Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher

The Spoonie Struggle

Episode 27: Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher

In this episode, Dr. Logan Swisher discusses physical therapy and Ehlers Danlos Syndrome. EDS is a connective tissue disorder that affects the person’s whole body. Symptoms can range from mild to debilitating. Our joints are supported by ligaments, tendons, and muscles. If the ligaments are stretched out like in EDS, a person relies more heavily on their muscles to support them. The muscles work so hard, causing muscle pain. Physical therapists notice in patients with EDS chronic pain and pain doing day-to-day activities. Complications include craniocervical instability (CCI), atlantoaxial instability pain in neck, back, wrists, fingers, and other joints that are used more heavily and moved throughout the day. CCI is extra movement in the top joints in your neck. This can cause compression of the spinal cord, brain stem, vertebral artery, and vagus nerve, so people experience symptoms like headaches, neck and shoulder pain, feeling like your head is too heavy or will fall off, double or blurred vision, orthostatic intolerance, dizziness, vertigo, nausea, and fatigue. PTs should always screen for CCI and AAI if someone with EDS is coming in with neck pain.

The sacroiliac joint is the meeting between the lumbar spine and pelvis. It is not supposed to move, but ligaments hold the joint together, so in individuals with EDS, they have laxity and the SI joint moves.

Stabilization should be the first line or treatment and there should be no stretching, joint mobilizations or high velocity thrusting (especially of the neck). The back and neck pain are treated differently in individuals with EDS, due to the nature of the disorder. She recommends not cracking your neck. Even though it feels good initially, you are cracking an already hypermobile joint and making it even more hypermobile. Stretching is not always a good idea. The muscles are tight for a reason, they are working so hard, developing trigger points, but they are helping to mobilize you and support your joints. Trigger point release and manual therapy help more than stretching. These treatments should be gradually incorporated to see how the person responds. Dry needling could also be of benefit.

Physical therapy in individuals with EDS should be sought as soon as possible. It is helpful to get the education, learn the tools to make pain better, and minimize pain. Know that you will likely be in PT on and off for the rest of your life, which is very helpful in minimizing pain and damage to your body.

Goals for physical therapy should be tailored to the person. The focus should be on what is most important to them, to make those activities safer and less painful. Realistic goal setting is very important. The goal of having no pain is not a realistic one. Reducing pain is more realistic.

Dry needling, manual work, trigger point release, heat, ice, and electric stimulation are helpful in addition to physical therapy exercises. Know that physical therapy is not a quick fix, as there is no such thing as a quick fix for EDS.

Bracing is supposed to give you extra support and take up the slack of whatever isn’t giving you support. It is not supposed to cause muscle atrophy or weakness. Each person is different in how long, how often, and when they need their brace. The pros of bracing include being able to more exercises without as much pain, neuromuscular reeducation, allowing you to engage in more movement and activities. There are braces for most joints. If you don’t have a PT that can recommend braces to you, it can be helpful to see an orthoptist to get fitted properly. Bracing may be trial and error, which is to be expected. Braces may need to be used on a daily basis, which is ok. Make sure the braces fit properly, as it can do more harm than good if the braces don’t fit well.

Physical Therapy First

Serola Belt

Disjointed Book

Living Life To The Fullest With Ehlers Danlos

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