can you have hypermobile.eds without hypermobility
"Can You Have Ehlers-Danlos Syndrome Without Hypermobility?"
By Hannah Garcia
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Hypermobile Ehlers-Danlos Syndrome (hEDS) and Generalized Joint Hypermobility (GJH) are often used interchangeably, but they are not the same condition. While hypermobility is a key feature of hEDS, it's possible to have joint hypermobility without having hEDS. Let's delve into the details to understand the difference and why this matters.
Understanding Joint Hypermobility
Joint hypermobility refers to the ability of a joint to move beyond its normal range of motion. It's a common trait, affecting up to 20% of the population, and can be inherited or acquired. While it can cause no symptoms, it may also lead to joint pain, dislocations, and other health issues.
What is Hypermobile Ehlers-Danlos Syndrome (hEDS)?
hEDS is a genetic connective tissue disorder that affects collagen production. It's characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Unlike GJH, hEDS is a systemic condition that can affect multiple organ systems, including the cardiovascular, gastrointestinal, and neurological systems. It's diagnosed based on clinical criteria, including a Beighton score of 5/9 or greater, and the presence of other symptoms.
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What People Get Wrong About Hypermobility and FlexibilityHypermobile Athletes: What You Don't Know Can Hurt You7.1K views · 3.9K reactions | 1. To brace my knees when they are feeling unstable to avoid any subluxations/dislocations. 2. Hips joints popping out/giving way is not a normal thing that happens to everyone. 3. Your neck joint can also be hypermobile. Who knew? 4. Standing with my feet crossed at the ankles was a sign of underlying joint instability. 5. You don’t have to be hypermobile in every single joint to have hypermobility. Some individuals can be hypermobile in a generalised joint and others can have hypermobility in multiple joints. #hypermobility #hsd #heds #chronicillness #invisibleillness #spoonielife | Safiyyah Bilal| Chronic Illness Fitness Coach🇧🇧🇸🇩 | Facebook
Can You Have Hypermobility Without hEDS?
Yes, it's absolutely possible. As mentioned earlier, joint hypermobility is quite common and can occur independently of hEDS. Here are a few reasons why someone might have joint hypermobility without hEDS:
Inherited Trait: Joint hypermobility can be an inherited trait that doesn't cause any other symptoms of hEDS.
Acquired Condition: Joint hypermobility can develop due to certain conditions or activities, such as gymnastics, dance, or other sports that require a high degree of flexibility. It can also be a result of certain medical conditions or treatments.
Other Connective Tissue Disorders: While hEDS is the most common cause of joint hypermobility, other connective tissue disorders like Marfan syndrome or Stickler syndrome can also cause joint hypermobility.
Why the Distinction Matters
The distinction between joint hypermobility and hEDS is crucial because they require different management strategies. While joint hypermobility may only require monitoring and management of symptoms, hEDS is a progressive condition that requires lifelong management and regular monitoring by a specialist.
8 ideas for hypermobile hands12K views · 502 reactions | You can be hypermobile without having a symptomatic hypermobility disorder like hypermobile Ehlers Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD). But… We should be looking out for clues. When someone has hypermobility (more than average range of motion), healthcare providers and movement pros should be on the lookout for hypermobilty in other joints. And when there’s hypermobility in multiple joints….we should also be on the lookout for systemic issues like Dysautonomia Mast Cell Activation Syndrome Migraines Pelvic Floor Dysfunction Symptoms like Severe fatigue Dizziness Headaches Pain Difficulty getting numb at the dentist The point is, yes, someone may be “just hypermobile” but so often we see this and someone is fine….until they’re not. The sooner people start recognizing these signs, and the co-conditons that go along with hEDS and HSD, the sooner more people can get care. Did this help? Share in the comments! #HypermobilitySpectrumDisorder #hEDS #EhlersDanlosSyndrome | Melissa Koehl | FacebookThe Top Three Serious Causes of Hypermobility Joint Disorder
Diagnosing and Managing Joint Hypermobility
If you suspect you have joint hypermobility, it's important to speak with a healthcare provider. They can perform a physical exam, assess your symptoms, and rule out other conditions. Management strategies may include:
Regular exercise to maintain joint health and strength
Pain management strategies, such as physical therapy or medication
Education about joint protection and injury prevention
When to Consider hEDS
If you have joint hypermobility and also experience other symptoms such as skin hyperextensibility, tissue fragility, or systemic symptoms like fatigue or gastrointestinal issues, it's important to discuss these with your healthcare provider. They may refer you to a specialist for further evaluation.
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Joint Hypermobility
hEDS
Common, affects up to 20% of the population
Rare, estimated to affect 1 in 5,000 to 1 in 20,000 people
May cause joint pain and dislocations
Progressive condition with systemic symptoms
Diagnosed based on physical exam and symptoms
Diagnosed based on clinical criteria and may require genetic testing
In conclusion, while joint hypermobility is a common condition, it's important to understand that it's not the same as hEDS. If you have joint hypermobility and are experiencing other symptoms, it's crucial to discuss these with your healthcare provider to ensure you receive the appropriate care and management.
Things I didn't know were related to my hypermobility!Self Managing the Hypermobile BodyThings I thought were normal but were related to hypermobility part 1!39K views · 9.4K reactions | Hypermobile humans notoriously have issues with feeling increased tightness or tension in our bodies. Which can be really confusing because we’re extra bendy? Shouldn’t we feel nice and free to move? It seems like stretching would help, but more often than not, it might not be as effective as you’d think, or even makes things worse. This is because the tension we feel may not be due to actual limited flexibility. If this was the case, some regular good old fashioned stretching usually works pretty quickly. So what’s going on? The sensation of stiffness, or pain, or any other sensation for that matter is driven by our central nervous system. And if were’ hypermobile, as sensation of stiffness can be a mechanism your brain uses in order to keep you safe by limiting your range of motion! However, stiffness can be an uncomfortable or downright painful sensation, and if we give our brain an additional input of safety and support, such as with this ball squeeze, the output of pain and stiffness can very quickly decrease! This trick doesn’t work for everything of course, but it’s super easy to try and an excellent example of just how much muscle activation, stabilization, and strengthening our bodies actually can help us feel less stiff in a more effective way that doing eight million stretches. Give it a go and share what you learned in the comments! #EhlersDanlossyndrome #hEDS #EDS #hypermobility | Melissa Koehl | FacebookDo You Have Joint Hypermobility?Hypermobility and Your Health | Sara Russell NTP
When you are hypermobile , we may do PT for our body but can’t forget how our hypermobility impacts our oral muscle function , breathing and jaw joint. Stabilization, strengthening, and habituation of where your tongue should rest ,how you breathe, chew and swallow can make a world of difference with your symptoms. As a person with hEDS I learned this with my own journey , and want to share with others as a myofunctional therapist. Our team understands hypermobility and EDS so you aren’... Myofunctional Therapy, Ehlers Danlos Syndrome, Muscle Function, Our BodyDr. Shakib Chiro. And Posture on Instagram: "Best hypermobility exercise for your whole body! #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #mobility #mobilitytraining #mobilitychallenge #mobilityexercises #shouldermobility #hipmobility #anklemobility #spinemobility #jointmobility" Hypermobility Stretches, Workouts For Hypermobility, Yoga For Hypermobility, Stretches For Hypermobility, Hypermobile Workout, Hypermobile Exercises, Isometric Exercises For Hypermobility, Hypermobility Exercises, Exercises For Hypermobility5 Tips to Safely Deal with Hypermobility164K views | Reel by Melissa Koehl372 reactions · 31 shares | Having hypermobile Ehlers-Danlos syndrome documented isn’t just a label — it’s a tool to get care that actually reflects your body. Here’s why it matters: 💉 Anesthesia: Bodies with hEDS often respond differently — local numbing may wear off fast, sedation can be unpredictable, and vitals may fluctuate. Having it documented helps anesthesiologists plan safely. 🏥 Surgery & Procedures: Joint instability, fragile tissues, and healing differences change how surgeons approach treatment. Your chart gives them the context they need. 💊 Medications: From pain management to GI or autonomic symptoms, providers make better choices when they understand your connective tissue and nervous system differences. 🏫 Work & School Accommodations: A documented diagnosis supports flexible scheduling, modified duties, ergonomic supports, or academic accommodations under ADA/504. 📄 Disability Benefits: Short-term or long-term disability, SSDI, or SSI applications are stronger when your medical record clearly reflects functional limitations. 🚗 Handicap Parking Placard: Proof of documented limitations can give access to HP placards, reducing strain and injury risk in daily life. A diagnosis isn’t about labels — it’s about safety, access, and being taken seriously. Your body, your story, your chart. 🙂↕️🫶🏻 Want support? Comment “access” for a free consultation or check out my website loveandlightwellnessvt.com for more information!! 💻⭐️ #heds #pots #mcas #chronicillness #accessibility | Love and Light Wellness | FacebookMovement & Stillness for Hypermobile Bodiesa woman standing on top of a rug in front of a window with the words hypermobile with forward shoulders?8 Things You Probably Didn't Know About Hypermobility Syndromeperfect chair for hypermobilty I’m not a doctor or anything, but I’ve seen recent posts about hypermobility and I definitely am. I’m learning how to come out of that and become strong and grounded, but in the meantime you’ll find me propping my legs up on this built in ottoman on my new desk chair! follow me on my journey to curating my creative space!! #hypermobility #hypermobile Spoonie Life, Perfect Chair, Creative Space, Coming OutThe Contented Child, Child Wellbeing Consultancy10 Common and Surprising Signs of Generalized HypermobilityEver wonder why as a hypermobile person you get so exhausted during exercise? Hypermobility tipsEhlers DanlosStop stretching your hypermobility. 🛑 Most think more flexibility is the answer, but for hypermobile bodies, stability is the real key to ending chronic pain. … Watch how we transformed Natasha’s strength and eliminated her pinching in just one session. …. #hypermobility #chronicpain #mobilitytraining #physicaltherapy Wrist Mobility Exercises Physical Therapy, Upper Mobility Exercises, Hand And Wrist Mobility Exercises, Wrist Mobility Exercises Flexion Extension, Finger Mobility Exercises, Wrist Mobility Stretch Exercise, Gentle Wrist Mobility Exercise, How To Increase Wrist Mobility, Forearm Mobility Exercises
