HEDS/JHSD

KateNeeks
KateNeeks Community member Posts: 2 Listener
in Rare, invisible, and undiagnosed conditions

Hi everyone,

I am 44 and have always had joint hypermobility, often have subluxed joints etc. I was diagnosed with HEDS but it was changed to joint hypermobility spectrum disorder, because they aren't diagnosing HEDS anymore apparently.

Today I started to get a bad pain in my ankle, I looked at my foot and noticed it's fallen inwards, this is definitely new and I'm worrying about it 🙈 it's not subluxed, it's just like my angle/foot has fallen inwards....

IMG_20240915_192221_edit_1032182584324269.jpg

has as anyone experienced this?

Thank you :)

Comments

  • chiarieds
    chiarieds Community member Posts: 16,615 Championing

    Hi @KateNeeks - & welcome to the forum. As someone who has hEDS, all I can say is that the criteria for this & other joint hypermobility problems was changed somewhat in 2017, so it might be hEDS or Hypermobility Spectrum Disorder (HSD), but the hypermobile type of EDS can still be diagnosed. However, essentially whether hEDS or HSD, the treatment is just the same, as we're in the same boat.

    It might be that you've just partially pulled a ligament (sprained your ankle) & your ankle does look a tad swollen, but I think it's best you get your GP to have a look if your pain continues. Meanwhile, perhaps try some ice to try & help alleviate your pain (a small bag of frozen peas wrapped carefully in a towel & used for about 10 mins at any one time may help), but do still have a chat with your GP if this, & perhaps elevating your foot on a pillow/cushion occasionally throughout your day, doesn't help. It's always best to seek their advice.

    Kindly let us all know how you get on, & good to meet another with hypermobile joints 😊

  • KateNeeks
    KateNeeks Community member Posts: 2 Listener

    Hi, thanks for your reply :)

    It was in 2017 I got the diagnosis, in Sheffield. They thought I had vascular eds because I have had a fair few collapsed lungs and my blood vessels! Burst in my hand quite often, they did a biopsy and it came back negative. That's when they said it was HEDS, but weeks layer the letter I received said JHSD. I rang up and they said they are only diagnosing VEDS now so HEDS has changed to JHSD.... I didn't realise HEDS could still be diagnosed. But like you say, if the treatment is the same then it's not really an issue.

    Thank you for your advice, I strapped my foot/ankle up and can walk with less pain. It worried me because it's as if my arch has collapsed all of a sudden, my ankle is turning inwards, I will see the Dr in a few days if the pain continues.

    Thanks again, Kate :)

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