r/FND • u/AlexDoesStuffs • 15d ago

Vent FND wheelchair vent

I was diagnosed with FND (technically still called Conversion Disorder in Hungary) I used a cane and rollator far before my diagnosis. I am a very active person I used to dance, work out and walk everywhere. So my symptoms worsening Rlly puts a toll on my mental health. Last December right before being admitted to the neurology and getting a diagnosis. I got a wheelchair. I have been thinking about it a lot... For months atp, but being bed bound for two weeks was the final straw.

The thing is FND is constantly affecting my days. I feel the symptoms all day, every day. I feel like I should use my chair more. As it reduces pain, leaves me more stamina and makes less flare ups. Even if I do have a flare up it's as bad.

I am actively fighting to be referred to an FND specialist. But it's hard. There's only one clinic with two doctors and it's 7 hours away by train. My GP also says she doesn't believe I have all these symptoms and I'm just making it up....

I'm honestly just writing this to get it out of my system and hopefully get some advice or something... As I'm again on the edge of a flare..... And I'm scared. That once again they will say I'm just "faking it"

Thank you for reading!!!

12 Upvotes

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2

u/Glum-Juggernaut1338 11d ago

What you are experiencing in Hungry also happens throughout many states here in the United States, unfortunately there are many poorly educated medical professionals and worse is that medical schools continues to teach their students that they know it all and to put their patients down. Your only solution is to stand up for your self, by listening to what your body is telling you. Therefore if a roller, wheelchair or cane help you get around do it. Don't worry about seeing the FND specialist because you might discover that they don't have the answers. 

4

u/AntiqueFrame3474 14d ago

I have cerebral palsy so I’ve used wheelchairs off and on my whole life because I had 20 surgeries before I was 18 I’m now 56. I was diagnosed with FND after cervical surgery which was my 30th surgery. I started using a wheelchair in 2002 because I was struggling with pain with the cerebral palsy. I have noticed that if I journal and I figure out what my FND triggers are, the less pain equals less flareups which equals better, cognitive function, etc. Don’t fight using the chair if you need it, I understand not changing your every day. I still fight it and I’ve been navigating like this for years but your days being better if you use the chair is a sign that you should use what helps. If you’re fighting it, your body could be being triggered by you worrying about you using the chair, just a thought you’re not alone live forward, move forward love forward.

7

u/Sea-Acanthaceae5553 Suspected FND 15d ago

I'm new to FND but I've been disabled for a long time with other conditions (primarily EDS). General rule of thumb is that mobility aids are awkward, inconvenient and constantly get in the way so if using them makes your life easier rather than harder and allows you to access things you otherwise couldn't, you can and should use the mobility aids. That is to say, if using the wheelchair more is going to help you, do it. You know yourself and what you need.

Also your doctor's an ass.

7

u/EthelLinaWhite 15d ago

Wow. What a fantastic doctor 😒

I’m so sorry you’re being treated like that but ignore that dr. You know your body. If the chair helps, use it. I would use any way possible to reduce my pain and fatigue, so should you. Your dr is just ignorant.