15 Things All EDS/Hypermobile People Want You To Know- Term life

1. First things first, the phrase “double-jointed” is inaccurate — it actually has to do with loose ligaments.

The medical term is hypermobility or laxity (looseness) of the joint, which means the joint can move beyond a normal range of motion, says Dr. Jonathan Vigdorchik, professor of orthopedic surgery at NYU Langone Medical Center.

Three things determine a joint’s range of motion: bone stability (how the joint sockets fit together), ligaments and tendons (the connective tissue wrapping around the joint to hold it in place), and the surrounding muscles (that keep your joint aligned when you move).

Hypermobility can be associated with a range of medical conditions (more on some of those in a sec) or it can just be something random that your body does occasionally. It’s usually caused by loose ligaments and tendons that don’t properly connect the joint, says Dr. Jennifer Hand, medical geneticist and dermatologist at the Mayo Clinic. That looseness can be from a defect in connective tissue, or from repeated extension and contortion of the body in a way that stretches the ligaments.

2. It’s totally normal to have a hypermobile joint here and there, especially in the hands.

It's totally normal to have a hypermobile joint here and there, especially in the hands.
Having a bendy finger or two is super common since the hand is full of joints and ligaments. Something like that, or a random backwards-bending elbow, is called localized hypermobility, meaning it’s specific to one joint. This happens when specific ligaments happen to be loose or the bone is abnormal, says Vigdorchik.

You might also develop hypermobile joints from putting unique stress on them at young age when those bones are still forming (like a baseball pitcher’s throwing shoulder) or if an injury causes them to heal in a weird way.

3. But some people have generalized joint hypermobility, which means they’re bendy and “double-jointed” all over.

But some people have generalized joint hypermobility, which means they're bendy and "double-jointed" all over.
Generalized hypermobility means that many joints in the body can move beyond the normal range of motion due to an overall looseness in ligaments. Exactly which and how many major joints are affected — the hips, shoulders, or knees — and the severity of associated joint problems varies by person, Vigdorchik says.

“A lot of people with generalized hypermobility don’t even notice until they’re adults and they start to have joint pain,” he says. It’s more common in women than men, says Hand, but doctors don’t have enough research to explain why gender is such a big factor.

4. A doctor can actually diagnose this with special flexibility tests.

A doctor can actually diagnose this with special flexibility tests.
Ehler-Danlos National Foundation / Via ednf.org

You don’t need to see a doctor if you are hypermobile, but if you’ve had dislocations and joint pain or you’re super bendy and just want to know what’s up, you can see a doctor to test for it. They’ll perform series of tests to assess the mobility of the joints on a 9-point scale called the Beighton score.

“You get one point for each pinky finger, elbow, knee, shoulder, etc.,” Vigorchik says. Basically, it’s an easy way for doctors to diagnose hypermobility without genetic testing for a related disorder. You have to score at least a 5 to have generalized hypermobility, says Hand, but from there, the looseness of your joints is on a spectrum and can range from moderate to severe.

5. In some cases, having flexible joints all over can be a symptom of a more serious genetic disorder that affects the connective tissue.

In some cases, having flexible joints all over can be a symptom of a more serious genetic disorder that affects the connective tissue.
US-D, MedPix Medical Image Database, Wikimedia Commons / Via commons.wikimedia.org

When generalized hypermobility comes with a lot of other symptoms, it’s usually associated with the following:
Ehlers-Danlos syndrome (EDS)
Marfan syndrome
Postural orthostatic tachycardia syndrome (POTS)

People with EDS or Marfans can experience a range of other serious symptoms because these disorders cause a defect in all the connective tissue in the body, which includes not only the ligaments around joints but also the blood vessels, aorta, eyes, internal organs, and skin. So along with bendy joints, people can have fatal and disabling symptoms like aortic rupture or cataracts. POTS is an autonomic disorder also seen in hypermobile patients, says Vigdorchik, and it affects pulse and blood pressure, so patients often feel light-headed and fatigued. These definitely aren’t the only disorders to be associated with hypermobility, but they’re a few of the most common ones.

6. Ehlers-Danlos syndrome, one of the most common causes of severe hypermobility, can range from mild to fatal.

Ehlers-Danlos syndrome, one of the most common causes of severe hypermobility, can range from mild to fatal.
Veronica Foale CC BY-NC-ND / Via Flickr: sleeplessnights

EDS is actually a group of disorders caused by a defect in collagen, a connective tissue that supports your joints, skin, blood vessels, and other organs. There are six different subtypes, and most (but not all) include hypermobility.

“People with EDS tend to have the hypermobility but also chronic pain, a history of sprains and dislocations, skin elasticity [pictured above], scars and bruising, bowel problems, and blood vessel ruptures depending on their subtype,” says Hand. And there’s a lot of variation in the subtypes. One subtype, “hypermobility type,” can just make you super bendy with minor joint pain, while another can cause serious issues like aneurysms. Fortunately, there’s genetic testing that can determine which type of EDS you have.

7. But you can also just be a super-hypermobile, bendy person.

But you can also just be a super-hypermobile, bendy person.
Technically it’s called benign joint hypermobility syndrome, but recently doctors havere-classified it under Ehlers-Danlos hypermobility type, since they are so similar.

Hypermobility syndrome (for short) is diagnosed when, in addition to generalized hypermobility, people have discomfort, joint injuries, or pain for more than 12 weeks and genetic disorders have been ruled out. It’s a spectrum disorder, says Vigdorchik, so it ranges from mild to severe joint extensibility and musculoskeletal symptoms. “Some people are just really good at yoga and contortion acts — and it doesn’t hurt them, because they’re on the end of spectrum with few other symptoms,” Vigdorchik says.

8. With severe hypermobility, activities like walking and exercising can cause serious injury.

Youtube user exwrestlter125 / Via youtube.com

When bigger joints like the shoulder socket or hips and knees move around a lot, it can become super uncomfortable to do normal things like walking and carrying objects. For example, if a hypermobile person runs, the kneecaps can slide back and forth and grind down on the cartilage because the ligaments in the knees are too loose to keep the kneecap joint in its groove, Vigdorchik says.

It’s common to have tears, sprains, dislocations, and overuse injuries from severe hypermobility. These can require anything from simple physical therapy and rest to surgeries like hip replacements. Many patients with EDS struggle with chronic pain and disabilities because of recurring injuries.

9. And it can actually be annoying and painful to be able to dislocate your joints.

 

mdumont10 / Wikimedia commons / Via commons.wikimedia.org

GE Malone / Wikicommons / Viacommons.wikimedia.org

A lot of hypermobile people can easily dislocate their joints and pop them back in place. If the joint is super loose and dislocations happen regularly, it might not hurt much, but it can also be just as painful as a dislocation is for anyone without hypermobility.

“A hypermobile person’s shoulder joint can dislocate from just reaching your arms behind your back to fasten a bra,” Vigdorchik says. So in many cases, it’s unintentional and pretty annoying. Not all joints can be easily popped back into place, so it can actually wind up costing you a ton in trips to the ER for a doctor to relocate and align your joints.

10. So those “party tricks” can hurt you.

So those "party tricks" can hurt you.
imgur.com / Via reddit.com

If you’re born super bendy, it might seem fun to wow people with crazy party tricks and weird contortion acts. In many cases of hypermobility, these tricks can be harmless and actually give people an advantage in things like gymnastics or ballet, Vigdorchik says. But since the joint is already unstable, over time these weird movements can stress the ligaments and tissues and cause painful injuries. So even if your hypermobility isn’t severe, if you’ve had any pain or joint problems, it’s smart to avoid this.

The experts warn against doing any weird joint tricks if you have a serious form of EDS or Marfans, because it’s more likely to result in injury. “It also really depends on the person and the limits of their body, but it’s always better to be cautious,” Hand says.

11. If you do end up injuring yourself or just dislocate often, you might want to try physical therapy.

If you do end up injuring yourself or just dislocate often, you might want to try physical therapy.
Instagram: @businessinsider / Via instagram.com

People often notice their symptoms after exercising, Vigdorchik says, because they get injured due to the lack of stability in the joints. But hypermobile people shouldn’t be discouraged from exercise — they just might need to meet with a physical therapist and take extra steps to avoid further problems.

The experts say that you can somewhat overcome loose ligaments by doing specific isometric exercises to strengthen the muscles around the joint to keep it super stable — especially in the knees and hips. Even hypermobile-friendly exercises like yoga can put joints under stress, so it’s important to focus on strength training and knowing your limits, Vigdorchik says.

12. There is no cure for severe hypermobility or EDS, but treatment includes pain management and surgery.

There is no cure for severe hypermobility or EDS, but treatment includes pain management and surgery.
Purestock via Thinkstock / Via thinkstockphotos.com

“Besides monitoring any possible heart or eye issues, treatment is usually anti-inflammatory pain meds, ice and compression, bed rest, and that’s about it, because the real cause is an incurable genetic problem,” says Vigdorchik. The experts do warn against muscle relaxers (which make the joint less stable) and opioids (because they’re addictive).

Some people need surgeries to alter the bone and create joint stability, Vigdorchik says, especially after injuries like hip dysplasia (a painful misalignment of the hip joint) or knee dislocation. Otherwise, many patients explore different holistic and therapeutic options for the chronic pain. The prognosis for someone with severe hypermobility varies by person, but unless it affects the blood vessels, it’s a manageable and non–life threatening condition.

13. It’s not uncommon for these painful physical symptoms to affect mental health.

It's not uncommon for these painful physical symptoms to affect mental health.
unspokenwords.tumblr.com / Via instagram.com

“I think many hypermobile patients suffer from anxiety and depression because they go through years of pain and hundreds of doctors with no answer — I’ve even seen people who’ve had multiple invasive surgeries for the wrong thing, which was later diagnosed as EDS,” says Vigdorchik.

The experts explain it’s an easily overlooked and misunderstood condition because there’s still a lot of research to be done and hypermobility occurs on such a wide spectrum, varying greatly by the individual. And even though a diagnosis does bring relief to patients, Vigdorchik says, many have trouble coping with the fact that it’s a chronic illness with no cure. That being said, knowing your diagnosis can help you to understand your symptoms better so you can manage them properly to get healthy and happy again.

14. So if you need to talk to someone, there are support groups and online communities that can help.

So if you need to talk to someone, there are support groups and online communities that can help.
Instagram: @zebrasurvivors / Via instagram.com

The hypermobile, EDS, and Marfans syndrome communities have formed many online spaces to provide education, resources, and support for affected people and their families. Popular resources include the Ehlers-Danlos National Foundation andEhlers-Danlos Syndrome Today Advocates. You can also find support on Instagram and Tumblr, where people with hypermobility disorders (who call themselves “zebras” or “zebra warriors”) share their experiences and connect with each other.

“The most important thing is that patients with severe hypermobility or EDS suffering from chronic pain and other symptoms know it’s not in their head and there are a lot of people out there just like them,” Vigdorchik says.

15. Doctors are still working hard to understand more about these disorders and increase awareness.

Doctors are still working hard to understand more about these disorders and increase awareness.
Instagram: @_dysautonomiahumor / Via instagram.com

There’s a big lack of understanding and awareness of what these disorders mean to people, says Vigdorchik, but this will change with more research and awareness efforts. Supposedly, the first case of hypermobility was described in 400 BCE by Hippocrates — so we’ve been trying to figure this thing out for a long time. The definition and classification of Ehlers-Danlos syndrome has changed so much over the last few decades as doctors have learned about the underlying genetics and different subtypes.

So, if you can move way too many joints and frequently experience joint pain or dislocation, you might want to get tested just in case to avoid any potential injury. And if you’re just hypermobile with no other symptoms, enjoy being super flexible (carefully, please).

And PS: Puppies can have hypermobility and EDS too!

And PS: Puppies can have hypermobility and EDS too!
Wikimedia Commons / Via en.wikipedia.org

Happy bending!

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