What to Do When Ehlers-Danlos Syndrome Makes You Feel Like You're 'Moving Backwards'

Living life with Ehlers-Danlos syndrome (EDS) is often no picnic, but it is the life we live. However, do you wish you could just hand this condition off to a volunteer who would take over the challenges it presents? Clearly, no one would probably like to take on this assignment, but the thought is amusing.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Living with EDS means we were born with defective collagen. Therefore, our ligaments and tendons do not work “normally.” Due to this, much of our body is being held together by our muscles. Our muscles may go on overload because they attempt to take on the duty of the muscles, tendons, and ligaments. So those muscles can end up spasming and may easily cause our bones to subluxate or even dislocate. Although we are only referring to millimeters of subluxation, this movement of our bones can be painful.

If you have Ehlers-Danlos syndrome, you may spend your life in “caution mode” attempting to not cause any shifting of your joints. As you age, your ability to be spontaneous, adventurous, and active may disappear. You may attempt to avoid car jolts and accidents, being hugged, excess bending, and twisting your body. You may try to keep your body safe. You may also work to strengthen your muscles to give them every opportunity to take on this “triple duty.”

But then, something may happen in a split second, and you may travel backwards despite the success for which you have worked so hard. For me, a person unexpectedly joining my swim lane, doing a sloppy backstroke, and ramming into my neck caused about a month of subluxation of my shoulders and ribs. My neighbor’s new dog rammed into my knee — causing my entire body to jolt out of position. Yet another time, a box fell out of the truck in front of us on the highway, and my husband had no choice but to hit it since shifting to the other lanes would have meant hitting a car. This caused my neck to jolt abruptly, which in turn caused weeks of neck subluxations. Despite many manual physical therapy appointments, the shifting of my vertebrate continued to not hold even though the vertebrate was being returned into the correct position in physical therapy. The inflammation from the accident took weeks to calm down and recede — so the healing process was slow.

So why is it that my husband was in that same car and had no lingering problems, but one simple event like this caused me a month of discouragement and health challenges? Those of us living with EDS may have inflammation from the foods and medications we aren’t able to metabolize, so an accident can add to this and cause a longer healing process.

What can you do to try to help this frustration we must have to learn to cope with?

• Try to eliminate as much of the inflammation you already live with by identifying the foods and medications you may not be metabolizing correctly. There are tests to identify both food and medications.
• Try hard to move your body even if you may feel tired and frustrated.
• Learn how to properly strengthen your muscles. Strong muscles can help calm spasms and reduce or eliminate subluxations.
• Try to keep your spirits up after you mourn the added pain you are encountering due to that split-second event that threw you backward.

Remember that you are living in a body that may take longer to return to its physical baseline.

I know all this may be easy to say and hard to do. I feel like I am drowning emotionally each time I experience another setback. I ask “Why me?” I feel sorry for myself. I fight feeling sad, discouraged, and angry for more limitations on my body. But eventually, I remind myself to try to be patient as I wait for the body to settle down. It can be hard work to try to release negative emotions and to work with a more positive attitude, but I can do it.