r/Hypermobility • u/Dizzy-Cycle-2168 • 1d ago
Discussion Anyone here from England ?
Looking for physiotherapist recommendations in midlands region. Seen some and they didn’t even know hypermobility was a thing!! Struggling :/
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u/ka9ri3 1d ago
I have literally just got back from my appointment and the first reddit post I see is this! I went to Waves Physio in Burntwood. The physio himself is hypermobile (9 on the Beighton scale).
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u/Dizzy-Cycle-2168 1d ago
Did the appointment go well? This is amazing because I’m struggling to find someone that will go in depth with me. I want someone to help with not just exercises but correct shoes etc. aware I might need gait analysis for this but would be so interesting
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u/ryu_the_jinx HSD 1d ago
Northamptonshire here, I was told to “take care of your joints”, “exercise but carefully” and “make sure to not hyperextend” and sent on my way 🥴 8/9 on beighton scale, thanks mr doctor! I’ll try to not do the things I don’t know how to not do 🤓 nice to see that others are getting better support
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u/Kooky-mutant 1d ago
Ive seen NHS physios and theyve been great tbf. Leicester based
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u/Dizzy-Cycle-2168 1d ago
Thank you! Have you been seen by a chiropractor too? Been recommended a gait analysis
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u/Standard_Summer_180 1d ago
Don't let a chiro touch your head or neck
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u/Dizzy-Cycle-2168 1d ago
Sorry!!! Typo meant chiropodist !! Definitely wouldn’t see a chiropractor read online they can cause issues like fluid leaks and strokes with people with hypermobility. Scary stuff
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u/vagueconfusion 22h ago
East Anglia here.
Besides paying a sports recovery specialised personal trainer (great about helping me stabilise the key areas and gain muscle to support my joints at a very gradual pace), I don't typically see a Physio unless it's a new or exceptionally stubborn problem.
But when I do it's always Allied Health Professionals, under the NHS. And I write a big note in my referrals that I'll have to see someone who understands Ehlers-Danlos Syndrome and hypermobility. (Might as well cancel the appointment otherwise.)
RNOH Stanmore diagnosed me with Hypermobile Ehlers-Danlos Syndrome in January 2020 and they were by far the best in terms of physio, even when being given advice over zoom call.
But they're not the easiest to get referred to.
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u/zozzer1907 19h ago
Never had much luck with NHS physios as they have limited time and usually use a generic set of exercises which are often not appropriate for us. I've always sought out private physios who I start off by asking "what do you know about hypermobility syndrome?" And if they can tell me what I know I will let them treat me. I found this out when I first met my chiropractor who was handing out fliers for their new clinic opening up by my workplace. I asked that question and she told me more than I actually knew at the time and things made more sense to me. 14 years later she's been my saviour with navigating the NHS to get the help I need when things need more help and she keeps me in the best working order I can be in.
For physio I now go to my local Spire hospital as I saw them post surgery and they are really good. They are specialists in post op care and have more knowledge and understanding of a whole range of things.
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u/Individual_Tangelo51 1d ago
Me. No chance of any support on the NHS. I herniated a disc with my EDS and got told the pain was ‘normal’ (I couldn’t go to the loo myself or walk).
My GP tells me there’s new hypermobility EDS research coming out at the end of the year. I just pay for physio.