment and treatment referral to an FND service in London (there are a few). I have FND and a serious mental health diagnosis and have spent years in the mental health system because they don't know what to do with me. Unless your local mental health community have an FND service and this is all you're looking for, I would think it through.

Take care of yourself.

[Loobyloo1966 in reply to Flower589]

HiSt George’s hospital London cancelled my referral to the FND Specialist there, it was due end of September, they will be in touch when they have new appointments available? I won’t be to accepting services I do not need as a stop gap whilst waiting for the right appointment but it’s crazy that you are just abandoned.

I can only see a negative to this FND diagnosis at the moment. My neurologist explained it as

“I am planning a journey but take all the B roads instead of the motorways and got lost, stuck behind a tractor or just run out of petrol. By the time the brain has sent the signal to the part of the body I want to use its still plodding down the B road.”

I know I have to keep pushing but I don’t want to keep asking for referrals for my fear of being labelled a hypochondriac which is so upsetting as I know FND is real it’s just a shame very few others do. It’s nearly 2am, I am wide awake with terrible tingling and numbness in my leg foot and arm it keeps waking me up so tonight I’ve given up trying to sleep… no wonder I am exhausted. 🥺

Thank you for your kind responses x

[Flower589 in reply to Loobyloo1966]

I'm sorry you're experiencing this. I hear the same from others and am going through the same problem myself in finding treatment. I was diagnosed in 2012 with FND with dissociative seizures. Do check out the FND HOPE website. There's loads of zoom sessions on there. I know it's not the treatment you want or need but it might help you to feel you're not alone in this. FND is real and it has real disabling effects.

With best

Xx

[tabey]

No but sadly no one will move forward if you google fnd it talks about it being linked to mental health but that like 10 years ago things have moved forward since I was told at Kings in London that FND is a condtion on ots own and its classed as a brain conditionBut people like to label everything

[210272]

I'd check with whoever gives it/you a medical code. As far as I'm aware FND is in DSM (the big book of mental disorders which used to think that being gay was a mental health problem and doesn't seem to acknowledge that medical gaslighting is *sigh*). I'd also check with your GP regarding your cancelled neurology appointment in case there's been an admin mistake or in case you've been discharged from neurology without your knowledge. Either way they should be able to hustle on your behalf so you can get to Neurophysio sooner rather than later.

[Brokendeer]

Hi, I have Motor FND which means I suffer more with Physical disability symptoms than Mental symptoms. Neurophysio was helpful initially (although their goal setting can be a bit unachievable, they like to measure improvement which is difficult when you have no consistency in function!) . So basically you will always end up Self-Managing your condition on a daily basis whatever therapy you might undergo - it is all a matter of gaining those Self-Management tools that will help you specifically, so Cognitive Behavioural Therapy (CBT) for understanding of and lessening of triggers, Neurophysio for Physical movement and occupational issues daily life and or Phycology/Psychiatry for understanding FND and any deep seated traumas you need to work through.

The Neurologist who referred me to an FND Multi-Disciplinary Therapy Rehab many years ago explained that the brain gets overloaded with nervous system signals, processing priorities are confused and this is what causes the wrong functional patterns to emerge. The common theory is `There is a Software Problem not a Hardware Problem' with the brain, like a computer virus causing random outcomes. Therefore by retraining the still active and adaptable neurons of the brain you can learn to `reset' the correct, normal function patterns. Least that is the theory they base all the therapies on?

No one yet can say that half of the brain does this and the other half of the brain does that (there are people living with literally only half a brain who can pretty much function normally for example) - FND has much additional networking and crossover between Physical and Mental brain centres in order to produce functional tasks or any function at all!

The core therapy offered back then, was Cognitive Behavioural Therapy which basically tried to make you think about what bad triggers you had making symptoms worse and to change your mind set and goals to overcome those wrong signals!

There is no specific FND Therapies tailored to this condition to date, only the use of pre-existing therapies that have shown in the past signs of improving the bulk of FND sufferers.

So these therapies do not suit or work for everyone with FND and frankly at the end of the day you need to find what will improve your life, not what is available.

The medical definition of FND is still very much on the fence about it all and states it is both a Physical and Mental Condition. Mainly because as said, the brain cannot be divided equally according to function/thinking processes and partly due to the fact that neither Neurologists or Psychologists want FND Patients on their services- bad for hitting success targets!

Look for the things you need to achieve in your life, what is holding you back despite all the things you have tried like pacing etc. Then look for medical support to meet YOUR PERSONAL goal, you know what does not work and know yourself best!

Look for the calm in the Storm!

[LouBL0u]

Hi name twin!I had a TBI almost 3 years ago, MRI and CT normal so private neuro diagnosis of FND.

I went with the diagnosis and while an in patient in re hab in Bristol had my hidden trauma triggered. Honestly I had no idea what had happened until flashbacks. I was shocked as completely understand some have trauma some don’t. I’d firmly put myself in the “ I don’t have trauma camp”

In FND re hab I had access to speech, physio, OT, psychologist, neuronal assigned nurse- it was an amazing service!

So 2 more years down the road I’m completing EMDR which has been life changing.

I would advise researching and asking for referrals, checking for cancellations, phone the secretary if you’re able ( I couldn’t talk in the beginning so my lovely family helped)

But you are the only person who can get through this, I’ve written a lot about my special needs background and creating small targets eg “today I will make a cup of tea”and understanding all the simple 100s of steps that takes to do and stopping when needed is an achievement…

My concern 3 years in, is I have so many labels but none for a brain injury which brought me to this point in my life.. so taking my own advice every day now means I can do lots ( not the same lots as before!) but I can talk walk and laugh a lot of the time so good luck and hugs 🤗

[Loobyloo1966]

Just an update, I spoke with my GP who confirmed that St George’s London FND centre are not taking on new referrals ATM. She is looking at the other UK centres that are taking on newbies. We know they exist and London suggested I stay local but dreadful experience at The Barberry means that is not happening. Next suggestion was to go private for help with managing symptoms. I have a diagnosis of FND so it’s the “what’s next plan” I need. Cost is a worry as I had to stop working.It’s now 4am and I’ve been trying to sleep but the pain with every movement is unbearable. I purchased a wheelchair just so I can get out. We are even considering converting the garage to a downstairs bedroom now as I can’t get up the stairs without being in agony. The cost will cripple us.

On a real positive my GP managed to get my rheumatoid appointment bought forward to mid October so that may shed more light on the pain issues and dreadful flu like constant aches.

It is a help to know I’m not alone in this but it’s so sad to find so many of us out there and so frustrating that it’s so difficult to treat.

Thank you all for your support.

[Daesin]

FND is listed in the DSM. It is under the somatoform disorders. The one who diagnosed you with this believes you need mental care.... not medical.

A neurologist won't help you with that diagnosis. They will probably put you out the door the moment they see that diagnosis on your chart.

Whether you feel like you have mental issues or not fnd is not accepted or treated generally by medical doctors. They make a very big wall between neurological and psychological which is unfair and unrealistic.

Oh and not believing that you have this is one of the symptoms of having this disorder. Cool huh?

Educate yourself and be the strongest advocate for yourself. Ask questions again and again and again if needed for you to understand. I hope you're able to find a doctor that provides you with the appropriate care. Blessings to all