Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
EDS affects joints, muscles and tendons as well as nerve attachments. Connective tissue is present throughout the body, connecting parts of our body to each other. The body’s corrective response often results in symptoms such as fatigue, heaviness, overload and pain. Affected nerves, on the other hand, can lead to numbness, stiffness and a numb feeling.
Pain is experienced differently by everyone and even caregivers struggle with this. I have experienced a lot of pain in my life. I have done heavy work for a long time, with heavy tools and with heavy equipment, where minor injuries often occur: cutting off a fingernail, breaking a toe, burns, etc. In short, I have a reference in terms of pain experience.
I described EDS complaints as: heavy limbs, stiff joints or overloaded muscles. Not so much as pain. Pain was not that nagging feeling, pain was blood, a blow, stab, bump or burn.
Pain specialists often have you indicate your pain on a scale of 1 to 10. Pain levels of 1 or 2 are almost never indicated. We simply do not experience this as pain, but as discomfort or normal. A pain patient will of course not quickly go to a pain consultant with a pain level that he himself indicates is level 1 or 2 on a scale to 10, but if a pain level of 1 or 2 persists chronically, slowly worsening to perhaps 3 or 4, with peaks for bad days, then something is wrong. Then someone with complaints must be able to draw a line between what is still a ‘heavy feeling’ or ‘overload’. Chronic pain, even if it is 0.5 on a scale to 10, must be indicated to someone as pain. You can live with it, yes, but it drains energy from your body.
Because I had constant bladder pain, the pain in my joints and limbs was also pushed to a deeper level. If pain is focused in one place in the body, it is switched off elsewhere.
Not recognizing my EDS pain has led to me not understanding complaints and my body, and as a result I could not explain my complaints to care providers and did not receive the help I needed for too long. My advice: listen very carefully to your body.
Living with Ehlers Danlos Syndrome 