i"m new here and i recently got diagnosed with FND. Since i'm still in uni and it happened on a studytrip to Jordan...i have so many questions like what now with FND and school? how can i cope? what impact will it have?
to give you the full story:
a month ago i went on studytrip to Jordan with my class and 4 days in we went to Petra. In the morning we walked for 5 km and i was already exhausted by then because it was like lot's of listenig and standing and climbing. In the afternoon we could choose between a hike up the mountain and 900 steps to the High place of sacrifice ooor the main road back. i chose the trail ( wrong decision) and when i was like in the middle of the trail going up, my leg started to block. luckly the to teachers were with the small group too where i walked the hike up and they also sensed something was wrong. when i got to the top i immediately crashed, body started shaking and i couldn’t walk anymore because my right leg was numb. been there for 5 days longer in Jordan in 2 hospitals, got lots of traumas and when i finally got home i needed to get to the hospital and layed there for another 3 weeks...i got the diagnose but nothing was answered more. how with my life, how cope with sypmtoms when they appear suddenly and lots of other questions.
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It sounds like there was so much going on at once and your brain was overloaded with neuron activity and decided to protect itself by not receiving any pain signals, hence the numbness. It also sounds like the traumas you have experienced being hospitalised haven't helped, adding stress and anxiety to the mix.
They relate it to software issues, so imagine a computer overload and it crashes. So the trick is effectively reprogram your brain and don't pay too much attention to your leg when it goes into spasms/numb (something the professionals sadly get people to do), which can make the symptoms worse.
A great technique is grounding, when your legs spasm, try and give external focus to feeling the floor/or carpet beneath you (you could add a different texture) sitting on the edge of the bed every 10 minutes or so and repeat it). The idea is to show your brain (not only tell it "CBT") its safe and show it positive action (in a safe environment) it will eventually get to believe you and let you take back control.
So its all about being kind to yourself, not getting anxious etc (easier than it sounds).
Take seizures for example, they advise if you feel you have one coming on (if you have any signs/not all do/others may notice) to take yourself to a safe space and let it wash over you (again takes practice) and then to continue what you were doing.
After a brief telephone call with our Neuro Psych, she said the brain learns repetitive behavious. So if it thinks its in danger it decides to act up and if we respond in a way that is less threatening to it, therefore it will continue to send the signals because it knows we will repeat our actions.
Take walking for example, when we walk its an automatic movement, we don't really think about it, its learned from an early age, kind of ingrained in us. So if you are struggling putting one foot in front of the other, in a safe environment, try walking backwards (this confuses the brain and lets you take control, PT's use this technique).
hey, thank you for this! it does give me more insight!
I have to say that i am in a state of confussion these days. i am starting to remember a lot of details now put there are like blank moments where i don't know how i got there or what had been said. also time awareness is gone, can't tell exactly what happened first and what next. They had tried 14 times to put an Iv in, in Jordan and last week i need some blood tests again...turned into a fight scene, i got so scared, panicked and just all went black. The doctors don't really teach me how to cope with certain symptoms and i strated to go back to school 2 days in a week. last week i suddenly felt so disconnected from my body started panicking and when i woke up i saw the teacher (who was with me on the study trip) holding me. she sat against the wall and i layed with my upper body against her (you get it) i didn’t know what happened and she told me the student next to me saw me shaking and then i fell of the chair. i try to live normal but my fears and Trauma are getting me and i wanna learn as much as i can but to be fair, nobody in my environment knows the disorder.
I think with trauma its best not to force yourself to remember everything and it will all become clear in time.
As for being scared for needles, its not surprising, so don't beat yourself up. If you have to have any done in future let them know in advance and they will probably give you a sedative beforehand.
As for Uni that sounded like a seizure, check out this article:
There was also a good resource for kids and adolescents that included a section on information to give to their school. Pretty sure you have to buy it now as the Hope charity gets a donation. I printed in out and shared it with my son when it was a free resource, so I will have a read through it and screenshot it, if I think would be useful.
I think it would be good for your teachers to put a plan in action, so you feel safe.
Hey! I’m sorry to hear about that experience— it must have been really overwhelming/scary.
I’m also a college student, and it definitely can be difficult to do normal college things while also dealing with health problems, but I’ve found strategies that help me out.
If your school offers a Student Accessibility Program, I would definitely look into registering with them. I was able to get accommodations that allow me to be late to classes, turn in work late if needed, and step out of the class at anytime.
I also find it’s really important for me to stay busy. If I’m busier with classes and friends, the less time I have to think about pain, numbness, shaking and fatigue. My symptoms tend to improve a lot while I’m occupied.
Lastly, don’t be afraid to put your body and your needs first. I sometimes have to turn down plans with friends in favor of resting, and although it’s frustrating, I feel better for it at the end of the day. If you think a mobility aid might help you, it’s definitely worth a try! I don’t use mine everyday, but on bad pain days, it really helps me out.
I hope this was helpful for you! Wishing you the best of luck, and please don’t hesitate to reach out if you need anything.
i figured that keeping me busy is what i used to do to run from like boredom, emotions and just overthinking in general. my psychologist says that keeping me busy was a mechanisme for my body to not deal with the stuff but since i have nightmares and flashbacks i am now said and told to come eye to eye with that. that leads to more symptoms. i now figured that hot baths help soothing pain in my knee. otherwise i am still trying to figure out how to deal with other symptoms
That makes a lot of sense! It’s great that you already have a psychologist who can help you out.
I’m glad that you figured out that hot baths help relieve some pain. As far as dealing with other symptoms, it may take some trial and error, which is frustrating, but you’ll eventually start figuring out things that will work for you. My best advice is: don’t be afraid to try out a whole bunch of solutions! It may be discouraging when one doesn’t work, but assembling a toolkit for your specific body/needs will be worth it.
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FND
New Here - Diagnosed FND - but only one leg
confused
New organic symptoms but lack of asses by neuro team due to past history 
