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Hypermobility/EDS question

Apr 28, 2016 5:12 AM

So like, I have this problem with my knuckles getting "stuck". I was just wondering if anyone else had this problem?

When I try to pop them they feel like they stick, then when they do pop it sounds like a horrible loud crack. It's not comfortable, either lol.

Apr 29, 2016 4:48 PM

For me, it's not my knuckles, but my elbows, knees, ankles, hips, okay every joint in my body except my knuckles. LOL My fingers do bend backwards pretty good though, oh and sideways, but so far they don't lock up and pop. Have you looked into oval 8 ring splints? I can't afford them, but I've read good things about them.

Apr 30, 2016 11:58 AM

Lynxbun, I don't have EDS however I do have a problem with my joints getting stuck. My fingers lock up and after a while, I even have a problem with holding my tablet and phone sometimes because the lock-ups are painful and then I can't type any longer. I have the same issues with my knees, elbows, wrists, knees and ankles. They get stuck and I have to manipulate them and they make a loud POP and then the pain is intense and then it eases. I hope that you find a solution to your problem. Maybe in the morning you could try some heat, gentle stretching of your fingers and hands. Perhaps this will help to ease the symptoms. I wish you the best and hope that you feel better. I am sending you gentle {{{Hugs}}} and prayers for a better day. πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Apr 30, 2016 6:09 PM

Lynxbun, my left knee does this due to a bone spur that catches and causes it to feel like it locks, then it buckles from the pain. And since throwing up in March my neck catches then pops, causing pain and nausea. I'm in PT for that to try and get the disc realigned. It's sliding backwards. I think the worst part is the cracking & popping noises! Lol πŸ™‚πŸ’•πŸ™πŸŒΌ

May 01, 2016 6:26 PM

@alwayz

Yeah, that's pretty much what happens with me. You described it better than I could lol.

My fingers do that and they also move way out of the normal range. I have a couple of oval-8 splints but they're for my thumbs. Should probably consider getting more.

May 04, 2016 11:23 PM

I have those oval 8 splints for my thumbs as well. I have 2 sets at all times so that when one wears out, I always have one put away to have when I need them. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

May 05, 2016 3:55 PM

How did you go about getting diagnosed with eds (if you have been), because I'm super flexible, can bend my fingers back to touch the back of my hand, can pop them out sideways, can fold my hand flat down to my forearm, and all sorts of crazing things including subluxations so I went to the doctors because it's causing lots of pain and they just told me my legs and arms don't bend back as far as they've seen so I must be fine and I'll calcify as I get older. Someone I know has been diagnosed with eds and we talk and we have so many things in common that it's frustrating that the doctors are so dismissive. Makes me so hopeless to think that I'm going to be in pain for at least the next 10/15 years of my life and that's even if I being to stiffenπŸ˜₯πŸ˜₯

May 07, 2016 6:39 AM

ouuchh, my cousin's son was diagnosed first. I'm not sure how he ended up first seeing the geneticist, but that was who gave him the diagnosis. My cousin was diagnosed by the same geneticist. They recommended that I get an appointment with him too. My cousin's son and I have a lot of symptoms in common, that was why they recommended that I see the geneticist. So all three of us were diagnosed by the same geneticist at Buffalo Women and Children's Hospital. Dr Luther Robinson. But he retired not long after I saw him, so to my knowledge there is no longer an EDS geneticist in Buffalo.

Good luck on your journey and if you have any questions I'm here, though I may not reply right away, know that I will within a few days at most. :)

Aug 13, 2016 8:46 PM

Ouch, I hear you! Yes it is hard to get a diagnosis! Mind you, I think bcz it's so "rare" the docs don't know what to do with us. Mind you, I'm not making excuses for them....according to my geneticist, I'm looking at a three generations link for eds-HT (both my parents, myself, and my son). Is it the same with you? Usually if we have it, somewhere in your family has it too. Stay strong fellow zebra, welcome to the herd!

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