The EDS Spiral – it is real, devastating, but you can climb out.  

As I sit here and type this, I am thinking…. “This is hard. Really hard. How do I explain all the information that’s in my head, in a way that helps people see the connections that I see? How can I help them feel empowered & believe that there ARE ways that we CAN help ourselves?”  Truth is … no one has coined the phrase “The EDS Spiral.” I do believe that medical research on Ehlers-Danlos syndrome supports this idea, but a small piece of the puzzle has been missing that would help explain the reality “The EDS Spiral.” Again, no one has studied the idea of a “spiral,” but I am attempting to connect the dots to try to illustrate it.  Well, I *think* I found it, “the missing link,” and it’s probably been there for a while.  In my determination to get the Strength/Flexibility/Health/EDS website launched, I recently came across a presentation from Mt. Sinai that seems to provide the “missing link” I’ve been looking for. It may be information that has been known for a while or possibly discussed before, but I am beyond thrilled to come across it.

Here’s what I found:

One slide of the presentation discusses maladaptive behaviors in EDS.  Maladaptive behavior means, “In contrast, maladaptive behavior is a type of behavior that is often used to reduce one’s anxiety, but the result is dysfunctional and non-productive. For example, avoiding situations because you have unrealistic fears may initially reduce your anxiety, but it is non-productive in alleviating the actual problem in the long-term. Maladaptive behavior is frequently used as an indicator of abnormality or mental dysfunction since its assessment is relatively free from subjectivity. However, many behaviors considered moral can be apparently maladaptive, such as dissent or abstinence.”

These Maladaptive Behaviors are:

1. Pain Catastrophizing – meaning we can make pain worse and/or exaggerate it.

2. Fear of Pain – obviously, because EDS is a chronic pain condition

3. Kinesophobia – defined as, “is a pathological fear of movement, either of oneself or other things.[1][2] The fear is suffered due to the feeling that a person could lose control or collide with other people or things, which can cause injury.[citation needed] Amaxophobia, the fear of riding in a car, is a branch of kinetophobia.  Sufferers of kinetophobia may be afraid of experiencing vertigo.[citation needed] The fear can be managed by talk therapy.  The term kinetophobia is derived from the Greek kinein “move” and phóbos “fear”.”  Kinesophobia can also stem from the pain felt after movement or exercise, which then causes a real fear of moving again. (ie. Kinesiophobia is the fear of movement/activity/exercise/PT causing more pain or increasing chronic pain. Kinesiophobia falls under Kinesophobia).

Evidence to support that those of us with EDS have a fear of movement, as well as a fear of movement causing, even more, pain or that pain from movement/exercise/physical therapy is supported with these sources:

1. Some evidence that it does not correlate with actual intensity of pain or quality of life scores (Biomed Res Int. 2013; July 2014).

2. It has been proposed that it is a major prognostic determinant in EDS (Curr Pain Headache Rep 2009, 13;593-600).

These fears have been found to be a large contributing factor to making Ehlers-Danlos symptoms & issues worse. That doesn’t mean that our fears are not based upon real issues or that our pain isn’t real, but ours fears of movement and the fear of pain, are making us worse. THIS is The EDS Spiralas I like to call it.

So what does The EDS Spiral look like? To read the 2nd part of the 2 post series, click here.