One of the hardest parts of EDS is the fact that it is so difficult to detect. There are a few visible signs, though, and I mention them here for reference. Most of what happens from EDS, however, is underneath the surface. Since, I had to find my own path to diagnosis, I learned quite a bit about the invisibility of the syndrome and figured it might be easier for those also searching for answers to know what all is involved.
There is something called a comorbidity rate, which is a fancy medical term for the presence of more than one chronic illness in a patient. When I was first sent to doctors, I was told that it was either a myriad of diseases (because one disease couldn't possibly cause all of these symptoms) or it was in my head. (Unfortunately, most doctors wanted to believe it was in my head...but, silver lining: If they didn't I wouldn't have been able to learn everything for myself and share it with all of you!) The truth was that EDS can be the root cause underneath a lot of other syndromes. Below are some of the ones I have been officially diagnosed with. (Others are still being tested.) (See here for a fuller list of all possibilities.)
- POTS: postural orthostatic tachycardia syndrome-the inability for the body to control blood pressure or heart-rate after a standing. This results in fainting, falling, and rapid heart-rate after standing.
- MCAS: mast cell activation syndrome-when mast cells inappropriately and excessively release chemical mediators. This results in a variety of symptoms depending on which system the cells activate in. (See Figure 1 below.)
- ME/CFS: myalgic encephalomyelitis/chronic fatigue syndrome-characterized by profound fatigue, sleep abnormalities, pain, and other symptoms that are made worse by exertion. In other words, our poor bodies are tired!
- Dysautonomia-an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System (ANS) controls the "automatic" functions of the body that we do not need to consciously think about. In other words, heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. (See Figure 2 below.)
- Insomnia- trouble falling asleep or staying asleep. This can be due to pain or due to hyperadrenergic response. It either hurts too much to sleep, or our body is releasing an excessive amount of adrenaline that keeps us awake. (See Figure 3 below.)
I hope that some, any, or even all of this information helps you to better understand what Ehlers-Danlos Syndrome is and how it affects the body.