Coping With New Diagnosis

[Buxnny]

Hi! I've recently been diagnosed with FND after dealing with the symptoms and this confusing disorder since middle school. Frankly, I'm having a hard time dealing with the news and symptoms and I hope this platform can help me understand and change my mindset. The biggest thing I have been dealing with is severe memory loss along with bone pain, paralysis, trouble speaking, absent seizures, GI issues, etc., and I need some people who will hear me and listen.

It's scary to have all of these feelings and symptoms that, in the end, I can't fix in an instant, but I'm not going to let this condition take any more of my life away. FND has taken away so many things from me, and all I've ever wanted was to be a normal teenager, but that truly changed this year when I had to leave my senior year to spend all my time in the hospital where nobody listened to my pain, which led to all of my friends leaving my side because of the unpredictable nature of FND. I can't entirely blame them; they didn't expect their friend to change in an instant completely. I would be hesitant if one of my friends couldn't remember the conversation we had an hour ago, but at this point, I dont have anybody.

I'm embarrassed about this condition and who I am because of the domino effect that it created in my life, and I have to wonder if the doctors dug a little deeper when I was young if they listened to a hurt and scared little girl, maybe today would be different, but there's no use in looking in the past now, and all I want to do is to get to a place where I can live, not just survive, and that journey starts today.

If anyone would like to comment and help me understand or give some insight on ways to make days easier, I appreciate all of it with open arms!!

[Comma2025]

Hello, I'm so sorry to hear of your struggles. If I could recommend one thing it would be get the book "Reset and Rewire: The FND Workbook for Kids and Teens". It's helped my son so much. We don't have the multidisciplinary team around us that it recommends but honestly don't let that put you off if you haven't either because there's so much in there you can get on and do. It recommends lots of nice things you can look for on YouTube and be talked through how to do them. Good luck. I hope you get the support you need.

[Buxnny in reply to Comma2025]

Thank you so much I appreciate this!! I ordered the book and I'm so excited to learn from it!!

[Panther5000]

It is scary, uncertain and a relief when I got my diagnosis. Challenge your brain and what it is telling you. I had a feeling of weakness and was having a hard time sitting up without back support. Had other symptoms as well but I also felt like my core muscles were deteriorating at a greater rate. Found out that my muscles are actually fine and strong I am just unable to use my strength sometimes. Started doing Yoga and things have improved. I was doing other kinds of exercise and my thighs were so painful. With perseverance it slowly changed. I just made sure it was more like soar muscles and not shooting pains. Working on your mindset is a very good idea. I have looked at this is my bodies warning system that I have put it through too much in the past 20 years and took on too much. For you being younger there might be some trauma or if not something else went wrong somehow. Neuro PT if you can to help find out ways to improve or cope with it. I second get "Reset Rewire"

[Buxnny in reply to Panther5000]

Im working with my psych team to try and dig deeper into my diagnosis and Im starting PT in the next couple of weeks and im excited to see my improvement!! Ive also started to get into yoga and it really dose help the mind and the body, thank you!

[Hidden]

I just wanted to reach out because I relate so much to what you’re going through. I also have FND, and it’s been a really tough journey, especially with memory loss, paralysis, and all the other symptoms that seem to come out of nowhere. It’s so hard when people don’t understand, and losing friendships because of it is something I’ve experienced too. You’re not alone in this. I know how overwhelming it feels, but I really admire your determination to not let FND take more from you. It’s not easy, but we’re stronger than this condition, and even on the hardest days, we’re still moving forward.

Does this feel more like what you want to say?

[Buxnny in reply to Hidden]

The biggest struggle I've been having is feeling so alone in this process and I want to thank you for opening my perspective!! I really appreciate you commenting, you made my day so much better!!

[MzLee88]

Hello, I was diagnosed last year. March 18, 2024 changed my life forever. I went to the hospital because my left arm went completely numb. I felt like I was gonna pass out. I was in the hospital for 2 days. Doctor came in and said I look absolutely fine. In fact, my brain was just as healthy as a 25 year old. I'm 37 lol. What he did say was that he found 4 Tarlov Cyst on my spine that could be causing the pain. He told me to stop lifting heavy while they ran test to see if that was the root. At the time, I was also responsible for taking care of my mom with Dementia. Which was hard, but I didn't know just how hard it was on me. I walked out of the hospital like nothing was wrong and continued to go about my life waiting on test. I remember the first crazy thing that happened to me. I was sitting in the car and my feet began to turn inwards and then my hand started to flip around in the palm of my husband's hand, like a wet fish. I freaked out, which now I know made it so much worse. By the next month, symptoms just started to progress. Extreme back pain for days. I started falling down at appointments and my heart rate was always extremely high. By the time I saw the Neurologist, I was in a wheel chair. Couldn't remember anything, couldn't think for myself. None of it. When he saw me, he immediately said unfortunately I believe you have FND and I was told atleast it wasn't cancer. Worst response ever. Next, he said Google it. He made it seem so simple. But it wasn't at all. Prescribed me a ton of medications and said to send all my paperwork for work in and insisted that I see a psychiatrist. I was totally against that. It took my therapist to tell me how important it was to see one. I know exactly what you're going through. It has been hard on my family as well. My husband and my 16 year old daughter have had to step up and cover bills. I've seen so many doctors that have dismissed me and my condition. I've even had nurses at the hospital step back and say, well what do you want us to do? 😭. Enough about my horror story though. Despite the hard days I've been through, I've found ways to better myself and make my condition easier. I've changed my diet and I've included some vitamins that help with mental clarity. Magnesium and Vitamin D is a must. I do Physical therapy once a week, as well as CBT therapy which has taught me to challenge my negative thinking patterns. I'm definitely seeing a difference and the more you learn about this condition, you will to. I hope and pray you get peace throughout your journey with FND. It is very challenging. I went from climbing a waterfall in Jamaica to being on a cane, but that's okay bc im defeating this thing and one day I'll be back there again. This time, I'll appreciate it so much more.

[Lady4 in reply to MzLee88]

Hi, I just wondered what did he do about the 4 Tarlov Cysts he found, was there any connection to your symptoms?

[kev60]

Hi and welcome . I had stroke like symptoms and 19 months later diagnosed FND. I have more bad days than good. You need to enjoy the good days as best you can. Here in the UK there are a lot of clinicians who don’t know about FND and you have to educate them. You will get a lot of help on here. The thing you need to do is listen to your body and if something is wrong get it checked out. Doctors seem to like putting everything down to FND and in my case age as soon as I hit sixty everything was old age. I hope you find the answers you seek. Kevin

[Shimmyaway]

It is so sad to read of all your tribulations. Let us hope the medical community can help you with the right therapies, ( and only absolutely essential medication )but in the meantime start your own DIY journey .. address the nervous system with yoga, slow deep breathing and progressive muscle relaxation. Look at your diet, remembering that the neurotransmitters in your brain are made in the gut .. and your immune system is also largely in the gut ...see ZOE diet recommendations for how to help that 'chemical factory ' in your body. Increase the sensory input when you try to move parts of the body that are reluctant. Keep moving and keep a record of your progress however small a step it may be ..so good for your morale. You are now amongst people who all know the ride you are on, and like you, want to get off! Best foot forward...age is on your side.

[Lady4]

Hi Buxnny

Welcome, it sounds like a turbulent journey but your not alone and this is a safe space to vent if need be.

Sometimes coming to a place of accepting that life may not always go the way we hoped is half the battle, and being open to learning everything you can to make the journey easier, is the best place to start.

Have you any medical professionals on your side? OT, PT, speech therapist, psychologist etc, can all help. Plus can I ask what "rule in" sign they used to confirm the FND diagnosis.

It sounded like trauma may have been one of predisposing factors but it is not always that way, sometimes it can be a series of events and even the smallest pushing our CNS more towards the protective side.

Its a difficult condition for others to understand, I am sure everyone of us here has experienced Stigma from someone and we are working together to break that barrier and advocate for ourselves to get better care.

Sometimes we isolate ourselves and push others away but that only leaves us time to concentrate on the discomfort our symptoms are causing us, maybe when your in a better place you can reach back out to them, in the meantime we are here for you.