Best piece of advice for a newly diag... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Best piece of advice for a newly diagnosed

strongerinthisfight profile image

Hi everyone,

I was diagnosed with FND about a week ago. I would love to hear your best piece of advice for someone who is newly diagnosed as I start to navigate my way through this journey.

Thanks!

25 Replies

Find a mindless hobby - I paint. Pray - all the time. If you must medicate - keep it as natural as possible. If you can't walk - it WILL pass. Don't hold onto past misfortunes, ill kept memories, or people who do not lift you up, or others around them. Do hold dear your loved ones. Tell jokes - and even more so, listen to them. Dim lights when you're at home and overwhelmed, light candles and play music that makes your soul smile. Dance - even by yourself - on the floor, tables, chairs, the ceiling, wherever. Meet new people, try new things. The more "self-aware" and "open" you are as a living being, the better your health. Be very careful of what/who you let into your life, and even more careful in regards to who/what you let into your home. Your home should be your safe haven, and should be comforting and easy to navigate - if it's not, change it. It makes a huge difference. Eat well. Laugh when life gets tough. Buy a Christmas Cactus - they're low maintenance and add some happy energy. Take a shower if you feel overwhelmed or call up someone you were friends with 10 years ago and hang out. We get so uncomfortable with having FND, that we fear leaving our comfort zones, but it's so good for us. Be a hugger, not a hand-shaker. Be a friend, and be kind. I guess that's my best advice. Oh, and salt lamps don't really work, but I do like the ambiance :)

That’s awesome! Thank you so much :)

Anytime!

Hi and welcome

My advice would be dont be too hard on yourself, try not to play the what if and but game never look back on things you use to do and blame yourself that you cant do it now. Find your comfort zone listen to your body if its saying hey hello we starting to struggle please stop rest recover dont think oh just 5 more minutes because we all know this leads into more than just 5 minutes and it'll take you much more than 5 minutes to recover when your body is having an fnd episode. break your days up into sections and never set anything in stone then you wont fell bad or guilty if you need to cancel at the last second.

i wish i gave myself this advice at the start lol infact i should probably do so now.

take care always around for a chat

Tabe

Thank you so much! And I agree an extra 5 minutes isn’t always good sometimes our body’s can’t handle it.

DON'T PANIC.

This is a condition that without any doubt will impact your life and the lives of those around you. But building the negative scenario will only debilitate you further.

If you want a second, pace yourself even if that means deligating tasks you would always have done yourself to give you a breathing space.

I wish you and those like yourself all the best on the start of what can be a new way of life.

Thank you and definitely pacing is a huge skill I have had to learn

Hello there its a difficult time for us all please look at vitamin b12 and pure glutamine what is happening and you don't know it your body is rejecting neutriants as mine is unfortunately my condition as reached a untreatable stage don't let the hospitals do this to you i have gone private just physio now do not let it beat you and remember this DO NOT LET ANY ONE LIGHT YOUR FIRE YOU HAVE YOUR OWN MATCHES IN YOUR POCKET and as for optimism throw away the glass that's either half full or empty and drink straight from the tap never thirsty again big respect mat

Justdrea81 profile image
Justdrea81 in reply to Mat08

I second getting your B12 levels checked. It's something most people don't look at, but the nerve damage can be permanent. I started on B12 pretty quickly, but we won't know yet what damage is permanent. It can take a year to fully recover from low B12

What if my victmin b12 levels are normal? Like would getting extra help at all?

I'm not sure if it would help, but it wouldn't hurt you at all. You will just pee out what your body doesn't use. But if you're not absorbing it, you will need shots for life (not a big deal, but it can be if your B12 is too low).

Keepstrong profile image
Keepstrong in reply to Mat08

Hi Mat 08.

I just wanted to say that your reply to strongerinthisfight was really amazing and sound advice, I have only recently being dignosed but like you to late. 🙄 But sure life dose go on and yes we do need to throw away the half empty half full glass and drink from the Tap as you put it brilliantly but let's make sure it's a water filtration system tap 😂🤣😂🤣 . I hope reading this reply will also help you remember your inner strength all this time ago when you posted it . 🤗 Be happy and keep strong 🤗 wishing you a wonderful weekend 🙏

Mat08 profile image
Mat08 in reply to Keepstrong

Thankyou so much if you are on face book find tal taylor that's me I am making a documentry with a proper film crew we have put the intro up its had such a great response I have decided to donate my brain to the neuro science department at Sheffield University but the film when ready is for us all blessings mat

Keepstrong profile image
Keepstrong in reply to Mat08

WOW that is just wonderful . I sure will. Thanks so much.🤗 I'll also send you a private message 👍

Also, that's how we discovered that I have a malabsorption issue. I'm still chasing that one down. The issue can partially be FND, but there could be other causes too

I have had a very hard time with nausea and having zero appetite lately. Could that be the start of something? What GI problems are common when people who have FND?

I honestly don't know. I've had GI issues for the past 10 years. But I have the "Jewish stomach" so it's not the norm. So far I've been diagnosed with IBS, GERD, and dyspepsia. It looks like I may have an absorption issue too. I'm very allergic to gluten (can't have it at all), and semi allergic to dairy. I've also had bouts of colitis and pancreatitis that had me hospitalized. And I had my gallbladder removed. So I'm a story. The FND stuff just stared in the last 3 months. I do believe the the FND is tied to the low B12, because my symptoms got really bad when my B12 is low.

Ahh okay. Wow you do have a story to tell! And I will look more into the B12 too.

My advice to someone newly diagnosed would be to step out of the conventional medical and find a Lyme Literate Doctor to rule out Tick (Vector) Borne Illnesses as the underlying cause of the syptoms your experiencing.

The conventional medical does not recognize Chronic ( Neurological) Lyme which unfortunately is leaving many to not get a correct diagnosis. The symptoms mirror one another and with awareness may it help someone to regain there health.

rawlsmd.com/health-articles...

Wow I didn’t know that! Will definitely read more and look into it

hmm its strange the b12 thing im very low on b12 and have injections every 3 months i was also very low on vit d and very low on folic acid which is wierd for a guy i wonder what the connection is there clealry is one

I recommend buying the Kindle version of the book Functional Neurologic Disorders, volume 139 of the Handbook of Clinical Neurology, and reading or listening to it.

Thank you I willl definitely look into buying it

Hi! I was diagnosed with FND about four months ago...compared to most people that's not too long, but I have learned so much within these past few months. I'm only 15 years old, so it's been hard for me especially since I'm in school. The best piece of advice I can offer you is to take care of yourself, that has probably been one of the hardest parts for me because I've always almost cared about others more than myself. But trust me, it's so so important! Take time for you and care for yourself! Praying for you and hope all is well!

strongerinthisfight profile image
strongerinthisfight in reply to

Thank you! I’m in high school as well and I’m finding it really hard to juggle school and my health any tips that you have??

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