I know I am going to get everyone angry!-maybe I feel this way because of my FND-I don't know? BUT I want to write as I read all your posts and sympathise with everyone. I have had FND-diagnosied 4 years ago and have suffered with it for about 6 years. It has wrecked my life, and my husbands. I read your posts and have all the syptoms that you all write about, I am, in a way, so glad that I am not the only one. I have suffered seizures, lost speech, lost bowel control, lost balance, torn my hair out, spat at my family in seizures, lost my ability to walk and talk correctly, lost all memories of before today and forgot where I lived, got lost going out of my house and fell so many times that I am bruised all over, cannot read books, cannot work out how to give change when paying and don't know what I ate for dinner last night, have no ability to dress myself with clothes that match and cannot think of the proper words for items eg, a banana to me may be a yellow long thing!-but all in all- I have learned to live with it all, and I wanted to write to tell you that you can except to live with it, as long as your doc gives you the right medication and that you are not in pain then so be it, having said that I always have pain somewhere, but my doc tries to help so much, I have been to rehabilitation classes for 14 weeks and have been to a councellor for 3 years, they have told me that my FND may never go away so we have to learn to live with it, PLEASE WHAT DO OTHER PEOPLE THINK...
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cocoferraro
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THANK YOU SO MUCH FOR REPLYING- I HAVE BEEN TOLD OFF FOR WRITING IN CAPITALS-BUT THIS IS NOT ANGRY-IT IS THE ONLY WAY I CAN TYPE! ITS HARD WHEN YOU ARE YOUNG AS YOU FEEL THAT YOUR LIFE HAS BEEN TAKEN AWAY-BUT ITS NOT SO, YOU CAN LIVE A FULL LIFE WITH FND, YOUR LIFE IS NOT SLIPPPING AWAY, YOU WILL BE ABLE TO HAVE A FULL LIFE IF YOU JUST GO WITH IT. OF COURSE IT IS EASIER SAID THAN DONE! BUT YOU KNOW I ALWAYS THOUGHT PEOPLE WERE LOOKING AT ME AND JUDGING ME, WELL THEIR NOT, IN FACT, THERE ARE MANY PEOPLE WHO HAVE WORSE DISSABILITIES THAN US, SO WHEN YOU ARE TRYING TO COPE, ETC, TRYING TO GET A BUS OR SIMPLY TRYING TO GO ABOUT YOUR DAILY LIFE, HAVE COURAGE, AND SAY I WILL DO IT, AND TRY.
I HOPE WHAT I HAVE SAID HELPS YOU.
XX IT HELPS IF YOU HAVE FAMILY OR FRIENDS WHO UNDERSTAND.
It's okay capitals not a problem doesn't sound angry 😊I understand where you're coming from, problem is there is no way to go about any "daily" life- outwith 4+ medical appts weekly, in restricted to bed,in agony, wheelchair to get about which can't even push myself,. Zero pain relief or medals work. Can't manage visitors,conversations, stimulus, or do anything myself for washing,cooking,eat etc 24hour care. Variety of illnesses so each day is worse than previous at mo. That's reality- but I just tackle each day. Hard to find an hope but have to keep trying hardest to keep positive and get better for family. X
So understand you and thank you for understanding me, it sounds like you are having a very tough time, can social services help at all, or get your doc to put you on stronger medication, because I don't beleive that in this day and age anybody should be in pain,having said that I am in agony in morning and at night with my feet, have had steriod injections in them for 3 years but don;t seem to work. HAVE YOU GOT SOMEBODY HOW LOVES YOU, OR WHO CAN CARE FOR YOU AS IT MAKES IT A WHOLE HEAP BETTER. Thank you for understanding me, my heart goes out to youXX
Reading your posts I get sad not angry. I read and I think ,”NO” that’s not ok. There is something the Dr’s are missing, help them. I once had a period of like two months where I was in the seizures non stop for like 18-20 hours, just froze not being able to move, speak, nothing, just froze. My husband would rub my arm and a tear would roll down my face, I couldn’t move but I could feel the tear. So hard. It ended with a horrible migraine, hospitalized for 3 days, new medication started, gabaoentin, back to base line again. Hang in there, there is help, seek and you will find, knock and the door will be opened, I am holding you both in prayer right now. God bless, Cathy’s
THANK YOU FOR REPLYING-PERHAPS ME HAVING ACCEPTED MY LOT IS WRONG?? I UNDERSTAND WHEN YOU SAY ABOUT YOUR SEIZURES, ITS HEART BREAKING FOR THOSE AROUND YOU. MY HUSBAND CAN ONLY SEE ME AS A PATIENT NOW AND NOT HIS WIFE, WHICH MEANS ALL LOVING HAS STOPPED. BUT KNOW WHAT THAT SEIZURE FEELS LIKE, SAME FOR ME, MY SON WHO IS 24 AND EXPERIENCED MY FIRST SEIZURE SAYS I SCARED HIM FOR LIFE!- HE LAUGHS, BUT WILL NOT ACCEPT THE FND, ALTHOUGH HE IS A FABULOUS HELP. WE ALL HAVE TO TRY HARD IN OUR OWN SWEET WAY, LOVE TO YOU, THINGS MUST ONLY GET BETTER???XX
I will pray. There is help, many have benefitted by natural relief from varified nutritionalists, I can pass on the name, many have received almost what would seem to be unimaginable benefits. Also when one seizure drug works for one but not another does not mean that there is not one that would work for you. Accept your life has been changed, but don't accept suffering, fight...As far as your husband he sounds like a very good man to take such good care of you, maybe you should tell him what you told us. He is still your husband and you both have needs..I need nine very much right now as my caretaker, but boy I sure need him as my husband too. I will practice the serenity prayer with every breath in me. Accept the things I cannot change, change the things I can, and pray for the wisdom to know the difference.
I have seen the worst of this disease, yes disease, I have suffered much as many of us on this board, but we fought, and continue to fight, to find help in any way with whatever we can. What works for one does not work for another, not a stand all cure for sure, but this is a real disorder, no one anywhere will tell me this is coming from our subconcious, if that angers some that is not my intent. It is simply my belief. God bless you all today, praying this day find you at peace and in no pain. Cathy
Thank you for your lovely reply, agree that something that works for one does not work for another, I don't think that any of us should be in pain, I send my best wishesxx
Thank you cathys20. Your post is exactly the same as my wife has started getting over the last 6 months. My grandchildren shout to me "grandma's having one of her funny's" .We don't know really how to explain "nead" to young kids 7 and 3.When she first started i thought it was cat naps till they started to get longer and came on with no reason. Now she has started having one after anther " up to 4 in a section" 3 to 4 times a day.She is now been assigned to a councilor so i only hope she can help.
I have been to hell and back but one year later I am getting there slowly , I may never get my old self or life back to how it was but last year I never imagined that things would get any better but they are , keep taking one day at a time and give your brain a chance to heal , lots of hugs 🤗 x
Our brains are very complex but they are programmed to survive , at first they will protect our vital organs and functions and then slowly slowly they will fight to rebuild and recreate our neural pathways . We are all unique and please believe me when I Say be kind to yourself and yours as it is working very hard behind the scenes to restore your bodily functions and it will. Rest up , eat well , take magnesium to support this process and try to smile as much as you can even when you feel like crying. My step dad died at home in February from cancer and my mum was diagnosed with hers two weeks before he passed away. I could have let this set me back and destroy me but I am determined that this is not as good as it gets and nobody is going to help me but myself. Stay strong , nothing stays the same forever , all things must pass and better days are ahead. X
You've not made me angry either. For those of us that have to try and live with all of the things we type about, we acknowledge it's tough, frustrating, makes us sad, angry etc etc. I've been told to stop apologising for my symptoms and my feelings which are only human. The things that I find hardest to deal with/understand is the guilt for my family and the the grey areas in relation to how successful my therapy and medication will be and am I going to get better and how long it will take. I've been met with shoulder shrugs and 'how long's a piece of string'. It's not the neurologists/therapists fault to offer that answer, but that's what I struggle with.
iTS FUNNY YOU SHOULD MENTION ABOUT STOPPING APOLOGISING, AS I WAS DOING THE SAME THING, AND IT TOOK ME A HELL OF A LONG TIME TO STOP, i HAVE BEEN GOING TO A COUNCILLOR FOR 3 YEARS AND IT WAS SOMETHING SHE SAID THAT REALLY HAD AM IMPACT ON ME, SHE SAID, DO YOU REALLY THINK THAT OTHER PEOPLE ARE BOTHERED, DO YOU REALLY THINK THAT OTHER PEOPLE ARE LOOKING AT YOU, DO YOU REALLY THINK THAT OTHER PEOPLE ARE BOTHERED, BECAUSE THERE ARE A LOT OF PEOPLE OUT THERE WITH WORSE THAN WHAT WE HAVE AND NOBODY IS LOOKING AT THEM, SO WHY SHOULD ANYBODY BE LOOKING AT YOU WHEN YOU DO ODD THINGS ON THE BUS, OR IN THE SUPERMARKET, AND THIS REALLY MADE ME THINK.
I FELT THE SAME WITH MY FAMILY BUT AFTER 5 YEARS I THINK THEY GO WITH IT KNOW AND UNDERSTAND IF MUM IS ODD TODAY, OR IF I AM DOING STRANGE THINGS.
I UNDERSTAND THAT I MAY NEVER GET BETTER, BUT IF I DON'T THEN WHAT THE HELL, AS LONG AS THE DOCS CAN EASE MY PAIN AND I CAN STILL ENJOY THE SIMPLE THINGS IN LIFE THEN I TRY TO BE HAPPY FOR THAT.
PLEASE DON'T STRUGGLE WITH "WILL YOU GET BETTER, AND HOW LONG WILL IT TAKE", THE DOCTORS DON'T KNOW, AND WE MAY HAVE THIS FOR THE REST OF OUR LIVES, PLEASE DON'T GET UPSET ANY MORE, YOU HAVE FND AND THATS THAT!, PLEASE MAKE SURE THAT YOU GET MEDICATION SO AS YOU ARE NOT IN PAIN, AND THEN GO WITH THE FLOW AND TRY TO ENJOY LIFE AS YOU DID BEFORE.
SO WHAT IF YOU HAVE SEIZURES, SO WHAT IF YOU WALK FUNNY, SO WHAT IF YOUR WORDS FAIL YOU ALL THE TIME. SO WHAT IF YOU HAVE TO USE WHEELCHAIRS OR WALKING STICKS TO GET WHERE YOU WANT TO BE, SO WHAT IF YOU CANT SPEAK, AND CANT FIND THE WORDS, SO WHAT IF YOU HAVE PAIN IN EVERY PLACE, THAT YOU CANNOT DESCRIBE, SO WHAT IF YOU FALL AT EVERY GIVEN MOMENT, SO WHAT IF THE BANANA IS SUDDENELY A PEAR, SO WHAT IF YOU CANT REMEMBER WHAT YOU ATE LAST NIGHT , YOU ARE STILL THE PERSON THAT EVERYBODY REMEMBERS, PLEASE TRY TO BE STRONG, SORRY PLEASE DONT THINK I AM BAD, BUT PLEASE TRY TO BE STRONG, I THINK IT IS THE ONLY WAY THAT WE CAN COPE. SORRY!!xxx
Wow, I have gone through all your conversations, and just have to say, you are ALL so very strong. To have to go through all that you do, and still come out alive is amazing to me. I look back and what I have dealt with in the last almost 9 years, and it suffers in comparison to what you all have had. It may sound funny, but I consider myself blessed, and feel so bad that you all have such a horrible time with this. Yes, I still hate the issues I have to deal with, the pain it causes, and what it has done with my own life, but like Alisaw, I do see changes here and there for the better thank goodness. Sometimes it is one bad gone, but another pops up, but sometimes things start to subside. I have finally found an anti seizure med that is helping a bit. Not completely, but I am grateful that the numbers of seizures I have had in the past have gone down. My walking has improved more a few little things here and there.
I hope and pray that things will slowly work out for the better for you. If anything that you can be grateful for or stay as positive as you can is family, then that is one thing you can try for, or just to be able to see the blue sky outside for the day, or flowers in your yard, or changing seasons. make it simple, and keep fighting to see those things. FND is not easy to deal with in any way shape or form. If you have it worse, then you must be one incredibly strong spirit to have to try and overcome that challenge here in life.
Prayers, hugs and smiles to you all. look for the simple things and hold on to them.
Do you know what-I think you are really great-cos you get it!- and it is hard for us to see other people struggling, its horrible, you are looking at each day as it comes, and taking each day at a time- and I have found that is all we can do-if we can grasp this-it is really hard-then it is better for us. This is extremely hard and I really sympathise for all of us. Cant talk anymore as bed is calling-I have pretty strong feelings for all of you with FNDxxxx
I think it is a bullshit diagnosed. You sound very sick. Could it be an auto-immune Diease? MS? Heavy metals? Food intolerances? Autonomic Dysfunction? I hope you well, don’t give up keep looking for an answer. It took me many many years to find my answer.
Yes you have to embrace the FND and what it does to change your world and to survive mentally. There has to be a purpose for everything you do by movements with your body and mind. The more you try to understand the FND process the better you will be. For example I was a Para Alpine athlete who tried to go to 2 Paralympics. Sochi and Korea. I have competed with the worlds best at the age of 54- 61 yrs old. Guiding blind skiers with my own vision impairments to 4 silvers. Also skiing by myself to all 5 disciplines. Downhill, SuperG, Super Combined, GS, and slalom. Check The Hidden World of FND and Beyond Sport on youtube also AvenueVision.com and Huntsman Cup2017 Park City TV.
I also paint now since competitive skiing is like a river run by. #Art4FND is now a world wide program for us to show our talents and have a sense of accomplishment. #NeverGiveUP
This is what I think: Get checked out for Toxins like Mercury, Lead, Arsenic etc. I would definitely do a Toxin Blood Test and a urine test, a 24 hour urine test. An allergy blood test, a food panel test by a blood test, check for Fructose, Lactose and Celiac test. Lyme blood test by a reputable source. Check for parasites in your gut and brain. Look for leaky gut and infections in your gut, it’s possible to have a mild infection in your body or gut. Did you have a MRI lately with contrast? The contrast that is used for MRI’s and other test is absolutely poisonous to our bodies. Europe does not use that contrast in their testing. I wonder why! Also have a fecal test done too. I had all these test done and I had everything except Lyme Disease. I had to go on a Detox program. It took years before I got most of my health back. I had over 50 symptoms including a severe balance problem with severe dizziness daily, not vertigo just dizziness. I developed Autonomic Dysfunction because of all these toxins, being Celiac, Lactose, Fructose and the worst was having Mercury in my mouth that was leaking for years due from a very small crack in my tooth that had a silver filling and wasn’t removed properly. I had to pay out of my own pocket for some of these tests.
I am glad that I did because there is always a reason for any symptom. Even tho Mayo diagnosis me with FND which I do not believe in. It’s a lazy diagnosis by lazy or uneducated Doctors. I can walk and have less symptoms but it took many years. I had to change my diet and always get screen for toxins yearly because my kidneys were damaged by the MRI contrast. I also had low Vitamin D, low Vitamin B12 and a few other Vitamins and Minerals. Zinc was extremely low too. I will never bee 100 percent but least I know how to manage myself now, no thanks to Mayo.
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I’m done but in a good way
I am lagging the field badly here...
Eyesight getting worse
