What is it?
Ehlers-Danlos Syndrome (EDS) is a group of genetic conditions that affect the body’s connective tissues, such as skin, joints, and blood vessels. The most common form is the hypermobile type (hEDS), often associated with widespread chronic pain.
Why Does it Hurt?
Pain in EDS can be caused by several factors:
- Musculoskeletal pain due to joint instability or repeated trauma
- Myofascial pain (trigger points)
- Neuropathic pain (nerve issues)
- Headaches, neck pain, abdominal or pelvic pain
- In some cases: fibromyalgia and central sensitization
Pain can start as early as childhood and often worsens over time, affecting quality of life. Some patients may also experience mood disorders, anxiety, or chronic fatigue.
How is it Treated?
Pain in EDS is complex and requires a multidisciplinary and personalized approach:
- Physiotherapy
To improve joint stability, posture, and daily functionality. It is a fundamental part of treatment.
- Psychotherapy
Cognitive-behavioral therapy (CBT) can help manage fear of movement (called kinesiophobia) and chronic pain.
- Medications
- Paracetamol, NSAIDs, COX-2 inhibitors (with caution)
- Muscle relaxants for muscle spasms
- Antidepressants or anticonvulsants for neuropathic pain
- Opioids may be used only for acute episodes and with extreme caution
- TENS
- A small device that stimulates nerves through the skin with mild electrical impulses.
- It can help reduce pain by modulating pain signals locally, safely, and non-invasively.
- Interventional techniques
- Trigger point injections
- Peripheral nerve blocks
- Radiofrequency ablation
- Peripheral nerve stimulation (PNS): in some cases, it has improved shoulder or knee pain
Attention
- People with EDS may have slow healing and a higher risk of complications after surgical procedures.
- Pain management requires patience, education, and active patient involvement.
- Each patient is different; the treatment plan should always be tailored to their needs.