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Re: TW confused and feeling generally terrible

@Jess1-RO I just need them to make a phone call/ email requesting a meeting, and then come with me to the meeting.

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Re: TW confused and feeling generally terrible

My physiotherapist, in his effort to help me manage my hypermobility, forgot that i also have FND.

Now my leg's getting really sore and the muscles keep getting painful spasms.

Like it's great that exercise won't cause structural harm. But a lot of my pain isn't structural and my weakness is by and large because of my pain stopping me from walking rather than the other way around.

But because he's a freaking genius he's convinced that my pain levels are irrelevant and has put me crying in a corner down to a low motivation day rather than a high pain day where he pushed me anyway despite me trying to explain that I couldn't. 😣

I fucking hope no one expects me to walk tomorrow because rn I don't feel able to even drag myself to the toilet

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Re: TW confused and feeling generally terrible

Hey @Tiny_leaf, I hope your feeling better. I can't even begin to imagine how you must feel, the pain, stress and just everything must be alot for you at the moment. Just take the time you need to rest and feel fully restored 🙂

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Re: TW confused and feeling generally terrible

Thank you @Pasta Smiley Happy

How are you going?

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Re: TW confused and feeling generally terrible

Morning @Tiny_leaf 

 

I hope the spasms have calmed down, I'm sorry to hear that you were pushed on a day that you're in so much pain already. How are you feeling today? Heart 

 

 

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Re: TW confused and feeling generally terrible

@Bre-RO pretty bad Smiley Sad

I wasn't feeling safe so I had to ask dad to leave work early for me...

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Re: TW confused and feeling generally terrible

Hey @Tiny_leaf

Just wanted to check in with how you're going at the moment, how has your night been?

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Re: TW confused and feeling generally terrible

@Andrea-RO pretty bad still...

My legs hurt and I'm in a pretty bad mood.

I've been trying to contact a helpline for the past few days but no one's been available. 

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Re: TW confused and feeling generally terrible

Morning @Tiny_leaf 

 

I'm sorry to hear last night was tough. Did your dad end up coming home? I hope that made you feel better/safe. 

 

It's so so frustrating when you're desperately trying to get support and no one is available. Is there anyone in your life that would be there for you in those times? 

 

How are you feeling today? Heart We're thinking of you. 

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Re: TW confused and feeling generally terrible

@Tiny_leaf  I'm so sorry that the physio session left you in worse pain. Smiley Sad I hope you can feel better. Heart
What we have learned with my sister is that sudden increases in pain and physios attempting completely new things that she hasn't done before without explaining them to her worsen her FND. She had a dodgy physio session last week where they tried to get her to crawl, which made her very distressed, and since then, she has started having seizures involving her head, face, eyes and throat. Smiley Mad
We had to have a chat with her team about it. Apparently, unexpected things in physio can lead to more pain and anxiety, which leads to more sensitisation and more symptoms. So, it can be really difficult to find the balance between treating the existing symptoms and not triggering new ones.


Do you have any other physios who can provide an opinion about the kinds of exercises the physio is doing? My sister's in-home physio wasn't happy with what they did, which we relayed to the hospital physios.
We also found it helpful to set some ground rules for the physio sessions going forward. We told the physios that they have to explain everything that they are doing because her body does not cope well with shock or surprise. She can't do activities well outside of her pain tolerance. It could also be helpful to ask them to scale back the intensity of the exercises until you feel better.