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Re: Functional Neurological Disorder Awareness

We had another meeting with the hospital today. The hospital believes that stress may make my sister's condition worse. So we are trying to stay optimistic and not argue in front of her. I think this is good advice for anyone supporting someone with FND. She knows that I've been pretty pessimistic regarding the delays and it doesn't help that nothing much is being done for her. However, next week she is being seen by a specialist at the hospital and some professionals from the hospital are coming to see her every few weeks at home so that we can at least have some support.

It must hurt so much to walk @Tiny_leaf! Five out of ten can still be very annoying. My chronic pain never went above a six or seven out of ten, but it was still frustrating to not be able to do everyday activities for long periods of time. My sister says she wishes she could go back to pain that was five or six out of ten. Sometimes hers is ten out of ten. She has been crying all weekend because she just wants to be normal even if she has a bit of pain. It makes me really anxious when she gets upset but we do our best to distract her and help her calm down. I went to the movies on the long weekend but it was hard not to worry about her and just enjoy the movie.

One good thing about FND is that the symptoms can potentially be reversed, unlike a lot of other problems. So I'm hopeful that she'll eventually get better.

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Re: Functional Neurological Disorder Awareness

@WheresMySquishy I hope it all works out! And yeah, stress can make that kind of pain worse, and also make the pain harder to deal with, which kinda sucks.
That sounds really difficult...

And it does hurt, but I finally have a cane!! 😃! It's already helping heaps, because I can put less pressure on my worse leg without out over-using my better one as much.
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Re: Functional Neurological Disorder Awareness

@Tiny_leafthanks for the kind words. I really hope it all works out too!

I'm glad that the cane is helping you! My sister found crutches useful. She was on them before and after her surgery. Before her symptoms started, my sister was able to walk 150 metres without crutches but used them at school. They really helped prevent her from falling such as when she was going up and down stairs. She was going to go down to using one crutch with the help of her physio when she got FND and CRPS. It was crazy to see how much she got worse in a short space of time. I knew something was wrong when they stopped helping her. She still uses them to stand but she can't walk with them. I'm hoping that she will be able to put weight on her more affected leg and at least be able to walk with crutches again after her hospital admission. Smiley Happy Right now, she has to rely on her other leg, which is also affected by the FND and CRPS, to stand. Putting all her weight on it makes it even more sore.

Re: Functional Neurological Disorder Awareness

There was a report trying to raise awareness about functional neurological disorder on ABC's 7:30 today.
There was nothing much in the way of treatment, just explaining the disorder and showing patients' stories.
Here is the link if anyone is interested. Smiley Happy

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Re: Functional Neurological Disorder Awareness

@WheresMySquishy that's pretty cool!

Hopefully it'll also empower people who keep getting told that nothing is wrong/ it's all in their head.