TW: How to get diagnosed for hEDS
Hey all,
I've had a lot of struggles with chronic joint pain, subluxations and a dislocation, and a lot of other symptoms that line up with hEDS, and I was wondering if anyone had any tips to get getting diagnosed?
I'm extremely Hypermobile, 9/9 on the Beighton scale, and my knees have had multiple surgeries. Weirdly I think my elbows also start to randomly dislocate, as they lock up and become painful, even when I'm not doing anything.
It started 3 years ago, when I was 13/14, and has only gotten worse since then. During my knee appointments my mother has said 'They think they may have hEDS, but I don't think so' so the doctors I've seen have brushed it off and not taken it seriously
Comments
Hey @Planetary I only just saw your post, sorry for the late reply!
I hope you're doing well, chronic illness, and especially chronic pain, can be so gruelling and exhausting. I'm really thinking of you and sending lots of love your way while your dealing with this.
Seeking a diagnosis can be such a time-consuming process, which really sucks, especially when you're suffering so much in the meantime. I've currently got a provisional diagnosis for POTS, but it's taken forever to get even just to a provisional diagnosis. I originally tried to get a diagnosis about 3 years ago, and was told I didn't meet the criteria. I've been to a multitude of specialists since then, all of which suggested POTS, so much so that I finally sought a second opinion, and here we are, 3 years later, with a provisional diagnosis 🙄. My point is that I really empathise with what you're going through.
I don't have hEDS, but from what I hear, it sounds really rough. I actually had hEDS queried along the way by a couple specialists, as I hear it often co-occurs with POTS, but don't quote me on that! I believe there's a couple different types of specialists in different areas who can help with hEDS/EDS in general. I would absolutely have a good chat with your GP and seek a referral to someone who can help. A diagnosis is not the be all and end all, especially with treatment, but it can absolutely be a really useful tool for communicating what you're experiencing with people in your life/medical professionals/etc.
I'm so sorry to hear that you've been brushed off by medical professionals and your mum in the past, this must've been really hurtful, especially since it sounds like you're really struggling at the moment. I'm wondering if it would be possible for you to chat with your GP without your mum present, if that's something you'd feel comfortable doing? Or maybe it could be useful to have a proper chat with your mum about what you're going through, and that you'd really value her support with this. These types of conversations can be really awkward, and emotionally draining, so i'm thinking of you.
Please be gentle with yourself during this time, and know that you're not alone. We're all here to chat more if you need to vent some more 💗.
Hi @Planetary,
These struggles with joint pain sounds pretty harsh and I take it can be a little frustrating with insufficient answers to the questions you have about your joint health. The dislocations you experience seem to rough and the pain that comes with it is sad to hear. You say doctors haven't taken it seriously which is understandably annoying.
In terms of dealing with the pain, I have seen those elastic knee and elbow supporters that are available which apparently are designed to limit the range of motion of those joints, which might help limit or prevent those painful dislocations.
It sounds like getting a diagnosis for this health condition may help you answer some of your questions as I take it may be reassuring to find the reason for this joint pain. If you do get diagnosed with hEDS or possibly another similar diagnosis, will this feel a little more relieving? If so, I would love to hear your thoughts on how a diagnosis can help. I hope this helps 👋.
Hey @Planetary 
It's nice to hear from you again! I can hear that you've been struggling with chronic joint pain, subluxations and a dislocation which has been worsening for the past three years. I imagine this would've been quite scary and tough for you. I want to take a moment here to acknowledge your courage for reaching out and sharing what you're going through with the community. I also want to acknowledge your strength and resilience, trying to connect with professionals for support and a diagnosis. This can all be really tough for many young people, so you should be really proud of yourself!
I can hear that you've experienced multiple knee surgeries and during an appointment, your mother and doctors brushed off the potential of having hEDS. This would've been incredibly upsetting for you to hear and see the dismissal from both the doctor and your mother. With everything that you've experienced this can all be really difficult to manage, so I am wondering if you are seeing any mental health professionals for support? If you're interested in additional support, I encourage you to connect with Beyond Blue who offer free and confidential counselling via phone and webchat, 24/7. It can also be helpful to speak to others about what's going on for you, so I am wondering if you have spoken to any family or friends about what you're going through?
I can see that you're trying to understand how you might be able to be diagnosed with hEDS. I would encourage you to speak to your GP again about a diagnosis as they are able to refer you to specialists. It might also be helpful to connect with HealthDirect via phone or using their symptom checker. HealthDirect are able to provide you with advice and referrals around your symptoms. It's also really important to do some self-care when you're going through a difficult time, so I am wondering what you've been doing to take care of yourself? I also want to share this topic on Serious and Chronic Illness which has a number of articles explaining chronic pain with advice and tips that you might find helpful.
I also want to let you know that an email has been sent to check in with you offline, so please keep an eye out for that. I hope this helps and I look forward to hearing from you soon!
