No duh, Doc!

Every EDS Mama has to hear over and over how her child really needs to be exercising.  We bite our tongues from muttering, “No duh, Doc!”  We know that one of the best therapies for Ehlers Danlos Syndrome is physical therapy, however it is another thing to live that out.  Your child is likely severely, severely fatigued.  Only other patients with EDS or any other condition that causes deep fatigue that is not remedied by sleep would understand.  It means a person only has so much energy in a day.  It means showering only when a trip out of the house is planned and it means not showering on the same day as the outing.  It means that as much as a mama knows physical therapy will help condition her child, she may not physically be able to get her child to the therapist.  It means the child may walk into the building for therapy and leave in a wheelchair.  It means she gets the child to the parking lot but the child has no energy left to get into the building for the therapy.  So what is a Mama to do?!?!

Your first challenge is finding a therapist who understands EDS and/or POTS.  Tell the receptionist when you call for an appointment that you are looking for a therapist familiar with EDS and ask how many other similar patients he or she has treated.  The first response you hear when you say you have joint pain is that water therapy is low impact.  We found that water therapy was not a good match for our daughter who also has POTS.  The pressure of the water can cause big blood pressure changes and exacerbate POTS symptoms.  Swimming left her in severe pain in the days following.  Her connective tissue let us know it was very angry with this approach.  Manual physical therapy was very helpful but requires a knowledgeable therapist.  It was both gentle and gave good results.  We tended to avoid chiropractors for fear of over extending joints, especially the neck, and hypermobility meant the adjustments did not last more than a day or two.  Exercises to strengthen the core may be really helpful as many EDS patients express difficulty just holding themselves up.  One piece of equipment which was fairly tolerable was the NuStep, a recumbent type bicycle which also works the arms. It did require some caution when our daughter was in very poor states since the movement of arms can also cause big blood pressure changes with POTS.  After so many years of physical therapy, an EDS patient learns the variety of exercises which are acceptable and helpful and it may not be worth the energy used to leave the house for therapy.  The NuStep company is based in Ann Arbor, Michigan and offers payment plans for home use. 

Walking on a treadmill may be tolerable, however exercising upright can cause blood to pool in the extremities resulting in a passing out episode.  As much as we have not found compression stockings to be helpful on a regular, daily basis, this is one situation that their use might allow a treadmill to be another form of exercise and give some variety.  Similar to the upright exercise of walking, we found that riding a regular bicycle also was not tolerable due to the blood pooling in the legs.  The nice thing about the NuStep is that it puts the patient in a more tolerable position.

There is no one physical therapy approach for every EDS patient.  It takes some trial and error to find what works.  Perhaps exercising at night might help your child sleep better since it is so tiring.  Encourage your child to make goals to exercise several times a week or every day if possible.  As hard as it is to do it, conditioning will help to increase daily stamina.  Doctors will also tell you that exercise helps with pain.  That, my dear friend, is a fine line.  Sometimes any physical activity causes pain for days after, but I can tell you that inactivity creates a downward spiral that you do not want to go down.

And Mama…do not forget about exercise for you!  You must take care of yourself to be able to care for your family.  If you are housebound right now with your child, walking outside in the fresh air even for 15 minutes several times a week can give you not only exercise, but a few moments to yourself.  It can be just one little thing you choose to do for yourself so that you can continue to be a healthy person.

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