How to Successfully Use Manual Therapy with EDS

By Ellen Lenox Smith, Columnist

There are two types of physical therapy to consider. The traditional type includes ice, hot packs, ultrasound and exercises. With this type, the physical therapist is not touching you.

But for those of us living with Ehlers-Danlos syndrome (EDS), the second type of physical therapy, called manual therapy, is much safer. You lie on a table for a hands-on approach, and the physical therapist has specific techniques to reduce the muscles spasms and realign the bones through touching the patient. It’s similar, but not the same as massage or a chiropractic adjustment.

In EDS sufferers, when our muscles go into spasm, we feel a lot of discomfort and pain, and our joints can shift out of position, causing what is called subluxations.

Even simple tasks like sleeping in a bad position or picking up groceries can cause this. Our poor muscles spasm easily because they are overworked from taking on the job of our ligaments and tendons, which are weakened by our collagen disorder.

We need to realign the joints and return them to their correct position, which then reduces the muscle spasms.

When this is done by a manual physical therapist or chiropractor, then exercising will not hurt so much. Treatment of the muscles repositions the joints and calms the muscle spasms down.

But you also need to understand that your muscles will return to those spasms if another step is not taken after manual therapy.

You need to do specific exercises to strengthen the muscles that were causing the problem. If you just put the joint back into position without strengthening the muscles around it, you will leave the joints weak and susceptible to the same forces that could pull them back out again. If you strengthen the muscles, the joints will not shift out of position so easily. The exercises should begin as soon as the manual therapy appointment is over.

Also, when you have any cranial or myofascial release work done, the process literally puts your muscles into a calmer, sleeping mode. Before leaving the office, you need to reactivate and wake those muscles back up or you will find your joints will potentially slip back out again.

I went to manual therapy for years and never understood why I kept slipping right apart. I would walk out feeling so relaxed and calm and then, sometimes in the car ride home, things would start to shift out of position. Now I take a few minutes to wake up and reactivate the muscles and find the body will hold much longer.

This is a simple procedure that your provider should be able to show you how to do. It makes all the difference in the world. I recommend Kevin Muldowney’s book, Living Life to the Fullest with Ehlers-Danlos Syndrome for proper guidance on these exercises.

Strengthening the muscles is a must after manual therapy or the spasms will return. If you fail to discipline yourself and do your exercises, you can’t expect your provider to develop and assist you in executing a successful treatment plan.

It reminds me of the time my neck was fused. On day three in the hospital, I received an email of instructions from my surgeon. He clearly stated that he had now accomplished his job with the surgery and it was up to me to get out of bed, start walking, and take on the responsibility of helping myself heal and strengthen. It is often difficult for us to accept that we bear the lion's share of the responsibility in any successful treatment plan, but we do!

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.