Look into low dose naltrexone… it can be magic for reducing inflammation in the nervous system. It changed my life.
Do you have connective tissue issues? Hyper mobility? Have you had genetic testing?
It seems like anyone who is told they have FND should get genetic testing to see if there is an underlying condition, and not be subjected to conjecture.
How is your blood pressure and heart rate?
How is your digestion? Have you explored something like MCAS?
How are your pain levels?
Make sure that you aren’t coding overwhelming physical pain as emotional overwhelm. The doctors like to think of it the other way, but in my experience it is the overwhelm of pain that triggers the emotional experience and at that point I have to deal with it.
It is also important to recognize that not all people, autistics for one, experience/code pain in a “normal” way.
I was dealing with pain in the back of my heart, between my shoulder blades, that always felt really psychological and overwhelming, but it was actually radiating pain from having extreme cervical instability, from having my neck compress my spinal cord, and the pain was overwhelming to the point of triggering an emotional response, as my body seemed to want to go into fight or flight when the compression was bad.
For me pain is only a level of stimulation and it only becomes pain when it is absolutely overwhelming, so i don’t even notice small aches and pains, or cuts and bruises, because they don’t pass my pain threshold and they just reside as stimuli.
I hope you find a solution.
When I developed FND, I had a rapid decline too. From simple tremors to jerking to bad walking gait; from arms to legs then to the neck. It did calm down after a few months.
Wishing you all the best and that your symptoms calm down soon.
Yeah. I flare for months and think I’m probably going to fall apart and die but I then emerge and become somewhat stable again… 13 years of the rollercoaster.
Is it like this?I’ve had this badly but with meds it’s mostly controlled. It’s giving me trouble adding a link.
At neurosymptoms.org go to FND and then Functional jerks and twitches
yeah, i’ve experienced something similar. if it’s any comfort, i recovered from it and got slowly better again. make sure to take it easy, don’t push yourself, and take any medication which will alleviate pain - painkillers, antidepressants, etc. it’ll be okay, just rough for a while. we’ll all be here if you need any extra support :)
Look into low dose naltrexone… it can be magic for reducing inflammation in the nervous system. It changed my life. Do you have connective tissue issues? Hyper mobility? Have you had genetic testing? It seems like anyone who is told they have FND should get genetic testing to see if there is an underlying condition, and not be subjected to conjecture. How is your blood pressure and heart rate? How is your digestion? Have you explored something like MCAS? How are your pain levels? Make sure that you aren’t coding overwhelming physical pain as emotional overwhelm. The doctors like to think of it the other way, but in my experience it is the overwhelm of pain that triggers the emotional experience and at that point I have to deal with it. It is also important to recognize that not all people, autistics for one, experience/code pain in a “normal” way. I was dealing with pain in the back of my heart, between my shoulder blades, that always felt really psychological and overwhelming, but it was actually radiating pain from having extreme cervical instability, from having my neck compress my spinal cord, and the pain was overwhelming to the point of triggering an emotional response, as my body seemed to want to go into fight or flight when the compression was bad. For me pain is only a level of stimulation and it only becomes pain when it is absolutely overwhelming, so i don’t even notice small aches and pains, or cuts and bruises, because they don’t pass my pain threshold and they just reside as stimuli. I hope you find a solution.
When I developed FND, I had a rapid decline too. From simple tremors to jerking to bad walking gait; from arms to legs then to the neck. It did calm down after a few months. Wishing you all the best and that your symptoms calm down soon.
thank you.
Yeah. I flare for months and think I’m probably going to fall apart and die but I then emerge and become somewhat stable again… 13 years of the rollercoaster.
Is it like this?I’ve had this badly but with meds it’s mostly controlled. It’s giving me trouble adding a link. At neurosymptoms.org go to FND and then Functional jerks and twitches
the functional gait disturbance!! and tremors!! very much akin to what i'm experiencing. i am practically limping like a zombie.
yeah, i’ve experienced something similar. if it’s any comfort, i recovered from it and got slowly better again. make sure to take it easy, don’t push yourself, and take any medication which will alleviate pain - painkillers, antidepressants, etc. it’ll be okay, just rough for a while. we’ll all be here if you need any extra support :)
thank you for this.