FND Norwich

08/01/2026

Worked my ass off last year to see if I could make a change to the strength in my legs, did lots of walking even started to kick again. I cam safely say that has actually backfired on me a little bit with this flare up that started half way through November and im still in this flare up.

Still keeping optimistic and hopeful, now learning wheelchair life as im not able to walk far at all without falling or intense pain.

Doctors are going to look at my legs after 8 years of me banging on about them so thats a plus amd something about a social prescriber.

Ill be looking into seeing what trials and research opportunities there are, I did have 2 people get in touch woth me but that fizzled into thin air probably because they didnt have the funding.

Ww3 could possibly kick off soon so thats great for the nervous system. Keep safe all.

17/12/2025

Blood tests for me/cfs done, tilt test friday. Hoping this flare up doesn't last much longer as already a month into it and I would really like to get back to doing things again. Its horrible having to change commitments in a flash for long periods of time but we always find our ground again and thats whats important.

I did the hardworking so you dont have too but working out did see some benefits but ive lost all of them in a month. Focusing on pacing now and condensing where I need to travel that will be wheelchair distance. I still wish to learn to headkick but thas gonna be some time. Itll be a good day getting back on the punchbag.

03/12/2025

Ive been terrible at building this page, still hoping to connect with others who struggle with FND though.

I was doing pretty well with ability to push through alot of pain barriers and I had the best summer in 7 years this year. I think I pushed a little too hard recently with doing alot of stuff and ive been rather fried these last 2 1/2 weeks.

Seizures are absolutely draining me of energy, muscles in my legs seem to be extra tight again so walking really sucks. So back to the bonfire to recover is what ive done, it is annoying as I was getting used to eating more but its gone back to one meal a day and forcing snacks when I can. Gym has taken a hit too looking forward to when I can manage that again.

I dont really like posting seizures as its negative but its reality, the stress of what I can do for work and will get me off universal credit is really getting to me.

Positives is doctors soon to look into more and tilt test to see if POTS is also on the cards. Will see how long is left for the specialist referral.

Do your best with the cards youve been dealt.

25/10/2025

7 years to get forwarded to any form of treatment. Im finding through retraining my brain with movement getting stronger is kinda helping. Im just doing it blind currently, need to follow up on when fnd specialist in bury St Edmunds is gonna be and when my neuro physio will start. I did a glutes class yesterday and now ive been trying to wiggle my big toe for the last hour. Determined to try and make it back to the gym for arms today though. "Just wiggle your big toe"

we need faster help.

We urge the Government to increase funding to ensure better Functional Neurological Disorder (FND) care, including clear FND care pathways in health trusts, multidisciplinary teams trained in FND, more follow-up appointments for patients, and mandatory training for GPs, neurologists, and A&E staff.

22/10/2025

I see alot of fnd posts and I know how debilitating it can be and that but we all know this. Alot of these people are just showing you the bad and it almost feels like theres no hope to get your life back.

Its taken 7 years of trying with working out to finally get to a point where I can do it somewhat consistently. Everytime previous I would have a huge flare up and not even be able to attempt a push up for a month or 2 without having multiple seizures.

Ive found that its almost like a spring I can do some actions and I can lift weights but as soon as I put them down my nervous system will react. I really hope I can figure out if I can get any cctv footage from the gym, everytime they test the fire alarm I eat s**t and end up on my back, feels like ive been shot and I everything goes white for a sec.

How does sound effect you? Thats my biggest downfall still, baby cried at the charity shop and I was not okay even with the noise cancelling headphones ended up on the floor out back for a minute. Im getting alot better at picking myself up and cracking back on though. Id love a job where I dont need to wear ear defenders but everything is noise. Got some things in the pipeline hopefully, still volunteering but gotta keep busy ecspecially with the SAD now kicking in.

Keep on swinging yall 💪

22/10/2025

Got myself some battleropes from the charity shop, I really like the feeling of them but it is a hard movement to get used to. Youve got a lot of movement and the nervous system is fighting you but you can make progress. Also if you feel like your gonna fall you can cling on for dear life 🤣. Im definitely not perfect and not over this by a long shot but the progress thats been made this year id love to try and share woth people. There is hope to live again, your gonna have to fight for it though. #

14/10/2025

I can now kick without falling over for the first time in 7 years, obviously I still have bad days where I wouldnt be attempting this but to focus on these little wins has been everything with development. Pushing to find some work soon thats all what this is for, so I can get back to it. Treat the people that have helped me along the way, its been a great motivator.

14/10/2025

Last 8 months ive made alot of progress with being able to push myself harder. Emdr therapy flicked a switch with my pain and helped turn it into strength, the thought of being in a wheel chair scares me, at least I know im doing what I can to hold myself better. Doesn't help the scam websites selling wheelchairs, sisters still waiting for money back.

14/10/2025

Again been super slack at posting on here, the dystonias been kicking in hard at the gym. But I am at the gym now and that was a big step from the back garden. I managed to get it under control and then do a little more, just learning to accept passing out at home more often afterwards.

07/08/2025

I will get back on this soon, been working really hard on myself and have made a bunch of progress. Been to events, volunteering for charity shop, Meeting people I dont know and enjoying what I can of life. I feel alot more hopeful towards setting up a support group in norwich for fnd/fibromyalgia. Id like to focus on strengths, what part of our bodies needs to be stronger. Have a unit to go to government with our experiences of how abyssmal health care for it all is. Making sure newly diagnosed aint going through 7 years of 0 professional help.

So if you are in Norwich and feeling alone and nothings gonna get better. It would be good to talk and see where we can get you back on track. Ive got no funding or anything so im trying to figure a solid space where meetings could be held.

Im also thinking ahead for the big sad that is winter would like to not sink into that this year. ive found since weening of sertraline and amitryptaline last year, this year's heat hasn't been an issue if anything its making me feel really good. Now its to think of the cold as thats still an issue with shivering so much you pull muscles and signals are going haywire you can barely take a breath. Mainly though dont wanna get caught in the sad and keep some hobbies going and contact with people.

I can only do this with people reaching out though.

"Dont you dare go hollow"

03/06/2025

Been pretty bad again, not been able to do much excercise, a walk is the best I can do last few days and thats alot of discomfort.

Wanted to see my face after a seizure the other day and this is it. Ive been trying so hard to be pushing myself and positive which ill continue. I just have to understand its ok to crash and take it easy for some time. So ill be playing neightreign while I feel like this.
Got multiple volunteer work applied for just need some replies now.

Still waiting on neuro physio which I feel will benefit me alot, finding my triggers are in my hips, sometimes lower back.

"Don't you dare go hollow"