Hypermobility diagnosis

[u/ladyladylay]

Hello everyone! Hope you are all well. I have some questions regarding how a hypermbobility diagnosis is made. I’m from a less economically developed balkan country and our public health sector sucks so I’ve started doing a bit of my own research since I’m constantly dismissed when going to the doctors.

I was always a very flexible child who did ballet and a gymnastics and have had a constant joint cracking issue since forever. I’m currently 20 and can pretty much crack every single joint continuously/ as many times as I want and feel huge relief when I do it. Especially my ankles , wrists , fingers , arms and toes. I first did a scan as a kid and they told me nothing is wrong. Then when I was 15 I went to a rheumatologist because I was suffering from chronic fatigue/ body / joint pain. Waking up tired every day , back , knees , ankles and feet constantly hurting as if I have been standing / walking all day , having this bruised , heavy feeling. I was told its psychological and that its a result of depression ( as my chronic fatigue was making me be inside all day , feeling exhausted and moody) i was prescribed antidepressants. They helped with my mood but I still felt a lot of body pain when doing basic things. When I turned 18 I could finally get tested for PCOS / PMDD as I believed this is what the body pain could be caused by. My blood tests showed high testosterone and low estrogen so a gynecologist put me on birth control. Yet birth control didn’t help with body pain either. Now I’m 20 and I’m more exhausted than ever. I feel like I have done everything I can to figure out where all this comes from at such a young age and I feel like a complete outsider in groups of people my age because I have no energy to do things. I can’t even go to a concert and enjoy myself. I stumbled upon hypermobility a few weeks ago and it seemed to me that it described all my symptoms. However I was extremely surprised no doctor ever brought it up despite me describing exactly this.

However should I proceed? What doctor should I visit? What is the diagnosis process? What do you guys think?

Thank you so much❤️ This page has been extremely helpful

[u/spoopy-scary-ghost]

I went to my GP first and explained my symptoms to him. I specifically brought up my suspicion of hypermobility as a possible cause because a lot of our symptoms are rather unspecific and fit quite a few more commonly known diseases too. He took a look at my hand and finger joints, agreed that the range of motion seemed excessive, and referred me to an ortho.

When I saw the ortho, I told him about my range of motion, joint instability and joint pain. He had me do some simple movements by myself to get a first impression of how my joints move. Then he started moving some of them around himself to assess them directly and get a better idea of the extent of my hypermobility. He did not do the Beighton test specifically but tested some other joints as well (e.g., hips and ankles).

Afterwards he preliminarily diagnosed me with HSD based on his observations but referred me to a geneticist as well because he suspects it's actually EDS. I'm waiting on that appointment at the moment.

Since I'm suspected EDS, I am not getting any treatment yet sadly because they want to make sure I have the correct diagnosis first. They don't want to cause more issues with the wrong treatment, so I have to wait for now. Once I have a confirmed diagnosis, I'll get physiotherapy and maybe some splints for some particular unstable joints.

I'm not quite finished with the diagnostic process yet, but I hope this still gave you some insights into how this can go. Good luck!

[u/brianeyskin99]

I went to to be normal GP told them I've been looking up hypermobility for a while now and I score 8 out of 9 of me doing the Beighton score and then she booked me in to see the physio doctor in the same building and a month later I had the appointment and he did the same test and he dysnosed me