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Ehlers-Danlos Syndrome and Joint Hypermobility Spectrum Disorders: What’s the Difference?

Have you ever noticed that your joints are a little more bendy than those of your friends and family? Is it causing pain, discomfort, or making it difficult to complete daily tasks and do the things you love? 

With over 200 connective tissue disorders, it can be tricky to know exactly what you’re up against. Connective tissue disorders like Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) can seriously affect the way you live your life, and knowing which one you’re living with is key to getting the right help for your condition. 

Read on to learn more about Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders! 

What is Ehlers-Danlos Syndrome?

EDS is a group of inherited connective tissue disorders that affect how your body produces collagen. Collagen is what gives structure and strength to your skin, blood vessels, and joints, so when it’s weak, it isn’t able to do its job as well. This can lead to a variety of symptoms related to your skin elasticity and joint mobility. 

The most common type of Ehlers-Danlos Syndrome is hypermobile EDS, which mainly presents as overly flexible joints along with chronic pain. But there are multiple types of EDS, including a more serious type that affects your blood vessels. 

Those with Ehlers-Danlos Syndromes can experience a wide range of symptoms; here are some examples: 

  • Joint Hypermobility - Joints that move beyond a normal range of motion are considered hypermobile, and it’s a common indicator of EDS. Hypermobile joints can lead to chronic joint pain and frequent dislocations. 

  • Skin Problems - EDS often causes the skin to be extra stretchy and fragile, bruises easily, and may not heal well. It may also be soft and velvety. 

  • Muscle Pain - Muscle pain is a common symptom of EDS, and it can be due to factors such as your joints moving from where they’re supposed to be or muscle weaknesses. 

  • Fatigue - Sleep disorders, chronic pain, and muscle deconditioning are common for those with EDS, leading to fatigue. 

  • Cardiovascular Issues - Certain types of EDS can cause heart valve problems. 

  • Autonomic Issues - Symptoms like increased heart rate and dizziness when standing up are signs of dysautonomia and can be experienced by those with EDS. 

Diagnosing EDS often involves a physical examination of your joints and skin, genetic testing, a skin biopsy to see how well your body is producing collagen, or an echocardiogram to assess your heart valves. 

Treating EDS effectively includes a combination of strategies and practices. Physical therapy and exercise, education, lifestyle changes, and finding ways to manage pain and discomfort are all needed to maintain and even improve your quality of life while living with Ehlers-Danlos Syndrome. 

What are Hypermobility Spectrum Disorders?

For some of us, being a little extra flexible can be a big plus, like for dancers or gymnasts. But how do you know if your joints are just more flexible than average, or if there’s a cause for concern? 

Well, generalized hypermobility, or being extra bendy all over, is pretty common and relatively (usually) harmless. When hypermobile joints are accompanied by frequent injuries, joint pain, or certain other symptoms or conditions, then it’s considered a disorder. 

Hypermobility Spectrum Disorders (HSD) are a group of connective tissue disorders that can cause your joints to stretch further than normal, resulting in other issues like pain, instability, or even headaches and intestinal problems. The symptoms can be pretty mild or can be so severe that they interfere with your ability to perform necessary daily tasks and activities. 

The symptoms of HSD are similar to EDS, such as joint instability, pain, and fatigue, but to be diagnosed with HSD there needs to be evidence that the symptoms aren’t due to another condition. Here are some of the issues your healthcare provider will look for when diagnosing HSD: 

  • Joint subluxations 

  • Joint dislocations

  • Joint damage, like a cartilage tear

  • Early joint degeneration 

  • ligament/tendon (soft tissue) damage or injury 

  • Chronic pain or pain that keeps coming back

  • Reduced awareness of your body’s position and movement 

  • Headaches

  • Anxiety disorders

  • GI problems 

The spectrum of joint hypermobility disorders isn’t linear; this means someone with HSD can experience any combination of symptoms, with varying severity, and the types and severity of symptoms can be different every day. 

There’s no one-size-fits-all treatment for managing Hypermobility Spectrum Disorders, so it’s all about coming up with a care plan that’s tailored to your specific needs. Working with a physical therapist to strengthen the supporting muscles and reduce pain, finding pain management strategies that work for you, changing up your daily activities, and talking with a mental health professional are all effective tools when it comes to managing chronic health conditions like HSD. 

Understanding the Difference Between Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders:

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders are both characterized by joint hypermobility, but their overall impact on your body isn’t the same. So, what are the differences? 

The main difference is that EDS is a genetic disorder that impacts your connective tissue and can lead to symptoms such as joints that extend further than the normal range of motion, stretchier skin, and tissues that are more fragile and prone to tearing. HSD doesn’t involve those systemic issues associated with EDS. 

As mentioned earlier, EDS can be divided into 13 different types of conditions, each with unique signs and symptoms. Hypermobile EDS (hEDS) is the most common.

How Our Specialist at ActifyPT Help People with EDS and HSD Reach Their Goals: 

At ActifyPT, our clinicians understand that the challenges you face with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders are unique, and we think your treatment should be, too. Our personalized approach to care helps us create a treatment plan that takes into account not just your medical history, but your routines, favorite activities, and what’s important to you, so you get a plan that fits seamlessly into your life. 

With the help and guidance of our expert physical therapists  and movement specialists every step of the way, science-backed treatments, and a holistic care model that meets you where you’re at, you’ll be able to finally see progress with your condition and reach your goals in a way that works for you. 

Key Takeaways 

  • Ehlers-Danlos Syndrome is a set of genetic disorders that affect how your body produces collagen, leading to issues with skin elasticity and joint mobility. 

  • Joint hypermobility isn’t always bad, but when it’s accompanied by pain and interferes with your ability to do things, then it becomes an issue. 

  • Those with EDS typically have HSD, but not always the other way around. 

  • Working with a specialist is the best way to live with less pain and enjoy a more active lifestyle when living with EDS or HSD.

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