I'm new here, hope to meet others with similar non-typical symptoms

[VIC48]

My symptoms are tingling, including head and pressure in ears, temperature disturbance, especially feeling cold at night, sometimes feels like something pressing down on my head at night, not sure if gabapentin still helps, getting worried about brainfog. I mostly read about seizures and gait or vision disturbance. Worse at night or when not active, feet and calves can just burn. Was not too bad the first couple of years, now getting distressing. Even just exchanging experiences would help. Have had excellent care and every diagnostic test.

[tabey]

Dear vic48

Great to meer you i'm sorry your having a rough time.

I also suffer most of the things you have spoken about and i dread night times because of the pain cramps and heavy dull burning feelings i get im on gabapentin too which is working to a point but i find oramorph really helps to settle me down when my symtoms get to much only a small amount but it takes most of it away

Hope this helps in some way

Tabe

[VIC48 in reply to tabey]

Hi tabey, thanks very much for your reply, it really does help to connect with others, and I should be grateful that so far, my situation is not bad and I don't have other issues. You sure are on a powerful painkiller at time. Sometimes I think that even ibuprufin help. thanks again

[Willothewisp81]

Morning, I just wanted to say hi and also that I also suffer with similar symptoms as you.

I was diagnosed just before Covid hit and I had all the tests and despite disruption to the healthcare services during the pandemic I have recieved excellent care as I live in an area that has a good understanding of FND.

My main symptoms are tingling, nerve and joint pain, muscle spasms, severe photophobia, migraines, constant head pressure, intense tinitus, intermitent limb weakness, and chronic fatigue. Like you my symptoms appear (despite excellent care and following all the specialist advice) to be getting more frequent and more intense. I am not currently taking any medication as I have had reactions to all the medication I have been prescribed. I do find that swimming helps with my nerve, joint and muscle pain and guided relaxation helps when I want to rest but my sensory symptoms are running wild.

Over the last 2 years I feel like I have started to move from awareness of my condition to acceptance but by far the hardest thing I find to live with is the unpredictable nature of the condition. I am one of life's planners and it still really gets to me when I am having a good patch and then I get a big flair up and have to change my expectations of what I can manage.

Best wishes

[VIC48 in reply to Willothewisp81]

Hi Willothewisp81 thanks very much for reaching out and I guess I should be grateful that so far, my symptoms are not too bad and I should enjoy what I can.

[CRPSplus]

Hi there VIC48,

Never easy, our conditions. I've experienced similar and many hundreds (likely 1000's) more. I am generalised (whole body) and autonomic. Goes back a fair while and earlier it was mighty difficult.

Gabapentin: Obviously everybody's experiences are different, so I can only reflect on my own. At one point some years ago I was taking 2700mg of gabapentin per day. It did no good.

The most effective treatment for me was a highly effective pain management program, which for me, changed everything.

Best of luck & take care.

[panda1238]

Hey, I have tingling, and the head and pressure in ears thing. I never once thought the ear pressure was a fnd symptom but it sure is painful. I definitely also have brainfog, burning sensation. Among other symptoms, feeling faint, loss of appetite, gait disturbances, muscle spasms, paralysis, muscle weakness, stiffness. Prickling.