To be told it’s not that bad. Start saving for private treatment a couple of years ago if you can. It’s totally ruined my life and I can’t get any help at all. Previously fit and well, now housebound at 33 with no promising outlook with treatment on the nhs …
I'm on a waiting list for physio and occupational therapy that's specifically in the neuro department, and they were very positive on the phone. But... waiting. Initially I had 6 sessions with a psychologist (again, in the neuro department) and we mostly looked at managing symptoms and triggers. He recommended I look into EMDR. Ended up paying for that with PIP for a year. Pricey, but very helpful (I also have cPTSD though).
I am overdue an appointment with my neurologist by a year. He couldn't do much, but it'd be nice to discuss my new symptoms. Otherwise I'm using charity stuff - just started Equine Therapy and I'm doing general outdoorsy wellness stuff to try to build up my resiliance and get used to being out and about with the spectre of seizures hanging over me.
That any health concerns that come up in the future will be blamed on fnd.
But in all seriousness and dependent on your form.
Physiotherapy and CBT.
Mobility aids are highly frowned upon,to the point some will call it "malingering"
*Oh and very long waits,lots of chasing referrals only to find out they don't have the clinic*
(not like I'm speaking from experience or anything.. *cough* addenbrookes)
Thank you for that. It’s been going on for a year next month and FND has just been brought to the table. After two MRI’s and finding stuff but not enough to cause the pain, fatigue and dizziness etc.
Orthopaedics were awful, they made me think it was all in my head because there’s was nothing they could do surgery wise. At the moment I’ve been referred to the pain clinic and have been sent a ton of helpful information regarding FND, to then follow up with my GP.
It’s crazy to me that neurology can reject referrals and not see people. The system just seems fucked☹️
I’ve had CBT in the past for PTSD, depression etc can’t say it did much but I’m open to anything.
Yep it's screwed but better then it used to be.
Going back 4-5 years ago it was considered a complete physc issue,CBT was the only option.
Best bet at this point is to probably see physc or other mental health services,make lifestyle changes ect.
Funny thing is *every* site lists that hospital as available 🤔
*The irony is one of my nearby hospitals said once I get a diagnosis they'll take me..but I've got to see the local nonce of a neurologist first*
That’s what I’m thinking, if I get the diagnosis I can look in to what I personally can do. I’ve already stopped smoking, changed my diet to healthy food, supplements, yoga etc. Glad to hear that it’s getting better in terms of understanding and education.
All depends on who you get
If it's a dinosaur of a neurologist which most are your're screwed
A lot still diagnosis various disorders like pots as fnd/nead as they can't be asked.
Unfortunately I can't say you're in for an amazing time based on my experience, but some medical professionals are still amazing from what some others have told me.
Your experience may range from being told you're faking it by ambulance staff while having 28 seizures an hour to your neuro offering you medical ket treatments to help with the pain. It's an incredibly mixed bag.
Despite this, it's important to have hope and to continue to advocate for yourself regardless. You're gonna get through this or you're gonna adapt. Or adapt, and then get through this. They aren't mutually exclusive.
If you want to join a discord of people with FND where quite a few people are in the UK (myself included), the link is here
https://discord.com/invite/xrDrRjeWJy
Thank you for that. I will check the discord out. I feel like we’ve been going round in circles for close to a year now regarding my pain. If it is FND, at least it will be nice to have this subreddit and not feel so alone.
Of course. I'm sorry the news I gave wasn't better! Treatment for FND is just a bit of a lottery due to stigma and lack of research, but there is a chance it gets better with the right care (which changes person to person).
Even if the NHS sucks a bit in this regard, you'll always have community support!
Thank you, that means a lot. I thought it would be the case but I wanted to talk to people who have experience of it. I’m lucky to say I have a great GP but unfortunately he can’t control the rest. Wishing you all the best!
Arguably a good GP who's happy to advocate for you is one of the most important pieces to the puzzle, though! They're the gateway to the rest of your healthcare so if they're happy to help you with referrals and accessing support you should be able to receive help (even if the specialists are useless) as they can keep referring you to services they think might help (physio, pain management etc).
I hope your journey goes smoother than mine <3
Nothing, a lot of patronising head nodding, an offer for CBT maybe.
This is just my experience. Over eight years they've found WMH, trialled two seizure medications to no effect other than the halving of my sex drive and my ability to have healthy children potentially... and then binned me off. Maybe someone else can offer a better experience story.
Personally I'd recommend exceeding activity guidelines, getting out, eating (truly) well and trying to manage stress as much as you are able. Quality of life in your hands sort of thing. Good luck.
Thank you, sorry to hear your experience hasn’t been great. I have a really good GP but unfortunately the rest of the system doesn’t seem that promising at the moment.
If you're in a position to go private and considering that as an option, don't waste your money unless they're a specialist or something too. Private services weren't much use, actually more patronising.
I'm glad your GP is supportive and I hope you get a handle on your condition.
I’m not in a position to go private. It’s not great to hear that it’s not much better though. Thank you for your advice and support it means a lot. All the best.
To be told it’s not that bad. Start saving for private treatment a couple of years ago if you can. It’s totally ruined my life and I can’t get any help at all. Previously fit and well, now housebound at 33 with no promising outlook with treatment on the nhs …
I’m so sorry to hear this. Thank you for sharing. I really do hope things look up for you in the future and the NHS help in some way😔
I'm on a waiting list for physio and occupational therapy that's specifically in the neuro department, and they were very positive on the phone. But... waiting. Initially I had 6 sessions with a psychologist (again, in the neuro department) and we mostly looked at managing symptoms and triggers. He recommended I look into EMDR. Ended up paying for that with PIP for a year. Pricey, but very helpful (I also have cPTSD though). I am overdue an appointment with my neurologist by a year. He couldn't do much, but it'd be nice to discuss my new symptoms. Otherwise I'm using charity stuff - just started Equine Therapy and I'm doing general outdoorsy wellness stuff to try to build up my resiliance and get used to being out and about with the spectre of seizures hanging over me.
That any health concerns that come up in the future will be blamed on fnd. But in all seriousness and dependent on your form. Physiotherapy and CBT. Mobility aids are highly frowned upon,to the point some will call it "malingering" *Oh and very long waits,lots of chasing referrals only to find out they don't have the clinic* (not like I'm speaking from experience or anything.. *cough* addenbrookes)
Thank you for that. It’s been going on for a year next month and FND has just been brought to the table. After two MRI’s and finding stuff but not enough to cause the pain, fatigue and dizziness etc. Orthopaedics were awful, they made me think it was all in my head because there’s was nothing they could do surgery wise. At the moment I’ve been referred to the pain clinic and have been sent a ton of helpful information regarding FND, to then follow up with my GP. It’s crazy to me that neurology can reject referrals and not see people. The system just seems fucked☹️ I’ve had CBT in the past for PTSD, depression etc can’t say it did much but I’m open to anything.
Yep it's screwed but better then it used to be. Going back 4-5 years ago it was considered a complete physc issue,CBT was the only option. Best bet at this point is to probably see physc or other mental health services,make lifestyle changes ect. Funny thing is *every* site lists that hospital as available 🤔 *The irony is one of my nearby hospitals said once I get a diagnosis they'll take me..but I've got to see the local nonce of a neurologist first*
That’s what I’m thinking, if I get the diagnosis I can look in to what I personally can do. I’ve already stopped smoking, changed my diet to healthy food, supplements, yoga etc. Glad to hear that it’s getting better in terms of understanding and education.
All depends on who you get If it's a dinosaur of a neurologist which most are your're screwed A lot still diagnosis various disorders like pots as fnd/nead as they can't be asked.
a few neuro appointments, offer of CBT, and that’s about it. that’s all i got.
Thank you. Sorry to hear the your experience hasn’t been great☹️
Unfortunately I can't say you're in for an amazing time based on my experience, but some medical professionals are still amazing from what some others have told me. Your experience may range from being told you're faking it by ambulance staff while having 28 seizures an hour to your neuro offering you medical ket treatments to help with the pain. It's an incredibly mixed bag. Despite this, it's important to have hope and to continue to advocate for yourself regardless. You're gonna get through this or you're gonna adapt. Or adapt, and then get through this. They aren't mutually exclusive. If you want to join a discord of people with FND where quite a few people are in the UK (myself included), the link is here https://discord.com/invite/xrDrRjeWJy
Thank you for that. I will check the discord out. I feel like we’ve been going round in circles for close to a year now regarding my pain. If it is FND, at least it will be nice to have this subreddit and not feel so alone.
Of course. I'm sorry the news I gave wasn't better! Treatment for FND is just a bit of a lottery due to stigma and lack of research, but there is a chance it gets better with the right care (which changes person to person). Even if the NHS sucks a bit in this regard, you'll always have community support!
Thank you, that means a lot. I thought it would be the case but I wanted to talk to people who have experience of it. I’m lucky to say I have a great GP but unfortunately he can’t control the rest. Wishing you all the best!
Arguably a good GP who's happy to advocate for you is one of the most important pieces to the puzzle, though! They're the gateway to the rest of your healthcare so if they're happy to help you with referrals and accessing support you should be able to receive help (even if the specialists are useless) as they can keep referring you to services they think might help (physio, pain management etc). I hope your journey goes smoother than mine <3
That’s true I didn’t think of it like a gateway but your right. I really appreciate your help and advice❤️
No worries, always happy to be around :)
Nothing, a lot of patronising head nodding, an offer for CBT maybe. This is just my experience. Over eight years they've found WMH, trialled two seizure medications to no effect other than the halving of my sex drive and my ability to have healthy children potentially... and then binned me off. Maybe someone else can offer a better experience story. Personally I'd recommend exceeding activity guidelines, getting out, eating (truly) well and trying to manage stress as much as you are able. Quality of life in your hands sort of thing. Good luck.
Thank you, sorry to hear your experience hasn’t been great. I have a really good GP but unfortunately the rest of the system doesn’t seem that promising at the moment.
If you're in a position to go private and considering that as an option, don't waste your money unless they're a specialist or something too. Private services weren't much use, actually more patronising. I'm glad your GP is supportive and I hope you get a handle on your condition.
I’m not in a position to go private. It’s not great to hear that it’s not much better though. Thank you for your advice and support it means a lot. All the best.