The type and level of pain from Ehlers-Danlos syndrome (EDS) can feel different for each patient, ranging from mild to severe. Pain can be widespread all over the body or limited to one area of the body, depending on the type of EDS a person has and the area of the body that is manifesting the pain.
A patient may experience a variety of symptoms associated with EDS, ranging from joint pain and chronic musculoskeletal pain to full-body nerve pain, GI/digestive issues, and constant tiredness.
Although few doctors truly understand Ehlers-Danlos Syndrome (EDS), it is now recognized as causing intractable pain. This pain is sharp, stabbing, tingling, burning, bone-crushing, shooting, or aching, and affected by temperature changes.
EDS is currently classified in a recognized system of 13 different subtypes, but it is our opinion that any classification is a somewhat gray area, as EDS will present differently for each patient. We as humans want to put a label on everything in an attempt to better understand. However, diseases, syndromes, and symptoms do not always follow our rules of classification. The human body is infinitely intelligent, and as such, infinitely complicated. Each case will be unique in its own way.
As it stands today, each of the EDS subtypes has a set of specific criteria that help guide diagnosis and typing. The patient’s physical symptoms and signs will be matched up to the major and minor criteria to identify the subtype that is the most complete fit, although there is substantial overlap between symptoms and distinguishing the EDS subtypes and other connective tissue disorders (including HSDs), as well as a lot of variability.
In addition, to the physical pain, there is a great emotional pain carried by those with EDS or POTS. If you are the sufferer, no one can fully comprehend your suffering unless he or she shares your diagnosis. Your pain and other symptoms are your daily dark passengers, often invisible yet a hell that is all too real.
Very few people understand daily chronic pain, not to mention EDS/POTS. Because EDS/POTS sufferers largely appear normal from the outside (referred to as an “invisible illness”), it can be very difficult for those around them to understand their daily suffering.
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