Doctors : Hi Im a newbie from Wales who... - Ehlers-Danlos Sup...

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Welshy2020 profile image
Welshy2020

Hi Im a newbie from Wales who has had to explain to every doctor Iv met with in the past 4 what hypermobility is. I'm finally on the list to see a physio and have been on the list for pain management for the past year. I was just wondering if anyone has any tips on getting in contact with a specialist. Iv been to see my GP multiple times but he just says I will have to do the research myself as there is no specialist in my area. Also any tips on dealing with subluxations and daily pain? Thanks in advance x

8 Replies

Hi,

I am sorry you have to keep telling your story. Many are trying to educate doctors, but it is taking a long time to get through to them all.

Do you know about the RCGP EDS toolkit? You might like to share that with your GP as that will help them to manage your case.

Physio is the usual way to support subluxions and even dealing with pain. There may individual physios that are experienced or even have it themselves, so it might be worth finding out if there is a local support group.

There are several videos on physio from the experts that are available on the internet. This is one of my favourites:

youtu.be/2LC-qUejV_A

Welshy2020 profile image
Welshy2020 in reply to cyberbarn

Thanks for the advice I will do some research about the toolkit and then get in contact with my gp.

Hi,

I find that my McTimeny chiropractor is the only way to get my subluxations fixed when they don’t pop back in themselves. If you can afford to see a chiropractor I can definitely recommend it.

Pilates is also great for core strength and building up the muscles you need to support your stretchiness. Lots of free classes on YouTube.

Might also be worth asking GP to refer you to a Rheumatologist to get some advice and help with your pain/joints.

Good luck.

Thanks for the advice, iv thought about a chiropractor but have read that it can be quite painful for people with hypermobility. Iv asked my gp to refer me to a rheumatologist but he never actually did it.

There are 2 types of chiropractors. The ones that manipulate you back into place - I tried that and I’m tooooo stretchy for that approach! It did nothing. I use a McTimoney chiropractor now and she’s great. The McTimoney method is gentler but definitely more effective.

The pain is no worse than I’m already dealing with with my subluxations and it definitely sorts things out .... depending on how badly everything is out of place it sometimes takes a few sessions for things to settle down ... especially after my hip subluxation earlier this year.

I would also phone GP surgery and chase up referral. Both my and my daughters Rheumatologist are big fans of chiropractors and Pilates!

Good luck.

Your gp should refer you to a rheumy, if you gp won't, it took the doctor years to refer me. For some reason that only she knew , she refused to accept my hypermobility problems. The rheumy will do the Beighton test to assess your hypermobility score. I have found many medical practitioners do not understand what hypermobility issues mean or what EDS is so you have to tell them that it is a connective tissue disorder. If you can find a physio who understands what hypermobility is the physio should advise you about getting a referral to a rheumy.

Welshy2020 profile image
Welshy2020 in reply to karmel

Thank you for the advice. The doctor that diagnosed me did the Beighton test but then said that I was young so it probably wouldn't effect me negatively. Frustratingly when I saw him I had sprained both ankles that morning so was already struggling with pain. I have asked my gp to refer me to a rheumatologist but he never actually did, just hoping physio will help somewhat.

Do you remember what your Beighton score was? Mine was 8. I don't know how old you are but I do know a lot of girls who bit puberty start having more hypermobility issues. I wouldn't think that you are ever too young to have a exercise program made to strengthen your legs, ankles and feet. You need to be doing a lot of balancing work on\off a wobble cushion to strengthen your ankles. Can you not get referred to an NHS physio or go private with a physio that understands what being hypermobile means.

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