Help needed with letter to physio re. Ehlers Danlos Syndrome

[aseaandthreestars]

I need some help here. I'm trying to compose a letter to a physio I saw recently and I'm completely stuck. I think I'm getting a bit over-emotional and I need to figure out what I want to say and what I actually want.

The story. I've got Ehlers-Danlos Syndrome. One of the main symptoms is hypermobile joints, which leads to a load of musculo-skeletal problems. At the moment my knee has gone wrong and my sacro-illiac joint feels as if it's flapping around and is so loose I feel like I might actually fall apart.

My GP referred me to a local physio. At our first session she (the physio) said "you probably know more about Ehlers-Danlos than I do", at which point I should have just run (limped) away. She examined me and I stupidly let her pull my joints to their fullest extent. I spent the afternoon after this examination in shock (very cold, quiet and shaky) - this is fairly normal for EDS sufferers, but skilled physios know not to pull us about too much. I went back to her two weeks later and explained about the examiniation, she apologised and referred me to the Extended Scope Physio as they have a few more tools at their disposal.

Extended Scope chap sent me for an MRI to rule out damage to my knee. Then I had to go and see him for the results. Thankfully the results were clear (EDS means wound healing is pretty poor and rehabilitation takes ages). I asked what was next.

Him: You need to stay strong
Me: How?
Him: Go back to Physio you saw previously
Me: She put me into shock with her examination
Him: You should have stopped her
Me:

Too whiney?

(goes back to writing letter on my own)

Too whiney.

(goes back to writing letter on my own)

Too whiney?

(goes back to writing letter on my own)

(throws iPad away)

Hi
I think you need to have a phone around the other hospitals in your location, ask if they have a physio who is eaperienced in your condition, then pop and see your GP to get a referal there. I wouldn't go back to this physio, the HPC does clearly state that all healthcare professionals must work within their knowledge/skill and experience (not in these specific words but you get the idea). If she's already hyper-extended your bits then this really isn't working within her boundaries, you are fully entitled to make a complaint.

experienced doh! Hope this helps.

Sorry for your trauma, dont think I can help much, dont know anything about your symptoms, but....

could you request a second opinion? find out who is the best physio to see and request an appt (gather your nhs but they work both and if you look up bupa hospitals, clinics in your area etc, find a named physio who practises on(?) your condition and track them to your localest clinic).

Might not be what you wanted but if your mind is in a muddle sometimes any help is good, other than that I'll come with you and glar at physio if they hurt you!

Thanks Belle, that's a really useful point. He made me feel as if I was calling her unqualified, but putting it your way might just take the heat out of that issue.

Thanks Iwill, I'm looking into private physios, but I'm just making sure I've gone as far as I can down the NHS road. I am an NHS person and I do have a great belief in it. You're right, any help is welcome and ideas from other people are very useful. I do love the idea of having a guard-MNer. "Don't touch my knee!" "glare from corner"

Have you seen good physios before somewhere else? if you can't find anyone experienced locally, maybe you could get them to contact someone who has helped you before to put them on the right track rather than having them just experiment on you? have not heard of your syndrome, is it common enough that there should be a physio or two in your area who has worked with it before?

I've seen a very good physio, but she is now a lecturer and has other work to do. I have sent an email to see if she has advice.

I've seen various estimates of how common it is - anywhere between 1 in 5,000 to 1 in 10,000. Thinking about it, that's fairly rare. The physios have heard of it, but they don't seem to have the experience to deal with it.

I'm getting some really useful advice here and will tear up my first few drafts and start again.