Ehlers-Danlos Syndrome: An Emerging Challenge for Pain Management – By Forest Tennant, MD, DrPH – Editor’s Memo – Sep 2017 – updated Feb 2020
This article was written by a doctor who specialized in chronic pain treatment until the DEA shut him down because he dared treat his patients with effective doses of opioids. He points out how our defective collagen leads to a great deal of pain in multiple bodily systems.
Until recently, Ehlers-Danlos Syndrome (EDS) was a name that elicited little relevance or urgency in the pain world.
Little did I realize that I had been treating more cases of EDS in patients who had been referred to my practice initially for more commonly recognized diagnoses such as fibromyalgia, spine degeneration, and resistant migraine.
A diagnosis of EDS has become more evident as more patients present to pain practices across the United States. In fact, the National Institutes of Health offers an estimate of 1 in 10,000 to 1 in 15,000 people worldwide.
There are some characteristics and clinical manifestations about this condition that all pain practitioners should be well versed in, ready to identify, properly diagnose, and treat.
Recognizing Ehlers-Danlos Syndrome
EDS may be the most common genetic connective tissue disease to cause intractable pain, necessitating high-dose opioid therapy.
This disorder causes progressive deterioration and degeneration of connective tissue in
- internal organs, and
- central nervous system (CNS).
…patients typically reach a point at which their connective tissue begins to fail in its ability and duty to stay attached to and uphold organs including
- spinal cord,
- teeth, and
- peripheral nerves.
As the connective tissue deteriorates, painful micro-tears affect the organs and cause severe pain, essentially head-to-toe.
Consequently, unremitting pain sets in, causing disability to such an extent that patients become bedridden or couch-bound.
EDS Requires Aggressive, High-Dose Pain Therapy
At this time, the most meaningful treatment for symptomatic patients is aggressive, humanitarian pain relief.
Why does EDS require high-dose opioid therapy?
Given the progressive centralized breakdown in connective tissue, patients develop intractable pain that leaves them unable to function. Typically, the need for analgesia rises.
A major reason to screen for, and make a proper diagnosis of EDS is that more encouraging reports are indicating that high-dose opioid treatment with supplemental hormones (as needed on an individual basis) may be an effective means of pain control.
Reports of hormonal treatments appear to slow deterioration and restore connective tissue. In particular, the hormones showing the greatest promise include
- human growth hormone,
- human chorionic gonadotropin,
- oxytocin, and
In addition, patients can be directed to a number of exercises and physical supports that have been developed for EDS, often available through EDS support groups.