One of the concerns among EDS providers is the idea that chronic pain is viewed as a disease by many mainstream medical providers and even those in the integrative health and wellness community. The problem is that most providers do not look at the cause of the pain. A good example – my knee may be hurting because it’s dislocating or I have a damaged nerve or I have arthritis. Each of these conditions needs a different treatment. Most providers and the medical field as a whole, approach treating pain as one condition.
One would think that we can help educate healthcare providers by attending these conferences, sharing information and research on the various causes of pain, and the very hard reality that many patients live with several different types of pain at once. For example, the pain I have associated with EDS is more musculoskeletal, achy, trigger point related. Massage and manual therapy help. However, the pain that I associate with CRPS flares is burning, searing, hot spots on my legs, or a sensation as though my bladder is on fire, or that I’m burning from the inside out. This pain is in my tissues and not muscles. With these flares, massage feels like a sharp knife stabbing me and causes the pain (& inflammation) to intensify. And then there’s bone pain, deep in my bones, as if they are bruised or as though I just had surgery. Many times, the pain feels similar to breaking a bone. This pain is usually associated with MCAS. My personal opinion is that all pain is in some way associated with mast cell flares – indirectly or directly.
The main point – the cause of pain matters and treatment is different and not the same. I’m probably naïve in thinking that healthcare providers would be open to this information, but naïvety is bliss. Or, it’s the hope that I hang onto to help our community and expand the network of providers who “get it.”Meditation and other mind-body strategies, including yoga (if done safely and adapted for each person), are proving immensely helpful for all types of pain — at least, in some way.
Thankfully, research into meditation and other mind-body strategies, including yoga (if done safely and adapted for each person), is proving immensely helpful for all types of pain — at least, in some way. Maybe these approaches are not cures, but they can help, even just a tiny bit.