Fnd recovery

[Catlady1973]

I was at this fnd meet up it was the 1st night of this group they have me panicking they told me you don't get better from fnd but other people have told me you do does anyone know I need to know if I will ever be able bodied again

[Brian1977]

I know I need to know this for my wife I can't bear to see her go through this with absolutely no help whatsoever it's awful and makes me so angry I want to write to someone bit I don't know who or where to start to get any sort of help

[Catlady1973 in reply to Brian1977]

Before fnd i was able bodied im now on a walking frame I've been getting mixed messages some say yes others no and you get to manage your symptoms having fnd is hell I wish someone would give me a straight answer and explain things I've been looking up fnd sites it is just so frustrating and stressful and get angry as well

[Brian1977 in reply to Catlady1973]

You really have my sympathy I see what my wife goes through everyday and there is literally no help from anyone I find it truly disturbing and I'm sorry that you are all having to suffer like this

[Catlady1973 in reply to Brian1977]

Hi thankyou for replying I wish your wife all the luck as this condition its hell on earth

[FindingNewDreams]

Just bear in mind that most people in support groups and forums are in active stages of illness experiencing many debilitating symptoms and often hoping for some panacea in terms of treatment.You'll therefore see a much greater bias in favour of prolonged illness and won't hear so much of stories where people overcome symptoms.

I was diagnosed in early 2019 after becoming extremely ill in June 2018. I gave up working in a shop and became very isolated for a while - everything seemed impossible and i relied on help from my ex husband tl do anything. Fast forward a few years and I've been able with careful pacing to return to 1:1 music teaching in my local school 3 days a week.

I know i still have to ensure i pace properly but progress is possible. Also single mum to a 12 yr old xx

[Catlady1973 in reply to FindingNewDreams]

hi thanks for replying I got diagnosed in 2023 but had symptoms started in 2019 but not getting any where with drs it was a battle to get referred to neurology sam

[LilyMarshell]

Hey,So, this is a tricky one. Not everyone "recovers" from FND, some only find the ability to manage it.

It's nothing to be afraid of, but it is a long road that can be quite daunting, I know.

Recovery from FND is a symptom free life after a treatment plan has been put in place; sadly, since there isn't a cure, it also means it can reoccur.

Management with FND is having workable symptoms and ongoing treatment, as well as knowing how to handle the symptoms as they arise. This is what most people aim for since it's unlikely to end up on route one if you've not been diagnosed and treated quick enough (for example, I started with FND symptoms from birth - and I didn't get my diagnosis until 2023 - I'm managing my condition).

What they're likely trying to say is that there's no cure, which is true. A lot of people who go into recovery end up with relapses at some point in their life.

Preparing and knowing how to handle it is the key factor.

I'm sorry that I can't tell you if you'll be able bodied again; I keep wanting to know that myself.

[Catlady1973 in reply to LilyMarshell]

hi thanks for replying you've had fnd symptoms since birth why wasn't this picked up sooner I didn't think you could be born with fnd ,but with this condition nothing surprises me anymore with this condition

[LilyMarshell in reply to Catlady1973]

It's actually being speculated that we're born with predispositions for FND, so it can be triggered anytime.

As for me, it was a traumatic birth - I was stuck for quite a while and came out left arm first. It wasn't caught sooner because my doctors just didn't care to look at the bigger picture. After age 6, when my symptoms got much worse, my symptoms got explained away by weight and "becoming a woman"...

They only started caring after I almost died during a seizure for a second time. 🫤

[Lady4]

Hi, I think it is based on the individual and how long they have been suffering and any co-existing conditions they are also trying to manage, sometimes it takes a little longer to put things right but 100% recovery is possible, some may get the odd symptom again but they will be in a better place to manage it.

Its a journey but one worth travelling.

[Catlady1973 in reply to Lady4]

hi thanks for replying I also have mild cerebral palsy and mild autism but what I've got is brick hard heavy nerves and nerves that feel like wire

[Cornelia35]

I believed there is a way to overcome fnd,and I traveled from my country to Uk. There isn’t none. Even the top specialists believe its purely psychological. They just prescribe psych meds for it,which is something that can be done via telehealth. Dont waste your money on costly treatments. Also psych meds are damaging for a person’s overall health.

Even the report they wrote for my fnd is wrong ,when it started etc. (It is documented in my medical records in my country when it started )they don’t pay attention. Extremely disappointing experience ,which actually made my fnd worse.

Maybe in US there are programs with professionals they believe it isn’t purely psychological ,but also neurological-which in my opinion it is for some individuals,just neurological.

A neurological condition that scientists have no answers or treatments which is quite common with neurological conditions. Find a neurologist to help you appropriately and with respect and stay away from fnd meetings etc

🙏🏻

[Catlady1973 in reply to Cornelia35]

hi thanks for replying someone said to try medical cannibus to help fnd do you know anything

[Cornelia35 in reply to Catlady1973]

Hi I don’t know but if something isn’t invasive try it. Try magnesium glycinate, vitamin D. I have pppd and fnd since 2022. I see a lot fnd patients in tik tok and some find improvement with treatments but most of them are like me ,nothing helps ,unfortunately.

Try to be as strong and resilient as you can, avoid stressful situations, watch comedies, aromatherapy will keep you positive.. see on YouTube relaxation techniques, and hope that someday a kind professor will sort this out and if we are not here, at least others wont suffer.. 🩵

[Lady4 in reply to Cornelia35]

There are specialists that can help but tjey are paid multi-disciplinary programmes in USA.

[Cornelia35 in reply to Lady4]

I know, i paid and been to one in Uk probably the best one. Didn’t help ,it made my symptoms worse. Maybe there are fnd patients that indeed have positive outcomes.

I became worse and came to my country and am just in pain 24/7. I would definitely prefer a Us program though i think i get along better with Americans. They have similarities with Mediterraneans like me.

The key is that she keeps trying to find what helps her and never lose hope ! ❤️

[Lady4 in reply to Cornelia35]

Check out Re-Active, I am not associated just a Community Member.

[Cornelia35 in reply to Lady4]

Thank you i know them they are very passionate empathetic just by watching their videos they motivate me 💯.

[tabey]

hi catlady1973

Nice to meet you I’m sorry you joined the Fnd train it’s not a nice ride to be honest

I was told from Kings hospital Fnd is a long term condition with an unknown future I’ve had it over 8 years now I have some good days I have some not so good and some terrible days but you just have to smile your here all types of stories about how people find it some can over come it but it returns others like myself suffer some form of symtom everyday

Just take each day as it comes the NHS is doing very little to do with Fnd and doctors just think your another fruit and nut bar

Just be you listen to your body and welcome on board the Fnd train

Tabe

[Catlady1973 in reply to tabey]

hi Nice to meet you also im so annoyed about this i had been saving to go to disney world now I can't my nerves are brick hard and stiff heavy and its like thin wire as well before I got diagnosed I had drs saying I needed a physiatrist and phyciatric medication another refused any scans treatment another don't know what your talking about and getting myself all stressed and worried about nothing I had a battle to get referred to neurology there were tests done every thing fine and im like what the hell and another says oh you look alright and I said its the inside its the problem drs unbelievable

[Obrien8175]

It has been explained to me by my FND medical team that you can go into remission, though are susceptible to have your FND symptoms reoccurring after time. I was also told that with treatment by PT, the functional movement disorder associated with FND…tics, twitching, paralysis, tremors, etc have a greater chance of remission as compared to functional seizures. I was diagnosed 4 years ago with functional seizures and even with great treatment, OT, PT, SLP, psychotherapy, etc. I am still struggling with seizures and tics. But there is hope.

[Catlady1973 in reply to Obrien8175]

hi thanks for replying luckily I don't get seizures i m affected on my right side leg but I have heavy nerves brick hard and ones like wire but my symptoms just seem to worsen

[Ralphierover2727]

I am being brutally honest. I have FND and I have done everything to heal. From Western medicine, Eastern and everything in between. Yes, you can heal. You will not be the same person though because you have to modify everything. Will you be able to work a regular 9-5 job depends on how well you can identify your triggers. I'm still disabled but when I'm in an FND crisis I can't do shit. I can no longer work in my field. I was a nursing educator. I can't drive. Im on SSDI. My life sucked really bad until i was able to pour my grief of losing my able body into writing and painting rocks. Whilst trying to figure out how to heal. Its a full time job because this FND is a bloody twat to heal. I highly recommend brain retraining and nervous system rewiring. I also do daily meditation and Qigong. Mindset is everything especially when dealing with a chronic illness.

It's definitely not the life I had before but I am learning to love disabled me. I still have bad days but those are the days I spend more time with God. I can honestly say now looking back this shit forced me to slow down and appreciate everything about life. The good, the bad, and the disabled. I know how hard this is. Find things that truly bring you joy and do more of that.. Find more warriors in the FND community. Life will start to become easier then. God bless you. Namaste 🥰😇

[Catlady1973 in reply to Ralphierover2727]

hi thanks for replying before fnd I wasn't working i have mild cerebral palsy autism someone said about medical cannibus to help with fnd do you know

[Ralphierover2727 in reply to Catlady1973]

I have used cannibas before. Yes, it helps immensely.

[Catlady1973 in reply to Ralphierover2727]

thanks sam

[GreenCottage]

From what I've read there is a good percentage of people for whom recovery is possible and some forward thinking health practitioners who are interested in leaning more about what works rather than being stuck on how this condition comes about. So I'm focussed on learning about what works and giving different approaches a chance. I'm following a similar path to Ralphierover and like many on here work at being relaxed and optimistic, some people recover so why not me!

[Catlady1973 in reply to GreenCottage]

hi thanks for replying if I feel stressed thete is wee things I do its to try and rewire the brain 🧠 deep breathing clenching fists etc I see a phycolagist for the fnd what I don't get is why has it made my nerves brick hard heavy acting like wire

[GreenCottage in reply to Catlady1973]

One of the things I have started to work on is what makes my symptoms worse and what helps them. Interestingly I know a lot about making them worse; poor sleep, over exercising, stress etc. I know much less about what makes them better but I have much reduced symptoms when I walk around and if I get really engrossed in something even if it is for a few minutes. I have adopted this approach as thinking about what has caused this seems to be a bit of a rabbit hole for me, and those health practitioners who do help people with FND are very much focused on what we can to to help our condition rather than how it comes about.

All the best with your recovery.