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Functional Neurological Disorder - FND Hope
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Orchid

I got diagnosed yesterday, I am inpatient and extreemly scared, terrified actually. Any suggestions please?

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Prayer, paint and music in that order....Cannabis edibles are also very nice. I was struggling for years (the first few, I didn't even realize it). Now, I feel back to my old self. There is hope! :)

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I was finally diagnosed last Wednesday, so I get it.

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Where did you get Canabis edibles? And what kind? Chocolate brownies?

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Well, I happen to know a guy who makes wax cookies. Wax is extremely potent and about a dime-sized bite of a cookie has roughly 20 mg...you can eat half of that amount (essentially crumbs) for a stable, medicated dose. BUT, you can make regular "special" cookies or brownies (candy, whatever) - you just have to consume a little more for the same effect. You can make tea with it. We have a local dispensary, so if you have a card yourself, or like myself - know someone who has one - then you can buy whatever you want.

If you just want the CBD for the psych side/mood enhancer vs. the high from the THC, then you can find CBD in oil and cream form at local drug stores, or find CBD gummies on Amazon. It's safe to order CBD alone online, because it's available at the stores, but THC is still sketchy to search for online.

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Are you in the US because in the UK I do not believe there is a dispensary with cannabis flavoured things...

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Do you know that you are breaking the law???? Don't lower yourselves!!!!-

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Cocoferraro, with all due respect it’s pain relief and cannabis is now being legalised slowly across the continent.

Besides if you are caught with cannabis enough for yourself and not for selling you do not go to prison for it, you barely get a warning either. So long as you are not carrying quantities that suggest you are selling.

Could I also ask if you’ve suffered excruciating pain that you cry out and scream howling like a wolf or dog, crying yourself to sleep at night or suffering it throughout the day because of it? (Severe Chromic Pain that you are too sensitive to be even touched by those trying to help you get your clothes off to change or to go to the toilet? That is me right there.

You may have good pain tolerance but I certainly do not. My symptoms are like an MS patient suffering motor weakness etc m or even a cancer patient going through chemotherapy after effects, as I also go through nausea, loss of weight, painful joints, limbs, muscles everything, sometimes loss of hair, so I’m afraid if a herb is going to make me feel better I think most people here who have talked about cannabis will take it if their Dr isn’t helping or if whatever the Dr is prescribing is not doing the job. Cannabis quite frankly does the trick. Medication purposes not recreation for myself anyway.

Sorry to sound frustrated but when you reach a point you just don’t know what to do, you will try anything.

Love from GentleFlower❤️

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I am so sorry for the pain that you are experiencing, I too have had extreme pain. I am so sorry.xx

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I too am sorry for your pain and everyone who is in the same boat but we have to do what we’ve got to do just to get through it... I wish you all the best xx

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By the way there are bakeries in the UK that make and sell foods with very low THC and CBD cannabis related components, the states have dispensaries so the governments are just prolonging a process that’s been long waiting to be legalised fully. They just want to do it slow, why I don’t know.

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They know people can grow their own at that point, and put pill distributors out of business. They're trying to control it - that's why it's taken this long.

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Amen... because it’s also much better than taking medication now that you say that. I was discussing this with a friend. It’s much better for your health actually because it’s a natural herb... minus tobacco. Tobacco is the killer if you mix it together and it’s also what causes the addiction because of the nicotine... you learn something new everyday can you believe it?!! 😍

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Do YOU know that Marijuana is legal where I live? Do YOU know that it relieves almost EVERY symptom, and can eliminate dissociative seizures completely. Before you judge "someone like me", be kind. This is a forum for coping, and I'm sharing helpful, and proven facts. You are more than entitled to your opinion. How you share it determines your character, so again, be kind. Oh, and yes, I smoked pot before it was legal [I'm honest].

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Do YOU KNOW that Marijuana is illegal to smoke in England, DO YOU KNOW THAT IF YOU ARE CAUGHT WITH IT , YOU MAY GET PRISON? They are trying to legalise a derogative of it, which is nothing like you smoking it. This would be a pill prescribed by a GP, if it gets legalised and probably not for what we have.

Please don't get me wrong, as a teenager, of course, I tried it, smoking it, as everyone did in the 70s and 80s,

Maybe, the reason why I cannot understand you, is that my GP prescribes my certain drugs that are very effective, and has also given me strong medication that I can take if I get to the point that I am going to jump off that bridge.

I AM NOT JUDGING YOU, IT IS NOT PERSONAL.

But smoking Marijuana is not he answer. of course it will relieve all your symtoms, cos you'll be sky high man. DON'T USE THIS TO SAY I DON'T UNDERSTAND. Its so easy to smoke it instead of trying to fight for your right to a better Gp etc.

Yes, this is a forum for people who are trying to cope, and for sharing our inner-most feelings, and I am not new to this forum and, yes, how I share my feelings does determine part of my character, And I have been in the place loads of times where I did not jump off the bridge, but believe me smoking Pot is not the answer, cos although it will relieve most of your symptoms and seizures, it will just be cos your sky high and out of it. If they make it legal for you then I will eat my words.

Don't come back at me and say your pain is so bad that you had to do it, cos my pain has been undescribable for 5 years that I am suprised I am still here. If you want to break the law, than that is your right.

So what are you going to do- smoke Marijuana for fininity and not try to get back to the person who can work for a living and earn to say "I paid for that"-and I have still got problems but with I am striving to get better instead of getting high everyday to blot out the pain.

I was brought up not to do anything to break the law, Marijuana is not he answer, or it may be for you?

Yes I have reached the point where I cannot go on any longer, but in the long term I think it is not the answer. Drugs from your GP are better, If you have a crap GP,then go get a better one and FIGHT, and keep on fighting, don't give up.

I AM SENDING A HUG TO YOUX

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CBD and THC are two different things....CBD doesn't make someone high - THC does. I hope they legalize it soon where you are as well. I don't smoke it either. I eat it. I respect your thoughts, but if you're on tons of pills, there's a much easier, more practical ..and heathier way. I'm just sayin.

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Hi,

Did not realise you were in the US.

Do you know what, spoke to my husband today about what you said, and my reply, and he thinks that i am a bit narrow minded.

So,,,,,,, pondered on it all today.

Yes maybe I was.

Get all that you are saying and now after thinking on it.

Maybe you have to do what you have to do.

So if it helps you then good for you.

But don't understand when you say that when you say there is a more easier, practical and healthier way?

Can you explain.....

In the UK we can't eat it, can you tell me...

Sending hugs to the US!!!!

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Hi there, I appreciate your honesty, and I respect that very much. Thank you. By healthier and easier, I literally mean just that - it's healthier and easier on your body. There are no harmful side effects. You WILL enjoy social activities like talking, dancing and singing quite a bit more, you'll find food to be more appealing, and you will sleep great! I'm not a stereotypical pothead. What makes pot "pot" is the THC. There is THC (high) and CBD (not high). Here is a day in my life FULLY functioning with FND (very impressive since I had [dissociative] seizures almost every day before).

5 am - I wake up, get ready for work, get my 2 yr old and 4 yr old ready to leave for the day. This takes a while.

6:45-7 - We leave the house.

7:20 - I drop the 2 yr old off to daycare.

8:15 - I meet the bus with my 4 yr old. I drive 30 minutes out of the way for her to go to a better, safer school (it's a commute, but very nice little town - she loves it!)

9:00 - I open my office. I have a busy insurance job working for a large, very well known company which I will not name here. Now 9 - 4:30, I deal with every complaint, heartache, people who really just need someone to talk to really (and your insurance agent is still cheaper than a therapist), I help people make better choices, give them great coverage, help them save money, and give them sound advice on how to handle the real world once they walk outside my doors. I also make lunch for myself and the other staff members, and help them complete all of their tasks, and get them home to their littles at a reasonable time.

4:30 - I close my office, and drive about 40 minutes to the afternoon bus stop.

5:10 - I get my big girl off of her school bus.

6:00 - I pick my little girl up from day care.

7:00 - I get home, cook my family dinner, wash, dry and fold my husbands work clothes (he cleans out chicken houses for poultry farmers. He has Cerebral Palsy and can work 80 hours/week and still make time to play with us, thanks to Medical Cannabis).

8:30 - Baths and bed in a 2-story house I used not to be able to walk up the stairs in, but it's what we could afford at the time.

10:00 - Our showers, and dinner time cleanup and more laundry.

11:00 - I work on my artwork - I am a commissioned artist.

12 am - I go to bed

**NOW** First of all, ^ this is crazy! It'd be hard for a "normal" person, let alone someone in our shape (with FND). I used to be very skeptical about using Cannabis, because of my religion. But, I believe it's all in how you use it. It's like anything else in life - MODERATION.

For someone in the UK, it's apparently not that easy to come by, I suppose. I wasn't aware of this. CBD should still be easy to obtain - like an essential oil. I have a friend with Cancer who is treating himself with CBD oil and frankincense, and his health has improved exponentially! The CBD component itself IS NOT a drug. It is viewed here in the states as an essential oil/plant extraction, because alone it will not produce a "high". It is completely harmless to your health in any way, and can improve you yourself, and your quality of life. Now, it's up to you what you put into your body, BUT this will not harm your organs like pills will - all pills overtime will cause your body all kinds of issues, and to me it's never been worth it. I'm just saying, if I can do ALLLLLLLL this stuff, and still have time to plan a fundraiser for that friend of mine with cancer, go out with friends, go to church, and drive for 3 hours a day, and work, and still play with my kids, AND please my husband (wink, wink - we're all grown here)…….then it's something worth looking into. It really, truly is. I get the stigma around Marijuana, but if you're not into that, try the CBD out. You'll notice a difference.

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Also, if you don't have "edibles" available, it can be cooked in a pot with a very small amount of olive oil, and then drained through a piece of cloth like a pantyhose, and consumed as an edible oil. If you can't eat that (it's not that tasty), then you can mix it into something to eat. I have a friend who does this because he has an illness similar to ALS, although I forget what it actually is at this moment. He's a mechanic, and the main provider of his family. The illness made it so he couldn't lift his arms....kind of hard when you spend your time under a vehicle on jacks, or under a car lift. Now he can. But, anyway, enough about my little world. Do some research. You may come to change your mind about it, and if not you can be where you are. Me personally, I was so bad off that I couldn't. Too many people depend on me, so I made a change that's helped me get my life back. I've got to go, but all of y'all on here, have a blessed day :)

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I AM in the US.

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I’m happy to hear that folks are discussing medical marijuana on here. I live in New Mexico in the US, When an acupuncturist I was seeing gave me a cannibis medical card, I was at a low desperate point, you just aren’t living when your having seizures daily and they were getting worse and seizure meds though they seemed to reduce seizures had worse side effects than the seizures. Honestly I didn’t think thc would help me but like I said I was desperate and deteriorating. I had already tried many brands and strengths of CBD oil with little improvement. Adding just a little bit of thc to the cbd made a world of difference! And then when I got into ketosis with the keto diet, that’s when I started getting my life back.

I’m not like most people, THC makes my pain worse, if I take enough to get high then it’s like I have a new awareness of every sensation ache and pain in my body. I take a tiny amount of thc and high cbd three times a day. I am never high, I drive, I work, I take care of my kids, things I wasn’t able to do for almost a year when I was having seizures. I still have to be careful about who knows about the thc, for example I work for a newspaper and meet with the police chief every week so I can get the info to write the police blotter, we get along just fine, respect each other but I could/ would never tell him. It sucks that it’s like that but that’s how the world works.

I’m twelve weeks seizure free!

The thing is that although it’s helped me with seizures my left side issues have not improved at all. I still have numbness weakness and pain. Every morning I still check my face in the mirror because I feel like I have Bell’s palsy. So I guess everyone is different for what works for them.

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I'm so happy to hear you're feeling better. It feels good to regain abilities, and to "keep up the pace". You've got no secrets and no judgements over here!

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Hi,

You are far from alone.

There is no one thing that has caused your FND. An event could act as the straw that broke the camels back so to speak. Likewise there is no one answer.

I do advise you not to push yourself through this. Frustrating though it is. We do tend to be the people who keep going through thick and thin when everyone else has given up.

Trying to push yourself will land you flat on your backside. I don't want to sound negative, I just wished someone had spelled it out to me at the beginning. Mind you I wasn't concentrating so it wouldn't have sunk in.

Hence the bullet points. I know what it feels like. I don't mean to be patronising. I know I had difficulty taking in information. Concentration can be poor and add the shock of it all coming on so suddenly I guess from your hospital admission. I appreciate your world has just fallen apart.

There are a series answers, but no panacea. It will be a combination of different things that will get you better. All angles and, yes that does mean psychotherapy in the form of CBT and distraction techniques. But...

It's not all in your head. There are doctors who now use the term FND, but still treat you in the old, patronising, "snap out of it" kind of way. See a specialist in FND if you can. There's a very short list. It's a longer list in the UK.

When you've stopped reeling with the shock have a peruse of the FND Hope website. There's advice on pacing, nutrition. helpful supplements and of course news of research.

It does feel like there should be someone with a clipboard welcoming you to the other side when you've been diagnosed. This community can be as close as you get. So welcome, and rest up. xxx

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I really agree wholeheartetly with what you have written. I think also it depends on what area you live in as to how cluded up the doctors are on FND. Outer London seems to be a lot better.

When I was diagnosed 5 years ago, I was in utter termoil, but like everything else, I thought this would get better too. Now I understand, after a lot of research, that FND may be something that I have to live with, as after 5 years there are more sypmtoms cropping up-please excuse the spelling as that has been affected too, as well as my speech.

But all along I have had a brillient husband by my side.

SO NOW IT REALLY DOES NOT MATTER THAT I AM NOT GOOD AT ALL THE THINGS THAT I USED TO BE, THAT I CANNOT READ A BUS TIMETABLE, THAT I GET LOST IN A PLACE I HAVE BEEN A HUNDRED TIMES BEFORE, THAT SOMETIMES I CANNOT SPEAK OR SEE PROPERLY, I CANNOT REMEMBER MY DOGS NAME, I DO NOT REMEMBER WHAT I ATE FOR DINNER YESTERDAY, OR WHERE I PUT SOMETHING SPECIAL TO KEEP, THAT SOMETIMES I HAVE TO USE 2 WALKING STICKS, AND THAT MY WHOLE BODY ACHES AND THERE IS SOMETHING CRUSHING MY SKULL EVERY 10 MINUTES, AND THAT I HAVE SEIZURES IF I GET EXTREMELY ANXIOUS, IT ALL SOUNDS TERRIBLE, but the only thing we can do is accept it and learn to learn with it......do you agree? Perhaps going with the flow makes it better?? that is what I am doing now, I don.t care when people stare at me and when things get bad just go with the flow,,,, what does everybody else think????,,,,much loveXX

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Dear Orchid955

Please dont be scared and in a strange way welcome to the club 'hopeing to get a smile'.

Your going to have a million things go through your mind many questions wanting answering and many what if's

but the best advice i can give is try not to allow things to stress out out too much

try not looking back and pushing yourself to be that person again overnight. if you get tired rest dont fight it and jobs can always be done later.

try not to plan to many things at once and close togther

i find this helps me eventhoe i struggle alot i find that these things above do help but we are all different

but please dont be scared your going to be kk changes are required but your do it and we are all lovely on here feel free to contact me if u need to chat at any time

tabe

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Orchid Hello and welcome to our cruel world of FND. I’m trying to be funny only because I’m back in bed today BEDBOUND again and suffering motor weakness, neck and spinal pain from where my head joins the spine all the way down, unable to move all limbs without excruciating pain because I did a little bit of hair washing yesterday (just shampoo and conditioner separately and I didn’t even use the hair dryer) sad I know!!! And I had a full body wax. I usually get these things done by a professional but I forgot the payment I have to give later, not in currency but in actual pain and this time it’s worse. I need to stop abusing and taking advantage of my good days, that’s advice number one.

All the above has happened despite taking what is supposed to be strong pain medication co-codamol and extra codeine before commencing my activities in preparation to avoid PAIN in addition to the CHRONIC PAIN I already suffer with.

It’s not all bad I will be okay maybe tomorrow or it can drag out all week, I’m hoping not 6months as I was bed bound at the beginning in 2016 for that long to about a year. I know. Because FND is so unpredictable you never know how long symptoms last.

On the bright side I now know how to manage my symptoms, they come in cycles. At present it’s insomnia taking over last few weeks on and off rapidly, pain always there, fatigue too. I feel as though I’ve been on a night shift and I’ve done those years ago.

This leads to advice number 2, you have to rest when your body tells you to. Forget the world, you’re top priority and in most cases you won’t have a choice, you will just have to bed or sofa rest depending on how bad your symptoms are if you can get to a comfy spot on time (with a bit of warning etc).

But fear not, you will learn to manage your unique FND symptoms, you will be able to lead a normal - ish life. You will be ok.

I couldn’t agree more with thinkin - I truly relate to him or her(I don’t know their sex) but everyone here has given great advice, however, thinkin is right on point, follow him/her on here as I think most of the things thinking says are exactomondo👏👍🙌

I don’t know what your symptoms are but I was in hospital 3 weeks, in that space of time I lost my job, my first home ever along with my first ever fiancé (first time leaving mama and Papa’s nest), I then my previous white fluffy Bichon (dog), eventually my fiancé too and basically everything... this is sensitive for me but want to share so that maybe you can prepare better and not lose things. 😢:’(

It’s a cruel condition no matter how much the Dr’s try and make it sound so trivial dismissing the use of wheelchairs, walking aids etc... buy what you need to buy to get around. I have my disability world set up... started on my own but now all my Dr’s and professionals who help me have jumped on board having become more understanding to my condition.

I have incontinence pads for extremely bad days , urine devices for indoors (bedside) and out (small concealed ones), shower chair, hospital bed, bottle openers, straws, medication for pain also set on housebound delivery’s , spoke cannabis sometimes for pain it’s sooooo good/incredible, wheeled table that goes over my hospital bed, Netflix for bed rest days lol got to chuck that in, it passes time and helps you doze off I guess depending on what you’re watching. I have manual and electric wheelchairs and most importantly a very good support network - mums main carer, dad and sisters.

So just start setting things up is the best advice I can give. Which is advice number 3 I believe. I do not and will never accept my condition but you must come to terms with and accept you will need help and aids to help you to be as independent as possible and this I think is the hardest part because I still feel extremely embarrassed to go out with my wheelchair.

I’m 28 was diagnosed at 26, so it scares me that I won’t be able to find a partner this way, onlookers, embarrassment when things go wrong with wheelchairs in public causing a scene etc...it’s a horrible situation but on my good days I get out and about and have met people who look past my condition. So you’ll be fine.

I only wish I joined this community the minute I went into hospital but no one really signposted... I was on a trial for dissociative seizures and CBT which I didn’t find helpful. Only with distraction techniques like feeling the fabric around you, concentrating on a picture or art on the wall and taking yourself in you mind to the beach or somewhere peaceful where you love... far far away from the reality, that kind of stuff it helps. However I think talking therapy would have been more beneficial as I am still struggling with accepting what’s happened to me 22months in.

It’s all a puzzle and a figure it out yourself kinda game. But you’ll get it once you know how to manage your condition.

I wish you the very best, pray, sleep and relax your mind a lot, watching comedies or funny videos things that won’t make you depressed or cry even though at times that’s avoidable, cry if you have to.

Apologies for the novel.

Love Gentle Flower 🌷

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Hi,

I was diagnosed 5 years ago. It has seriously changed my life. Please don't be scared-it is easy to say but there are millions of people out there just like you who have the same thing. IT IS SERIOUSLY LIFE CHANGING. Some places and doctors are really genned up on it, I am one of the lucky ones, my doctor is ace, but other counties seem to be in the dark ages, and I'm afraid that the treatment you get just depends on where you live.

I am so sorry that you feel so frightened, so was I at the beginning, and even sometimes now.

If you want to know all about what you have then go to neurological Funcitional dissorder, you , I am sure will relate to all the symptoms etc, although it is different for everybody.

Please don't be scared, I know it is so scary. I have been to hell and back, but luckely I have a wonderful husband who supports me and understands. It is a long road.

Please take everything as it comes, I hope this helps, please try to be brave, I have cried a river of tears.

If you want to talk more, maybe about the symptoms, then you know that I am here for you.

Much love, 52 year old and been around he block a few times!!XXXXX

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HeartOfGold and cocoferraro I think we have established here that everyone has their own way of dealing with their own unique symptoms.

We’re together not against each other, we all suggest those ways we cope to each other and it’s up to each individual to try it, accept it or to comment or just read it and leave it. ☺️

This group is great and we are all here to share love but I love debating to so let’s do so with love 🌹😍

Love from GentleFlower

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