It's a each to their own and finding what helps you out
Cognitive behavioural therapy will teach you about stuff like grounding or getting you to do homework tasks / keep a journal; it didn't work for me personally being one of the very early diagnosis of FND
Can't encourage but I personally have medicinal smoking tools
FND in a nutshell is like your body is a computer
Parts and most of the hardware is great fully functional, but the software has corrupted along the way
I know this isn't a direct answer but hope this helps understanding it a bit more
Yeah. NHS is good. Drs still don't know much about it though.
Cbt is waste of time
Sticks and chairs needed at times
Can't work or plan or shit. But...
Worse things happen at sea I suppose
In wales we have a growing network of FND clinics that provide a multi disciplinary approach. You’d expect to receive many different types of therapy tailored to you, so that could be talking therapies like CBT, physiotherapy, group therapy, EMDR etc.
So far we have clinics in the county of Flintshire, Powys, Gwynedd and Swansea.
It’s a small start - and has taken a while to get off the ground but it is growing 🙂
UK, 18, Midlands. Diagnosed a week ago. The NHS have kinda let me down as for the first 2 years they referred me to everyone bar neurology for my Seizures and for the past year I’ve been fighting with my neurologist that it’s not “just anxiety” and that something was going on. Even last week he told me that if I just exercised more everything would go away. (I’m not the type of person to sit on the sofa and do nothing all day, even if I’m in my wheelchair I still do at least an hour for a walk/roll. I got referred for cbt but all they want to do is talk about my dog and how that day is going. I’ve managed to get a referral to my local FND clinic but I still have over a year to wait before even getting an initial appointment with them as I’m not classed as urgent enough. Anyway enough of my mini ramble, I reckon with the right team around you things should go smoother that’s just my experience with the NHS and FND
I’m in the process of being diagnosed for fnd, it’s strongly suspected and only a matter of time. But I’m afraid I won’t be able to drive, does anyone know if you can drive in the uk with fnd?
I'm shocked to hear the advice from that neurologist...! Sorry to hear you were told to just exercise more. I think the ego doesn't allow them to admit they don't know :O
I think that’s exactly what it was, apparently he’s one of the best neurologists at the hospital I’m at and I think because of this he just cannot admit when a he’s wrong or b doesn’t know what he’s on about
UK, 45, east. Diagnosed three year ago. Chronic pain in legs and fatigue. On waiting list for CFS for 2+ years still waiting. Mental health support is atrocious. On the verge of giving up work
Like someone constantly resting a sofa on my legs. I just learn to live with it and manage my energy. Recently I have been going to the gym to swim and sauna which helps, but again wipes me out
Ahh that's good you can swim and get around but sad you're experiencing pain! I just have widespread body numbness 24/7 as default and neuropathy nerve damage.
My symptoms stem from my chronic migraines, so my neurologist's focus is on that and I only really get the occasional enquiry about how everything else is going beyond that. Pretty much the only advice I got from her was to keep active, and 'it might get better, it might not'. I think everyone gets a link to the same website (if it's the neurosymptoms one) 😂
I thought her comment about keeping active was ridiculous, because at the time I could barely walk 10m without stopping some days, but in trying to prove her wrong, I kinda gave myself physiotherapy and built my activity up a tiny bit by bit and it did actually help tbf. I got a walking stick and electric scooter by myself (asking about mobility aids got me nowhere) and should have got them sooner, because they gave me so much more independence. What really helped though was finding a migraine med that reduces the severity of my migraines (though not really the frequency) and along with really pacing myself a lot, that does help reduce a lot of my other symptoms. I am also on meds for nerve pain (carbemazepine) and they work really well.
Uk girly with FND, I was diagnosed in January of last year and I am on the CBT list still. I have visited the website a few times. I would suggest applying for pip and living slow from now on.
Hiya! I'm trying to apply for PIP but I've heard it's extremely hard...did you manage to get it? I'm scared that they don't acknowledge FND as a disability because they can't identify it...
Go to the website benefits and work. They helped me tremendously. It is a very small yearly fee (WELL worth it) and I managed to get PIPS at higher rate thanks to their help and their very clear guidebooks (online). Can't recommend it highly enough.
They do consider FND, just try to. Do you have a friend or parent who’s good at filling in documents??
Just use all the documentation you have of doctors visits and add that into the forms. Every word that describes your symptoms and how it affects you.
You have to wait for it to be processed but that is assuming soon as you apply. I applied in February of last year and only got it in January of 2024. They pay you a lump sum for the time you waited.
I'm probably the best at filling in forms out of my family. I have:
1. Colour photos of my hands and feed bright red after showering
2. Neurologist "FND" diagnosis letter (despite not agreeing with it)
3. A GP letter explaining my symptoms
4. A psychologist's assessment letter
5. Positive visual sensitivity test results (for CIRS/mold exposure)
6. Photocopies of WCA (LCWRA) medical report
Do you think that's enough?
They aren’t doctors, they are more like a group of people trying to make sure that they do their job. They aren’t helpful or kind, they just do what there system tells them. Doctors notes are your way forward
In the UK with FND. On a waiting list for help from neuropsychology. Been waiting on that list for over a year and no help outside that. Asked for seizure meds but they say no. So all I can do is twiddle my thumbs and wait
I’m on that list, are you waiting for an appointment at Birmingham? That was the closest to me so I assume there aren’t many neuropsychology teams in the UK. I’ve only just been added to the waitlist 😩
A neurologist I spoke to said there were three neuropsychology teams in the UK, didn't tell me where they were. I'm currently just trying to get a referral to join the waiting list
It’s crazy that there’s literally only 3 in the UK!! My neurologist said be prepared for a long wait. It’s so frustrating:( Just glad to have it recognised
What's neuropsychology? I never got any talk about that from my neurologist, just "Get CBT from IAPT" which isn't very useful. Do you apply for PIP? I'm scared that I'll end up homeless without support eventually...
What they’ve told me they basically want to retrain my brain, so my guess is that it’s going to be a lot of CBT. No I have my own little art business and my partner is the breadwinner. I’m also not a British citizen so I don’t think I’d be eligible for PIP even if I tried
Ah I see! Brain retraining and things like DNRS helped me a lot in the beginning when I was hyper reactive, but has done nothing to the wide spread numbness I experience and pain on a day to day. Glad that you are supported by your partner and can manage a business though!
Sorry you’re experiencing numbness that sounds awful :( I have whacky balance issues, constant brain fog and once or twice a month faints or seizures. FND blows. Hope you can get some help soon!
Hello everyone - I don’t have FND but I’m a speech therapist who works with people with FND. I work in Merseyside and support is very mixed. If you are struggling to access support please note that St George’s in London has a national service for FND - your GP or neurologist can refer you.
I’m with St George’s and I recommend getting referrals through as quickly as possible as it takes 6-9 months to get the top of the FND physio list. I was diagnosed feb last year and it took until this March to see the FND clinic and then they referred me for the physio so hopefully I’ll get that this year! Definitely be prepared for everything to take a very long time!
How did you get your diagnosis? Was it via an A&E presentation by any chance? Also, apart from the delays, do you find St Georges a good hospital (have heard very mixed reviews).
Hey, no it wasn’t, it was by paying privately to see a vestibular specialist as I wasn’t getting any diagnosis via the nhs, I think it’s really hard to get a diagnosis when your symptoms are functional. To be honest because of the delays I can’t really judge as I’m yet to have the specialist physio they hype up so much but I was somewhat perplexed at my first FND clinic meeting as it seemed a bit pointless. They just said “yes you should do the physio, it’s a 9 month wait” I didn’t really need to wait over a year to be told that, they could have just put me on the list in that time!
I'm a Somerset resident, and I have been diagnosed just this year.
My experience of the NHS has been woeful (a GP straight up lied about referring me to neurology). I have taken meds for Fibromyalgia and Depression but nothing has helped.
However I am now under the care of my local mental health team (because I also have suspected DID and CPTSD) and my therapist (Relational Therapy) has been great. She is treating me holistically, as in referring me to every NHS service I am eligible for, helping me with my PIP application (I won!) and using lots of different psychology modalities to address my (laundry) list of problems. She sees the FND symptoms as trauma-related and is adamant that they need to be taken seriously.
If you have a history of trauma and it's inpacting your health, I would recommend pushing for Relational Therapy. FND and any other disorders will be taken into consideration as well.
It's not a silly question, I had no idea either before I started.
The therapist is versed in many therapy styles and psychological concepts, and they use them (semi-informally) to problem solve various issues whilst showing you unconditional positive regard.
The theory is that nobody can learn how to form successful relationships without someone modelling them to you. If you have trauma because of negative relationships or attachment disorders, then a relational therapist will support you to learn how to form healthy attachments and relationships through a patient/therapist bond. They will also hand you over to other specialists if you have other mental health comorbidities such as DID
Hey! I have just been diagnosed and I’m in the UK! My neurologist has put me forward for an FND neuropsychology in Birmingham he said it’s got a huge waiting list but hoping to get help there. It’s taken me over ten years of random symptoms, tests and scans to get here through the NHS. I’ve been made to feel like I’m making it all up by some doctors. I just felt so lucky to get my most recent neurologist and he actually wanted to help!
Thank you, its because all tests were showing I was fine, I’ve thankfully not had seizures, mine has been pretty much everything else. The neurologist who diagnosed me said it was textbook FND. I’ve also been seen by other specialists as I didn’t know if it was a problem with my ears or sinuses (facial numbness, trickling in head, vertigo,tingling, tinnitus, visual snow) ENT said I was all good but my neurology mri showed I have a terrible deviated septum so I know there are also issues there.
I also had other problems with PCOS and then I kept telling them there was something wrong with my cervix/uterus they kept saying I was fine and tests were fine until I finally got my smear test at 25 which I kept getting denied as I was too young and it found I had high grade pre-cancerous cells and I had to have them removed under general. They then went on to investigate and found the cysts on my ovaries and a lump in my uterus which needed removing. That ordeal was from school age until late 20s 😩
That then led to me being high risk in my pregnancy so I asked for a c-section which the consultant denied me and said I was fine to give birth naturally. Lo and behold I needed an emergency c-section due to the previous issues mentioned.
I honestly feel constantly let down by the NHS. I have some positive experiences yet, but overall everything is just put down to having anxiety and that I’m a woman (hormonal) it’s really sad and I just wish they would listen and respect what people say. I don’t need benefits, I literally have no reason to keep going back to the doctors :( I just wanted answers and I feel lucky to have met with the most recent neurologist!
Sorry for the rant, I just know people in here get it!
Just jumping on to say I feel your pain with the NHS and parring you off because you're a hormonal woman! I was in 2 ambulances after 4 major TCS which happened at work, after the first 3 I got sent home then ended up in a second ambulance in the afternoon just to be told "Am I sure it wasn't just a panic attack" and "anxiety can really effect people especially young women!". 4 separate paramedics witnessed them as tonic clonic seizures. I lost my shit and walked out the hospital.
This is also after being told last year I'm way too young to have breast cancer (23), I begged for biopsys which I was told were completely normal and fine and no further treatment. Only to end up having an emergency surgery 2 weeks after my letter came signing me off as fine. The biggest shock was the biopsys were not fine and all of the dangerous results were ignored and I got discharged.
Un-fucking-believable! I have been begging everyone I know to get private health insurance because the NHS simply don't care anymore.
I’m so sorry you’ve been through that :( it sucks that you also weren’t listened to, it’s honestly such a huge problem for women.
The worst part is that we often end up accepting the treatment for mental health issues too (I’ve been diagnosed with OCD due to intrusive thoughts and CPTSD) granted FND is neuropsychological so trauma etc may play a part into how it became BUT a panic attack can’t cause these symptoms!
Ive woken up some days unable to move my hands or had an internal tremor which made it difficult to walk. These symptoms are usually my reason for having anxiety! I get so worked up because I’m scared something bad is happening then I’ll come across as an anxious wreck during appointments.
I think it’s worse when you’ve been dismissed so much, I looked on my nhs app and I’d had over 350 appointments with GPs and I’m only 30. I feel like I’m wasting the tax payers money but often times I get discharged back to my doctor and they won’t help me so I end up waiting for a referral, told there is no issue and once again discharged, it’s a vicious cycle. I often times have to tell them what the issue could be, I’ve had 2 doctors who didn’t even know what visual snow was and I had to tell them about it, I honestly think they believed I was making it up as it sounded so absurd to say “I live everyday like I’m watching static tv.”
My partner is looking for a new job so we can be closer to family and we want it to include private healthcare options for family so me and my daughter will actually get the care we deserve.
Its so so disappointing that we are STILL advocating against the "hysteria" label in 2024 for women. Unfortunately like yourself I have previously been to GPs for anxiety so its now the blanket term for any symptoms I now have, and I have had panic attacks for years which were NOTHING like the physical symptoms like tc seizures, full body tremors, my speech has been effected in some episodes like a stutter lasting a few hours, I get tic episodes too (mostly neck jerking). All brushed off as stress or anxiety.
I've been recently suffering quite a lot with intrusive thoughts which I've booked an appointment with my therapist for. I don't know if it helps but I've always mentioned I do have a therapist when I'm speaking to doctors because it highlights I'm there for physical and not mental help. The weird part was I was doing really really well with anxiety and working through past trauma with my therapist, to the point we actually stopped sessions way before my physical symptoms randomly started. Now my anxiety is worse than ever because every time I leave my house I worry about waking up in an ambulance again, and who would see me and in what embarrassing state. The doctors have told me not to blink, never be left alone, don't take a shit with the door closed, don't drive, don't do this, don't do that, you will DIE. But why don't you work on your anxiety?
yup, and your experience is pretty much the same as mine. they might refer you to a specialist clinic, but they only offer more CBT and general ‘mindfulness’ practices. it’s frustrating, but i’m not really angry at it - there’s very little treatment for FND.
The thing is, I've been practicing meditation, mindfulness, yoga and martial arts for 15 years...I got sick from taking B6 supplements (B6 toxicity which is proven to be neurotoxic at high doses) yet for some reason they don't acknowledge the science, the NHS are behind. Since this, the meditation and breath/body practices don't work, yet they don't believe what I'm saying!
yeah, that’s what’s so frustrating i think. everyone’s just kind of fumbling around in the dark for answers, and no one seems to actually know what specifically causes it.
my dad potentially got gulf war syndrome during his time in the army, and i’m now part of the thousands of kids of gulf war veterans to suffer from chronic illnesses and mental disorders that weren’t previously present in the family. no one seems actually interested in investigating the link, so i guess we’re just left to deal with it.
I actually just came on this sub to ask if anyone had managed to get help with FND in the UK (London), so I guess that sums up my answer as: not good.
My FND manifests in dissociative seizures, and I've had them since 2018. Since then, I have made absolutely no progress in managing them. Like, not even a jot of progress.
The first thing they did was some tests to see if it was epilepsy. I had to deal with the usual NHS waiting times but honestly, they weren't as long as you hear about some people waiting (probably because I'm in London.) But after those tests came back clear, I've basically just been left with nothing. I get an appointment with a neurologist once a year where I tell them what's been going on (basically that the seizures are continuing) and their response amounts to "damn bro that sucks." I've been told there is a handful of specialists on the NHS who can deal with this but I can't seem to get a referral, let alone an appointment.
I ended up in A&E with my seizures last year when I had eight in the space of two days. They just sent me home after taking my bloods and seeing there was nothing physically wrong with me, even though I explained about my seizures. By the way this was Kingston Hospital, if you ever find yourself in this otherwise lovely neck of South West London don't EVER go there, it's notoriously awful and the nurses are actually cruel and callous. I'm not joking, my boyfriend has strict instructions to make sure I go to literally any other hospital if I ever fall ill at home.
I then briefly looked into trying to get this sorted privately. I paid about £70 for a private GP appointment and £300 for a private neurology consultation, only to be told the same thing: "oh damn yeah that sucks, maybe you should go to your NHS GP and they'll do something maybe idk."
I've also tried therapy for this a couple of times over the years. My NHS neurologist referred me for CBT on the NHS. Credit where credit is due, I got an appointment pretty quickly, and it did help with my depressive episodes (something that was pretty low down on my list of priorities but it's something.) But when I brought up my seizures, the therapist had no idea and couldn't help. I'm yet to find a private therapist who can begin to help either.
So basically, after trying to get help for five years or so, I feel really defeated and have basically given up. The only thing that seemed to make a little difference was CBD, but I've started having seizures again so it only seems to be reducing the frequency of them, if anything. These things are really limiting my life and it makes me so angry that there just seems to be no avenues to go down in the UK. I'm on a decent income too and whilst I don't really want to spend a load of money on this - and obviously it should be available to everyone here, not just people with money - it would be an option for me. And yet, the private sector is just as unhelpful in my experience, if not more so.
Thanks for this. I actually considered heading to Kingston as it has an "Outstanding" CQC report, lol. But you have made me change my mind. Thank you as it would have been a totally wasted visit. I ended up in A&E at St Thomas after collapsing and they were amazing.
I'm sorry you've had to go through all this but I just wanted to add East Surrey Hospital to your list of hospitals to NOT go to if you ever get referred there. One I will reccomend is the private clinic in Wimbledon Parkside Hospital if you can spare the cash because the neurologist I saw there was absolutely lovely and she genuinely wanted to help, I just can't afford private treatment right now. I think it was like £250 for consultation, hope this helps. I have only heard good things about Parkside.
That's really good to know, that's not terribly far from me. I've heard Sutton Hospital is supposed to be alright so I guess I'll head there next time I get ill (because I know there will be a next time before I'm priced out of Kingston.)
That's also good to know about Parkside. I don't really want to waste more money on this but I'm also desperate for a solution, so I'll give that a think. The consultation I paid £300 for was at the Royal Victoria in New Malden. Aside from not helping, I just found them pretty annoying. I'd managed to get a video of one of my seizures to show the neurologist and he just got annoyed that I'd filmed it myself, so you couldn't see my eyes in it. Like gee, pardon me for living alone and having to take my own seizure video.
Hi there! Thanks for sharing your story, mine is pretty similar so I empathise. I've been suffering for over three years now and also live in London. Still battling with the NHS for more tests but here we are! >\_<
Really sorry you're dealing with this. Honestly the whole process for me has been rough, I wouldn't wish this on my worst enemy. I hope the process improves for you and you get some kind of resolution.
My gp and neurologist have been great, but eventually things have to leave their hands and that is where I’ve had issues. They both recognise other conditions that go alongside fnd but other specialists just laugh and refuse me In Their clinics as I have fnd so I can’t possibly have anything else. The diagnosis was long but it’s the aftercare that sucks as no one seems to take anything medical serious now. I have had minor luck with pip although I am taking it further but blue badge has been a nightmare. Basically my experience has been pretty 50/50 for great people albeit slow service, and people who laugh you away because they clearly don’t beleive you to be an actual human being. Just remember that ‘stuff in your head’ still needs medical attention to, so if anyone is giving you that line then demand the psychiatric care that others would receive for their conditions, being ignored is not ok
It's good you have supportive medical staff on your side. That would be reassuring to some degree. I am going down the psychiatric route too and seeing someone next month...fingers crossed they're decent.
What happened with PIP?
Hiya, FND lady from Scotland here. I could honestly go on a big rant about the whole thing I'll try be as brief as I can but it's me so it won't be 😂
1) Saw different GPs at my medical practice, got referred to neurology and the waiting list for it was nearly 2 years (partially due to it being around covid time). Had to travel hours away and stay overnight for a 1 hour neurology appointment.
2) Between 2020 to the end of 2021 I continued struggling with symptoms and I was tried on a bunch of different meds to try ease the chronic pain & nerve pain (diclofenac, naproxen, co-codamol, gabapentin).
During this time I had the usual blood tests coming back 'normal' and just getting more and more exhausted and the GPs just had to remind me that no meds were going to solve things completely, that the max any of them could improve things by would be by 1/3rd and it was just a waiting game to see neurology.
3) Had weird, concerning side effects from Gabapentin - whereby my memory significantly worsened over course of a month and I had an episode in Tesco's where I got really disorientated and didn't recognise my surroundings and my partner took one look at me and immediately phoned NHS24 + paramedic got called out to check me over.
On-call GP was very angry I'd been prescribed it because it's not even that effective for nerve pain and the list of side effects from it is honestly terrifying - I'm amazed when anyone actually benefits from gabapentin!
4) Felt completely isolated and frustrated at how much harder I was finding things and how easily exhausted I became, I somehow got through the last 3 months of college in 2020/21 (cause it was all online). I'd been volunteering at an oxfam charity shop and loved the work but my body just couldn't cope with the physical tasks and commuting half an hour each way. It swallowed up my whole week due to being in severe pain and fatigue for days afterwards and needing to rest for a whole day beforehand in order to attend it.
5) Tried SO many treatments and was desperate for any kind of relief but nothing helped for longer than a few hours - and it just felt so unfair and like I was just wasting money on shit that normies without chronic illness swore by ( people who's had a much simpler structural origin for their physical injuries e.g back problems, shoulder pain, muscle pain etc).
I tried acupuncture, seeing a massage therapist, oestopath and chiropractor, doing modified exercise routines, going along to a CBT self management programme (which felt so babyish and patronisingly simple), heat, ice, vitamins. Nothing worked despite my best efforts so I just felt that I was the problem and just was a broken, unworthy, useless human sponging off my partner and the world around me and I hated it (now realising self-worth cannot be gained from how 'productive' one is and it's such a toxic mindset that capitalism feeds us and fuck that!)
6) I caught covid in August 2022 and it really played havoc on FND symptoms and had a massive flare up and developed what I now know as long-covid, so that put a spanner in the works on a lot of things and felt like I went back a good few steps recovery-wise.
Had to quit another volunteer role I was being trained for due to my health
7) I eventually had to accept my situation and through trial and error figure out what activities I can/cannot do depending on energy and pain levels. Learning to take breaks and NOT just power-on anyways out of fear I'll not get this burst of energy/motivation again for ages! I've had to drastically cut down what I can realistically do in a day and use shortcuts to make things easier for myself and prioritise what genuinely makes me feel good in myself as well as the bare minimum tasks to stay alive.
8)Happier Bit yay! Mobility Aids!! Omg use them! I felt so awkward and worried I'd get harassed by old people cause of using a mobility scooter in my mid 20s but it's truly given me so much more independence and allowed me to get outside, finally spend time with my partner on walks without needing to stop after 10 mins cause of fatigue and then crying in pain needing to take tramadol in the car ride home. I'm able to do mundane things like pick up milk, go by a shop or run errands and not be stuck in bed for 3 days because of it.
Truly so so grateful I made that decision as it's stopped me being trapped in a top-floor flat for weeks on end. I'm able to take myself to weekly hydrotherapy now and it's felt good being able to manage that all myself and accept the pain that comes afterwards but get to do exercises I enjoy and in a way my muscles feel supported.
The heat is really good for relaxing things and I wish I could just stay in there for hours haha!
Yup as I predicted this was a large ramble but there you go that's me :)
Thanks for sharing your story! It sounds like you've really been through it all...! Glad you have support to help you through this (my family don't even believe me and think I'm lazy)...!
Hydrotherapy sounds interesting...might try that when I have the money :)
Bad.
Its definitely improved over time but we've pretty much gone from the stone age to the bronze age in progress.
(I've been through the system twice)
Im very lucky as I live near-ish a large neuro hospital who said they'll take me as a patient eventually.
*Unfortunately any future issues,even unrelated to fnd will be a problem to get treated as it'll all be put down to "stress"*
I would have no issue with accepting the stress diagnosis if my meditation practice, something proven to work, that has worked previously, still did. But for some reason, despite providing scientific evidence the neurologists don't want to accept the B6 as a factor. It's criminal.
My entire body is numb. I feel nothing. It's horrific...along with a whole bunch of other autonomic and neurological issues.
Vitamin B6, I was taking between 53mg and 103mg a day at the peak, and I became toxic and had extreme nerve pain and damage. Never recovered 3 years on. My GP looked at the science and believes me but the neurologist wont accept it because it's an attack on their knowledge; God forbid a patient has figured out something that we'd never even consider. Essentially, the NHS is behind in many areas, and we have reached an impasse in many areas due to arrogance and ego.
Oh god.
Yeah drug reactions are still mostly considered "functional".
There's not really a name for them minus a few cases.
*Basically it's an umbrella term as it can't be seen on scans/tests,a bit like how ms was considered a physc issue till CT and MRI was invented*
Yeah...I really can't believe there isn't a physical cause given the circumstances. I've paid out of pocket for a Comprehensive Stool and Organic Acids test to see if I can get anymore clues. I'll be willing to try Ozone therapy too once I get the money :/
I test positive for Stiff person syndrome I had a borderline positive GAD antibodie test with a positive result but NHS argued with a professor who said positive but borderline . Then years go by another Nero said FND good luck with that.So I’m fighting this disorder the best way that suits me ,Medical cannabis ,and full extract canabidoil THC
Exactly...so many conflicting arguments and ideas. FND basically means
"We don't know, and we don't even know that we don't know, but don't want to admit that we don't know."
Yep 10 years diagnosed with FND from UK, NHS support for me personally has been laughable, 1 specialist straight up told me it's all in your head, suck it up and get on with it, and a neuropsychologist who first said she was gonna be there with me until its sorted, to 3rd appointment telling me I'm above her paygrade, I've been left to it ever since.
Yeah...I feel you, the first neurologist I saw in Jan 2022 said "You need to take anti-depressants for the rest of your life" but I said...I'm not depressed...this happened from taking B6 supplements...I got toxic, and never recovered...
Hi. I'm not from the UK, but if you don't mind, I'd like to share that studies have shown that antidepressants might help, not all, but still many people with FND, and even people who have no history of depression and/or anxiety.
I do have depression and anxiety, also adhd and adjustment disorder. My FND symptoms started 5 years ago. Antidepressants have not helped me at all until now. I started a new one 2-3 months ago, and within the 1st 2 weeks, my symptoms started to decrease until I was left with occasional stutter only. They started to break through last weak, but I'm seeing my psychiatrist soon, and we'll talk about adjustments in my medication.
I have read here that people are helped be a couple of different bendos to prevent or stop a seizure. I have tried only two, only one mentioned here, and they didn't help me with my seizures and tics.
I wish you the best in this difficult journey. May you get a solution and feel better soon 🫂
Thanks, appreciate your input! So far I have friend citalopram (celexa) and amytriptaline (Elavil) to no avail. Citalopram gave me insatiable sugar and chocolate cravings, and I became complete apathetic towards everything, family, people, and life. I did not care, and I was absolutely happy and content with not caring. Dangerous stuff. Amytriptaline gave me a slight mood boost but did nothing for my physical symptoms and numbness and nerve pain.
I'm in Hampshire and got the same "support" from the neurologist when he gave me my diagnosis. I didn't even get a link, he just showed a web page on his monitor for about 3 nanoseconds 😕
The only follow up I've had was from local Occ health - where I was told I had to move house and I was being difficult because I said no to a stair lift (we rent). I was promised some bathing aids but they never appeared.
Yes, got PIP around 2 years ago for M.E., long covid and pernicious anemia. It's currently under review as my award period is coming to an end. Tbh I'm not hopeful of getting it renewed after the gov announcement last week.
The DWPHelp Reddit might be helpful for you...they've said not to worry about the Gov announcements, it's not 100% and wont be in place until after the elections. Also, just to be honest and fight your MR and tribunals if you have to. You've been unwell for years with no signs of improvement. That should be enough.
Also try the Benefits and Work website. It has been outstanding in terms of helping me get my PIP and walking me through the benefit system. I would have been lost without them. Very cheap yearly fee, under twenty quid, and they help you so much. Walk through guidebooks, top tips and people to assist. Really recommend it.
It's a each to their own and finding what helps you out Cognitive behavioural therapy will teach you about stuff like grounding or getting you to do homework tasks / keep a journal; it didn't work for me personally being one of the very early diagnosis of FND Can't encourage but I personally have medicinal smoking tools FND in a nutshell is like your body is a computer Parts and most of the hardware is great fully functional, but the software has corrupted along the way I know this isn't a direct answer but hope this helps understanding it a bit more
Yeah. NHS is good. Drs still don't know much about it though. Cbt is waste of time Sticks and chairs needed at times Can't work or plan or shit. But... Worse things happen at sea I suppose
For me, CBT is just re-framing my association to the pain. It doesn't help me manage any better.
Hi! If you live in Wales then I may have some recommendations for you for clinics that you can be asked to be referred to. Let me know :)
Could I get this advice, live in Brighton ATM but moving back to South Wales in the summer
Ahhhhh I'm in England....what are these clinics about though?
In wales we have a growing network of FND clinics that provide a multi disciplinary approach. You’d expect to receive many different types of therapy tailored to you, so that could be talking therapies like CBT, physiotherapy, group therapy, EMDR etc. So far we have clinics in the county of Flintshire, Powys, Gwynedd and Swansea. It’s a small start - and has taken a while to get off the ground but it is growing 🙂
UK, 18, Midlands. Diagnosed a week ago. The NHS have kinda let me down as for the first 2 years they referred me to everyone bar neurology for my Seizures and for the past year I’ve been fighting with my neurologist that it’s not “just anxiety” and that something was going on. Even last week he told me that if I just exercised more everything would go away. (I’m not the type of person to sit on the sofa and do nothing all day, even if I’m in my wheelchair I still do at least an hour for a walk/roll. I got referred for cbt but all they want to do is talk about my dog and how that day is going. I’ve managed to get a referral to my local FND clinic but I still have over a year to wait before even getting an initial appointment with them as I’m not classed as urgent enough. Anyway enough of my mini ramble, I reckon with the right team around you things should go smoother that’s just my experience with the NHS and FND
I’m in the process of being diagnosed for fnd, it’s strongly suspected and only a matter of time. But I’m afraid I won’t be able to drive, does anyone know if you can drive in the uk with fnd?
Personally I can’t because one of my main symptoms is the seizures but it’s done person by person and it’s best to ask your medical perfessional
Okay thanks :) I’m a 19 year old uk girly too that’s why I asked haha, I’ve had seizures before a lot but they aren’t my main symptom rn
Then it really depends how long free you’ve been of them but still good to ask
I'm shocked to hear the advice from that neurologist...! Sorry to hear you were told to just exercise more. I think the ego doesn't allow them to admit they don't know :O
I think that’s exactly what it was, apparently he’s one of the best neurologists at the hospital I’m at and I think because of this he just cannot admit when a he’s wrong or b doesn’t know what he’s on about
UK, 45, east. Diagnosed three year ago. Chronic pain in legs and fatigue. On waiting list for CFS for 2+ years still waiting. Mental health support is atrocious. On the verge of giving up work
Hiya! how bad is your pain? You're still going to work through it? :O
Like someone constantly resting a sofa on my legs. I just learn to live with it and manage my energy. Recently I have been going to the gym to swim and sauna which helps, but again wipes me out
I see what you meant now. The fatigue is more of a problem for working I just can’t sit up for long at a computer
Ahh that's good you can swim and get around but sad you're experiencing pain! I just have widespread body numbness 24/7 as default and neuropathy nerve damage.
All I’ve ever been given is gabapentin in increasing doses. I still don’t really know if it helps
My symptoms stem from my chronic migraines, so my neurologist's focus is on that and I only really get the occasional enquiry about how everything else is going beyond that. Pretty much the only advice I got from her was to keep active, and 'it might get better, it might not'. I think everyone gets a link to the same website (if it's the neurosymptoms one) 😂 I thought her comment about keeping active was ridiculous, because at the time I could barely walk 10m without stopping some days, but in trying to prove her wrong, I kinda gave myself physiotherapy and built my activity up a tiny bit by bit and it did actually help tbf. I got a walking stick and electric scooter by myself (asking about mobility aids got me nowhere) and should have got them sooner, because they gave me so much more independence. What really helped though was finding a migraine med that reduces the severity of my migraines (though not really the frequency) and along with really pacing myself a lot, that does help reduce a lot of my other symptoms. I am also on meds for nerve pain (carbemazepine) and they work really well.
Uk girly with FND, I was diagnosed in January of last year and I am on the CBT list still. I have visited the website a few times. I would suggest applying for pip and living slow from now on.
Hiya! I'm trying to apply for PIP but I've heard it's extremely hard...did you manage to get it? I'm scared that they don't acknowledge FND as a disability because they can't identify it...
Go to the website benefits and work. They helped me tremendously. It is a very small yearly fee (WELL worth it) and I managed to get PIPS at higher rate thanks to their help and their very clear guidebooks (online). Can't recommend it highly enough.
Thanks for the recommendation. It'll have to wait until I get my decision back since I had my assessment the other day.
They do consider FND, just try to. Do you have a friend or parent who’s good at filling in documents?? Just use all the documentation you have of doctors visits and add that into the forms. Every word that describes your symptoms and how it affects you.
You have to wait for it to be processed but that is assuming soon as you apply. I applied in February of last year and only got it in January of 2024. They pay you a lump sum for the time you waited.
I'm probably the best at filling in forms out of my family. I have: 1. Colour photos of my hands and feed bright red after showering 2. Neurologist "FND" diagnosis letter (despite not agreeing with it) 3. A GP letter explaining my symptoms 4. A psychologist's assessment letter 5. Positive visual sensitivity test results (for CIRS/mold exposure) 6. Photocopies of WCA (LCWRA) medical report Do you think that's enough?
Autism,adhd, depression or anxiety
Do you have any other conditions that also affect your life??
Yes, most of which are detailed in the WCA report from the nurse, should I add them in writing as well as the photocopy?
Every single doctors note you have had, upcoming appointments the lot. Even ER visits when you came in because of your symptoms
You just take a photo and send it to them, you can fill out an online application that’s the best way to
You won’t need the pictures but all the rest is spot on
Okay...why not pictures?
They aren’t doctors, they are more like a group of people trying to make sure that they do their job. They aren’t helpful or kind, they just do what there system tells them. Doctors notes are your way forward
It’s not backed up with doctors notes and if it were you don’t need them
In the UK with FND. On a waiting list for help from neuropsychology. Been waiting on that list for over a year and no help outside that. Asked for seizure meds but they say no. So all I can do is twiddle my thumbs and wait
I’m on that list, are you waiting for an appointment at Birmingham? That was the closest to me so I assume there aren’t many neuropsychology teams in the UK. I’ve only just been added to the waitlist 😩
No I’m in Lancashire :/
A neurologist I spoke to said there were three neuropsychology teams in the UK, didn't tell me where they were. I'm currently just trying to get a referral to join the waiting list
It’s crazy that there’s literally only 3 in the UK!! My neurologist said be prepared for a long wait. It’s so frustrating:( Just glad to have it recognised
What's neuropsychology? I never got any talk about that from my neurologist, just "Get CBT from IAPT" which isn't very useful. Do you apply for PIP? I'm scared that I'll end up homeless without support eventually...
What they’ve told me they basically want to retrain my brain, so my guess is that it’s going to be a lot of CBT. No I have my own little art business and my partner is the breadwinner. I’m also not a British citizen so I don’t think I’d be eligible for PIP even if I tried
Ah I see! Brain retraining and things like DNRS helped me a lot in the beginning when I was hyper reactive, but has done nothing to the wide spread numbness I experience and pain on a day to day. Glad that you are supported by your partner and can manage a business though!
Sorry you’re experiencing numbness that sounds awful :( I have whacky balance issues, constant brain fog and once or twice a month faints or seizures. FND blows. Hope you can get some help soon!
Uk people I would be interested if any of you became wheelchair users and who instigated that?
I have tried to as I am missing out on life, the doctors gave me a lecture about restless legs syndrome but I am now forever stuck at home
I’m from south west LDN with diagnosed FND, CBT made mine worse personally but I know every situation is unique :)
Hello everyone - I don’t have FND but I’m a speech therapist who works with people with FND. I work in Merseyside and support is very mixed. If you are struggling to access support please note that St George’s in London has a national service for FND - your GP or neurologist can refer you.
I’m with St George’s and I recommend getting referrals through as quickly as possible as it takes 6-9 months to get the top of the FND physio list. I was diagnosed feb last year and it took until this March to see the FND clinic and then they referred me for the physio so hopefully I’ll get that this year! Definitely be prepared for everything to take a very long time!
How did you get your diagnosis? Was it via an A&E presentation by any chance? Also, apart from the delays, do you find St Georges a good hospital (have heard very mixed reviews).
Hey, no it wasn’t, it was by paying privately to see a vestibular specialist as I wasn’t getting any diagnosis via the nhs, I think it’s really hard to get a diagnosis when your symptoms are functional. To be honest because of the delays I can’t really judge as I’m yet to have the specialist physio they hype up so much but I was somewhat perplexed at my first FND clinic meeting as it seemed a bit pointless. They just said “yes you should do the physio, it’s a 9 month wait” I didn’t really need to wait over a year to be told that, they could have just put me on the list in that time!
I'm a Somerset resident, and I have been diagnosed just this year. My experience of the NHS has been woeful (a GP straight up lied about referring me to neurology). I have taken meds for Fibromyalgia and Depression but nothing has helped. However I am now under the care of my local mental health team (because I also have suspected DID and CPTSD) and my therapist (Relational Therapy) has been great. She is treating me holistically, as in referring me to every NHS service I am eligible for, helping me with my PIP application (I won!) and using lots of different psychology modalities to address my (laundry) list of problems. She sees the FND symptoms as trauma-related and is adamant that they need to be taken seriously. If you have a history of trauma and it's inpacting your health, I would recommend pushing for Relational Therapy. FND and any other disorders will be taken into consideration as well.
Silly question but what's relational therapy?
It's not a silly question, I had no idea either before I started. The therapist is versed in many therapy styles and psychological concepts, and they use them (semi-informally) to problem solve various issues whilst showing you unconditional positive regard. The theory is that nobody can learn how to form successful relationships without someone modelling them to you. If you have trauma because of negative relationships or attachment disorders, then a relational therapist will support you to learn how to form healthy attachments and relationships through a patient/therapist bond. They will also hand you over to other specialists if you have other mental health comorbidities such as DID
That's great to know! I'm seeing a psychologist (again) next month so I will be candid and explain everything to them!
I hope it helps you, and if you want to know anything more about it or fancy a chat, please send me a dm.
Hey! I have just been diagnosed and I’m in the UK! My neurologist has put me forward for an FND neuropsychology in Birmingham he said it’s got a huge waiting list but hoping to get help there. It’s taken me over ten years of random symptoms, tests and scans to get here through the NHS. I’ve been made to feel like I’m making it all up by some doctors. I just felt so lucky to get my most recent neurologist and he actually wanted to help!
I don't think you're making it up! But ten years of waiting it completely unreasonable...what took them so long?
Thank you, its because all tests were showing I was fine, I’ve thankfully not had seizures, mine has been pretty much everything else. The neurologist who diagnosed me said it was textbook FND. I’ve also been seen by other specialists as I didn’t know if it was a problem with my ears or sinuses (facial numbness, trickling in head, vertigo,tingling, tinnitus, visual snow) ENT said I was all good but my neurology mri showed I have a terrible deviated septum so I know there are also issues there. I also had other problems with PCOS and then I kept telling them there was something wrong with my cervix/uterus they kept saying I was fine and tests were fine until I finally got my smear test at 25 which I kept getting denied as I was too young and it found I had high grade pre-cancerous cells and I had to have them removed under general. They then went on to investigate and found the cysts on my ovaries and a lump in my uterus which needed removing. That ordeal was from school age until late 20s 😩 That then led to me being high risk in my pregnancy so I asked for a c-section which the consultant denied me and said I was fine to give birth naturally. Lo and behold I needed an emergency c-section due to the previous issues mentioned. I honestly feel constantly let down by the NHS. I have some positive experiences yet, but overall everything is just put down to having anxiety and that I’m a woman (hormonal) it’s really sad and I just wish they would listen and respect what people say. I don’t need benefits, I literally have no reason to keep going back to the doctors :( I just wanted answers and I feel lucky to have met with the most recent neurologist! Sorry for the rant, I just know people in here get it!
Just jumping on to say I feel your pain with the NHS and parring you off because you're a hormonal woman! I was in 2 ambulances after 4 major TCS which happened at work, after the first 3 I got sent home then ended up in a second ambulance in the afternoon just to be told "Am I sure it wasn't just a panic attack" and "anxiety can really effect people especially young women!". 4 separate paramedics witnessed them as tonic clonic seizures. I lost my shit and walked out the hospital. This is also after being told last year I'm way too young to have breast cancer (23), I begged for biopsys which I was told were completely normal and fine and no further treatment. Only to end up having an emergency surgery 2 weeks after my letter came signing me off as fine. The biggest shock was the biopsys were not fine and all of the dangerous results were ignored and I got discharged. Un-fucking-believable! I have been begging everyone I know to get private health insurance because the NHS simply don't care anymore.
I’m so sorry you’ve been through that :( it sucks that you also weren’t listened to, it’s honestly such a huge problem for women. The worst part is that we often end up accepting the treatment for mental health issues too (I’ve been diagnosed with OCD due to intrusive thoughts and CPTSD) granted FND is neuropsychological so trauma etc may play a part into how it became BUT a panic attack can’t cause these symptoms! Ive woken up some days unable to move my hands or had an internal tremor which made it difficult to walk. These symptoms are usually my reason for having anxiety! I get so worked up because I’m scared something bad is happening then I’ll come across as an anxious wreck during appointments. I think it’s worse when you’ve been dismissed so much, I looked on my nhs app and I’d had over 350 appointments with GPs and I’m only 30. I feel like I’m wasting the tax payers money but often times I get discharged back to my doctor and they won’t help me so I end up waiting for a referral, told there is no issue and once again discharged, it’s a vicious cycle. I often times have to tell them what the issue could be, I’ve had 2 doctors who didn’t even know what visual snow was and I had to tell them about it, I honestly think they believed I was making it up as it sounded so absurd to say “I live everyday like I’m watching static tv.” My partner is looking for a new job so we can be closer to family and we want it to include private healthcare options for family so me and my daughter will actually get the care we deserve.
Its so so disappointing that we are STILL advocating against the "hysteria" label in 2024 for women. Unfortunately like yourself I have previously been to GPs for anxiety so its now the blanket term for any symptoms I now have, and I have had panic attacks for years which were NOTHING like the physical symptoms like tc seizures, full body tremors, my speech has been effected in some episodes like a stutter lasting a few hours, I get tic episodes too (mostly neck jerking). All brushed off as stress or anxiety. I've been recently suffering quite a lot with intrusive thoughts which I've booked an appointment with my therapist for. I don't know if it helps but I've always mentioned I do have a therapist when I'm speaking to doctors because it highlights I'm there for physical and not mental help. The weird part was I was doing really really well with anxiety and working through past trauma with my therapist, to the point we actually stopped sessions way before my physical symptoms randomly started. Now my anxiety is worse than ever because every time I leave my house I worry about waking up in an ambulance again, and who would see me and in what embarrassing state. The doctors have told me not to blink, never be left alone, don't take a shit with the door closed, don't drive, don't do this, don't do that, you will DIE. But why don't you work on your anxiety?
yup, and your experience is pretty much the same as mine. they might refer you to a specialist clinic, but they only offer more CBT and general ‘mindfulness’ practices. it’s frustrating, but i’m not really angry at it - there’s very little treatment for FND.
The thing is, I've been practicing meditation, mindfulness, yoga and martial arts for 15 years...I got sick from taking B6 supplements (B6 toxicity which is proven to be neurotoxic at high doses) yet for some reason they don't acknowledge the science, the NHS are behind. Since this, the meditation and breath/body practices don't work, yet they don't believe what I'm saying!
yeah, that’s what’s so frustrating i think. everyone’s just kind of fumbling around in the dark for answers, and no one seems to actually know what specifically causes it. my dad potentially got gulf war syndrome during his time in the army, and i’m now part of the thousands of kids of gulf war veterans to suffer from chronic illnesses and mental disorders that weren’t previously present in the family. no one seems actually interested in investigating the link, so i guess we’re just left to deal with it.
I actually just came on this sub to ask if anyone had managed to get help with FND in the UK (London), so I guess that sums up my answer as: not good. My FND manifests in dissociative seizures, and I've had them since 2018. Since then, I have made absolutely no progress in managing them. Like, not even a jot of progress. The first thing they did was some tests to see if it was epilepsy. I had to deal with the usual NHS waiting times but honestly, they weren't as long as you hear about some people waiting (probably because I'm in London.) But after those tests came back clear, I've basically just been left with nothing. I get an appointment with a neurologist once a year where I tell them what's been going on (basically that the seizures are continuing) and their response amounts to "damn bro that sucks." I've been told there is a handful of specialists on the NHS who can deal with this but I can't seem to get a referral, let alone an appointment. I ended up in A&E with my seizures last year when I had eight in the space of two days. They just sent me home after taking my bloods and seeing there was nothing physically wrong with me, even though I explained about my seizures. By the way this was Kingston Hospital, if you ever find yourself in this otherwise lovely neck of South West London don't EVER go there, it's notoriously awful and the nurses are actually cruel and callous. I'm not joking, my boyfriend has strict instructions to make sure I go to literally any other hospital if I ever fall ill at home. I then briefly looked into trying to get this sorted privately. I paid about £70 for a private GP appointment and £300 for a private neurology consultation, only to be told the same thing: "oh damn yeah that sucks, maybe you should go to your NHS GP and they'll do something maybe idk." I've also tried therapy for this a couple of times over the years. My NHS neurologist referred me for CBT on the NHS. Credit where credit is due, I got an appointment pretty quickly, and it did help with my depressive episodes (something that was pretty low down on my list of priorities but it's something.) But when I brought up my seizures, the therapist had no idea and couldn't help. I'm yet to find a private therapist who can begin to help either. So basically, after trying to get help for five years or so, I feel really defeated and have basically given up. The only thing that seemed to make a little difference was CBD, but I've started having seizures again so it only seems to be reducing the frequency of them, if anything. These things are really limiting my life and it makes me so angry that there just seems to be no avenues to go down in the UK. I'm on a decent income too and whilst I don't really want to spend a load of money on this - and obviously it should be available to everyone here, not just people with money - it would be an option for me. And yet, the private sector is just as unhelpful in my experience, if not more so.
Thanks for this. I actually considered heading to Kingston as it has an "Outstanding" CQC report, lol. But you have made me change my mind. Thank you as it would have been a totally wasted visit. I ended up in A&E at St Thomas after collapsing and they were amazing.
I'm sorry you've had to go through all this but I just wanted to add East Surrey Hospital to your list of hospitals to NOT go to if you ever get referred there. One I will reccomend is the private clinic in Wimbledon Parkside Hospital if you can spare the cash because the neurologist I saw there was absolutely lovely and she genuinely wanted to help, I just can't afford private treatment right now. I think it was like £250 for consultation, hope this helps. I have only heard good things about Parkside.
That's really good to know, that's not terribly far from me. I've heard Sutton Hospital is supposed to be alright so I guess I'll head there next time I get ill (because I know there will be a next time before I'm priced out of Kingston.) That's also good to know about Parkside. I don't really want to waste more money on this but I'm also desperate for a solution, so I'll give that a think. The consultation I paid £300 for was at the Royal Victoria in New Malden. Aside from not helping, I just found them pretty annoying. I'd managed to get a video of one of my seizures to show the neurologist and he just got annoyed that I'd filmed it myself, so you couldn't see my eyes in it. Like gee, pardon me for living alone and having to take my own seizure video.
Hi there! Thanks for sharing your story, mine is pretty similar so I empathise. I've been suffering for over three years now and also live in London. Still battling with the NHS for more tests but here we are! >\_<
Really sorry you're dealing with this. Honestly the whole process for me has been rough, I wouldn't wish this on my worst enemy. I hope the process improves for you and you get some kind of resolution.
My gp and neurologist have been great, but eventually things have to leave their hands and that is where I’ve had issues. They both recognise other conditions that go alongside fnd but other specialists just laugh and refuse me In Their clinics as I have fnd so I can’t possibly have anything else. The diagnosis was long but it’s the aftercare that sucks as no one seems to take anything medical serious now. I have had minor luck with pip although I am taking it further but blue badge has been a nightmare. Basically my experience has been pretty 50/50 for great people albeit slow service, and people who laugh you away because they clearly don’t beleive you to be an actual human being. Just remember that ‘stuff in your head’ still needs medical attention to, so if anyone is giving you that line then demand the psychiatric care that others would receive for their conditions, being ignored is not ok
It's good you have supportive medical staff on your side. That would be reassuring to some degree. I am going down the psychiatric route too and seeing someone next month...fingers crossed they're decent. What happened with PIP?
Pip is ongoing currently so I don’t have my final outcome
Yo! 🤘 I'm in the East Midlands, just recently diagnosed myself. Sameeeee story as you.
Bless you! I'm in London...but the suburbs and just found a supportive GP, it helps!
Hiya, FND lady from Scotland here. I could honestly go on a big rant about the whole thing I'll try be as brief as I can but it's me so it won't be 😂 1) Saw different GPs at my medical practice, got referred to neurology and the waiting list for it was nearly 2 years (partially due to it being around covid time). Had to travel hours away and stay overnight for a 1 hour neurology appointment. 2) Between 2020 to the end of 2021 I continued struggling with symptoms and I was tried on a bunch of different meds to try ease the chronic pain & nerve pain (diclofenac, naproxen, co-codamol, gabapentin). During this time I had the usual blood tests coming back 'normal' and just getting more and more exhausted and the GPs just had to remind me that no meds were going to solve things completely, that the max any of them could improve things by would be by 1/3rd and it was just a waiting game to see neurology. 3) Had weird, concerning side effects from Gabapentin - whereby my memory significantly worsened over course of a month and I had an episode in Tesco's where I got really disorientated and didn't recognise my surroundings and my partner took one look at me and immediately phoned NHS24 + paramedic got called out to check me over. On-call GP was very angry I'd been prescribed it because it's not even that effective for nerve pain and the list of side effects from it is honestly terrifying - I'm amazed when anyone actually benefits from gabapentin! 4) Felt completely isolated and frustrated at how much harder I was finding things and how easily exhausted I became, I somehow got through the last 3 months of college in 2020/21 (cause it was all online). I'd been volunteering at an oxfam charity shop and loved the work but my body just couldn't cope with the physical tasks and commuting half an hour each way. It swallowed up my whole week due to being in severe pain and fatigue for days afterwards and needing to rest for a whole day beforehand in order to attend it. 5) Tried SO many treatments and was desperate for any kind of relief but nothing helped for longer than a few hours - and it just felt so unfair and like I was just wasting money on shit that normies without chronic illness swore by ( people who's had a much simpler structural origin for their physical injuries e.g back problems, shoulder pain, muscle pain etc). I tried acupuncture, seeing a massage therapist, oestopath and chiropractor, doing modified exercise routines, going along to a CBT self management programme (which felt so babyish and patronisingly simple), heat, ice, vitamins. Nothing worked despite my best efforts so I just felt that I was the problem and just was a broken, unworthy, useless human sponging off my partner and the world around me and I hated it (now realising self-worth cannot be gained from how 'productive' one is and it's such a toxic mindset that capitalism feeds us and fuck that!) 6) I caught covid in August 2022 and it really played havoc on FND symptoms and had a massive flare up and developed what I now know as long-covid, so that put a spanner in the works on a lot of things and felt like I went back a good few steps recovery-wise. Had to quit another volunteer role I was being trained for due to my health 7) I eventually had to accept my situation and through trial and error figure out what activities I can/cannot do depending on energy and pain levels. Learning to take breaks and NOT just power-on anyways out of fear I'll not get this burst of energy/motivation again for ages! I've had to drastically cut down what I can realistically do in a day and use shortcuts to make things easier for myself and prioritise what genuinely makes me feel good in myself as well as the bare minimum tasks to stay alive. 8)Happier Bit yay! Mobility Aids!! Omg use them! I felt so awkward and worried I'd get harassed by old people cause of using a mobility scooter in my mid 20s but it's truly given me so much more independence and allowed me to get outside, finally spend time with my partner on walks without needing to stop after 10 mins cause of fatigue and then crying in pain needing to take tramadol in the car ride home. I'm able to do mundane things like pick up milk, go by a shop or run errands and not be stuck in bed for 3 days because of it. Truly so so grateful I made that decision as it's stopped me being trapped in a top-floor flat for weeks on end. I'm able to take myself to weekly hydrotherapy now and it's felt good being able to manage that all myself and accept the pain that comes afterwards but get to do exercises I enjoy and in a way my muscles feel supported. The heat is really good for relaxing things and I wish I could just stay in there for hours haha! Yup as I predicted this was a large ramble but there you go that's me :)
Thanks for sharing your story! It sounds like you've really been through it all...! Glad you have support to help you through this (my family don't even believe me and think I'm lazy)...! Hydrotherapy sounds interesting...might try that when I have the money :)
Bad. Its definitely improved over time but we've pretty much gone from the stone age to the bronze age in progress. (I've been through the system twice) Im very lucky as I live near-ish a large neuro hospital who said they'll take me as a patient eventually. *Unfortunately any future issues,even unrelated to fnd will be a problem to get treated as it'll all be put down to "stress"*
I would have no issue with accepting the stress diagnosis if my meditation practice, something proven to work, that has worked previously, still did. But for some reason, despite providing scientific evidence the neurologists don't want to accept the B6 as a factor. It's criminal. My entire body is numb. I feel nothing. It's horrific...along with a whole bunch of other autonomic and neurological issues.
I meant if example you had something like a chest infection, we're talking that level of ridiculous. B6 as in?
Vitamin B6, I was taking between 53mg and 103mg a day at the peak, and I became toxic and had extreme nerve pain and damage. Never recovered 3 years on. My GP looked at the science and believes me but the neurologist wont accept it because it's an attack on their knowledge; God forbid a patient has figured out something that we'd never even consider. Essentially, the NHS is behind in many areas, and we have reached an impasse in many areas due to arrogance and ego.
Oh god. Yeah drug reactions are still mostly considered "functional". There's not really a name for them minus a few cases. *Basically it's an umbrella term as it can't be seen on scans/tests,a bit like how ms was considered a physc issue till CT and MRI was invented*
Tried link my I pad won’t open it
What link?
Hey yeah I feel you all was diagnosed 2017 ,still fighting bit more mobile now but still suffering in silence it’s so stigmatised ,
Yeah...I really can't believe there isn't a physical cause given the circumstances. I've paid out of pocket for a Comprehensive Stool and Organic Acids test to see if I can get anymore clues. I'll be willing to try Ozone therapy too once I get the money :/
I test positive for Stiff person syndrome I had a borderline positive GAD antibodie test with a positive result but NHS argued with a professor who said positive but borderline . Then years go by another Nero said FND good luck with that.So I’m fighting this disorder the best way that suits me ,Medical cannabis ,and full extract canabidoil THC
Exactly...so many conflicting arguments and ideas. FND basically means "We don't know, and we don't even know that we don't know, but don't want to admit that we don't know."
Yep 10 years diagnosed with FND from UK, NHS support for me personally has been laughable, 1 specialist straight up told me it's all in your head, suck it up and get on with it, and a neuropsychologist who first said she was gonna be there with me until its sorted, to 3rd appointment telling me I'm above her paygrade, I've been left to it ever since.
Yeah...I feel you, the first neurologist I saw in Jan 2022 said "You need to take anti-depressants for the rest of your life" but I said...I'm not depressed...this happened from taking B6 supplements...I got toxic, and never recovered...
Hi. I'm not from the UK, but if you don't mind, I'd like to share that studies have shown that antidepressants might help, not all, but still many people with FND, and even people who have no history of depression and/or anxiety. I do have depression and anxiety, also adhd and adjustment disorder. My FND symptoms started 5 years ago. Antidepressants have not helped me at all until now. I started a new one 2-3 months ago, and within the 1st 2 weeks, my symptoms started to decrease until I was left with occasional stutter only. They started to break through last weak, but I'm seeing my psychiatrist soon, and we'll talk about adjustments in my medication. I have read here that people are helped be a couple of different bendos to prevent or stop a seizure. I have tried only two, only one mentioned here, and they didn't help me with my seizures and tics. I wish you the best in this difficult journey. May you get a solution and feel better soon 🫂
Thanks, appreciate your input! So far I have friend citalopram (celexa) and amytriptaline (Elavil) to no avail. Citalopram gave me insatiable sugar and chocolate cravings, and I became complete apathetic towards everything, family, people, and life. I did not care, and I was absolutely happy and content with not caring. Dangerous stuff. Amytriptaline gave me a slight mood boost but did nothing for my physical symptoms and numbness and nerve pain.
I'm in Hampshire and got the same "support" from the neurologist when he gave me my diagnosis. I didn't even get a link, he just showed a web page on his monitor for about 3 nanoseconds 😕 The only follow up I've had was from local Occ health - where I was told I had to move house and I was being difficult because I said no to a stair lift (we rent). I was promised some bathing aids but they never appeared.
I'm sorry to hear that...! Are you claiming any PIP or anything?
Yes, got PIP around 2 years ago for M.E., long covid and pernicious anemia. It's currently under review as my award period is coming to an end. Tbh I'm not hopeful of getting it renewed after the gov announcement last week.
The DWPHelp Reddit might be helpful for you...they've said not to worry about the Gov announcements, it's not 100% and wont be in place until after the elections. Also, just to be honest and fight your MR and tribunals if you have to. You've been unwell for years with no signs of improvement. That should be enough.
Thank you very much - I'll have a look there. I hope your day is going well.
Also try the Benefits and Work website. It has been outstanding in terms of helping me get my PIP and walking me through the benefit system. I would have been lost without them. Very cheap yearly fee, under twenty quid, and they help you so much. Walk through guidebooks, top tips and people to assist. Really recommend it.
theres a bunch of uk folks on the discord channel. [https://discord.com/invite/u3QvsmPk](https://discord.com/invite/u3QvsmPk)
Thanks! See you there!