I joined about a month ago after neurologist diagnosed me with FND. Thought I'd best say hi, instead of lurking in the shadows in a dressing gown surrounded by ecig smoke.
Never heard of this before the neurologist told me and not sure how to take it either. 4 years i was told politely and carefully it was in my head.
No traumatic causes to it. 4 years ago working as a chef, slowly developed a tremor, within a month i couldn't use a knife or a pen then within a week lost my ability to talk. Then anxiety set in and made it worse.
4years down the line and stairs are the enemy 🤷♂️😂. Still can't write and walking like I've pooped my pants. Should maybe consider a kilt to prove that's not the case quickly haha. The rigidity in the legs, more right side is dumb and that sudden pain is no love lost even though how much I've tried to enjoy it (it was a change of mindset thing).
Pain is the biggest pain so far 🤦♂️. They threw gabapentin, cocodomol, naproxen and propranolol for pain, stiffness and tremor. Like most here I'm not a fan of meds but I'm my own experiment atm.
I'll be honest, I'm not sure on the diagnosis but after 4 years I'm grateful to have a ball rolling. A step forward is good, as long as no stairs are involved.
That's my introduction 👍🏼. Scottish guy, 33, 4 super kids and newly diagnosed with FND.
Hope you all are doing well. I've read some folk here have it real bad, so hoping today hasn't been too awful for ye 👍🏼
Take it easy, Lee.
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How has it been over the last 4 years? Does it come and go or just a slow decline? It was fluctuations to begin with here, new symptoms arriving and staying but slowly in general getting worse, boooo!
Haha, Netflix, the haven for us all. Glad to see they picked up Lucifer but they gotta stop dropping the good ones too. Gotta say I'm an anime guy too, so never run out of good shows to watch
Indeed..... surprising what keeps us entertained! Love Lucifer too. I’m fortunate I’ve never had seizures, but awful mobility issues. Started with left foot drop then started to limp...
I was 46 very sporty working crazy hours in London.... going thru a divorce but otherwise enjoying my new chapter in life.
At its worst, I had 5 days neuro physio I was fortunate to have this, it was a year after diagnosed. Gave me helpful tricks to climb steps, manage slopes and rest ‘before’ think need to and ‘pace’...daily activities.
I can walk now without my stick most days, sometimes only 2k steps, I rest often ( know where all the benches are!) live near the sea and lots of cafes too ... then walk bit more. Having my dog since Oct has helped my walking alot think as he is a great distraction. Expect your kids are a good distraction tho
Still dream of the days tho when I could just go out and walk as far as wanted to 🙄 without having to plan everything ...I have a blue badge now , that’s helped me a lot, I can now get back to car when become immobile after trying a little grocery shop 👍
Managed a holiday to Spain last year too with wheelchair assistance for first time.
Going again this year takes lot detailed planning tho ...
I also have osteoarthritis in my lower spine too, have regular injections to help....but yes
other new symptoms come and go.... numbness and tingling in my left arm now as well as my left leg. Tingling in my face at times ...
Daily muscle cramps, burning feeling heavy muscles, spasms etc etc Forget my words too....
Still adapting life in many ways, slowly accepting this ‘new normal’ .... hope helpful
It's true to say that hearing other people going through it makes it feel alittle better. That must be our sadistic side haha.
I've read and saw a few videos of the seizure side of it. I feel for them but a sense of relief comes with it on a personal level. I also have mobility issues, very frustrating. Wee half way up the stairs rest is becoming the norm. How did you work around job options?
Ah i see, those who throw that stress word around can eat it eh. You seemed to be relatively happy when it came on.
Seems like your learned some good pointers in coping with it. I've adapted some of them too, rest and knowing my limits. I used to weight train before too so it's difficult to accept limits haha.
This FND isn't pleasant at all Lucy. How long did it take for them to diagnose you?
Morning Lee... another weekend flies by eh .... how was yours?
A little gardening for me today lots of pots on my patio! It’s enough.
To answer your question....
I was diagnosed after 6 months or so , saw a few neurologists, lots of tests, brain MRI etc then one recognised my gait using the ‘hoover test’ was maybe a functional issue and referred me to Prof Mark Edwards in London, who confirmed FND... like most of us I’d never heard of it till then .... then a year wait for the amazing 5 days neuro physio with Glenn Nelson( May have seen his recent webinars) I see them annually now for a review.
I somehow dragged myself limping along exhausted by train the hour to the London office from Brighton thinking it’ll get better soon !
After 2 years, fatigue was even worse and started working from my lounge full time in same role. This made such a difference to me. I manage a half day at most in the office now and again....
This is the longest I’ve ever taken off sick since all started, nearly 2 months, having an unexpected pain flare after my 3rd facet joint injections in my spine. Exasperated my walking issues too, it’s first time I’ve actually ‘stopped’ to give myself time to let it all properly sink in.... after fighting through all the pain etc to keep working. I’ve worked hard on my mobility in many ways, but neglected my mind and the impact all this has I think.
Waiting for for sit/ stand desk which shall help when I get back to work, soon I hope.
Do you have any ideas about a new line of work as being a chef was tricky with all this you mentioned ?
Any new symptoms this week? ....for me its a twitching right eye, same side as the face numbness and tingling that only started last Oct on and off
I had a clear brain MRI scan last Oct, but still a worry. Oddly all my mobility issues are left side,, left leg and heavy dead feeling left arm.
I read once 80% of these symptoms are on the left!
Anyway, we shall battle through eh, laughing when we can and resting when needed 👍
Morning Lucy 😁👍🏼. Back to the normal week days (love the morning routine with the kids 😁) and admiring my gardening work over the weekend.
I think I've heard of the names you've mentioned on YouTube 🤔. I bet you had a sense of relief when you got that diagnosis. For sure it's a wtf moment but i always said over the 4 years, something is better than nothing. Sometimes it just takes the right professional 😉.
It looks like you've found the right balance for you. Those spine injections sound horrendous. How long do they last for? It's true all this symptoms we have with FND we tend to forget our poor minds and effects dealing with FND can have on them. I feel once i got around to the to the accepting part it helped with dealing with the symptoms appropriately.
What line of work are you?...if you don't mind me asking. I have no idea where to go work wise atm Lucy. I've always had physical jobs, chef was my job. I also worked on boats and was a sports coach for schools. Now i can barely make it up stairs without having a rest half way 😂. I've not been to write for 4years which is very embarrassing, so it would probably need to be 🤔...a circus clown that gets shot out the cannon 😃😂.
New symptoms, tingling in left foot and same foot dragged too much like hes giving up the will to walk. You're right it does seem more veered towards to the left side. It's usually my left leg, hip and foot and right shoulder and sharp sudden pains down limbs. It got me good last night walking up the stairs, had a longer rest than usual.
It's honestly a weird disorder! I'm lucky to have the kids to take the piss out me every so often hahaha.
Hi, Lee, welcome on board... I was diagnosed 2 months ago first symptoms started 6 month ago which includes numbness, tingling, pain in my back and neck. Fatigue is still pretty much presented every day. Painkillers doesn't work. Was presented antidepressants which helped big time. Hope you will find what work for you too
I had Fluoxetine for a few years there but dropped them a couple of months ago, properly ofcourse. They DO help, i agree with you Agnes. When this all first hits it does feel like your losing the plot.
Painkillers don't work tbf, you'll probably be better with gabapentin for nerve pain and now find the propranolol as and when including a daily 30mg min helps with the anxiety issues that come with this.
I am on Fluoxetine myself now for last 3 months, some days I feel like I am back to my old self , the others the pain is back in full swing. Still manage to work after being out sick for 2 months this year.
They only thing i found with Fluoxetine (and i only noticed when i came off haha) was how docile it made me. It's still did the job tho, if you're good with prozac they should work well for you. I only came off cause i wanted to see what would happen 🤷♂️. Have they offered you physio yet?
I compensated with propranolol while dropping, then dropped down on propranolol. I think it made it easier. My mood swayed abit, bit snappy and trouble sleeping without the 'fear' wake ups. But nothing like what you may have read, i read that stuff too before hand and it nearly put me off. But we're all different. A good management plan will help out when you and or doctor decide it's time 😁👍🏼
It dulled my anxiety down to a manageable level i feel. I freaked out when this showed it's head, honestly thought i was loosing my mind. It didn't stop the symptoms though
I still take propranolol for anxiety/tremors but I'm hoping the fluoxetine days are over. The less meds I'm on the better my attitude towards them will be. But you know life can throw some major curve balls but right now I'm saying no 😉.
Hi Lee and welcome to possibly the most shite club you'll ever join in your life. Good to 'meet' you.
I can relate to the rigid legs, I have the same problem. Luckily for me, I finally got to see a specialist physio recently who explained that the calf muscles are overactive at the back and underactive at the front, hence the ankle stiffness and toes and hips turning slightly in. Luckily I can still walk and push myself daily but it hurts after a while.
It took almost two years of the gait disorder and me stressing about it to accept the FND. I realised my leg paralysis only in certain positions was incrongruent with other disease but didnt want to believe I had a neuro problem with walking that couldnt be fixed. A hip op would have been preferable!
After spine and brain MRI, I insisted my hips were xrayed and Mri'd, all trying to figure out what the hell was going on! It took sitting down with a specialist to explain it to me in detail which finally helped me to accept FND as an actual 'thing'.
Sometimes I still question it to be honest.
Not everyone gets this help and I am grateful.
He also explained that my core is a bit switched off too which explains the neck and shoulder pain and difficulties sitting up. I had been on steroids for this, thinking it was rheumatic! I thought the problem was my spine for years til the physio said " Your spine's fine, it's your muscles!"
I still wonder daily why my nervous system is in chaos. In my job, I support some of the most vulnerable people in society - who have been through a lot more stress than me - and their brains didnt suddently start miscommunicating with their bodies!
Aye you're right, it's a hard thing to accept and very frustrating. The legs stiffness and pain is stupid. I've always been fit (never missed leg day 😏😂) and I'm now i find myself lying on the floor or resting on the stairs, bouncing off walls and tell the poor wee maw to slow down cause she's walking faster than me haha.
It's good to hear more people in the same predicament 😉.
Seems you found a couple of good professionals to help you out and explain it all.
Well, I have had two days physio so far and have three more days to come in June, I have some really basic and gentle core strengthening stuff to do at home in between. (This is literally just wriggling in a chair as I think normal muscle strengthening physio doesnt work for FND). After that, I guess I will be left alone and somehow have to find a way of accepting this new life with its limitations. (unless I am miraculously cured of course, in which case I will tell you all!).
I work part time, this has been a real struggle at times but to be honest the thought of having to negotiate the benefits system in this country fills me with such rage and terror it would probs finish me off!
I find it hard to both sit or stand for long so I am either walking too much or laying down lol!
I've gone from travelling round the middle east with my job to feeling about 85 years old and watching Netflix. And yes, I also yelled at my 72 yr old mum to SLOW DOWN the other day. LMAO.
I have found it hard to articulate myself, have brain fog and terrible fatigue. I used to write for a living, now this is the extent of my paragraphs! I have also found the stigma, and lack of knowledge of FND plus a serious lack of family understanding and support very depressing and tricky to deal with!
My physio told me the majority of people who get FND were do'ers, you know active types!
There was a strength training routine i did a few years back called ripptoes strength training. It deals with compound movements, core and form/posture while training. It could be a place to start...no cardio involved 😏😂. Maybe it's something you can have a look at and now that reminded me, i think I'll give it a go too.
That's great about work also. What is it you do? Yeah the benefits system is a nightmare, that's my reality atm. No idea what to do. Just using this time to be an over bearing father.
Maybe we are 85 but our consciousness hasn't noticed the time pass yet 🤔 haha! Our poor mums, we're like dead weights 🤦♂️😂.
Losing words here also and find i stutter a few times throughout the day. What did you write before? Can you still physically write?
To be honest I've had lovely support from the family, to the point I'm telling them to beat it. They worry more than i do. What's their views on the situation? Take them along to one of those FND awareness days. It might help.
That's strange, i wonder why that is. There is probably some science behind that 🤔
I am a support worker and I am luckily an outreach worker, which means I can get up move round etc. I could no way do a desk job or something on my feet the whole time. I used to write about refugees, tell their stories. Maybe one day, I'll get back to it..who knows..
To be honest, some of my family have always been crap but I think I am feeling it more due to becoming unwell. My daughter is amazing but I try not to worry her too much and play a lot of stuff down.
Your kids are lucky to have their 'overbearing' dad around!
Ripptoes Starting Strength its called. Wee google hit should bring up the info 😁👍🏼. Although i warn, squats will be the hardest and you'll probably have to do less of them.
Ah that's a handy profession and a noble one on both of them. Keep it up. I suppose you'll feel alittle better when you are around people in tough spots too.
Good to hear the young one is helping out and i agree it's hard to keep the balance with them. My kids watch me struggle and always ask if I'm okay. I tend to shush them, i don't like them seeing me like this. They've always saw me as a strong guy, my pride gets the better of me sometimes, i know they care and only want to help, it warms the heart too. I'm a lucky dad.
You made me laugh at that comment about telling your mom to slow down. I’m 41 and I’m walking slow with a cane and I see an 80 year old walking along much faster and no cane or weakness whatsoever. And I wonder how did I get here. Why has this happened to me? How is it stress when there are people who’ve been tortured abused or have been in war and they are still functioning? What exactly happened in our brains?
I think stress and anxiety doesn't help and certainly FND causes stress and anxiety but i highly doubt that's the cause of FND.
I was happy, loved my chef job, excellent location, great people and probably best position I'd been in for a while but that's when everything went tits up for me.
I'm sure, as more professionals dig into this they will begin to understand it more. MS and ME were in the same boat before and even today they're not full sure why these things happen.
Why us? Is an excellent question, i feel it often. I look at it this way, given the odds some shitty thing had to happen at some point 😂.
It's always the cards you're delt we have to accept, either play or fold...but someone might have shitter cards and makes me feel better, selfish, but better. It could get worse but there is always a worse situation out there.
If everyone just slowed down a little I'd also be more happier, I'm sure you feel the same 😉😂.
Agreed Ajastar. Rest is important for those days, although in a busy world that frowns upon resting it's hard to justify it. But fuck the rest of the world, you gotta look after you and find your limits.
I've been out of work for 4 years now, frustrating, on the plus side I've been able to be a parent. Long chef hours never allowed that before. So new career and no idea where to start 🤦♂️.
Be okay with your down days, that silver lining will always be there.
FND can really hit you into depression and anxiety modes but know you're not alone, many here and not on the site suffer the same. The good thing is you have people here to talk to and unburden some of that heavy weight.
I like you, your posts are real and down to earth 😀 I’m doing good this morning (meaning I can handle my symptoms at the moment). When my family asks how I’m doing and I say I’m ok they think oh so you are better...no I’m not I just can’t complain every second. For the first few months I did because it was all very scary and the doctors didn’t help me cause my tests came back normal. Just the other day my husband said he was feeling suffocated by me because I wanted him with me all the time whenever an attack would hit me. So now I’m trying to deal with it more on my own. I have to ride out the symptoms and pray for the courage and will to do it. Coming here and talking to you guys helps because you are the only ones who truly get it. We are the FND warriors, Unite! 😆 By the way I love Disney Gargoyles, defenders of the night and they are from a castle from Scotland 😃🤩🌒🦇😊
Haha, thanks Ajastar, i suppose i am sound at times 🤪
Seems like the family might need a little education to help with your situation. Bring them together and tell them how it makes you feel, FND and the attitude they have towards it.
You're right, it is scary at the start, i freaked out big time but it does get easier and that meant, for me, to change my own attitude on life. I told my partner to leave me at the start because i didn't want to ruin anyone elses life but she told me i was a dumbass hahaha.
All we got is ourselves in a sense. Maybe it's a good thing you're learning to deal with it on you're own but, you're not alone also. You got everyone here to help support you from a far. Sometimes all you need is 😁👍🏼 it's gonna fine, even from a stranger 😉. I think your husband will come around in time. It's hard on us and the people around us too, in different aspects but certainly a little education will help.
You mean Edinburgh castle maybe 🤔. Who put them there 😂. You must have liked the Hunchback of Notredam (not sure i spelt that right, I'm a savage peasant 😂😂)
Hi and welcome - although I'm sure you'd rather not have FND. Me - Northern Irish but living (and was working in Scotland until FND struck). Had it for 5 years now - I take several pro-longed whole body seizures per day, which last between 1 - 3 hours each. Totally paraplegic and mute during them but boy can I feel the pain. Host of other symptoms too. For me unfortunately it has been a case of new symptoms appearing and the condition worsening. I usually have a naughty gallows sense of humour about it but I have my days when I feel as sorry as hell for myself. But I've got a really supportive husband and 2 kids. Having to stop work was hard, especially when your long term "friends" run out of your life. But hey I've got over that now and the new friends I've made (had to sell our house and move as I kept falling down the stairs - thought I might have a new career as a stunt woman ) are cool with my condition.
Yep thank hell for Netflix. I'm also a Peaky Blinder nut case so can't wait for Season 5 - I've got Aunt Poll's new hat already
Hi Louyse, nice to meet a good wee irish lass haha👍🏼
Did the seizures come on later or has it always been a part of your FND? Can't be nice on daily basis. Nothing you found helps with them?
It's the same (except seizures) for me. Slowly getting worse over the years, told my kids if they have to wheelchair me about their allowed to push me off a cliff 😂😂. Humour is good with this tbf. Nice to hear the family are supportive,n makes a difference.
How has the move been, feeling more relaxed in the no stairs situation? I have a deep resent for stairs now, been getting worse over the last couple of months.
Peaky binders eh, I'll need to give it a watch, there is many people I've heard singing it's praises.
Cheers. My husband once let go off me when I was in my wheelchair- felt like that scene from Last of the Summer Wine where the guy is going downhill in a bath tub 🤣. Bugger that ages me 🤣. I had drop attacks for many years and then 1 day just fell over and spent 5 days in hospital completely paraplegic and initially mute and that's when I got the lovely diagnosis of FND. The drop attacks started in my mid 20s and were initially infrequent but then escalated. It was when I badly broke my foot during a football game that I found out I had drop attacks. Man I was just about to go past the last defender and let one fly. Poor guy kept apologising for the best part of a year even though I said he wasn't to blame. Would have made one heck of a goal (in my dreams😁). My Care Team assessed my bungalow and concluded it's a death trap because basically I have furniture. They suggested I should have all the edges cut off everything. Hum...no thanks. I just smash my head all the time. Reckon when I'm dead they'll put my skull on display in a museum 🤣. Cheers Lou
That was a good show Louyse! Ah you went mute too! Happened to me 4 years ago, 3 days in hospital and sent away still mute with no diagnosis. Spent months like that and before I got to speech therapist but i had already sorted myself out 🤦♂️. Ridiculous aftercare tbh. Although being 30 at the time i suppose they just thought i was loony.
Looks like your football days are over 🤪. Hows your walking these days? I suppose ruining your funiture isn't at the top of your list.
Be careful...is what i would say but you Irish are just as stubborn as us Scots haha
Have you had the Mayo Clinic blood test to see if you have autoimmune encephalitis? Don’t accept a FND diagnosis unless you have run out of options! The Mayo testcan be run by any doctor and then the lab sends it to Mayo Labs in Rochester MN. Same symptoms as FND and if not that, go to a doctor that won’t just label you and send you h9me with pills!
I think Mayo Clinic is an American thing, but I'll ask the doc about this. Tbf with 4 years down line and all the blood test they did i reckon they may have noticed that by now.
Looks like you are a bit worse than me - my main problems is loosing sensations, exhaustion and brain fog, though the pain might be kicking in too. To add to this problem - I had Fibromyalgia for a few decades before the FND raised it's head.
I am only a few months out from the new diagnosis and fighting to end the grief cycle, I worked out I was going through this when I realised I had dropped deep into my addiction - reading. For about 6 weeks I did nothing but read. I then pulled myself up and started thinking.
I am trying to adapt my fibro managing system to this new chaos and pure lack of energy.
In the last year I have barely managed to cope with my brother's wedding (75% of the problem was the location abroad) but the thing I managed to DO, was conventions.
Not sure if you've found them but the guys who run Satallite conventions in Glasgow are great friends. (Yes they do cope with the disabled - scifi/fan fandom appears to concentrate us.). This Easter I managed to run the volunteers, I plan to help in WorldCon (Dublin) in Ops and already signed up for something next Easter.
As you are a dad I am sure you will be trying to find things you can do with the kids - as a chef I suggest you teach them to cook well - heaven knows no one else in will bother.
Make what you can do fun rather than turning them into full time carers - remember the wheelchair (if it comes to that) will make you the family donkey and pushing the chair would be great training if any of the kids turn out to love rugby! Look for your local scooter hire company - on iffy days they are god-sends and keeps you going while letting you rest your body letting you cope with more.
While I am getting brain fog, my big escape is scifi and I love organising things. I am trying to find things to do that are both positive for me and achieve something.
Oh and the encephalitis thing - I haven't heard of that being available on the NHS. IF you find a GP willing to give it a try it might have to be done privately - and that could be very expensive. But you'd have to check. I'm currently concentrating on some neck damage that turned up. It doesn't explain all my symptoms but any improvement is still an improvement.
With fibro I found the best rule for me is to do 80% of what I think I can do. This means at no point do I run myself to the edge and after a rest I can do the 'get up the dishwasher is done' type everyday jobs.
It did mean I had to learn from mistakes exactly how much i could cope with - actually listening to your body for energy levels is an important skill when you've got anything that causes exhaustion. The big thing to remember is that IF you have a big thing coming up to rest hard in advance. This doesn't actually give you any more energy but it does mean that your fatigue is at it's minimum and when you take yourself past your limit it takes longer to get that far. You will be paying for the big thing for days but you are able to join in for as long as possible.
Preplanning everything also helps - flying out for a holiday? travel to the airport the day before (less stress over train delays or road closures) stay overnight at an airport hotel, same on the way back. Recovering from the journey does make the next bit less fatiguing.
Food - you know as a chef how big a difference the quality of ingredients makes to the final dish. Now you are ill, you must remember to feed yourself well. If your lack of job causes financial stress - think about eating as seasonal as possible. I have spent most of my time since easter working towards getting edible plants in the garden. Not got the veg in yet but working an hour at a time I managed to get the raspberry plants in - hell for me now but from next year I might be able to save the time I spend at fruit farms on something else. (And I'm admitting that glysphosphate is needed on the paths.)
Paying attention to my body is what allowed me to question new symptoms - when my fingers and feet started going numb I pushed my GP for answers. Took a few years but possibly a combination of FND and cervical stenosis (diagnosed within a few days of each other) does cover what I'm now going through.
Thanks M3rry, that was some great tips! Since the limps have been the most issue for a while now I've been using the rest before a big day. A nap during the helps with the rest of the day too.
I've been trying to persuade myself back to weight lifting. I think the lack of strength and pain put me off. I've dropped more than 1/2 in strength and gripping hurts me...can't squeeze the kids hands anymore without me suffering 😂😂.
Light gardening and cleaning the house is my main activities atm.
It sounds like you got a good grasp of your situation now. You got a good support system around you too?
My support system is not so good, never had a chance for kids and ended up the primary carer for my husband. But we don't let that stop us. We just adapt our expectations to our capabilities. At least all of our health problems came on slowly, adaption was a slow and steady process. I actually feel sorry for my healthy brothers being brought down by gall stones. The sudden change for them must have been a horrible shock (though once the gall bladder is removed it's a fast recovery).
If you start up on the UK convention scene there is a chance I will end up borrowing your kids - we allow them to volunteer alone from eleven
The gall stones hit one brother a couple of years ago, now affecting the other - currently waiting for surgical assessment. They are getting an education on how we live daily with pain. It's when they realise that no matter how bad they feel we're worse and working through it that a shade of our daily life shows through.
Oh that sounds good, i got a 13 year old long hair hippie here haha. Good boy he is. Tbh I've not read anything about conventions yet, i assume it FND awareness conventions. I'll have to search it up.
Gallstones can't be good for someone not used to dealing with pain. At least you can hit him with some good advice 😉
Sorry I was referring to Scifi conventions. We're an odd group and very accepting of any differences (at least here in the UK). (This Easter all the hotel bathrooms had 'gender neutral' signs up - most of us were too well trained but a few men used the ladies as they expected them to be cleaner). We work hard for access be it sensory or people in full support wheelchairs and every variant you can imagine. I used to consider them palliative care - I could depend on others watching my husband, now it's a major target for me to plan towards. If you enjoy scifi (and I count anime in that genre) cons might be for you. But we will encourage the same love in any child that turns up as well.
Okay, when it all began i was tarred with that anxiety brush like many others. But it got worse, that's when i couldn't talk and i got an MRI (brain only as far as I'm aware). All they found was 3 white spots on brain (probably was my brain 😂😂). Then they were going to do lumber puncture but by then i had my voice back so he changed his mind. Speech therapist, psychologist and psychiatrist all asked why i was sent to their offices 🤦♂️.
I just happened to be lucky last month to get a Dr Marshall at Crosshouse who quickly told me after a pshyical examination she knew what it was. 4 years of thinking i was going mad and after 5 minutes she diagnosed me.
Lol hiding in shadows, red u make me laugh out loud... Im 31 almost 32 also have 4 wee 1s as well... Was diagnosed with fnd january last yr so i too have been hiding in the shadows bit tour post made me want 2 come out of hiding so here we go...so whole yr with this illness and not getting better still awaiting treatment losing faith in the NHS completely lol not that it was ever that gr8 b4hand... unlike you guys mines was a quick diagnosis had been having slight tremors for few weeks but put it dwn to tiredness or hunger etc then 1 night went to bed and BAM!! woke up couldnt move my legs couldnt even feel them 2 b honest... phoned doc and got emergency appointment doc also thought symptoms were strange so was sent to A&E for a ct scan... The hospital had thought i'd had a stroke of some sort or worse so had mri of brain and spine along with ct scans and everything came back clear... perfect health except i dont have the strength to lift my feet from the floor.. so stairs r also my kryptonite at the min x
Hi sid87 😁👍🏼. Good to hear you came out of those shadows 😂
I hear you on giving on the health service! I felt the same way after 4years, if it wasn't for family I probably would've left it and just tumbled along without a clue. The communication between services is shocking tbh and you really need to get the right doc/neurologist from the start.
Has the walking improved at all since that BAM?
I replied to someone recently about the "spoons theory" that helped me understand our limitations. Now I'm gonna be lazy and go find it and do a wee copynpaste situation 😂. Will reply with it after this.
How you feeling today? It's tough in our 30s, we're supposed to be at the prime of our lives, that sometimes get me but i suppose we gotta deal with cards we got 🤷♂️. Spoons theory next...😉
2 girls sitting in a restaurant. 1 asks, "what is it like to have FND?"
So the 2nd girl walks over to the spoons, takes them all and walks back to the table. She halves them between her and her friend and continues..."on an average day..."
"Say I go for a shower, you put one spoon aside, i put 3 aside. Then i go for a walk, you put 1 aside, i put 4 aside. I do gardening, you put 2 aside, i out 6 and so on. If by lunch I've used all my spoons then i shouldn't do anymore, any more than that i will pay the price. Worsening symptoms, maybe 1 or 2 days in bed or the couch".
I thought this was quiet helpful in undertanding to manage my "spoons".
Knowing our limits (or amount of spoons) from the start and only working with what we got, which isn't much tbf 😂
hahaha well im outta spoons it appears😅😅 2 b fair how much rest does 1 need lol been literally sittin on my ass a whole yr now u wld think a yr on ur rear wld do the trick but nope must b goin 4 the world record..
yes u said it we should be in our prime my eldest is 11 and my youngest is 4 so should b out making the most of life not sitting about most days althou on the plus side i can get better at least with fnd it isnt a degenerative disease so have to stay positive in the hopes that i will be able to walk again 1 day.. i can shuffle about the house if i use my crutch it does tire me and hurt my hips alot but it gets me about inside at least... if i cld just lift my feet of the floor.. stairs r a no go but im slow n shaky coming down but going up i cant, either the hubby carries me up or 1 of the kids will stand behind me and lift my left leg up 1 stair and i use the bannister to pull my right leg up and so on til we reach the top in an exhausted panting state... dunno if u get this but im also very unbalanced mainly on my right side its like ive popped on the stena line and went to pay u a visit lol im irish like the fact ur scottish same type of temperment we r dealin with a shit sandwich here but u gotta laugh it off or you'll cry an have a pity party for urself and believe me done it on a few occasions and no it doesnt help 1 bit either lol😂
Nae spoons 🤦♂️😂. Yeah years on my arse here too...tbf, I've kept myself busy, 4 kids and doing the house up and whatever else I can do. I used to weight train and miss those days too much. Missus is a student and I'm what they call a full time mumm...i mean daddy 🥴.
I was a chef before this reared its frustrating head. Excellent job too.
You seem to have a great support system there!! That's awesome, who needs leg aids when you can get carried or replace the leg with a child 😂😂. Must be frustrating though, patience is key, but being in your 30s that's near impossible haha.
Yeah it's my right leg that buckles and my left is the painful tingling leg and hip. Although i think the right leg buckles because i over compensate for the useless left leg 🤦♂️.
Laughing is best, my dad does a good job on taking the piss when we're out...both walking like we've pooped our panties haha.
Hi there hope today’s not one of the really bad pain days ... been chatting to Lee too made me smile as well just wondering if you at anywhere near Edinburgh .. didn’t read where you are? Lucy in Brighton !
Hi lucy no im in belfast here myself... yes managing pain is one of my worse factors too and the more u do the more u hurt and the tireder u b it really is a viscious cycle... yes lee is a great laugh and we both kno u need to laugh as much as possible in our situation or we will b lost in our pity parties which i did a lot at the start 2 the point of dehydration ... how r u today hope u r feeling good
Argh ok Sinead...I’d love to see more of Ireland one day for sure. That’s not easy at all then for you...I was lucky to be able to make hour trip to London to see Prof Mark Edwards and get some neuro physio from Glenn Nielsen back in 2016, think he wrote some walking tips etc...I’ll try find them and post on here maybe helpful.
Seems there are now a few of us on here with these mobility and pain issues so good to share and know we have this forum to chat on and keep each other going .. especially on those days🙄
Lovely to meet you.
I’m off for a nerve conduction test on my left arm after 2 years of aches heaviness pain and weakness ( similar to my left leg) I have to remember if this is clear too, doesn’t mean I’m not feeling it eh !....
Oh yes Lucy please post.. take all the help i can get ... Wow u got 2 meet the famous Dr Edwards im so jel right now lol if i could pick his brain for half an hr even ... Sorry to hear u hav been suffering so long with this illness it really does take over everything at times thats why i love those times when u r able to laugh about it lol gets it out of ur system for a while... Yes do come to ireland its beautiful well if u get the weather that is haha so u may plan a quick trip if u r coming as it doesnt stay warm for long.. Hope your appointment goes well and keep me updated on your progress
Yes! What positions out of interest? Basically if I am laying on my back with them straight I can not move them at all. I can see the quads tensing but nothing happens. If I bend them they're fine and move normally. This is one of the things which helped me accept it was FND as it is just incongruent with other illnessess!
Hi may i ask do you mean when lying flat you cant lift your legs up straight as ive had the same problem for years and i went through stupid physios that told me well if you can walk you should be able to do this exercise it used to make me so mad id try but nothing would happen my thighs would tense up but it was if they were tied to the bed they wouldnt move an inch but like you say if bent they dont seem to bad.
I only ask as ive never heard of anyone else with fnd having the same exact problem.
Hi Terry, yes exactly that. The quad/thighs are frantically tensing but I can't lift them up (straight leg raise). Something has got stuck with that particular signal from the brain. It took me a long time to accept it was FND, but I do now as no other illness would behave that way.
And I'm afraid normal physios do not understand it. You'd think they would in 2022 but no, many are stale in their training, and I am even talking about neuro physios.
Only FND trained professionals understand these funny little superpowers (or should I say, non-powers). The thing is with this particular movement, although I had Neurophysio in London for my other FND generated issues (gait disorder), this one can't really be treated as it is attention driven.
What I mean by this is that when my brain's attention is on trying to lift the legs, they won't budge at all, but if I am absent mindedly watching a film, I will find I have lifted and crossed them. So the issue is not with the legs, it's with the brain! Hope that makes sense.
Aye what mic said...what positions? (Keep it clean 😂). It is funny for sure at times, in a funny not funny kinda way.
I remember the first time i dropped 4 years ago, right in the middle of the living room floor...kids were there...like a hyena on a pig, jumped on me like free game. They had no idea so i had to grit my teeth and play along. Dragged myself to the stairs to escape the rotten vultures 😂😂
Lol hilarious my da loves takin the piss as well think its their wee way bless them but yeah its all mad like i had 2 explain what it was 2 my gp she dudnt hav a baldy... but its good 2 u hav a good support system as well.. where wld we b without them wee laughs eh?? U take care and let me kno how u r getting on... i hear they have good docs in scotland and england for it but not so much here but when u think of it i taught 4 kids how to walk and ive learnt it once already... whos taking bets i can do it again lol x
I agree and you know us Scots, no humor goes over our heads, always the first to rip it out of ourselves, cause we were groomed from a young age to take the banter 🥴😂.
With docs it's just luck i reckon. As far as i know there is 2 of the best on this island, one in Edinburgh and the other in London who specialise in FND. Not sure on the names just their rough location 🤦♂️😂.
Without a doubt you'll get there, think of the long game. Its easy to bog ourselves down with the now. Wee bito positivity goes a long way 😉
Yeah finally some nice weather this week ... althou make the most of it cos u know this is our summer right lol... ach the arctic with the weather we r both used 2 between ireland and scotland u will breeze it in a dress and all🥶😅... no not been out in it today myself all out of spoons lol maybe tomorrow tho and ill keep a free spoon for some ice cream... gr8 2 hav a bit of sunshine like gets the kids off that internet and out into the fresh air and it does make a nice change..
Enjoy the heat while u can dnt save that dress just for the arctic lee dust that wee number off😂😂
Damn, i was looking forward to looking all fancy an stuff 😂
Yeah it's great to have this rare thing called sun...kids out with the friends and it makes ye wanna go for a walk too. I've managed 3 days in row. If i didn't walk like a zombie and have to stop I'd enjoy it more but atleast its out. So many kids here not in school for some reason, things you notice 🤔😂
Hahaha the gladrags will have to wait... Zombie lol the walking dead more like dead from walking... ahh to b young again they r prob taking a wee personal day for themselves u kno what kids r like these days.. im telling ya *at the risk of sounding ancient as this was all my granda used to say 2 me* they dnt know they r born this generation the easy they have it😂😂... Well im feeling bit more energetic today than yesterday so im sure i will get a bit more done had that well needed rest.. might sit in the garden and soak up a few rays get this pasty look of winter off my bake😎 maybe i can talk the hubby into making up a few cocktails later really make the most of this sun as we usually get 4 seasons in 1 day😏
Yeah i wish i could have warned younger me that this crap was going to happen, that advice would've probably went down like an old balloon. Younger us thought we were indestructible haha.
How you been? I'm just hoping those cocktails were made...maybe some for a rainy Friday will do? 🤷🏼♂️😃
Hi Bluefall, it sounds like you're having a tough time of it but i hope talking to some people here it can release some of that pressure and give you place for support (even of its support from a distance 😉).
Are you from Glasgow?
I hear you saying now that with the FND they can toss all issues you have under the same bus. Do you reckon something else is going or maybe you that they're missing something? Keep at them if you suspect something else though. It's your health, don't feel under pressure from professionals to accept...however...it could/might/probably be just FND also 🤷♂️. Im not a doctor 😂.
Have you applied for PIP yet? It's a hassle to get but it will help with a little extra money if needed 😁👍🏼
Aw I should've read this one too before answering the other on 🤦♂️😂. Hi again bluefall 😁👍🏼
I felt the same at the start of the diagnosis, that it wasn't really a diagnosis but the more i look into it the more i feel it resembles the thoughts of MS and ME in the past. It seems they are still throwing shit to see what sticks in understanding it. It's follows the severity shift between different people just like MS. Very similar but no myelin sheeth damage is what i understand. They could be missing things of course. Hopefully in the future they will have a better understanding of it all. Even i question the FND diagnosis sometimes but knowing it's something after 4 years gives me something to work on and try.
How you doing today? I'm a little hungover so in bed, that's my excuse for the short reply 😛
First off, fuck them. This is your health, push and push and do some more pushing for good measure. They can think all they want, but once you get the test it will give you peace of mind, less stress and a solid diagnosis to work with.
I was hit with the anxiety stick for years and that hindered me to get a clear diagnosis. I went to hospital when i lost my voice, couldn't walk properly, when my eye lids had serious debilitating and embarrassing twitches. First person that saw me always said, "oh this isn't normal for a guy your age, we're going to help you...let me look at your record". Anxiety, see ya 🤦♂️.
So frustrating and DID give up for about a year and then it all got worse and my family pushed me to get answers from them. And here i am, FND.
If you reckon they are wrong, not matter what they think, push them.
Remember we are little organic creatures on a rock spinning about in the middle of nowhere in deep space, what they think of you is irrelevant, the only thing that matters here is your health and you're peace of mind.
I'm newly diagnosed and slightly clueless as to what this FND thingy really means. My neuro has referred me for some physio and to a neuro psychologist which I've been told will take ages - but the FND explaination part was a bit lacking lol
So I've joined this site for some info and to chat to folk like me!
Any way was having a wee read of your post and replies and I feel a bit more informed and enjoyed a laugh - actually choked on my Kitkat chunky at one stage lol
This diagnosis sucks, the symptoms suck but banter and support helps so I just thought I'd say hi from Belfast
Hi Talulla! And welcome to FND (i still think that's a nice welcome to a shitty thing, like...here's a kitkat but i wiped it in my armpits, oh okay, I'll eat but I'll not be happy about it 😂).
How do you feel about the diagnosis? You're right and tbf you'll get more info here and YouTube than you will from your doctor or the neuro who diagnosed you. It's shocking.
I'm still on neuropyschologist, so i believe they're right on that. It's been roughly 2 months on waiting list. We are forced to sit and stew eh 🤷🏼♂️.
There are a lot of people just like you here so you will be made to feel right at home. It feels good to know other people are in a rubbish place like ourselves and it's also okay to feel okay about that too, it's what takes the lonely part away.
And share those kitkats btw 🤤.
If you read above you may have came across the spoons theory. Try to use it, listen to your body or pay the price. Seems almost like a hostage situation but it will help.
Armpit KitKats lol that's a something I never thought I'd type 😂😂 thanks for the welcome and the lol
Yea it's a strange place to find myself! It's only been a week but I've been spending it trying to figure out what FND actually is and what might make it better or worse for me. It's mad that they give you virtually no info at diagnosis! Or do they think psychic abilities is part of the disorder ☺
I was sounding a bit clueless while explaining it to my boss - then my left eyelid had a wee drama queen moment and wouldn't open for about half a minute so I just pointed at it and said - shit like this is what's happening! Hopefully she didn't think I was flirting 😊
Anyway - it's been a rotten year healthwise and I'm glad to have found a place to come and chat to people who get it - it can be bloody hard.
Yes you just wrote "armpit kitkats", you'll have to see yourself in whole different light now 😂
How long have you been dealing with the symptoms? After all the info I've read it seems pretty similar to ms without damage to myelin sheeth. Tell the boss that somedays it can be as debilitating as parkisons or ms. They will need to be more patient with you and understanding, so i hope that happens. I couldn't work as a chef anymore when this all started getting worse so I'm sitting here every day job hunting wondering what a guy who can't write and barely walk somedays can do now. Positive note, I've had a lot of time to spend with family which chef hours never allowed. It is nice although...you know, work is nice also haha.
Oh hopefully does think you were flirting, that would be funny 😂😂.
It's true, it can be hard but remember that everything is x4 exertion in all task you do. It's like working in 4x the gravity on a daily basis and the body is pushing through it and the poor brains is frazzled. It's almost like warrior training everyday for mind and body. If you know what Dragon ball is, you're a super saiyan haha.
I'm not to bad - my eye twitching is on hyper mode today, they're having their own wee dance off! Just off the phone with my GP I'm having a lot of trouble swallowing and I've now a croaky voice and pretty decent wheeze situation happening, so it's off to ENT! Hopefully just the vocal chords being a twit.
I'm sorry to hear you've had to step back from work - big life upheavals because of ill health must be a shock to the system but I hope you find the right opportunity soon! In the meantime can I just say you have a bit of a flair for writing so......😊 I work in mental health, irony lol, they're great but it's a job that takes it's toll so I'll just have to see how I go.
Last week when I got the diagnosis I don't think I understood it enough to get what it might mean - this week I'm feeling pretty devastated- hopefully next week I'll be ready to kick ass! Super saiyan style!
Well in the meantime, make the most of the opportunity to be present with your kids, I'm sure in some way they helped keep you in a better place than a pressure kitchen/chef environment. I used to work in a hotel years ago and the chefs usually had veins bulging from their foreheads lol.
Take care, hope today's not too shitty
Marie 😊
P.s symptoms started just over a year ago - well as bad as they are now. I think I've pinpointed it to a really violent reaction to a medication - was off my feet for weeks! How about you?
How are you Talulla? So the 2nd question is...What did the doc say today, did you get anywhere?
Oh thank you, maybe i should be a writer, the only writer who can't physically write. That would be my sympathy selling point 😂😂. I need something tbf, just applied for a laundry assistant in a care home, desperation.
That's weird you work in mental health. There isn't much info on FND but they do link it too mental health. What do you reckon on that?
Try to relax and not feel so devastated Marie. It's an easy thing to say and it can be hard but strong emotions doesn't help with symptoms. Tbf I've been feeling useless and frustrated today and did get on top of me abit but dug my way out with...a...emmm...nap 😂.
Yes, bulging veins and terrible addiction issues in chefs I've worked with haha. I loved my job tho, never felt pressure, i never took things seriously and just got my job done. They created pressure inside their own heads tbf.
What meds did that to you btw? You must be reluctant on any pills thrown at you now, yikes!
The bad stuff started 4 years ago, no reason, tremor, then lost ability to speak for months. The panic attacks didn't help, but they were caused from freaking out majorly at all the weird shit happening at the time. They stuck me on 60mg of fluoxetine and 80mg of propranolol for 3 years. Helped with panic attacks but took myself off it as it wasn't helping any of the physical symptoms. Now just gabapentin and pain meds and a little propranolol (just incase haha).
How about yourself? Have they suggested any meds for you yet? I resent taking them tbh but the alternative wouldn't be pretty haha.
Sorry to hear you were in a funk today, as I always say to my clients, just accept that it's a bad day, let it pass and wait for a better one to roll around. Sometimes we just need to allow ourselves to feel shit instead of trying to force the 'I'm fine' face.
Doc has sent me for a barium swallow test and an ENT referral - she thinks it might be vocal cord dysfunction - but wants to rule other possibilities out too. I don't think my kids would mind too much if I lost my voice completely 😊 I seem to be getting a run of new symptoms - the gift that keeps on giving lol
I've not discussed meds with my doc yet - the Neuro wants me on melatonin for insomnia and some thing to help with the jerks. I already take meds for restless leg and I've high BP - runs in the family. The bad reaction I had was to a BP med- it was frightening! I'm sort of in the wait and see mindset.
Yea my Neuro mentioned possibly mental health links for some people with FND and did a bit of fishing to see if that was the case with me - I felt that that was a bit presumptive and kind of dismissive, which was embarrassing. I actually got really upset at my diagnosis appointment after that, which is not like me at all! I had that moment of - do they think this is all in my head, which i know is fairly common with this diagnosis. I just started sobbing and asking them to please just help me this is very real and it is hell. Once they calmed me down 🤦♀️ we had a better chat about it all and i underdtood the possibility of a link. Ive heard in training for my job over the years the theory that fibromyalgia can be trauma linked - but who knows the brain is a very complex wee dude, neuro pathways and all that. I just think that How you receive your diagnosis should involve a conversation not a presumption as that felt like a kick in the guts for me initially 😞 im convinced for me it was the reaction to the BP meds, as my wee body has been going haywire since then 😟
Not feeling so devastated now, a bad few days, a bit like you - but we got our big girl pants on and got through it 😊
I hope panic hasn't too bad of a grip on you these days - it ain't nice, but going through issues like that and overcoming them shows you strengths you never wouldhave discovered otherwise - so shake a big middle finger at it!! How ate your symptoms at the mo? Have you discovered what makes them worse?
Anyway as for writing - it's not all about pen and paper 😊😊
Hope tomorrow is a better day and fingers crossed for the job!!
Morning Marie 😁👍🏼. Yestersay was a dozzie, today is just pain and weakness, i can deal with that. 2 days ago i was on the treadmill walking like a zombie and did some bench, so really it serves me right. I was told not to but...this monkey doesn't listen...to his own detriment 🙉😂.
Hahaha, you reckon kids won't mind? How will the know to do anything without the parent telling them too 😂. I got all boys here so it's a bunch of dummys running around like headless chickens without orders...the poor missus 😔. Did the doc mention any other possibilities to the issue?
Hmm, high BP meds caused the reaction, that can't be good giving you need em for high BP 🤷🏼♂️. Propranolol is also for high BP so maybe you could try that. It's multi use drug seemingly 😂
I've read there is link with fibro and FND to the mental state as well. I'm sure parts of that can be true and maybe anxiety in patients exacerbate the symptoms. The more we think about the worse it gets theory. I reckon there is more too it. I feel in a few years they will have a better handle on it. I also think current thinking of the problem is just like it used to be towards MS and ME before they got a handle on that too.
The problem is doctors making patients think it is in their heads. That also caused me to spiral, thinking i was losing the plot for a long while 😅. I hope FND also won't become a diagnoses to throw at people just because they have no idea what's going. I was hit with anxiety for a long time but it was cause by freaky shit happening to me haha. I was a sports student, very confident at the time, bodybuilding and powerlifting, teaching primary school kids about fitness and was happy as a pig in...shit 🤔. Then sudden urges to toilet showed up and i think that's when it happend for me. 8 years ago. And its been a slow decline since then with things getting rapidly worse in last 4 years.
But certainly i hope a better understanding and after care for FND patients will arise in time. Presuming the causes doesn't help anyone.
It's good to hear you're doing a bit better on the feeling devastated side. When you read here and everyone else is having a shit time too it does help. Oh, i wear my big girl panties too!! Tbh there not my panties but she will never know 🥴.
As for panic, nope, none, nadda and or maybe zilch. I've learned to accept what's going on and play the game of life with the cards I've been dealt. Good and bad days are a thing and that's okay.
Im def of the same opinion as you - I'm not one to be defeated - I had my wobble, i might have another one, but I'm ok with that. I'm learning that that's the attitude I'll need 😊😊
Adjusting to the new normal will take a while, but it is what it is. I'm sorry to hear that your active/fitness life etc got whipped out from under you that must've really sucked and I hope you've come to terms with it. I've lost a good chunk of what made me, me this past year - or so I've been thinking. But......maybe I just need to explore new opportunities. ive always loved art and I've had a dream of exhibiting- maybe I'll get my arse in gear and do it - art is therapeutic after all. Even if it's shite at least I did it lol I hope you find your mojo again in some new area of activity- I'm still gonna say WRITING 😉😁😁
I've got a bit of a bee in my bonnet now about wanting to learn more about the possible connections with FND and mental health - it is my line of work after all lol when I have the energy 😂
Hope today's a better day, and get those pants back in the wife's drawer 🕺
Yeah that's the best attitude to have tbf, accepting the new norm, knowing limits but not giving up and knowing it's okay to have shit days without feeling guilty. It's all easy to say but we know sometimes it gets ontop of us, as long as we try keep the above attitude it should help with living those words.
I don't know if i totally accept it yet, that was 2 days of shittness with a small exercise. Had the missus helping me up and down the stairs 🤦♂️. My pride was bashed but it did serve me right. I know and I've been told not to train but i couldn't help myself 😅. I'd say I'm 20% better than yesterday though, still bouncing off the walls and doorframes and limping about but there is a slight improvement.
Oh now would be a good time for you to follow that passion! Any specific type of art?
It's funny, you've mentioned writing a few times and never responded to it. I have written lots of poetry and sometimes still do, but it's not often.
I would like to hear more on what you find out about that connection Marie. There is one but how far does it go with FND? That is your mission, if you chose to accept haha.
Today seems better so far, i know the more i do the worse it gets, so maybe a couple of days of taking a wee bit easier. I could do with a new left leg tbh if you know anyone selling 🤔. Today is a few beers day, not many, that makes it worse too booooo!! Nope, i keep panties 😃.
How you doing today?
I've been thinking about some of the things you've things you wrote about your symptoms and I've been meaning ask, have you been checked for Parkinsons. I don't want to put scary things in your head but it was the thing you wrote about swallowing issues that triggered the thought.
Well, like yourself I was a bit daft yesterday! I moved into a new house this year and inherited a beautiful wee garden - only problem is, I'm fecking useless lol Any plants I've bought in the past have I'm pretty sure committed hari kari rather than suffer at my hands lol
So yesterday, when the rain stopped for 30 seconds, I nipped out to do some weeding....eejit! My hand clamped into The claw, my back spasmed and both my feet cramped and I had to walk back into the house like a baby chimp! So not a good look! My partner just shook his head - I have to say I peed mysrlf laughing though! Paying for it a bit today, but it's Friyay! A few beverages sounds good - enjoy your beers! And I hope you're having a better day. It's so weird when you're body won't do what you need it to do - but we soldier on eh? Well as best we can 😊 I'm glad for both of us though that we have our families to make it that bit easier. A lot of the folk I support through my job, have no one and it breaks my heart at times, so im counting my blessings.
Art: I've been painting and drawing since I was a wee girl.. I like abstract mostly and I like to pain in acrylics. Thinking about taking myself off to the beach if the weather ever permits to do a few landscapes. I did a few drawings in Krakow a few years ago (when not sipping cocktails) and enjoyed that so might try some more outdoors stuff!
I love poetry, I'm glad you have that and hopefully can use it as a form of expression when you need to get something out 😊
Yes this throat voice thing - all sorts has crossed my mind - process of elimination at the mo! Hopefully nothing to worrying but time will tell.
Yes I'll def chat to you about anything I find about FND/mental health connection. Knowledge is power 😊
Oh yes, those beers were enjoyed and a few games of zombie killing. Once a week for both of them is good enough for me. How was your night?
Jesus Talulla, no chimps allowed in gardens haha. How did it affect you today, did consequences show up? Gardening is a good thing to be doing. Maybe a wee seat next time. I laughed at the thought of you and hubby having a little chuckle at your expense 😂. Sometimes it's the only thing we can do.
Art will be a good thing to vent out your frustrations, find peace and kill a little time while you're FND is being a jobbie and not allowing you to do much.
Hmm, yeah that needs more checking. You need that all that sorted and your mind put to rest. Even it is the worse thing you thought then atleast you'll have the right info. FND can be an annoying entity also, don't we know it haha.
Okay, I'm gonna click that link...i hope i dont get any virus or am email for a Saudi prince needing some money for a start up, cause I'd hate to let him down 😂.
That was interesting. Not sure how I feel about it though. So overactive responses between certain parts of the brain, emotional side affecting movement etc.
Yea I'm not sure about the article either - I guess this understanding of FND is a work in progress, a few theories are gonna pop up. Have to be grateful it's being researched I suppose. I read another article saying the cause was more organic so ...... clear as mud! 😂
So you're a zombie shooter - I love shooting games! I'm really pants though - was working my way through the call of duties. If it had been real world I would have taken a lot of friendly fire lol not sure it's good for my stress levels - have almost launched the control at the tv a few times 😂 And gives me temporary tourettes
I'm not too bad today - arm muscles twitching like crazy but I'm used to that. How's you doing - all ready for a father's day pampering hopefully 😊😊 my poor fella will have to smile sweetly as our girls present him with his breakfast lol crispy eggs and scrambled bacon 😂
Yeah the article is good in a sense they are researching and putting a little effort in 😂. Emotion does have an effect on our mind and body but i hope they're not just giving up and rolling on the easy route of explanation.
If you read some articles on Ms and parkisons they also roll out the same explanation and some sufferers have also claimed exercise has helped them beat their disorders. It's hard to trust anything you read on the internet haha.
Yes, I'm in it for the head shots 😂. The call of duties are the best games, but next one coming out hasn't got zombies 😭. I'm gonna remind myself you said, so if we meet in a apocalypse I'll team you up with the arsehole of the team...lets just call it friendly fire 😏, no one else needs to know haha
Hows the twitching today? I had stupid painful twitching on the left thigh last night. Got it massaged but took so long to settle down.
He will love his scrambled bacon and crispy eggs 😂😂. I'll be going over to my father today with my kids and do it all there. So will just be lazying around until then watching rick and morty and might consider going on that treadmill today for a wee zombie walk 😂.
Yeah the article is good in a sense they are researching and putting a little effort in 😂. Emotion does have an effect on our mind and body but i hope they're not just giving up and rolling on the easy route of explanation.
If you read some articles on Ms and parkisons they also roll out the same explanation and some sufferers have also claimed exercise has helped them beat their disorders. It's hard to trust anything you read on the internet haha.
Yes, I'm in it for the head shots 😂. The call of duties are the best games, but next one coming out hasn't got zombies 😭. I'm gonna remind myself you said, so if we meet in a apocalypse I'll team you up with the arsehole of the team...lets just call it friendly fire 😏, no one else needs to know haha
Hows the twitching today? I had stupid painful twitching on the left thigh last night. Got it massaged but took so long to settle down.
He will love his scrambled bacon and crispy eggs 😂😂. I'll be going over to my father today with my kids and do it all there. So will just be lazying around until then watching rick and morty and might consider going on that treadmill today for a wee zombie walk 😂.
Hows you - hope you have lovely day with your dad.
I'm not too bad today, my arms are a bit tremor-tastic- I'd do a terrible job of the mannequin challenge 😁
I'm still shaking off feeling a bit low - not terrible, just preoccupied I think. Wishing things were different, but I'll shake it off! I was looking at walking sticks online last night, feck me that's a fun sucker lol Think I need a wee safety stick, for reassurance - I can fold away into my bag just so i know its there as my leg is getting worse. Waiting on physio app. So yea, if we meet in a zombie apocalypse - friendly fire is acceptable as the walking dead woukd literally just need to walk to catch me and the zombie look is sooo last year 😊
Hope the treadmill does you some good today. I've been thinking of getting one, well to be fair I've been thinking about it for like 10 years, but more of an incentive now!
I've ordered myself some new art supplies - time to do this! Operation self care is in swing - my shaky hand art should be interesting lol could be my unique selling point!
Have a good day- if I find anymore articles I'll send you the link. Don't be too excited now lol
It was a great day with family, nice dinner with the oldest and no1 of the family too (the old mans oldest brother). Always a pleasure to see him and his wife.
Haha, yeah no mannequin challage for you and 2 hands with those cocktails i hope 😂.
Yeah I've been thinking the same about a walking stick. The uncle was recommending it too last night and i had to tell him that maybe at his age I'd think about it 😂😂. But our thoughts might be right, but pride is like that, oh hell naw!
The teadmill is a good idea. You should be able to pick one up of gumtree for 50-80 smackeroonis. It's good for the old confidence since...no one can see 👀.
Shakey Hand Art by Marie...there is your selling title haha. Let us see what pours out of the bleeding pen/paintbrush, it will be interesting to see how you get on.
I run out of gaba over the weekend, had a bad effect on the walking but got some more now, had to cut it from 600 to 300 to tide me over till today, booo. Never even noticed i ran out ooops.
Hows you today? I have to admit to being a nightmare with running out of meds - I really need to stop being so flaky- it's the hippie in me lol
Pride can be a pain but I think if we do end up getting walking sticks we should just style it out - pimp style lol get some bling, we'll look awesome 😂
I don't work Mondays so I spent the afternoon decorating some trellis for my back gate - fake ivy and flowers - it looks alright, I think lol it ain't easy using a staple gun with dodgy hands, but I wasn't defeated!! Feeling quiet pleased with myself 😊
Think I'm gonna go see my GP, first time since diagnosis and have my symptoms properly recorded etc. Time for this journey to take some shape. I've niggling nerve pain down my left side so want to ask what they would suggest for that as it's a bit pants. I'm not on any FND related meds apart from what I take for restless limbs - which is a lifesaver - so it's all new to me.
Been thinking a lot about the future and what might happen if I need to give up my job. I do a bit of teaching as part of it and have been looking into getting qualified to teach English as a foreign language because you can teach online 😊 Trying to plan for the possibilities. Have you ever thought of retraining? Maybe you could write a cookbook seeing as youre a chef, and mix in some of that humour of yours!
Anyway, I hope you're doing ok. I'm hoping to get chatting with some girls who are working to establish some FND support groups here in NI and they're putting a lot into getting support for improved understanding and services. Take my hat of to them.
Today has been a bit of struggle on the old walking, so much pain and taking little limpy baby steps to get around house and feeling sicky too, weird but it could be lack of a gaba. Hope the meds will make me okay for tomorrow. Lesson learned tho 🤦♂️
Nice, you should post some pics of your decorted garden so we can all see the hack...i mean beautiful job you done with shakey handies 🤐😂.
Yes you should start a wee symptom diary and show the doc in a couple of weeks so they get an idea of what's going on. I think gaba is for nerve pain 🤔 and naproxen is for stiffness although it is a pain killer too. Hope the doc can figure something out for you, maybe suggest those and see what he/she says 😃.
I see lots of jobs for foreign English teaching on indeed. Seems like a good gig. Is that something you'll need to train for?
Yeah I think i need retraining, it's where to start thats the problem haha. A cook book eh haha, I'll make all the pages full of haggis lasagna and Malteeser cheescake 🤤 and pics of staged fights between bruised fruits and vegetables! Oh i might buy, plenty of pics, I'll follow that story haha
Oh nice! You should post something about that in a new thread here, there is a few from NI around. That will an exciting project, plenty of time to do it too, it'll be a good distraction also to be involved and...yes another and...helping others will make you feel good 2, everyone wins 😁.
🎼🎶 Drugs glorious drugs, i don't wanna take em but i have toooo, I'm singing this in my head and it's taken from Oliver, he's a starving little orphan but you gotta watch it, so drugs, glorious drugs, wonderful drugs...this is a bad sooooonnggg 🎼🎵
Awk- sorry to hear you're not feeling so good, hopefully you'll feel a good bit better tomorrow 😞 I hate to see or hear of people in pain - take care of you.
I think I missed the drug song in Oliver - must have been making a coffee or something 😉😂 so hope you know I'm gonna be singing that all night now lol
Yea you need to be qualified to teach English as a foreign language - gonna sign up for a TEFL course - prob after the summer - see if my brain can cope lol
And who wouldn't like a cookbook with fruit and veg beating the bejeesus out of eachother lol Ps anything with Maltesers in it is damn good 😊
Yea, I'll see get in touch with the girls from here who are setting up the support groups once I have a bit more time to get my head around it all. I've been feeling a bit kind of lonely with it. I don't think my family really get how hard it is or what it is, probably cos I've not explained it too well, and I don't really say anything if I'm sore or I can't feel my feet etc. etc. Think I'm gonna have to speak up and tell them. I just try to hide it and I shouldn't- I'm realising it's actually not good for me - who'd have thunk it lol
So, thanks for taking the time to chat - it's helped this newbie a lot!
I bit the bullet and bought myself a walking stick 🤦♂️. The shame. 34 and being beat down the road by an old guys WITH walking stick...that's what did it for me 😂.
How is the group coming along?
It's a good idea, will help you come to terms with your situation too and helping people has it's own benefits for you and others. I hope it works out 😁
Hey, there ain't no shame in the walking stick decision - it's the sensible thing to do. I'm sure having a sporting background doesn't make the reality of it any easier - but we have to try and play the hand we're dealt as best we can don't we? I'm glad you're not fighting against it anymore, you're giving yourself what you need, taking control. And I really hope its a case of - not forever, just for now 😊
I have my docs app on 11th July, first one available lol , and a barium swallow test next week - so waiting and waiting but hopefully it'll be worth it. Wee bit scared as my breathing is a bit kaput- but hopefully just a vocal cord thing as suspected and nothing too concerning!
The group's are being set up by an FND group I joined on FB, so it doesn't actually involve me - but id def like to go along once they're established as yea, would help to feel a little less lost lol
I hope it's a good day for you- and don't forget the stick is a necessity not an identity - self care is strength!!
I tried to send a pic but can't send on here, boooo. Had to buy a bigger one but received it already so no wait. It amazes me the difference it makes. Less pain and better movement, although still haven't figured out the up and down stairs technique 😂😂.
I also joined an FB group, but haven't done anything there yet. Left it a few years back so not really getting into FB atm.
That wait must be weighing you down a bit but it'll come faster than you think. Hopefully you can the right answers Marie 😁
It's another usual day, but never took my stick to the kids play at the school. The youngest was crying last night worried now that in have a walking stick so i never wanted him to feel bad and left it at home...it was a slow walk down haha.
I hope your wee son is coming round to the whole stick thing - bless him. Kids woukd break your heart!
It's a bit of a tough time at casa Marie - since I got diagnosed my partner has barely mentioned it - doesn't ask how I am etc. and well it's a bit shit to be honest. I wonder how many people have had the same thing happen - it's rotten. So I'm kind of bobbing along feeling hurt and worried and aggghhhh! Thank God for friends!
Off to look at some art today then a dander in the sunshine, Our 1 day of summer lol gotta keep on keeping on
I hope you're doing ok and the sun reaches Scotland 😊
Good luck with the uppy/downy stairs practicing and I'm really glad you're seeing a difference with the stick!
Mine started 2 years ago at first I was told symptoms would only last 6 weeks then I will be ok.
I had just had a disc decomposition on L5 disc already had a spinal fusion L4 in 2009.
Just after operation I noticed I was numb in the front of my left leg followed by unable to move it in certain positions which has got worse over time then stated to affect my right leg and also lost my short term memory which has not come back.
Then was diagnosed with FND 6 months after first symptoms it had then affected my arms and a tremor followed now can wake up paralysed in either a single limb or all 4 limbs which can last up to 6 hours and trying to move a limb in this state causes unbelievable pain levels.
Take a concoction of pain killers and nerve suppressors and if I don’t take them pain is unbearable.
Unable to work now on High PiP care and mobility components. Also on Employment and support allowance you may want to look at claiming these also ring up your local occupational therapist and get them to come round and do a home assessment and if you are have problems do the stairs they may put in a stair lift and will also provide you with any other adaptions you may need.
You've had a tough of it bud! It seems they didn't help much on that operation and now FND. Do you have a decent support system around you?
What did you do before all this started? I'm currently in the process of the PIP mandatory reconsideration 🤦♂️. Absolute nightmare Mark. I decided to stay go on Jobseekers because I'm determined or at least i was that i wouldn't let it stop me but as time goes on I'm finding it impossible to find a job that would cater for this nonsense health. You're probably right, i should apply for ESA. At 34 i was hoping to bouce back but 4 years down the line and with symptoms getting worse i may need to put pride aside...maybe just a little 😂.
Thanks for the info Mark. So a few questions...
How do feel about your FND diagnoses and do you feel you have received good support after diagnosis? Okay that was only 2 questions 🤦♂️🤷🏼♂️
Are you feeling better about your situation now? I'd just say, never end it Mark. You're probably over it now but here you can talk about things if you find it hard in real life. It's a good support system here.
I've been there before, many times but i changed my attitude towards life and it's expectations. With no useful help from professionals. Personally i felt they made things worse. Become stubborn and bitter to those thoughts and tell them, enough.
How did your job deal with you btw? I hope they were kind at least.
When i applied for pip i tried to change the date for after my neurologist appointment but they declined and it fucked up my whole claim. I've sent all proof now and waiting on the mandatory reconsideration decision. Here's hoping man.
I was already on benefits before the FND I had an industrial accident at work in Oct 2000 I went 20 foot in the air and back down onto concrete.
Fractured my spine and coxis gave me a paralysed Diaphragm pluse damage to my bladder and heart valves. Went from earning 40k in year 2000 to just over £100 a week.
So had ongoing medical problems before FND was diagnosed I ended up in over 35K in debt.
It was only when I got DLA standard rate that I was able to start dealing with the debt used credit card balance transfers at 0% interest and now don’t owe anything.
Wife has now gone on to progressive MS which has no treatment so she is on PiP as well we look after each other and try and keep each other a sort of happy.
Don’t forget it’s how you answer the questions there are plenty of sites that give you help on how to fill in there 35 page forms which when you have a neurological disorder is hard to concentrate on and fill in.
But if not successful keep appealing specialist and a letter from your GP is good (provided you have a good doctor which I do have)
I got some help from Salus here in north ayrshire. Good folk. I can't write so been getting folk to help out in that department. But when that rejected letter came through i was right on the phone. By then i had all the info they needed. If they had just waited a little this process would have been easier. Such is the bureaucracy haha.
I'll be on top of this bud. I sat for too long giving up on the system after waiting 4 years for a diagnosis. But now armed with the right information i can do something about it all.
Thanks Mark, I'll be appealing until they hate the sight of my name 😂
Bloody hell Mark, that's a horrible rollercoaster you've been on bud. What caused an accident like that? My imagination thought some kind of electrical jolt hitting you off a platform.
That must have been a major shock to the system going from 40k to 100 a week. I can see how you may have felt that way in the past because of the circumstances. I hope you've kinda came to terms with it all now.
FND is a kick in the teeth after all that i suppose but it's good to hear you and your wife have each other. I think between you, you both have a good handle on these sort of symptoms. And getting that debt off would've helped plenty!
I was at a nuclear side where they park the trains carrying nuclear waste across the UK using trains.
An install group installed a 6 mtr tower which had top of the range CCTV equipment including infra red floods about £15k worth of material.
The install team put it all together and had left site I went there with another engineer to commission cctv and connect to remote location via a router as there had been break ins at the site.
Turned out when I did the four floor bolts that the safety chain which is used to wind down the equipment hadn’t been connected properly, chain failed tower came straight at me managed just to get my arms out and saved my face otherwise I would be dead grab the metal coming at my head my colleague says I took off like superman went approx 20 feet in the air then came back down on concrete the force of the tower just went through my body and I was hiring from next down.
I feel like your telling me things that might bring the MOD to my door 😂😂.
That's a horrifying accident Mark. Were there any more people hurt?
You seem to be lucky to survive that. I know sometimes it might not feel like it Mark but you're made out of stronger stuff to even come away with your life.
How feeling today? Hope you and the missus are doing well 😁👍🏼
Hi Redbeard good name by the way i like pirates. Ive now had fnd for almost 8 or 9 years i suffer from really strong spasms which almost double me over backwards and my legs just cease up without any warning. Im basically being left to it now as there not much else they can do but when it comes to the pain im on tranadol for the pain and pregabalin for the spasms.
I understand completely what you mean by stairs being the enemy but i refuse to get a stairlift i force myself every night to climb the 13 things that make every step look like ben nevis.
I also walk like john wayne after getting off a horse with a hunch and anwalking stick. I also do doughnuts that i cant control i do circles rather than walking in a straight line.
Im a bit like you only my family keep me going without them i dont think id be here there my rock.
I used to work but i had to give it up about 5 years ago it just got to painful sometimes i cant even get out of bed on bad days and it makes me so mad i feel like such a useless piece of crap watching my fiance and kids do everything for me.
One day i was playing badminton and doing bowls and the next you have to stop no warning and i still find it hard to come to terms with even after all this time. I find it very difficult almost impossible to change my mind set which is what every doctor or pain management course tells you to do.
Do you find that people still judge you because of your age like your not really disabled that your putting it on and its all in your head and you start questioning yourself thinking your going mental and then wonderi g if you are putting it on because youre having a good day i went through a lot of this at the beginning as i was only 32 when it started and now im 40 and i still have the odd day where ill wake up climb down ben nevis feeling ok but then wonder well am i putting it on but than soon disappears whewhen i have a spasm or my legs start shaking or cease up.
So if you ever want to chat just send me a message i normally reply late night early hours or first thing about 8 or 9 am.
Hope i aint bored you to much.
Right im off polly needs a cracker. Take care and keep safe.
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Good to 'meet' you.
FND?
Anyone had experience with getting care for FND in prison (UK)?
FND
Temperature sensory changes FND symptom? Confused!
