I have noticed some people seem to have times without problems like months or years between a flare etc? I seem to attain new, stronger or more frequent symptoms and not particularly in or out of a flare... it just seems to gain intensity 😣🤔
Would love to know how it affects everyone differently...
I can go a few weeks without certain symptoms but very rarely symptom free. if I'm not having seizures, I'm extremely tired I slept all of February. For me what worked was finding my triggers and either eliminating them or avoiding them to begin with. For instance I don't sit out in the heat bc it can cause paralysis. I have felt that at times its progressive bc there is always something new popping up. Most recently it's been Parkinson like tremors.
Thanks for sharing x
Yes we do learn what to avoid that's for sure. One with this has to really listen to and know your body well! I have had one or two events where I haven't been able to move from my waist down, very scary!
I know with me it is progressive and yes some days are better/ worse than others.
Such a difficult thing to live with. Lately I've been getting more chest pain and my body is reacting to the heat so sleep is difficult even with the meds.
I'm doing my best to not let it get to me but it is hard to do 'normal' now... you know when you can still look and act like you were before... I can't but I do my best with the new normal?
My hands have had tremors for probably 5-6 years but I do now have internal ones and my right arm is joining in and my head shakes a bit. Fasciculations, muscle cramps etc are becoming life.
I have had my brow droop this past year and have some cognitive things like processing information takes a bit longer sometimes.
I'm glad to have found this group. We're all in the same boat and it's nice to know we can share (vent etc) and support one another.
Thanks for taking the time to share. Xx I appreciate it 🌻
Meditation really helped. I would find a quick 5 minutes energy balance meditation on YouTube when I'm in a flare and it helped of course temporary, but when you're flaring any relief is good. Benadryl also helped early on to decrease intensity.
Hi, I was diagnosed with FND in September (my symptoms started end July) and your experience is rather like mine in that the symptoms have intensified. My problems are primarily sensory and my hands and feet and face are particularly badly affected. The involuntary movements have got better and a spasm in my chest has gone and I don't get burning in my fingers anymore (I get other sensations now but at least I can work again - I was off work for a couple of months) but I have noticed the symptoms intensifying. I am having some nerve conduction studies done on Monday because I'm not convinced about it all yet, particularly where my uncle is a neurologist in Austria and they deal with things very differently there. For example I would have been admitted as an inpatient and had neurophysiological tests done at the very start. My GP sent me off to see a rheumatologist and of course they couldn't help. My GP and none of the GPs in my surgery have come across FND apparently. My symptoms are very sumilar to neuropathy although there are numerous types. Testing is quite difficult. Are you seeing a consultant? I saw mine twice privately and got a second opinion from another neurologist privately and have now been referred under the NHS to my first consultant who at my request has agreed to the nerve conduction studies. I hope my consultant is right but he's adamant, having seen me twice and had about 5 telephone conversations with me, that I have FND and says it will "definitely get better". I hope this is useful for you and that he is right, of course.
Olivia
Thank you Olivia. The nureo I saw was good, he was curious about my weakness and shaking and did a blood test for something. I hope we get to the bottom of this. Best of luck, chat wheneveryou like 🌻
Hi, yes we all have different symptoms. I used to have really bad days with FND. Days not able to walk, chest pains, headache, and very bad pin's and needles in hands and feet. I had lots of tests, it took about 7 years for my final diagnosis, was told I had hemiplegic migraines, and changed tablets 3 times. Then went to hospital for 2 days, which ended up being over 2 weeks. I've seen 5 neurologists, all stumped.
I found 1 trigger garlic, so symptoms died down and was referred to another neurologist who said I had FND after a few tests and questions and just gave me this website and was told I should get better now.
I am better little more mobile, only by cutting triggers out, reducing my hours, I also have symptoms of fibromyalgia, in pain most days but just got used to it. I have also had a anaphylactic reaction to nut's which is new to me. So my symptoms have changed. I have gone through load's of shoes, because of my feet sweats. Which I still get, just keep rotating my shoes.
Hope I haven't bored you and good luck.
Colin
Sorry to hear. Garlic, that's a funny one...
It seems we all have similarities but different. It's a weird one. Wish it would end.
Thanks again for sharing it is nice to know we're not alone.
hi Angel
I have had this condition for over 7 years and I am worse now than ever before I have tremors which feel like powerful shocks that emanate from what feels like where my spine connects to my brain my right hand is becoming difficult to use my right wrist seems to become stiff making my hand go into a claw shape the dizziness can be so severe that I cannot get of the floor. I seem to suffer with all these symptoms all the time.
Dave
I'm sorry to hear that Dave. Thanks for sharing. I understand completely, it's rotten.
The dizziness can really make one feel derailed. Do you get migranes as well?
Keep focusing on good things Dave, don't left this thing beat you down. 👌
FND
FND
Misdiagnosed with FND 
Muscle spasticity and FND
Inflammation with FND this is not psychological
