Chronic pain from EDS is not typical chronic pain
This description of the pain I get from having EDS is an example of how an individual with EDS can be affected by pains from several different sources at the same time.
My pain from EDS is not typical chronic pain. It’s a chronically recurring series of acute pains caused by structural defects in my body composition. These pains are so ubiquitous and frequent that they blend together into days and weeks of pain.
EDS pain is thus acute (def: severe, critical, drastic, dire, dreadful, terrible, awful, grave) AND chronic (def: persistent, constant, continuing, ceaseless, unabating, unending):
Chronic Acute Pain
This kind of pain arises from a flaw in my collagen production, which makes all my connective tissues defective. Instead of being wrapped and held in place by connective tissues that are strong and tight, my body parts are poorly held together (and kept separated) by weak, loose, or damaged tissues.
This looseness allows bones and organs to drift from their proper locations, igniting all kinds of dysfunction and pain. The most obvious and frequent is joint pain when bones aren’t aligned properly. This happens not only in the obvious places, like knees and wrists, but also in joints of the ribs, fingers, and toes, which can be just as disabling.
Holding myself together
Because of my tissue laxity, I have to expend a great deal of muscle energy just to hold myself upright all day. Most people’s joints are held in position by the tension of connective tissues (ligaments, tendons) but I have to make a conscious effort to use my muscles instead.
So I have to “hold myself together” using muscle strength since I can’t “lean” on my tendons and ligaments, which will just stretch.
I’m like a string puppet with slack threads.
Gravity: a force to be reckoned with
In any position, gravity eventually squishes my internals, like bones or intestines, together harder and harder until I move into a different position and start over. I must fidget constantly and, by the end of a day, remaining upright can become difficult, painful, and exhausting.
This means I have to maintain muscle strength or risk even more pain. However, exercise contracts muscles, which pull on tendons, which over-stretch and suffer micro-tears, which accumulate to cause even more pain. It’s very hard to find the balance between painful exercise and painful weakness.
My most common pain is from countless small muscle spasms from pinched nerves or muscle strains from “holding on” too hard. The spasms occur anywhere a misalignment entraps nerves, and from the spine, these can radiate far into the limbs. This can cause a constant fiery burn or sudden zaps of intense pain when my movement affects the muscle.
My most problematic joint is my sacroiliac joint (where the spine latches onto pelvis) with its web of ligaments. It is the only skeletal linkage between the upper and lower halves of the body, so this joint handles huge amounts of stress.
With the ligament laxity of EDS, misalignment is common and frequent. Pain radiates not only into my low back, but into my hips, thighs, pelvis, and anywhere in the lower abdomen.
Body chemistry problems
In addition, flaws in cell tissues can disrupt the transfers of chemicals into and out of individual cells. One effect of this can be generalized muscle pain in response to exercise.
Upon exertion, my muscles burn as though I’d climbed Mr. Everest, even if I’m just climbing a flight of stairs. After a day of physical activity using particular muscles, I am struck with “Delayed Onset Muscle Soreness”(DOMS) of unbelievable severity the next day or two, making it hard to move much at all.
Besides the pain from misaligned joints, I also suffer from occasional severe visceral pain. This can be caused by nerves pinched in the spinal canal, distension of the intestines, or some other internal dysfunction, which causes pain that does not ease even if I lie down for hours.
Headaches and a pain in the neck
EDS headaches are common for me too. These can be caused by my loosely held together cervical spine, which can develop “kinks” that disrupt the flow of cerebrospinal fluid (CSF). These can cause wide fluctuations in the intracranial pressure and lead to headaches if the pressure is too low or too high.
Misalignment of the cervical spine can also pinch nerves and cause the small muscles in the face or skull to spasm. These headaches generally ebb and flow continually for over a week until whatever was causing them changes.
Perhaps the strangest (and most telling) quality of my EDS pain is that it moves from place to place. I was showing my doctor where my hip pain was and suddenly realized it had been on the other side the previous day.
I would have thought I was imagining things if I had not been writing down my symptoms every day. When triggered by my movements, joints can shift into and out of alignment, cause excruciating pain for minutes, hours, or days even while appearing completely normal.
Pain rules my days
My pain determines my days because I cannot predict or control how much and what kind of pain I will have, or whether I will be able to venture beyond the couch on any given day. When I schedule an activity, I can only hope I’ll be able to attend.
Living with the ever-present and ever-changing pain of EDS is frustrating and discouraging. Pain suddenly appears in a joint one day, then disappears the next day, replaced by a new pain somewhere else, perhaps overlapping with a muscle spasm in yet another spot, and when the new pain finally fades, a headache sets in.
I wonder how many other patients experience this category of chronic pain, which is daily and frequent rather than constant.
In addition to the pain, there’s the deadening fatigue, making me sluggish, like a bag of wet cement, heavy and thick. I feel like much of it comes from having to use muscle energy to hold myself upright all day instead of being able to “lean” on tendons and ligaments as normal people do.
The chronicity of pain itself causes fatigue. With the body’s pain alarms stuck on, our energy is drained by a nervous system that remains in a constant state of emergency arousal and exhausts our endogenous opioids. (See Role of Endogenous Morphine and Nitric Oxide in Pain Management and Mu Opioids and Their Receptors)
Our bodies struggle to dampen pain by deploying our endogenous opioids, but those are used up faster than they can be replenished as the pain continues.
Because EDS pain begins as countless tiny acute injuries, opioids are extremely effective for this kind of pain.
Summary: EDS pain is unique
- Results from both too much or too little movement
- Any movement that becomes repetitive becomes painful
- Can move from one part or side of the body to the other
- Can appear and disappear spontaneously
- Results in a condition of Chronic Acute Pain