Anyone else with a similar experience?

Swiftie00
Swiftie00 Online Community Member Posts: 4 Listener
in Start here and say hello!

Hey everyone

Sorry, this is a long post.

I was diagnosed with conversion disorder (which I recently found out is a wrongly used term for FND- correct me if I'm wrong though) more than 10 years ago now. Symptoms I experienced back then, I lost my vision for a while, I became unable to mobilise, I think I had brief experiences of speech loss and I remember at one point I couldn't hear or see and my parents had to write on my hand so I could feel what they were saying.

Once diagnosed I got admitted to an adolescent mental health unit but within days my mobility came back. I have had brief episodes of losing my mobility but it has only been for a few hours up until recently. And I've had episodes of losing the ability to speak but I have always thought that I was just experiencing verbal shutdowns (I'm autistic) which it partly could be but I feel like it could also be FND.

Anyways I was in and out of mental health hospitals due to various reasons and fast forward to about 14 years later (I think, I'm not entirely sure of the timeline) and I was living alone with support workers coming in to see me for an hour a day and would be available to me to message throughout the day. I had been living there for a year with no severe symptoms when one day my mobility stopped working and my speech went. They both went for 3 weeks and since then my mobility and speech have been coming and going, this started in January this year.

I also experience fatigue and pain sometimes too and since yesterday afternoon I have felt like my body is attacking me and I've been extremely tired and my body is hurting and I think my symptoms are flaring up basically. And since yesterday morning my speech has gone. I have been struggling with my mental health recently and I don't know if it's the same for anyone else but my mental health and my FND are very strongly linked. And I feel horrible and I just would like to know if anyone's experienced similar things and/or can offer advice please. Cos if I'm honest I'm really not ok.

Anyways, if you read all of this post thank you so much. I appreciate you. Also, remember you're all amazing!

Xx

Comments

  • Mary_Scope
    Mary_Scope Posts: 4,210 Scope Online Community Children and Family Specialists

    Hi @Swiftie00 and a warm welcome to the community from me!

    Thank you for telling us a little about your situation. It sounds like you have been through a lot.

    I don't have FND but I do have a disability that can cause flare ups and pain at times and I've found it really helpful to try and work out what my triggers are, whether it is physical or mental/emotional.

    I can also relate with what you said because if I'm not in the right headspace or looking after my mental health like I know i should be, then it is harder to do the physical things that keep my pain at its "normal" levels like exercise or making sure I'm eating healthy and fresh food that often takes a while to prepare. It can be feel like a vicious circle!

    Have you found anything that helps your pain levels when you are in a flare up? Or do you have a support network around you that can help when you are in a flare up?

    We're also going to send you an email shortly so please keep an eye out for it

  • Swiftie00
    Swiftie00 Online Community Member Posts: 4 Listener

    Hi @Mary_Scope

    Aw thank you :)

    No worries at all. And yeah, but we've all been through stuff. Different stuff yes but stuff all the same.

    Ok, thanks for letting me know that. I find it hard to identify triggers a lot of the time regarding my mental health and autism so I think trying to identify what triggers my flare ups etc is going to be difficult but I am trying to identify. Like I realised in the past few days I've been out a few times (though I used my wheelchair to save energy and so my legs and me generally don't get too tired) and I've always needed to not do too much activities etc for various reasons so I think that could be one of the reasons for my flare up.

    Oh I'm glad you relate! Well, I'm not glad because it totally sucks but at the same time I'm glad I'm not the only one who has links between their mental health and physical health.

    My pain isn't my main issue currently, like I'm in pain but it's manageable. And I got prescribed a strong pain relief which sometimes takes the edge off but only for a few hours.

    I do have a support network around me but I think FND is new to them and because I hadn't experienced symptoms badly for so long no one knew I had it so I don't think people really know how to support me with my symptoms except when I need it I have help with personal care and walking etc. (I am currently in a residential home with 24/7 support staff)

  • Swiftie00
    Swiftie00 Online Community Member Posts: 4 Listener

    Also can I just say sorry, I didn't mean to post this in the category where people introduce themselves and say hello. :(

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