Basics of EDS Part 4

Hello, Zeborah Dazzle, PT, WWF here. I am the spokes-zebra and patient educator for Good Health Physical Therapy and Wellness. As some of you know, while I am a physical therapist who treats all kinds of problems, including all kinds of bone and muscle problems, my special interest is hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD). Sometimes it is wise to pause and go back to basics. That is what I will focus on with this post.

How are the laxities caused by HSD and hEDS Treated?

As we discussed in our last post, many of the effects of HSD and hEDS are on skin and joint laxity. While lax skin may not cause a lot of pain, lax joints often do. Medical doctors that we work with frequently rely on two approaches to help patients with these diagnoses: medications or supplements to help manage pain and physical therapy.

In physical therapy, while there are many variations on how we do this, our approach overall is to seek to restore balance within the body. More specifically what that means is to help get the joints back in a normal alignment, assure that the tissues are in balance around the joints allowing normal movement and strengthening to help keep the joints strong and stable.

We rely on both exercise and manual therapy to achieve strong, stable balanced joints and movement. Oh, and since our job as physical therapists is to help people to move and function better, we also bring in a lot of teaching: how to protect joints; tips and tricks for conservative management of pain; and how to recenter a joint which has gone out.

As we have also already discussed, the symptoms for both HSD and hEDS are on a spectrum, with some people having very few and some being challenged by a great deal of debility. So too then, restoring strength and balance around the joints for some patients is a quick, easy process, and for some a slow and gradual journey toward health.

This said though, we strongly believe in the potential of all of our patients to achieve a higher level of function.

How are the associated problems of dysautonomia/ POTS and mast cell activation treated?

Accompanying HSD and hEDS, for most patients, are isolated symptoms or full syndromes involving the involuntary nervous system, and/ or mast cells. As we have discussed, an imbalance of the involuntary nervous system is called a dysautonomia; this imbalance can reach the level of a syndrome known as POTS (postural orthostatic tachycardia syndrome). Most patients with HSD or hEDS have at least a symptom or two of dysautonomia. Mast cells are front line sentinels in the tissues of the body monitoring for wounds, foreign bodies, and infections. When they are triggered by a trauma or a foreign invader, they release chemicals called mediators which cause inflammation. Connective tissue disorders can set both the involuntary nervous system and the mast cells on edge, so they are more easily triggered.

Both dysautonomia/ POTS syndrome and mast cell imbalance (called mast cell activation syndrome) have treatment approaches which involve conservative interventions as well as drug-based treatments.

Overall, the conservative approaches for dysautonomia/ POTS involve methods to: help keep the blood from pooling in the legs which causes dizziness, blood pressure drop and rapid heartbeat; emphasis on hydration with extra electrolytes since patients with dysautonomia frequently do not absorb and retain electrolytes well; and finally, gradual progression of exercise. If conservative measures alone do not restore balance, cardiac medications may be prescribed usually to help support blood pressure and/ or to moderate heart rate. There are several medical specialties skilled in managing POTS. Many of our patients have worked successfully with cardiologists, heart doctors.

The conservative approach for Mast Cell Activation Syndrome (MCAS), is first to identify factors which lead to flare ups. Sensitized mast cells may be easily triggered to release their inflammatory chemicals by both emotional and environmental causes. While the list of common triggers is long, each patient’s particular triggers are unique to them. These can include, strong emotions, stress, excessive heat or cold, molds, pollution, specific chemicals, and very often specific foods. Patients very often already know what kind of weather, or chemicals or foods make them feel bad. For some patients, additional testing for sensitivities or elimination diets may be helpful. When additional help is needed to identify triggers, working with a functional medicine physician and/ or a naturopathic physician can be very helpful.

There are a number of supplements which can be helpful with MCAS and medications too. The focus of treatment are supplements or medications which make the mast cells less likely to release inflammatory chemicals or which reduce the amount released. Many of the medications used for this purpose have been in use for many years and are over the counter. Regardless, it is important to work with a physician to find the right supplements, medications, and dosages. Most of our patients work quite successfully with their primary care physician for this.

In coming blog posts, we will look more in depth at POTS and MCAS and we will discuss a topic requested by our office staff – insurance benefits and helping the helpers help you.

Until then, Cheers! Zebbie

P.S. More information is available at the Ehlers-Danlos Society website. I particularly like this downloadable PDF overview:

Thanks to Dr. Mark Melecki, PT for his assistance in writing this blog. (It is very challenging to type with hooves rather than fingers. Thanks Mark.)