Are you are afraid of falling? Or how as movement, exercise or physical therapy may increase your chronic pain associated with Ehlers-Danlos Syndrome? One of the largest contributors (not the only) to how “severe” our own personal case of EDS (or Hypermobility Syndrome) is, stems from fears of movement and/movement causing more pain. Kinesophobia is the fear of movement & Kinesiophobia is the fear of movement/activity/exercise/PT causing more pain or increasing chronic pain. And these fears have been found to be a large contributing factor to making EhlersDanlos symptoms & issues worse. That doesn’t mean that our fear isn’t based-upon real issues or that our pain isn’t real, but ours fears of movement and the fear of pain, is making us worse. THIS is “The EDS Spiral.”

So, what does the EDS Spiral really look like? Read this:

You got hurt from a fall or other injury, or maybe you were clumsy as a kid (and many of us were).  You start fearing movement and the exercise that keeps your muscles strong; however, our strong muscles are crucial because they are what holds us together, because our tissues cannot.  So, what happens?  You are afraid of dong “too much” for fear of hurting your self and you do less, are less active and sit around more.  The result?  Muscles begin to atrophy .. big ones and small ones. Even ones you never knew you had.  You then start having issues with things you’ve never had issues with before .. heck, even standing-up starts becoming a problem. You feel more aches and pains just when you have to go to the bathroom.  You neck even starts feeling like it can’t hold your head-up because you have a headached from your head feel so heavy and so foggy.  You are tired. More tired than before and everything is just such an effort.  You start feeling sad, isolated and lonely.  Not one understands and those that do are on an internet support group or even a local support group, but it just takes so much effort to get there.  But, then understand. The only ones who understand.  So, you sit more, so you can talk to the only people who “get it,” but now you’ve noticed that your hands are hurting from typing, your shoulders are feeling more weak and not in place and your back hurts.  And it hurts A LOT.

You are told to go to physiotherapy for your bad and your neck and maybe even your legs, but that hurts too, like is really painful.  Too painful.  Painful that you’ve never felt from exercise before… “Why is this happening? What is going on?  The physical therapy must not be good or the PT did something wrong.  He says to do these exercises at home, but they hurt too much and I’m just too tired.”   

You go to eat and now you feel nauseaus and you are having some strange pain in your stomach. You think, “I’ve had reflux before, but this is different.  My stomach hurts. I’m bloated and it’s uncomfortable to stand-up.”  

You have also noticed that you have some other things like rashes on your skin and your skin seems dry, dull and itchy … It looks old, like I’ve aged 10 years in just 6 months. And I have these dark-circles under my eyes. God.. what the heck is going on?  You go post a question in the group of your friends who “get it.” The say it’s POTS caused by Dysautonomia and Mast Cell Activation Syndrome. Two more issues?? 

An email from your physician states that all labs check-out, but you are a bit nutrient diffiencent and to make sure you are eating properly, getting rest and exercising.  Right… how the heck can I do that when I don’t have the energy to shower and everything I eat is causing me an issue?   

You decide to lie-down because you need rest and your doctor told you to rest. Your friends have told you that we need to be gentle with our bodies, so you rest and decide to read through posts in your group. You read about a few people who also have similar issues with horrendous fatigue like you and they have Chronic Fatigue Syndrome. Hmmm… maybe I should ask my doctor.  I will send him an email later. So, you keep reading through posts.  Your friends can’t find anyone to help and they are also sad, but even more sad and say that they have tried everything to get better. Will that that be me? I do feel all that they were saying and I just seem to be getting worse. 

Sadness, isolation, lonliness, more pain …

I don’t want to live like this. My body feels like it’s falling apart. I’m so tired I cannot get out of bed. Even moving a muscle is exhausting and painful. No one understands and no one seems to be able to help. I don’t know why this happened and I just don’t know how long I can go on this this. I just want to give-up.  

The EDS Spiral … it is real. And it is scary. And it does happen fast.

When one body system is not used as it should, such as the muscluar system, other body systems can start spiraling like a domino effect. The autonaumic nervous system, which causes POTS gets worse, pain increases, GI issues get worse, fatigue worsens and becomes chronic, our immune system starts to have more dysfunction …the list could go on.

The EDS Spiral is a cycle and it doesn’t stop until you stop it. No one, no pill, no doctor can do it for us. We must do it for ourselves, or at least hault the cycle from continuing to spiral.  With help, love and support of those close to us and healthcare professionals, we CAN find ways to stop it; however, it begins with the beleif that we CAN.

The good news? You can stop the spiral and you can climb out. There are ways that we can help ourselves, but we are all different and what works for one of us, will prob not work for the next. It takes time, discipline and belief, but it can be done. No, that doesn’t mean EDS will be “cured” or that you will be free from any issues, but you CAN make incredible strides.

This post is the 2nd part to a 2 part series on what I call, “The EDS Spiral.” To read part 1 of “The EDS Spiral,” click here.

To read about how sitting too much causes chronic pain, muscle atrophy & further propels the The EDS Spiral downward, click here to read “My butt is flat! Why sitting too much causes chronic pain, muscle atrophy and problems moving around.

For answers to common questions about EDS & Exercise, click here.

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Left Pic – Post baby #1, post “body rebuild” #3 & 3 years after I was dx with EDS.

Middle Pic – Midst most recent EDS Spiral post 2 back to back pregnacies, immense life stressors and literally nothing holding me together. I really thought “This is it. I was wrong all along. I cannot fight this. EDS is stronger than I thought I was.”

Right Pic – Post “body rebuild” #6 & speaking at the 2014 EDNF Conference in Texas on the importance of living a healthy and active lifestyle to the group of teens.