Caring for EDS Back Pain (Ehlers-Danlos Syndrome)

Back pain is an extremely common ailment experienced by an estimated 80% to 90% of adults in the United States at some point in their lifetime1. Roughly 23% experience chronic back pain, which is not only frustrating but can take a negative toll on your overall long-term well-being. For those living with Ehlers-Danlos syndrome (EDS), it can be especially challenging.

Ehlers-Danlos syndrome back pain can significantly impact daily routine, making it difficult to take part in your regular activities and maintain a high quality of life. Effective management of EDS back pain is crucial for improving mobility, reducing discomfort, and enhancing overall well-being for those living with EDS.

Today, we’re taking a look at EDS and back pain so you can learn what this condition is, what causes it, and ways to find EDS back pain relief for your upper and lower back, ranging from gentle exercises to supportive tools like zero gravity chairs.

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of 13 connective tissue disorders that affect the skin, joints, and blood vessels. People with EDS sometimes have overly flexible joints that result in hypermobility pain as well as stretchy, fragile skin. This can lead to a variety of health issues, including chronic EDS back pain, frequent joint dislocations, and easy bruising.

EDS is caused by mutations in certain genes, affecting your body's ability to produce strong and stable connective tissue. It’s hereditary, meaning it can be transmitted from parents to children, following either a dominant or recessive inheritance pattern. At this time, the genetic causes for hypermobility EDS  (hEDS) have not been identified and diagnosis for that particular type is based on an accepted diagnosis checklist3.

The severity and symptoms of EDS can vary widely among those living with the condition. While some might experience relatively mild symptoms, others may have significant pain and mobility issues. There are many types of EDS, each with its specific genetic cause and set of symptoms. Proper diagnosis and management are crucial for improving the quality of life for those with EDS.

Causes of Ehlers-Danlos Syndrome Back Pain

EDS back pain comes up because of the underlying connective tissue disorder. The hypermobility of joints, a symptom in many types of EDS, can lead to instability and chronic pain in your spine. This makes spine health tips all the more important to follow as you learn to manage your overall symptoms. EDS often causes both upper and lower back pain as the muscles and ligaments surrounding your spine are continuously overworked to maintain stability.

Another common cause of EDS back pain is any subluxations and dislocations of vertebrae in your spine. These are capable of causing acute pain now and long-term damage to your spine. Additionally, the weakened connective tissue can result in poor posture, which makes EDS back pain worse over time.

Muscle spasms are also a factor when it comes to EDS and back pain. As your muscles attempt to compensate for the unstable joints, they can become fatigued and tense up. This leads to painful spasms and potential additional damage to the tissue. The overall increased sensitivity to pain in those living with the condition makes EDS back pain relief vital to their quality of life.

How to Manage EDS Back Pain

As there’s no singular treatment for EDS, the main focus turns to managing your symptoms. Managing Ehlers-Danlos syndrome back pain and other ailments takes an exploratory approach to see what works best for you. This could include things like gentle exercises, pain management strategies, and the use of supportive tools like zero gravity chairs.

It’s important to adapt your EDS back pain management plan to meet your specific needs and symptoms, so be sure to talk to your doctor every step of the way for professional guidance.

Managing Upper EDS Back Pain

EDS back pain in the upper back can be challenging because of the engagement of your thoracic spine and surrounding muscles. Effective management of these symptoms for EDS back pain relief might take the form of a combination of targeted exercises, pain relief strategies, and the use of supportive tools to alleviate discomfort and improve mobility.

Some methods to help manage upper EDS back pain are:

• Low-impact exercises: Incorporating gentle low impact exercises like swimming, Pilates, and yoga can strengthen the muscles supporting your upper back and improve flexibility. Swimming is a low-impact workout that reduces strain on your joints, while Pilates focuses on core stability and posture. Options like yoga provide gentle stretching and relaxation techniques that can help reduce muscle tension.
• Heat therapy: Applying heat to the upper back can relax tense muscles and provide soothing pain relief. Use a heating pad or warm towel for about 20 minutes to improve blood flow and reduce stiffness. For a more effective method, many have also turned to heated zero gravity chairs to combine strategies for EDS back pain relief. This method is especially effective for relieving chronic muscle tightness associated with EDS.
• Massage: Professional massages can target specific areas of tension in the upper back, promoting relaxation and pain relief. Regular massage sessions can help manage chronic pain and improve overall muscle function. Massage features of zero gravity chairs make them a versatile option to combine even more methods for alleviating Ehlers-Danlos syndrome back pain.
• Ergonomic chairs: One of the complications with EDS is poor posture. Using chairs with proper lumbar and upper back support can significantly reduce pain during sitting. These kinds of chairs promote good posture and reduce strain on the spine. Investing in a high-quality ergonomic chair can make a noticeable difference in daily comfort.
• Posture correctors: Wearable posture correctors can help you maintain proper alignment and prevent upper back pain. These devices provide support and remind you to keep your shoulders back and spine straight. Regular use can contribute to long-term improvements in posture and reduce EDS back pain symptoms.

Managing Lower EDS Back Pain

Lower EDS back pain is caused because of the instability and weakness of your lumbar spine. Effectively managing lower back pain can overlap with upper back pain treatments, but is more focused on supporting and strengthening your lower spinal area. 

A few methods to help manage lower EDS back pain are:

• Walking: Going for a walk can help strengthen your lower back and improve your overall fitness. Like swimming, walking is a low-impact exercise that works as an effective method for increasing poor blood circulation and reducing stiffness in your lumbar region.
• Core strengthening exercises: Gentle exercise is a prime focus for EDS back pain relief, and for lower back pain you should focus on strengthening core muscles. This provides better support for your lower back to keep your symptoms as minimal as possible. Exercises like pelvic tilts and bridges enhance lumbar stability and reduce pain.
• Cold therapy: Applying ice packs or cold compresses to your lower back can help reduce inflammation and numb pain. Use ice for 15 to 20 minutes, especially after physical activity or during flare-ups. Make sure you wrap your compress and never apply it directly to your skin because it could damage your skin and underlying tissue.
• Physical therapy: Working with a physical therapist can provide personalized exercises and pain management techniques to help meet your specific needs. Learning proper body mechanics and posture may prevent further injury.
• Zero gravity chairs: Zero gravity chairs elevate your legs above the heart levels and distribute body weight evenly, reducing excess pressure on the spine and providing relief for upper and lower EDS back pain. These recliners can be used for relaxation and pain management at home for people of all ages. The benefits of a zero gravity chair for back pain relief make it popular for people living with EDS.
• Supportive mattresses: Investing in a high-quality mattress may help with managing Ehlers-Danlos syndrome back pain while you sleep. Apart from napping in a zero gravity chair, a supportive mattress may improve sleep quality and reduce lower back pain throughout the night. Look for mattresses that provide good spinal alignment and minimize pressure points.

Managing EDS back pain is an important part of improving your long-term quality of life. With a few simple lifestyle adjustments and professional medical guidance, you can find techniques and tools that work to manage your symptoms and minimize discomfort.

Disclaimer: This content is not medical advice. Please consult with your healthcare professional when considering implementing changes to your health or workout routines to ensure it’s compatible with your needs.

Additional Sources

1. https://my.clevelandclinic.org/health/diseases/22325-back-pain
2. https://www.ncbi.nlm.nih.gov/books/NBK538173/
3. https://www.ehlers-danlos.com/heds-diagnostic-checklist/