I have HSD - has anyone had experiences where something pops out?

Posted by suecutuli @suecutuli, Jan 25 11:47am

I have HSD - I’ve probably had it all
My life but came to light finally after so many complications of a bad femural head break 16 years ago. So one thing ( of many) id like to know if any of you have experienced a painful situation where it appears/ feels like something has moved in your physiology and is not lined up right causing severe pain. Ive had this happen 4 times now spaced out over several years. The first three times there was an unweighting of my knee and it was like it popped out. It would hurt at an 8 for awhile i would just lay still and slowly move my ankle, would hear a pop and i was fine! The third time it was move severe and overnight. The next morning I swung my leg around and it popped and i was better. So this last time it was different.
My knee started hurting at night ( oh well that happens a lot) but the next morning so much pain. A weird deep bone pain. All day i layed around- getting up to see if i could put weight on it only to suffer until it settled down again. Then it went into my shin- this deep deep pain that made me cry( i dont cry ofter as im in constant pain) i think i heard a tiny pop? Maybe ?? The next morning i woke up and it was fine…. So weird. The only thing that i can figure is bc of my HSD things just arent being held in place properly??? Idk no one seems to know !! Anyone eles out there with this weird
Painful experience? Makes me crazy!

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emo | @emo | Jan 28 10:02am

Hi there- Have you been diagnosed with Hypermobility Spectrum Disorder (HSD)? Just want to make sure. HSD and EDS aren’t autoimmune diseases, but it’s common for people with either to also have an autoimmune disease >_<

If so, yes, it’s very common for people with HSD or hEDS (hypermobile Ehlers Danlos Syndrome) to experience dislocated joints because the soft tissues meant to support the joints are overly flexible (hypermobile). Even if someone doesn’t experience the dislocations (thankfully I don’t), HSD can cause chronic pain and fatigue from your muscles working so hard to hold your joints in place.

I’m not sure why there isn’t an HSD/EDS or POTS support group here (maybe we need to start one ha), but there is an EDS blog: https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

Or I find their site helpful: https://www.ehlers-danlos.com/what-is-hsd/

ninajp | @ninajp | Jan 30 9:34am

Those who have some degree of dislocation should look into Kinesiotape. It could help a lot ( I'm certified in using it with my patients. I'm an OT orthopedic therapist). You can learn how to use it from a therapist. The tape comes with instructions although just a little. You can buy the tape through Amazon or most pharmacies.

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