After a month of crazy weird neurological symptoms, several neurological exams, a million blood tests, an MRI, and a LP, I was recently told by my neurologist that nothing was physically wrong with me, and that I have FND. I’m finding this so difficult because I also have severe illness anxiety. This past month has been so traumatic, I’ve convinced myself I’ve had every neurological disease you could think of and lost my mind over it. So hysterical and certain I was going to deteriorate and die. I’m doing my best to accept this diagnosis of FND.
It feels like my symptoms fluctuate so often. I have this feeling of heaviness/tiredness sometimes shakiness that moves around (sometimes an arm or both, sometimes my legs). My right leg from the hip down never feels quite right no matter what I do. My pulse drives me bonkers as it feels so powerful, sometimes amplifying in different areas of my body, the usual being my right upper arm. I also have this electric sensation (it’s like a buzzing sensation with intermittent crawling and sharp shocks) that mostly stays waist down, but sometimes creeps to my upper body. I get random pains that come and go and I get little twitches and the occasional small jerks. And I don’t know if this is the pulsing or the twitching but if I sleep too long on my side, my shoulder will start doing this throbbing thing and wake me up, it seems to stop as soon as I roll onto my back or stomach. None of this makes any sense to me and I never know what to expect. I’m terrified and I don’t know how to manage this and how to improve my situation.
I just want to feel like I’m not alone. I don’t know how to go about recovery. I don’t have a support system and my GP doesn’t understand the condition. Can anyone give me some insight? Some treatment ideas? Tips? Some hope?
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Devvy
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Hi I’m sorry you’re feeling so awful at the moment. If it helps I was once told by a Neurology Professor to mentally throw everything I’d read or been told into a bin and start afresh. His advice on moving forward was to take my time learning how to deal with this and moving forward. Most importantly listen to what your body is telling you. Do what you can when you can, when movement or symptoms start getting worse stop! It’s a very scary place to be but most importantly remember you are not the only one feeling as you do and you are not alone. It’s okay to have emotions running wild I think we all probably have or still have. Don’t give yourself a hard time with how you feel it’s understandable. Your life’s been turned upside down and adjusting takes time.
Try and learn a new skill so you can see it’s something positive that’s come from a horrible experience xx
I recommend cognitive behavioral therapy to help you manage your symptoms and they teach you techniques to calm you down. Also you can try some physical therapy to help minimize twitching and jerks. Also try to distract yourself, watch some comedy, play some games online ,watch a movie. I even got a stuffed whale animal to cuddle with when I was having strong symptoms and I listen to thunderstorm sounds on my Alexa. Get mobility aids if you need them and just take it a day at a time. We know how unpredictable, weird and frustrating this disorder is and only those who suffer it can truly understand.
If you read about excessive glutamates they’re highly anxiety provoking as they are excitatory and we need gaba in the brain to oppose it to feel calm & relaxed. Have you sought help for anxiety? That would be the first step to getting some relief.
I did TMS (Transcranial magnetic stimulation) last year & it drastically reduced a lot of my symptoms (like constant muscle fascillations all over my body), reduced my anxiety drastically by doing right-sided stimulation. I sleep with a 15# weighted-blanket and that helps..when I feel unwell I go rest under it for comfort.
If this new research is correct, plant-based keto reduces glutamates in the brain. It’s how it helps epileptic children and Alzheimer’s prevention. I’ve been trying it for 6 weeks now and feel well enough to work part-time and still care for 3 kids. I know they’re are 2 other FND survivors using it successfully on this forum.
I do also take Valium 7.5mg to sleep because last year my FND & anxiety hit a whole new level. I couldn’t sleep for 7 months because at 3am nightly I would awake to shaking all over the bed, burning in my legs, and those muscle mis-firing. It helps me sleep.
Find what helps you manage this & it will be individual to you! You haven’t lost your sanity (because I thought that was me last year after FND of 11 years functioning well) I 2nd some form of counseling since it’s hard living with a chronic illness and accepting a “new” normal that isn’t what you had in mind. I see my CBT therapist 1 a month, it was weekly when things were bad in 2018. Good luck & know we’re here for you. ❤️
Hello my name is Dom and you’re not alone. I’ve had FND for a year diagnosed and two years in total. I am in a wheelchair as I cannot put my foot to the floor at all. I am in a Power chair because my hands are not able to self propel me due to pain. I go numb in my left chest periodically, and my stomach goes completely numb. I have bladder problems that mean I have to self catheterise. I am partially blind in one eye and cannot see colour very much in either. What I’ve learnt so far is that my nerves speak Swahili and my brain talks English. The two don’t really understand one another so the brain switches everything to loud because that’s what we do when we don’t know the language. There’s no single test for FND yet. My Neurologist since diagnosis doesn’t see me anymore and he said that “we just don’t have a scan yet that picks up what’s going on but something is definitely going on”. What I’ve personally discovered is that stress is an important factor. It’s an important factor with any illness. The more stressed you are the worse it is. Vitamin D is the other thing. A lack of vitamin D makes everything worse too. I don’t go out much. Over the time of my condition I found myself going out less and less. This meant I wasn’t getting natural vitamin D and in this country there’s only a few months when you really can providing you don’t screen it out with sun cream. I had a blood test and was put on Vitamin D. It made a huge difference as I began to feel better and as soon as you start to feel better, the stress recedes. Stress is only a factor not a cause. It exacerbates the condition. Worrying about it getting worse is always a battle. This is really important to understand, not worrying about it doesn’t make it better. You have absolutely no control over it. So don’t try. Take each day as it comes. Good days and bad days happen. Keep a mood log if it helps. Dom
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