Fnd

Honeybear_67
Honeybear_67 Community member Posts: 1 Listener
Hi, I have been told I have fnd, but they way I was told was " my mind is playing tricks on me " I have limited use in left arm leg, feel like they have had an injection to numb them, migraines, get confused and loose interest in things and can't find my words when I speak, and pain in joints and muscles  This started March this year. I am so frightened, no one seems to want to help, I'm have had just 3 sessions of physio but this seems to make things harder and I come out stressed and tearful.
I feel I have been left to get on with things. I'm crying everyday over it, don't know what to do. 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello there @Honeybear_67 I'm sorry to hear how distressed you're feeling, well done for reaching out. 

    Can I ask if you've got support around you, at home, or from friends and family nearby? Things must be hard if you feel you've been left without the support you need.

    I do know that FND Action is a UK charity which offers peer support, which I hope will be helpful for you.

    There's FND Hope too, where you can find specialist help and advice. 

    Have you spoken to your GP about how all this is making you feel? It might be worth chatting about your mental health support as well as physical support, as one can effect the other.

    Please ask if there's anything we've missed, and we'll do what we can to help :) 
  • BertieBot
    BertieBot Community member Posts: 7 Listener
    edited June 2023
    I read your post today and I’m sorry that you’re going through this. I also have FND. It started in March 2022 and I was diagnosed that July. Please know you’re not alone in suffering with this. It sucks and I also found few resources available in the medical world. Physio wasn’t for me when I tried it. I felt it added to the pressure I placed on myself thinking I should be able to ‘fix myself’ because there ‘wasn’t anything medically wrong’. I haven’t returned to where I was pre-diagnosis but I’m finally starting to feel positive about life and I have adapted to live with my symptoms. If I could have given myself advice 12 months ago I would have said firstly to listen to your own body. If it’s telling you to take it easy by aching then that’s what you need right now. The doctors can only give their advice. You know how your body and mind actually feel. Secondly, put your limited energy into adapting your life to make living with your symptoms more manageable. Maybe they’ll go away quickly, maybe they’ll get a little better over time, maybe you’ll have them long term. There’s so much uncertainty that adds to the stress but I promise you will be able to cope with it.