Feeling so poorly

[Littlecook]

Today (Friday) I've felt so poorly just like a merry go round and so unstable , if only medication would work for my dizziness why is it everything I have is so rare and doctors never know what to do to help me .

[Crystallmatters]

I am sorry to hear that , I know what you mean I suffer fnd worse when I am in a lot of pain, its very worrying not knowing what next it is going to do. I been told to have self compassion ground recognise the situation , breath and hope . Well it king of helps . I hope it is a little help . You’re not along . Plenty’s of pacing the day , I am useless at it so suffer more . Your doing well

[Crystallmatters in reply to Crystallmatters]

so I have had multiple failed lower back surgery , sparked fnd , not many specialists in the south of england. Its very tying I can get halfway round Tesco store and suddenly my body can’t move , my limbs struggle to move I shake then I can’t get my words out .if I do what I have been taught stop , drop anchor ,think recognise the situation breathe , you can’t be pushed .

Then slowly it might improve to get me out of the store.

Quite a challenge, anyone else ge something familiar

[Lady4 in reply to Crystallmatters]

Are there any tale tell signs before any of your symptoms start in the store?

[Crystallmatters in reply to Lady4]

So the strange thing is that, I can without thinking about because I do a lot of the time I get quite conscious about an attack and what form it might take, I still struggle about being seen with the condition, so if I go into the store and Tesco is like a trigger, because I have had some really bad attacks .

So if I can with Juliet and other things be distracted go in be really happy thinking about Items I need , without any warning like someone has pressed a button on my back, my leg or legs might just give way, I can struggle to pull balance back but now hanging on the the shopping trolley, while busy trying to coordinate my legs my arm might start shaking and then I go to talk and I either cannot or I struggle to get any words out, It used to get a lot worse from here, How-ever I have been taught by Optimise Oxford to Stop, take check, Breathe and recognise the situation, a little more to this but it can really help. To be honest from here sometimes I quit the shopping, other times I try to carry on, the problem is I then will have motor problems. I cannot think straight, so I need a check out , not self check out.

Another trait not good is when the brain Fog kicks in, My brain hurts, its like someone is squeezing it and I cannot think straight or I know what I what to say but I cannot, this is really frustrating. If I am unlucky next I start shaking ,arm normally starts first, I struggle to maintain body temperature.

I have learnt that if I am in a lot of pain before I go into a store, I am more likely to get an attack, It is rare for me to get a warning.

Things can also be all fine in the home and then I might go to say something and I cannot get the words out.

I need to change the situation with massive distraction to get out of it.

I can sometimes not walk but run .

Hope helpful David

[Lady4 in reply to Crystallmatters]

Absolutely its because to run its a conscious action that is controlled by you, yet walking is an automatic action that we don't really think about.

So you mention you sometimes notice temperature change, if you suddenly feel hot can you grab a cooling towel quickly to cool yourself down. Would a grounding technique work in the supermarket, or the 5 4 3 2 1 technique. I am guessing when your legs start shaking that naturally your attention is drawn to them, which can sometimes make symptoms worse.

Juliet, is that your partner/friend. Having someone with you and discussing what apples to get etc is distracting your attention elsewhere and you are less likely to think negatively.

[Crystallmatters in reply to Lady4]

Yes your right, Thank you, Juliet is my wife and amazing support, to be honest Juliet does a lot of care for me, It is still tuff times, I can get bad FND to the point I cannot move, Pain plays a major part, so if I forget to take medication Juliet is on the ball to make sure I am and keep me with warm clothing or straight under a warm blanket,

Yes I ma learning new distraction ways as you are right the subconscious seems to play a major part in this. I have to go out with Juliet now but before I go Thank you and I don't know what is the 5 4 3 2 1 technique.

Thanks David

[Lady4 in reply to Crystallmatters]

Hi, I mentioned it on a post the other day, let me find it again (I always get it muddled up when I try and remember).

Here you go:

At a Glance

Feeling anxious or overwhelmed? This technique can help. All you have to do is identify:

5 things you can see

4 things you can feel

3 things you can hear

2 things you can smell

1 thing you can taste

This simple yet powerful exercise uses your senses to anchor you in the present moment, helping you find some calm amidst the chaos.

[Shimmyaway in reply to Crystallmatters]

It does seem that supermarkets are triggers for symptoms. I have found customer care most obliging and upon request they will take my trolley or basket through the checkout for me, so I can avoid all the check out noises ... but you sound as if you are in greater need of that help for more physical reasons..so sorry to hear of your struggles and all the unpredictability attached to this ............ condition.

[Lady4 in reply to Shimmyaway]

Also the flourescent lights seem to trigger some, so tinted glasses, noise cancelling headphones (cancels out background noises) but you will still be able to hear your wife 😉

[Crystallmatters in reply to Lady4]

Thank you, yes I light does have an effect, In fact the whole sensory system comes into play. I just got back from town and was thinking about 5 4 3 2 1 yes we were taught this by using the steps Stop - Take a Breath - what an I thinking -What am I reacting to- what am I feeling in my body. The other is Stop -drop Anchor - Breathe -Recognise the situation and engage my sensory, to look, feel , Listen, taste , The body is Amazing we do so much without realising. I am so keen to learn from everyone and share as much as I can that I hopes either helps others or makes us realise we are not alone or going mad.

I have been told and can see that FND is getting some recognition now, also its not one thing but hundreds of traits to FND.

I have noticed or feel that sometimes when I adapt and feel I master and aspect of FND , It moves almost if it throughs another angle at me.

Thanks for your help /

[Lady4 in reply to Crystallmatters]

Yes the drop, stop' anchor would be the same I guess as sit in safe space, implement a strategy (at heat wrap etc) or just let it wave over you. Get up when you are able to and continue on your day (prob haven't worded it brillantly but thats what I have learn't re seizures etc).

[Crystallmatters in reply to Shimmyaway]

Thank you very Kind , yes I had Four failed lower back surgeries , which seams to be the route of the problems, I think your right there are so many triggers, sound, environment, being busy don't help. We will keep learning.

Thanks Take Care David

[Lady4 in reply to Crystallmatters]

I think balancing the sensory inputs may help decrease the ones that trigger you and increase the ones that make you happy/calm.

[tabey]

I’m really sorry to hear your having a rough time of it things will improve in time keep fighting each day you complete is a win we do not give our self’s enough credit for getting though the day with fND it’s really hard but yet somehow we do it

Might sound strange have you tried a simple travel sick tablet to help with dizzy spells get a none drowsy one I do find this can knock the edge of a little worth giving it a try even if it’s only a little win it’s a win

Take care always here for a chat

Tabe

[Lady4 in reply to tabey]

Interesting Tabe, I wondered if the wrist bands would have the same effect.

I found this (on a product page):

Motion sickness from travel and VR gaming, acupressure bracelets have also been shown to help with clinical conditions like vertigo, morning sickness, and fatigue from chemotherapy.

[Crystallmatters]

I really feel for you, it is so tuff into day and when you have experienced life under a doctor the health system back in the 70s and 80s and part of the 90s when there was time for a doctor to have time to properly diagnose you at least help a little, I think it makes it harder to except the struggling system today.

I am getting a little help hopping for more, I have found Jon Stone on line and listen to his Pod casts.

I became very ill with FND and not understanding any of it so, I called it a day, I was saved and then, Under the Mental Health team , I have had amazing support, which is still going on, they have listened and with a little Faith and Hope , I am hoping I can learn more.

Apparently FND can give you restless led syndrome and it is harder to sleep , so I was given a few tablets to help me sleep, which are still working.

I use music for Chronic pain different types and this really helps. I did not believe for a long time that meditation works , Now I can do it, It has taken a lot of practice and it again helps.

Optimise Oxford , I am still learning that FND takes many different traits, In the south Of England there does not seem to be the same knowledge as in the North.

I can see it is at last being taken seriously and yes it is massively complex.

I take Gabapentin to help calm the electric socks and nerves, not easy as it gives me bloating and gas but it the devil and the deep bule sea, I have to watch what I drink and eat to not make it so bad,

I have to try not to get anxious this make it worse, not easy when all this crap can hit you and disable you.

I have ended up in hospital multiple times when and FND attack got so bad, I don't even remember it. Back in 2017, I was stuck during Covid, I might have the dates wrong, in Royal Berkshire Hospital, I could not walk, I don't know why, nor did they know, I was told it was all in my head and there was nothing wrong with me. This was bad really bad I could not walk, I could not see anyone because of lock down, on day ten, I dragged myself out on a frame, I could not take anymore.

Eventually on another trip by ambulance to Frimley Park Hospital with another attack, a stand in lady officer said to my daughter, I think your father has FND and asked to do tests on me, she did and said your father has FND. The start of a journey of the unknown , no one seems to know about FND.

At last yes there are a lot of good people out there who have been studying FND for over 25 years and FND is at last becoming more know about. Yes it is real and there is nothing wrong with us, we are not mental we have a condition that might get better or not. We can improve situations but I am still learning. I am happy to share.

I hope this helps. I have learnt to have some compassion for my self and others when they first told me this I thought they were mad, but eventually , I got it and it helps.

Best wishes David

[Lady4 in reply to Crystallmatters]

It sounds like a long journey and I am glad you have found the right help. I am a carer (parent) and I am still learning, searching for answers. But together, strength in numbers we will make those in power create a recovery referral path.

FND is real and effects people in so many ways but taking baby steps and celebrating our good days is a positive step.

[Shimmyaway in reply to Lady4]

I find it shocking that the public are not aware ( as were most of us) that certain conditions such as ours are not funded in certain areas .. and access to this information is not exactly easy., let alone the criteria on which funding is based, or whether the criteria are the same in all areas even. Ours cannot be the only condition singled out for postcode exclusion but without the knowledge we cannot stand together with strength in numbers.

[Lady4 in reply to Shimmyaway]

I heard it first hand that my son wasn't eligible for "Talking Therapy" from a telephone call with the Neuro Psych (who because of an appt being b/f which we sadly missed in person, as my son was ill with cold like symptoms at the time) unless he had another condition (because no funding path), suggested he could have ASD and referred to Camhs. We went to a local place for Camhs assessment and he didn't want to go again.

The referral from Neurology to Talking Therapy got lost in their system and it wasn't till I was chasing the referral did it dawn on me that we never received a letter following hour long appointment, another 6 months lost.

Never got to see OT as they decided to visit eventually after being refused several times by phoning at short notice (prob a cancellation, as no letter) when we were away and by the times I spoke to them my son wasn't experiencing any muscular ptoblems. On hindsight wish I had the assessment because I later wanted a sensory assessment but didn't want to take away valuable time from others.

I did chase this up and did eventually get to speak to the Head of the Dept, who advised who to contact re ASD assessment, ECHP (last 25 yrs). Referral for ASD did go the Drs but as needed school to fill a section (we are now on their long list for classroom asseszments but that can only be done when he is in).

[tabey]

everything is worth a shot in the dark and yeah they do the same as a pill so why not give it a go

[Lady4 in reply to tabey]

My son is experiencing upside vision and when it flips back he is dizzy, so will definitely ask him to try later. Appreciate the suggestion, need to get him back into school.

[Crystallmatters in reply to Lady4]

That’s terrible I did not know that could happen , it just shows you how complex this condition is , I am so sorry it must be frightening for him .

[Lady4 in reply to Crystallmatters]

He just rolls with it, at first thought the images cool but thats teenagers for you.

[Lady4 in reply to tabey]

Well he put the bands on but that was before the dizziness. I tried to debate that maybe better when symptoms come on after vision flips back to normal but we usually come to stale mate.