Struggling with new diagnosis and the... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Struggling with new diagnosis and the debilitating symptoms I have!

Graf67
Graf67

Hello all, I have recently been diagnosed with FMD. I have uncontrollable jerking in my legs, I am unable to walk without assistance. On a really bad day it incorporates my entire body which is really scary and causes me to panic.

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Hi Graf67,

My heart goes out to you, as your symptoms sounds very similar to those that I have / had. It can be very scary, and also very hard to see where things will lead. However, if someone has told me at point of diagnosis that I would be able to do what I can now (walk very short distances unaided, cook etc), I don't think I'd have believed them. The important things are not too give up - some days will be much harder, some much easier - and not to let negative experiences bother you. Small achievements are as important as larger ones - the day I controlled the tremor in my hands enough to be able to colour something in showed me the way forward for myself! Thinking of you.

Hi Graf67, Bluecat is right. At first the fear and anxiety tend to block any thought of an improvement. Firstly I am sure you doubt the diagnosis, this is very common and we often blame ourselves because nothing or very little appears on any tests. So "it must be in your head", well it is not and FND is a nasty REAL condition. Accept the diagnoses and try to relax a liitle. Easy to say but not so easy to do.

Secondly, do not expect too much of yourself, it takes time, as Blucat says set small goals and I mean small, things that may only take a short time to do and are not stressful. Personally I was held back from making recovery by doing the Boom and Bust approach. Thinking I was feeling a bit better some days I would try to cram as much in as I could which crashed me into bed for days. This knocked my confidence, so just a little at a time.

Third, don't be afraid to talk about it. People need to undestand this condition better and by doing so not only do you increase awareness but you are letting others know what help you need, be it from family or support services. You have already made a start by joining this forum.

Fourth, and I will leave it at this, try to do simple exercises to keep the strength in yourlimbs. Simple movements while sitting in a chair. Sounds crazy I know but I found it helped to releave some of the built up tension and also gives the brain to find new more stable pathways and help with the body function. It's like a stroke patient gowing through rehab, the body has to relearn stuff again.

I have no doubt you will improve with support and understanding but it will take time.

Take Care, Bye for now

Hello. I have similar symptoms which extend to my arms. I was originally prescribed methocarbimol (muscle relaxant), then more recently baclofen which has helped greatly. Hope this helps.

Methocarbimol....apologies for typing/spelling

Goodness. Methocarbamol. Painfull!

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