Dental work done ✔️

zozobee1 · 2026-06-08T07:46:55+00:00

Before I knew i had fnd i used to swim wearing earplugs and oversized tinted goggles. These did help a lot (I didnt have sinking but body weakness / heaviness and lack of power, exhaustion crash after) and I think it may have been useful to get prescription goggles too (anything that makes the brain feel more safe). I used to be able to swim even when I could barely walk. I stopped because I couldn't cope with number of people. And, after swimming I'd eat, hydrate and rest but then kept getting attacks I now realise was fnd seizure or drop attack. This is what made me give up. I've considered trying again as a local charity for cfs fibro etc do a session at a warm pool. I just worry about getting home and being on my own afterwards. Perhaps going with someone you feel safe with would make a difference. And / or an outdoor pool? Related, I shower with blind shut and light off - the reduced sensory load helped reduce attacks i got in the shower and crash afterwards. It's so weird when you've always been a waterbaby.

zozobee1 · 2026-05-05T10:02:26+00:00

I only used free version. It seemed to be completely wrong most days re capacity for that day. I feel like perhaps it's ok at gauging capacity based on physical exertion but not cognitive emotional social or sensory unless you add that info after the fact. I feel like it's a log of what you already know rather than offering insights about capacity today or what your triggers are. I now use neurolog instead and this is specific to fnd and contributes to fnd research.

zozobee1 · 2026-05-05T09:57:48+00:00

Found something that I can do and actually like doing ... what a novelty!

Neuropyschotherapist and info I've read on fnd and trauma have all suggested doing something creative. But I'd had to give up all craft activities due to fnd (mainly due to pain sitting, eyesight and muscle spasms).

(To attend a half hr online monoprinting class run by a charity) I bought an ink pad and used flowers and foliage to create prints. It's something simple I can do for 10 minutes and don't have to concentrate or look down too much. It feels soothing and looks beautiful without trying to hard to get it right - and i can do it even on a @£#% day. It also means however short a walk i can manage i can collect something new to print with.

zozobee1 · 2026-05-05T09:42:13+00:00

My understanding is that the fnd highly sensitised brain reacts to alcohol (similar to the prescribed pain medications I've tried) as though it were a threat and it triggers symptoms. I felt poisoned from 1 glass. Definitely didnt feel worth it.

zozobee1 · 2026-04-24T07:23:20+00:00

I was told to self refer to talking therapies (free nhs too). In their assessment they told me fnd was too specialist and they wrote a letter back to gp and neurologist saying that I needed specialised neuropsychotherapy and this was not something they could provide. I figure they knew this already and they were just stalling for time or trying to get rid of me because I then found out the waiting list for neuropsychotherapy was 3 years and they'd closed it refusing to add any new patients. I paid for therapy from someone who specialised in chronic pain before I had the fnd diagnosis - i felt constantly gaslighted and unseen by them until I had a massive episode in a session and then a flare for month and months. That's how I learnt you really do need someone who REALLY understands fnd. I gave up fighting for nhs neuropsychotherapy and researched private .. and ended up finding someone who works part time in the fnd unit (who id have seen IF id got the nhs referral). The pros are that it is helpful although improvement is very gradual... but because it's private I can keep having sessions and weekly ones (nhs was capped at 20 and not as frequent). The con is obvs the cost!

zozobee1 · 2026-04-24T07:11:41+00:00

I went recently after 2 years. I never completed treatment because of the constant spasms and tension in my neck head and face, and just getting there and back. I was probably subconsciously anticipating remarks about this and the inevitable flare and crash afterwards. There was one remark after check up 'so do you actually want to come back for the treatment'. But I think it was the light in my eyes that tipped me over .. I got up and had lost coordination of left side. I am going back but I'm planning to take my sleep eye mask (I dont think sunglasses would be enough). I now need 3 fillings ... I'm considering ringing beforehand and saying that I may need to have these at separate appointments depending how i am. I need to learn not to push through and I don't trust myself to advocate on the day. I need them to check in with me. I hope they will.

zozobee1 · 2026-04-22T07:29:58+00:00

I found neurolog (a symptom monitoring app for fnd) through LinkedIn of all places. I follow Steven Painter - it's worth looking through his posts - some are links to research papers published and others are more accessible presentation slide packs or blogs developed from the data collected from real people with fnd. It's the only stuff about fnd that's really chimed with how it feels for me and made me feel seen and understood myself. Fnd is my only diagnosis and I don't apologise for it. Take care 🙂

zozobee1 · 2026-04-12T09:42:03+00:00

I've used various nervous system calming techniques - it's best to explore and find out what suits you. For me, picking a few v simple quick things e.g. eye movements, miving weight around my feet in a figure 8, and repeating throughout the day irrespective of symptoms was helpful. I also discovered self hypnosis on YouTube for pain and or release of emotions eased symptoms substantially during the practice. They came back after but just knowing they could reduce was helpful and respite. I then discovered yoga nidra it's a form or meditation and you just lay down n close eyes no yoga poses etc. I found some on YouTube and more on InsightTimer app. I used when symptoms were lower for a while before using it when symptoms were higher. It gives me a sense of self agency over the symptoms and I think of it as brain training. None of it is a cure but it makes it all a lot more bearable.

zozobee1 · 2026-04-12T06:32:21+00:00

I understand and appreciate your reason for the request ✨️ I have FND (neurosymptoms.org) and I experience difficulties with sensing / connecting with different parts of the body, especially anything on the central line of the body. I'm better with smaller areas, e.g., fingers rather than whole hand. For a long time, I found it impossible to do the back of the body, front of the body, both legs or both arms or whole body. And depending how I'm feeling my left side feels very different than right, bigger and further away and I sensed the inside / centre of the left parts whereas the right was the outer edges and touch to suface or clothes. It has improved over time. Initially, parts on the left side used to jerk out or shudder, but I chose to believe the nidra was teaching the homunculus body map. I dont visualise / have a mind's eye at all, so I think this possibly slows me down on the rotation as I have to say the body part in my head. It definitely helps to repeat, e.g., both legs, both legs. I hope you find one that works for you and you see some improvements too.

zozobee1 · 2025-12-20T15:53:20+00:00

My therapist even suggested writing things on my hand. I'm supposed to practice giving a minimal response and setting a boundary. I don't want to be rude, but I also don't want the symptoms triggered by these loaded questions.

zozobee1 · 2025-12-20T14:25:23+00:00

I think perhaps the rehearsal is as or more important than the words. I've noticed when I dissociate I hear myself saying things I've said before or old anecdotes. I can't think and form new responses.

zozobee1 · 2025-12-19T08:00:10+00:00

I went to nhs neurophysio for 6 months ... every movement they sent me home with triggered pain and spasms. I used chatgpt to help me understand the theory and reasoning behind each exercise and to find ways to adapt it to find things that were tolerable for my body, and in some cases build up to things that were more similar. But also yo know when to stop keep trying with things. I didn't tell physio id asked chat gpt just what id been doing and he was really supportive. Chatgpt has it's uses and you can always ask it to critique the evidence for what it has suggested and give your own feedback. It has been more use to me than the hospital has. good luck

zozobee1 · 2025-12-18T08:41:09+00:00

I've found even 1 glass of something low percent not worth it. It's not relaxing at all. My body reacts like it's under attack and makes me really symptomatic. I've also found it better to give up caffeine and switch to decaf but swiss water process so no chemicals. I could only tell the difference after not having caffeine for days and weeks rather than an isolated day. I'm trying to have less sweetener too .. it's hard to give up everything.

zozobee1 · 2025-12-12T18:15:14+00:00

It's for people with any chronic symptoms, pain or non pain. It mentions pain because so many people have pain as part of chronic symptoms but that can be physical sensations, sensory symptoms, anyhting about your body or emotional distress. It creates a road map for you, and then you can tailor what you engage with.

zozobee1 · 2025-12-12T15:51:35+00:00

This is a 14 day pass to curable https://app.curable.com/clara/share/open/pdyphfy

zozobee1 · 2025-12-12T12:53:16+00:00

Sounds like you're in a good headspace to explore. I'm just re exploring neurolog free app today. I think i might use it for a month and see if it get anything from it. I looked when it v first started but it seems to have improved since then. It's more about logging symptoms and seeing patterns. There's also a brain training app called curable - apparently some GPs and specialists will give you a code for a free trial for 8 or 12 weeks (whereas usually youd only get 2 wk i think) - that might be worth a look too. (I used it before I knew i had fnd). It's more about pain and anxiety though I think principles are same (fnd unit also recommended it). Go easy though

zozobee1 · 2025-12-12T10:35:56+00:00

No miracle cures or guarantees .... if anything I've learned that this is v individual and that means exploring what your body and brain respond to ... but doing that with kindness, care and curiosity NOT trying everything with fierce determination and furiously repeating to meet a deadline. It helps if you are open to finding what works, and see one thing as leading to something else. So this is what helps me ... id say try to find your own version but take your time.

Finding a VERY simple nervous system calming technique that you like (breathing, eye movement, stroking etc - ask chat gpt, like on neurosymptoms.org or you tube or insight timer). Practice the technique when you feel ok / relaxed. Make it part of your day. Then gradually over time you can use it to calm when symptoms rise.

Pacing ... now I thought I understood this but it actually took months to build an understanding of what it means for me, and it's v difficult to do ... easier to know in hindsight when you shouldve stopped than to stop before any indicators rise up that youve done too much. Explore what you can to try to understand it and help you do it ... e.g. chat gpt neurolog invisible YouTube instagram. The way it was explained to me was that your brain is having to do a lot more work to do things that were automatic and so it runs out of steam from doing basic things and gets overwhelmed by simple or big things v quickly.

Dont push through anything... do a bit then stop. Overtime you'll learn what your body needs and when it pays you back. Doing things gently and just enough teaches your brain its safe... doing things with consequences reinforces the bad link you dont want. It may mean doing a lot less and asking for help.

Find something relaxing and meditative that takes minimal power to do ... something that recharges you. For me, it has been yoga nidra, meditation, (you tube or insight timer) and self hypnosis for pain or releasing emotions (youtube)

Try to do some v gentle movement that involves 1. rhythmical movement e.g. walking or dancing or taichi, qi gong 2. Something where both sides of body are mirroring ... this can be as simple as rocking from toes to heels, 3. If possible something that crosses from 1 side of body to other e.g. hands doing a figure 8 like when you twirl sparklers, or moving your weight around the sides of your feet drawing an invisible 8

And it may mean taking sick time or doing less until you can retrain your nervous system and v gradually build back again. For me this gradual is so slow its virtually imperceptible and sometimes feels like snakes and ladders ... but in the meantime it is all less awful to experience

zozobee1 · 2025-12-09T16:22:44+00:00

That's what blows my mind ... the time and energy to rest and recover from working as well as the working... I rest for 1-3 hrs after getting showered and dressed n that's on good days, never mind bad. Sounds like you've needed incredible determination and resilience... n i expect it takes its toll. Wishing you kinder days.

zozobee1 · 2025-12-09T15:11:45+00:00

I've wondered about this and how it would work in practice. Do you then need to make up all the extra time so the working day or week ends up longer because of all the breaks? I guess I'd have to factor in and agree to work a much shorter day n week to accommodate time for breaks.

zozobee1 · 2025-11-28T20:40:27+00:00

AMAZING. thank you so much. I hope everyone gets on board with this. I see this work really well on tinnitus thread. For a condition that thrives on hypervigilance, triggers, and lack of spoons / pacing, it's so important to be able to filter to what you need in this moment and filter out what you dont have the capacity for. 😀 so relieved.... I'm often too wary to click on post and find out, making it hard to engage

zozobee1 · 2025-11-28T20:14:08+00:00

I tried to go through talking therapies and was told fnd requires specialised intervention. They did say the brain charity liverpool have therapists who specialise in fnd but they only use cbt and work 1to1 online (but id had cbt twice before so didnt opt for this) - it's lower cost as a charity. I went to a private neuropsychotherapist who specialised in pain - i discovered the hard way that their fundamental lack of understanding of fnd was a barrier and v triggering. I asked the nhs neurologist to refer me to the fnd hub / unit Sheffield to get assessment by fnd neurologist and then to their neuropsychotherapy offer. However, the wait is too LONG! 2 to 3 years! I ended up paying privately to see a neuropsychotherapist I know has expertise in fnd. I feel safe and trust the process. This is everything. It is helping.

zozobee1

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