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Re: Chronic Illness Support Squad

@Hozzles yeah that sounds like my doctors.

 

I've personally got functional neurological disorder, which gets worse when I'm stressed, which makes it very easy for people to dismiss it as just me being mentally ill even when I'm in so much pain I can't walk.

 

It was really worrying waiting for the MRI because my collection of symptoms matched something like a spinal tumor/ something else pressing on my spine, so I definitely get the concern...

 

Until you get a diagnosis, is there anything that helps with the symptoms?

Like one thing I've heard of is a cooling scarf, and I think you can get glove/ vest versions which might help manage the heat-related stuff.

Re: Chronic Illness Support Squad

@Hozzles that really sucks that nothing is apparently showing up... I mean, I was in a similar situation, but with nothing showing up on my tests meant that there was literally nothing wrong with me. The only abnormality I had with my CT scan, was my heart having a weird artery that causes abnormal heartbeats. But we figured that was okay, considering that my cardiologist wrote me off and said it was nothing to worry about.

Good news, I finally have a diagnosis to my fainting!

@Tiny_leaf I've got a form of FND as well! It's only dissociative seizures/syncope, but I'm pretty sure its a form of FND.
Its caused from not having an outlet of stress and emotional overload. I'm not surprised, because I bottle everything up, no matter what it is!

I have a snap towel, which I think is the same as a cooling scarf. You just wet it, with whatever temperature water, wring it out, then snap it/whip it, and place it on your neck or wherever needs cooling. But I could be wrong...

Re: Chronic Illness Support Squad

@xXLexi_Lou122Xx oh! Welcome to the club Smiley Tongue

 

Yeah if you're getting seizures and your brain is normal that's a form of FND.

I've had a couple of seizures from my FND too, they're not fun.

Normally with the syncope if they can't find a reason they normally assume it's vasovagal syncope apparently, I haven't heard of it in FND but that's useful to know!

Re: Chronic Illness Support Squad

Hey @Hozzles

 

I get how things can be very frustrating when test results don't come up with much when you feel your body is not functioning at it's full capacity.  Like @Tiny_leaf said finding a diagnosis can be a bit of a process.  I can imagine that you are exhausted and thinking that you might be making things up.  What's happening in your body must be a very real experience for or else you wouldn't be feeling so much pain.  When tests are being done they are testing for a specific thing and if the results come back ok, it just means that this particular thing that they are testing for is not the issue and the issue lies elsewhere.    

 

@xXLexi_Lou122Xxk, it's so great that you finally have a diagnosis and now you can see how it relates to your emotional experience and behaviours.  It sounds like this has offered you some relief and you can put some tools in place to support you in future.  

Re: Chronic Illness Support Squad

@Tiny_leaf thank you! Smiley Tongue

Yeah, they really aren't...
I thought that too, but on the fact sheet that I refer too as my diagnosis, it says that syncope/fainting can also happen. Its quite interesting, so I just add the syncope part on the end, so people know I mainly faint, rather than have seizures. Have you got any websites that might explore FND more? I'm very curious about all the different conditions and stuff... Smiley Tongue

@MaryRO yup! Its only taken 3 years and many referrals, but its a step in the right direction!

Re: Chronic Illness Support Squad

@Tiny_leaf  I'm so glad that thread was helpful! Not many people know about FND so there needs to be more awareness of it. We didn't even know what it was or what it meant when my sister was first diagnosed with it. I work in a hospital now and not one staff member seems to have heard of it.

@Hozzles  Waiting for a diagnosis can be so hard, especially when it's a diagnosis that is mainly reached by excluding other things or when tests don't show anything. At least in some cases, such as with FND, nothing being found can be a good thing because it could mean that there is a possibility that someone can get better rather than it being some kind of degenerative or progressive illness.
It's frustrating that you're not seeing the neurologist again in four months. Waiting times for specialists seem like they're ridiculously long at the moment. Smiley Sad But I hope that they will be able to provide a helpful interpretation of your scan and offer you a way forward.

@xXLexi_Lou122Xx  I've got syncope as well. We think in my case it is vasovagal in nature, although I'm just waiting for my GP to call any minute now so we can discuss my test results further. I had an ECG and Holter monitor, but I didn't have any events/episodes during them and the results were essentially normal. Luckily for me, there are some 'warning signs' that I'm about to faint and I can lie flat with my legs up which helps prevent me losing consciousness. And there are certain things that make it more likely to happen. My last episode was a few days ago and my family gave me some starchy foods and Hydralyte afterwards.
My sister's psychiatrist, who specialises in FND, wrote some helpful explanations of syncope in one of her books. My sister has dissociative seizures, but they're different from my fainting.

Re: Chronic Illness Support Squad

@xXLexi_Lou122Xx ah I forgot to respond! 

 

I can't think of any sorry...

But if you look up "FND Australia" there might be some good results there.