Pain in Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder: What’s going on beneath the surface?
With Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD), it’s not just about being “flexible.” Pain with EDS/HSD can be complex and relentless. From abnormal collagen and joint instability to soft tissue damage, muscle overcompensation, and nerve issues, these conditions can impact your entire body. Let’s break down why pain happens with EDS/HSD—and what makes it so unique.
Abnormal Collagen
Collagen is a protein that acts like “glue” to help hold the body’s connective tissues together. It provides tissues and organs with strength and flexibility. Connective tissues such as cartilage, tendons, ligaments, bone, and skin are those that bind to and support different parts of the body. With EDS/HSD, your body may not be able to produce collagen in a normal way, which means your connective tissues can be more fragile than normal. Your body essentially has a hard time holding itself together, which can lead to significant pain.
Joint Instability & Soft Tissue Damage
The joints of someone with EDS/HSD are typically hypermobile, which means they can easily move out of the normal range of motion because of weaker and more elastic connective tissues. People with EDS/HSD are more prone to dislocations, subluxations, strains, and other injuries due to this abnormal range of motion. When injury happens, the soft tissues around the joints are damaged. Even simple movements in someone with EDS/HSD can cause damage. Damage to the soft tissues around the joints can contribute to pain.
Muscle Overcompensation
With EDS/HSD, the muscles have to work harder to compensate for the lack of support from connective tissue. This means that the muscles in someone with EDS/HSD are constantly activated in an effort to stabilize their joints. Constant activation of muscles can cause soreness, spasms, weakness, and physical exhaustion even when you’re participating in normal daily activities. This kind of pain may feel more localized or deep in your muscles and can be widespread throughout the body.
Nerve Issues
When joints are hypermobile or unstable, the nerves that are located nearby can become pinched or overstretched. When nerves are impacted in this way, they can easily become irritated, damaged, or inflamed. Nerve irritation in EDS/HSD isn’t simply about nerves being hypersensitive—it’s also a result of structural problems in the body that affect the nerves directly. Irritated, damaged, or inflamed nerves can result in significant pain.
Understanding pain in EDS/HSD is crucial—it’s not just discomfort…it can be a sign of deeper, structural issues associated with abnormal collagen, joint instability, soft tissue damage, muscle overcompensation, and nerve issues, among many other things.
Further research is needed to better understand the causes of pain seen in EDS/HSD. By discussing how EDS/HSD can cause pain, we can better support those affected and challenge misconceptions about these complex conditions.
PMID: 28186390; PMID: 25632331; PMID: 37046863; PMID: 34576312
Disclaimer: This blog post is for informational purposes only and shall not be construed as behavioral health or medical advice. It is not intended or implied to supplement or replace treatment, advice, and/or diagnosis from your own qualified healthcare provider.