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14 Ways to Describe What a Subluxation Feels Like

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Describing what a symptom feels like to someone who hasn’t experienced it can be a tricky task. This includes trying to explain what it feels like to have joints that partially dislocate on a regular basis, also known as subluxation. Even though people might understand dislocations, how do you explain subluxations?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

According to Svetlana Blitshteyn, M.D., director and founder of Dysautonomia Clinic and Amherst Neurology, a subluxation is “a partial dislocation where the two bones in a joint are still partially in contact with each other.” They can occur when you’re doing an everyday activity, like carrying a basket of groceries, or doing something more strenuous. Subluxations are different than dislocations, where both of the bones in your joints are “completely separated from each other.”

Subluxations can occur for many reasons, but it’s especially common if you live with Ehlers-Danlos syndrome (EDS), “a group of disorders, many of which are hereditary, that affect connective tissue supporting the skin, bones, blood vessels and many other organs and tissues,” Dr. Blitshteyn told The Mighty. EDS can cause a wide range of symptoms almost anywhere in your body, from minor joint issues to life-threatening heart problems.

There are currently 13 different types of EDS, which are usually identified by specific mutations or changes in your genes that regulate the structural protein collagen in your body. All types of EDS are considered rare, though experts believe the hypermobile type is more common than originally believed — at least 1 out of every 5,000 people have hypermobile EDS (hEDS). If you have hEDS, Blitshteyn said you have a much higher chance of also experiencing subluxations, which are caused by issues with the collagen or connective tissue that would normally hold your joints in place.

Though Blitshteyn emphasized both subluxations and dislocations “are not dangerous even though these may be painful and bothersome,” they can cause short- and long-term issues. Blitshteyn added:

Both subluxation and dislocation can cause pain and mobility issues, which may be treated with non-steroidal anti-inflammatory medications, temporary immobilization, braces and physical therapy. Long-term complications include arthritis and early-onset arthritis, which is common among patients with hypermobile EDS.

Knowing what subluxations are still doesn’t capture what they feel like for those who have never experienced it. In order to learn more about what subluxations really feel like, we asked The Mighty’s EDS community how they would describe it.

Here’s what those living with EDS had to say:

1. “My body has a mind of its own.”

“When I’m walking and my leg bone(s) subluxes from the hip(s) it feels like I’ve stopped walking but my legs decided to keep going. I typically fall down because of this happening. I’m waiting for my braces for my legs so I’m a bit more stable and hopefully won’t fall. It feels different for each joint that it happens to. I’d have to say for me the worst has been my ribs because it happens pretty much every night in bed while trying to sleep and it’s very painful long after.” – Aimée R.

“Me: Let me walk over there. Sublux of knee/hip/ankle and/or toe(s): Not today, dear. I got plans. Me: Lemme see this jar of marmalade, mmm. Subluxation of thumb/finger(s): You can eat that later when someone comes over. Me: Let me get up and go to work. Subluxation of whatever joint: Lololol.” – Janet M.

2. “There’s a loss of stability.”

“Like an instant loss of stability. Something is moving in a way that it’s not supposed to; it doesn’t feel right, stable or very flexible. The only way to relieve that sensation is to put your bone back in its joint, which isn’t always easy. Depending on the joint, there can be intense pain. Especially when my floating ribs sublux, that can feel like someone is slowly stabbing me. My hips on the other hand mostly feel wrong and rarely hurt. I just have to quickly stop moving and pop that back into place before it fully slips out and dislocates.” – Jessica L.

3. “It’s like a headache, but in my joints.”

“It truly is hard to explain but here’s my best shot. Subluxation is like having a headache, just in your joints, and 10 times worse, and ibuprofen can’t help. When my hip subluxes, it feels like there is another bone in my hip, pushing it out of place. Sometimes, rarely, I can just ‘pop’ it back but normally I just have to sit, wait, and hope that it resolves itself.” – Sean F.

4. “There’s painful popping.”

“You know when you feel like you need to crack your neck or knuckles? It feels like that, but the normal movement doesn’t relieve the sensation. It’s just out and won’t pop back. Then, on top of that, imagine that the nerves branching out from that spot are now on fire and someone is tracing over them with a sharp blade. That’s what subluxation usually feels like to me, as it usually results in pinched nerves as well.” – Alexandria P.

“When something subluxes, it feel like when you accidentally pop a joint very uncomfortably and painfully (like when you crack your knuckles or neck too hard) but the pain and discomfort stay for far too long until the subluxation is fixed.” – Elyse B.

5. “My puzzle pieces don’t quite go where they’re supposed to anymore.”

“A sublux depending on what bone it is either feels like something is slightly out of place. Or I describe it to my friends like trying to fight a puzzle piece in but it’s turned the wrong way so you have to turn it till it fits just right. While a dislocation feels like I’m being ripped about at the seams.” – Unity M.

“Like a square peg in a round hole. If you shove it and wiggle a bit, [it] may fit but, it doesn’t sit right.” – Heather J.

“My sister asked this same question. I handed her 2 rocks and a bouncy ball. I then wrapped the two rocks around the ball with plastic wrap so she was able to see and then put rubber bands around such. I had her move them and told her when the ball popped out that was a sunblock because it popped right back in. But she said it didn’t feel right I told her it never does.” – Shelby S.

6. “Something doesn’t feel right.”

“It’s so hard to explain but you can just feel that something isn’t sitting right. And the longer it is subluxed the more your body tries to compensate. Then you end up with all kinds of strained muscles, pinched nerves, and even other subluxations/dislocations.” – Sandi D.

“It feels like something is ‘off.’ There is heat in the joint sometimes; it gets red and has a tingling feeling. The area also starts to hurt the longer it is subluxed. Once you realize what it is and how to fix it, you can start rolling that part of your body to put it back. Sometimes it pops and other times it just slides back in place. I feel immediate relief once it’s fixed.” – Lyndsie H.

“Something just doesn’t feel right. It feels like your joint is just wrong, and like your joints aren’t as easy to bend or move as they should be. Sometimes nerves end up getting pinched, which feels like I’d imagine being shocked by a cattle prod feels like.” – Rachel O.

7. “There’s the squish, but then there’s the pain.”

“With the tibia of the knee, it’s like suddenly stepping down on a large squishy pad while having a sharp jab of pain. The squish feeling continues while walking feels awkward while the tibia is out. When it goes back in the kathump feeling happens, then it’s easier to walk straight which helps the whole body feel more balanced and doing everything is easier.” – Julie D.

“Feels like OMG The Pain! the first few times, then you just get used to it and learn to pop them back in while going about the day, shaking off the pins n needles and cringing pains.” – Angie K.

8. “I’m made of loose strings.”

“It’s like being an old fashioned doll with loose strings, so our limbs flop around on us.” – Debra R.

“It feels like being one of those old string or ball jointed dolls that an overly aggressive two-year-old got a hold of so now nothing stays where it should.” – Kayla B.

9. “It’s completely overwhelming.”

“It feels like your body is held together with matchsticks and bubblegum, and you’re trying to carry a 300 lb gorilla.” – ShayLee W.

“When my shoulder subluxes, it feels like a small child has jumped onto my arm and is just hanging on, trying to pull it from its socket.” – Kathryn M.

10. “Something is pulling away from my body.”

“It feels like my joint is an old, worn out suction cup that is being pulled away from the rest of my body. It pulls at everything nearby, knotting up my muscles. It makes the limb feel heavy like I’ve got weights on one side of my body or the other. Sometimes it goes out with a sharp stabbing feeling, other times it slides out with a dull, progressing ache.” – Antonia D.

“Like a hot spoon shoved between the joint prying your bones apart.” – Snow B.

11. “There’s a sound that comes with it.”

“It feels like opening a shampoo bottle. That ‘click’ noise from the cap unlocking. But associate that feeling of the bottle opening and the noise with pain.” – Kourtney K.

“I do not feel it unless it is chronic… It just feels like ‘crack, crack crack’ with bones twisting around.” – Jess M.

12. “My joints just stop working.”

“When my hip or knee subluxes, it feels like the joint just stops working. I stumble and scream because it feels like the joint has just ripped right out of place. I can’t put weight on it for a bit and it’s sore and burns for a while after.” – Carmen C.

13. “That’s not supposed to be there.”

“For me, I feel a stretching sensation then a sudden snap of pain as the joint moves into an unnatural position. At this point, it feels extremely unstable. The muscles around the joint go into what I call super flexion mode. They are working hard holding the joint to keep it from dislocating. Depending on where the subluxation is, there may be nerve pain involved that can radiate or cause sharp shooting pains to other areas of the body along a nerve track. After hours of hard work the muscles go into spasm from the overwork and joint pain is amplified by muscle pain and spasm.” – Kate M.

“It feels like all your ribs are overlapping each other.” – Angie S.

14. “It just depends.”

“It depends on what you sublux. A shoulder feels like your arm is being pulled off your body and the skin is the only thing holding it on. An ankle feels like an intense Charlie horse. A rib out gives me a sharp pain with every breath and makes it hard to feel like I’m breathing deeply enough. A jaw feels like my teeth are misaligned and it makes my ear hurt.” – Kylee P.

“Depends which joint. My hips, fingers, jaw and wrists just feel sort of twisted and it’s annoying, like a Rubix cube that’s only been halfway turned. For my shoulders and knees. It’s like a tearing sensation and easier to describe to women as I find it’s like have really bad period pains but in your joints.” – Carly D.

“They’re different for me. Sometimes it feels like discomfort like you need to ‘pop’ whichever joint it is, similar to feeling like you need to pop your knuckles. The sensation then becomes increasingly uncomfortable and painful, until I manage to pop it back into place. There is always a loud clunk/crunch and feeling of immediate relief when I do. Sometimes, it just feels like my joints are too lax, and I feel the joint slipping further and further until it’s subluxed and I’m in excruciating pain. These ones usually start with a very relaxed and panicked ‘slipping’ feeling, and then ends feeling like a trapped nerve.” – Christina G.

If you experience subluxations, talk to your doctor about what you can do to reduce your symptoms. Your doctor may recommend avoiding strenuous activity that’s hard on the joints, like running on pavement, suggesting instead gentle, graded exercise (and stretching) as it can help strengthen your joints. Braces and compression clothing can help stabilize your joints as well. Share your experience with subluxations with a community that cares by joining The Mighty’s Ehlers-Danlos community.

To learn more about living with Ehlers-Danlos syndrome, check out the following stories:

Originally published: April 23, 2019
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