02/09/2026
September is National Pain Month. Pain is something that many people living with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) experience daily, and management of pain can often be trial and error, a long-term goal, and a process that requires a toolbox of pain relief methods that work together.
"To help manage pain, a whole-person approach is necessary." explains Dr Johanna Theron, of the Community Chronic Pain Service, Kent Community Health NHS Foundation Trust. "It is often very difficult to accept that there is no single treatment that could totally alleviate or cure the pain but if we address it from multiple different angles, we can often achieve a noticeable reduction.
"To start to have more control over your pain, it is helpful to understand a bit more about the types of pain and what you are experiencing.
Acute pain is the pain experienced during an insult or injury to the body (for instance a bone breaking, a joint dislocating, burning yourself) and is a message to protect. Most often for acute pain, there is a cause that we could attempt to treat or remove.
Chronic pain (or persistent pain) is when the pain persists past the expected time of healing, usually beyond three to six months. Chronic pain is complex, dependent on and influenced by a multitude of factors.
Changes can occur in the brain and spinal cord, with ‘wind-up’ or sensitization taking place. There is not a simple relationship between how severe a condition is and the amount of pain we feel. It is closely linked with the areas of the brain where mood, appetite, sleep, threat and fear are also being processed and the same neuro-modulating chemical messengers play a role.
💊Medications that act in these areas could be helpful but the person with pain can also modulate these pain pathways by engaging with various other strategies.
Pain can be further divided into nociceptive pain (more “direct” pain experienced in the affected area, for instance an inflamed joint) and neuropathic pain (generated by an issue within the nervous system itself and usually along the distribution of a nerve pathway; for instance a compressed nerve or small fibre neuropathy).
New definitions also talk about ‘primary pain’: pain generated without any obvious cause, like fibromyalgia, or far exceeding what would have been expected for the underlying condition, and ‘’secondary pain’; where there is an underlying cause for the pain (whether treatable or not). These distinctions are helpful when deciding on medications to use and when judging their effects."
Have you found a medication helpful as part of your pain management toolbox?
