Hello I was diagnosed with fnd in june 2017, ive never heard of it before and don't know anyone who has it. My friendsand family don't understand and unfortunately a lot of themno longer speak to me because of my diagnosis. I'm really struggling to come to terms with it as one day I feel I'm getting better then the falling day I'm unable to move or fall over more. It would be nice to have someone else that understands what is happening to me.
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Kitty85
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The unpredictability is the hardest. It’s a rollercoaster of emotion and never a dull ride. Most days you just want to get off x
Hello Kity85;
I was diagnosed with FND in August last year shortly after spinal surgery on my L4 L5 disc area, it started off with a problem in my left leg then left arm/hand followed by a tremor. So went to see a neurologist who diagnosed me with FND and his words to me were you should make a good recovery over time. Since then it now affects all 4 limbs some morning I wake up and it takes me about 20 mins to get them to move by which time I’m completely knackered. Condition is getting worse and talking to other suffers they all say they don’t know anyone who has recovered from it.
I had my memory tested and I failed all questions regarding my short term memory.
Kitty 85,
I'm so sorry to hear that you are having a bad time of it. Being on this site means you are not alone. You can read my experiences with it on this site and I can categorically say that you can get better than you are now. MAYBE NOT Back EXACTLY TO WHERE YOU WAS BUT. A lot better.
Families and friends will never understand. The reason why I say that is this. They are not walking in your shoes and experience what you are feeling. What I would like you to do is this. Go into the following websites:
http:neurosymptoms.org
Even if you have seen them, point your nearest and dearest to them.
FND is as common as ME, MS, Parkinsons.... The list is endless. It is not something to be sniffed at. You have a real condition and those friends who have left you, weren't friends at all.
Have you attended rehabilitation programme? What is your Doctor doing? The problem unfortunately is cost re NHS and whether you want to do anything. Your comments leave me to think you do. Being positive is key. By seeing a proper specialist or being in a programme will give you strategies to cope and limit any of the symptoms. It will also enable your loved ones to understand it because they too have to attend and get involved.
If, like me, you've been left to deal with it then you - like me - will fail. Until I attended the course. I got ill in 2009.
Yes this week I've been naughty and not managing my energy properly so today, writing this in in my dressing gown, taking it easy and not being hard on myself for not achieving. I will make sure I do my exercises but only those sitting down. I will eat properly; I have a hormone that doesn't trigger that I need to eat and I will be positive that this is a blip.
Falling over : Frightening isn't it. I started falling over when I contracted a virus in my legs. In a London office and then in the street. Embarrassing or what! But I have an illness so why should I feel embarrassed? Since then I've fallen over a few times. The worst was when I felt as if I was going to fall down the stairs so I held onto the newal post in the hope it would steady me. I fell top to bottom. The pain in my arm, back and leg was excruciating. If I had done the programme after the virus maybe it wouldn't have happened because they give you strategies so if you feel as if you're going to fall, you use a distraction technique; the same with the Myoclonic jerks and NEAD.
If you need to offload, we're here for you but if you need specialist help then please go to your Doctor and get referred to the programme. I had an assessment April and attended August.
Keep in touch and let us know how you are - good or bad. Xx
