Formal diagnosis- worth it?

[Buffstera]

Hi, I’ve just spoken to doctor and she says it sounds like my joint pain is related to hyper mobility. She suggested things I’m already doing (stability and strengthening exercises) but has agreed to examine me in person later this week. What should I ask and is it worth pushing for a specialist consultation or diagnosis if there’s no real treatment anyway for hEDS?

[RiversideVer]

I have lots of the symptoms of joint hypermobility syndrome (I think the name for it has changed recently) but I haven’t had a formal diagnosis. Some people find it important to have one of especially if they have some of the more serious effects. For me seeing a physiotherapist who is familiar with hypermobility is the most important thing, as is learning how to protect my joints and exercise safely. Hope that helps!

[Buffstera in reply to RiversideVer]

Thank you! Yes, I think I’m doing the right things now but like others have said, it’s future proofing!

[Ocilac]

I have had a diagnosis of hEDS about 9 years ago, after years of joint pains and dislocations. The diagnosis didn't change much for me at all, very few healthcare providers I have encountered have known about the syndrome.It has however somewhat helped finding more people that were similar to me and at times benefiting from their experience with the illness.

Also things have changed a lot over the years and hEDS has gained much more visibility. As far as I know there is no treatment yet, but the exercises and advice I have been given from physios have at time been different, and at some point there may be new treatments being discovered, which you perhaps would find easier to know about if you had a diagnosis.

As for what you should ask, I would ask if there are any medications that could be useful when your joint pain is very bad, whether or not you need different exercises or lifestyle changes. I found seeing an occupational therapist somewhat helpful although I think that depends on who you find. Perhaps ask what aids and devices could make your life easier and remove stress from the joint at times when they are giving you the most trouble.

Ask if there are any other specialists you should see if you, like me, experience any of the other common symptoms, such as irritable bowel syndrome, headaches, etc.

And ask about your prospects and prognosis, which may vary depending on the severity of your hypermobility.

In case you unfortunately get injury or disability from your hEDS, the diagnosis will be helpful in getting benefits and other help in place.

I hope this has helped. Best of luck

[Buffstera in reply to Ocilac]

It really has helped, thank you

[cyberbarn]

I didn't bother getting a formal diagnosis for a long time. My son was diagnosed formally which was good, it protected us from the system.

But eventually as I got older I had physios denying there was anything wrong because I had 'good range of movement' and in the same breath telling me I am not hypermobile, what makes me think I have EDS. No matter how often i told them I used to be hypermobile but had stiffened up, and that people with hyperoblity often have their other diagnosis missed, such as arthritis, because the range of movement might look 'normal' which for a hypermobile person isn't, they wouldn't listen.

Also, as a women and getting older, it gets harder to get support from other services. You just get 'well, you are old, what you do expect' or 'its menopause, go and see a psychiatrist or counsellor'.

So I asked my GP to use the RCGP toolkit. The GP refused. So I ended up with a rheumatologist that assumed it was just 'fibro' without even taking me through the criteria or listening to me. That made the encounters even worse with the physios.

He did finally put EDS in my notes, but I had to make a formal complaint about him to get him to remove the incorrect diagnosis of fibro.

I have a new rheumy and she did the 'there's nothing wrong with you, you have good range of movement' but when I pointed out to her that the test she did on my back doesn't work for those with hypermobility she did concede. And I now have two physios that believe me, only because one is private and a lecturer in physio at a university, and the other is an advanced practice NHS physio, so while they don't know a lot about EDS, they are better trained.

So if you can get a diagnoses now, it might serve you well in the future. It might not make a physical difference now, but it could help get more appropriate services. And in the future, things hopefully will change for the better for us.

[Buffstera in reply to cyberbarn]

I’m so sorry you had to go through all that. Thank you for sharing and yes, that makes complete sense - diagnose to prep for future. Best of luck managing your condition ❤️

[Unicornico]

Hi, I have been suffering for years and diagnosed with fibro 10 years ago. A Rheumatologist agreed it was EDS and referred me to RONH Stanmore. I waited years but last week got my appointment and wow!!! A proper diagnosis has made the world of difference to me. I am now on the waiting list for their residential EDS rehab and feeling so hopeful. For me diagnosis is sooo important. I asked about the fibro and was told once EDS is bad, likely fibro is a comorbid diagnosis as its a general pain feature that will happen once your joints are that way. Get reffered to Stanmore and let the real experts help you if you need it.