Can someone please point me to an hEDS specialist

[Tired_glitter]

Hi, first time I have tried something like this I have been diagnosed with hEDS for the past 7 years (13), I am 20 now and the orthopaedic doctor told me it would calm down after puberty had finished. For the last 4 years I have been constantly in and out of hospital with dislocations. I have tried everything like physio bands and hydrotherapy, chiropractors to acupuncture... I am starting to get severe back and joint pain everyday and everyone around me doesn’t seem to under stand or as a consultant put it ‘it’s all in my head it’s not even real’ I’m really unsure of where to turn. Thanks

[Littlenestofvipers]

Hi, sorry to hear about your struggles, I can definitely relate and was dismissed by many doctors for years. Whereabouts are you based? I got my diagnosis last year from a fantastic consultant in Cambridge

[Tired_glitter in reply to Littlenestofvipers]

I’m based in Cannock near Walsall, I have been diagnosed but it’s the constant trips to the hospital for dislocated/locked joints and I’m at the point where I don’t know what else to try

[Littlenestofvipers in reply to Tired_glitter]

The consultant I saw was able to refer me to a specialist Ehlers Danlos physio (the only one in my county!) and he is brilliant. Got my collarbone to go back after almost 6 months out and I’ve hardly had problems with it since. The consultants name was Cathy Speed, maybe you could write to her and see if she knows any specialist physios in your area too. Worth a shot! X

[Steenygirl1 in reply to Tired_glitter]

Hi, sounds dreadful. Do you or have you ever had physiotherapy? Becauae our ligaments don't hold our joints in place as they should, our muscles need to do the extra work to keep everything in place - which can make them become tight, sore and tire easily. However it does make a lot of difference in helping to keep everything in place. unfortunately, physiotherapy on the nhs is woeful and much worse than when i was younger, it can vary from place to place. I live in the midlands too but don't know how it is in your area. I suggest you ask your GP for a referral anyway. If at all possible you could phone around the private physios in your area to find one with experience with hypermobile joints. They really are surprisingly affordable. They will give you exercises and even write letters to GP if they feel you need further action. Also bring it up whenever you are in a&e they could write to your GP if you need orthopaedic referral. That consultant who said it was in your head clearly doesn't know what he is talking about and you need a second opinion which you are entitled to. It's all i can suggest, sorry but keep plugging away. I know it is diaheartening and takes energy you don't have but this is your health and it won't get better without help. Can any family member or close friend be with you when you are trying to fight your corner? Good luck

[Tired_glitter in reply to Steenygirl1]

Hi sweet, unfortunately yes I’ve done physio and hydrotherapy and even private chiropractors. I walk at least every 2 days, I am always on the go I still do routines exercises and muscle strengthening but the ‘flares’ are really bad I have had many referrals but after having countless amount of orthopaedic doctors tell me I will never work a day in my life and I will be fully wheelchair bound by the time I’m 45 just make me not trust many consultants anymore,... as bad as it sounds I feel as if I’m living my life by a timeline that is already planned out for me. As usual you get the you can’t do this you must do that and it’s just hard not knowing which way to go

[Myflexiblefriend]

We attended the EDS Convention in Nashville Tennessee last summer and heard so many wonderful experts finally shed light on the whole range of medical issues my daughter experiences with hEDS and POTS. You can watch many of these presentations on the Ehlers Danlos Society website and that will give you an idea of who to contact for help. Many of the physicians practice in the UK so hopefully you can see one of them. I am so sorry you've had a long road without real help. Doctors being dismissive of symptoms and ignorant of what is causing them is a dreadful and demoralizing aspect of living with these chronic issues. My daughter and I have learned we can't take a medical professional's ignorance to heart - please just keep looking for help - it's hard to find but its out there! Very best wishes 💖💖💖

[Myflexiblefriend]

PS re Nashville Convention the presentation by Dr. Helen Cohen (who practices in London) on how to handle Subluxes and Dislocations was really helpful to us! You can find her presentation on the EDS Society site or on You Tube. She might be a good place to start.

[Tired_glitter in reply to Myflexiblefriend]

Thankyou 💝