The day Ann entered my clinic, I had already been practicing pain management for over ten years. A 40-something physical therapist, she had a warm smile, a positive attitude—and chronic pain in every part of her back.
Twenty-five years earlier, Ann had been inspired to go into physical therapy to help her family members who suffered from severe chronic pain to the point of disability. However, to her dismay, upon graduating from her PT program, she found that her physical therapy training did little to help herself, as she began to suffer from pronounced chronic pain in her early 20s. The usual methods for treating musculoskeletal injuries were not getting the job done.
In her late 20s, Ann was finally diagnosed with Ehlers-Danlos Syndrome (EDS). In this often underdiagnosed condition, the body’s collagen is fragile. The most common symptoms leading to a diagnosis are musculoskeletal pain and joint hypermobility, although many subtypes of the condition exist depending on the type of collagen affected. EDS patients may also present with unexplained bruising, cardiac valve problems, ruptured arteries and organs, hip dislocation, kyphoscoliosis, muscle hypotonicity, eye and tooth problems, and more.
Many patients with EDS struggle to get diagnosed. Physicians may assume that patients with hypermobility cannot truly experience meaningful joint and muscle pain since conventional musculoskeletal problems often come with a restricted range of motion. Some may attribute spontaneous joint dislocations to athletic activities or be unaware of the other symptoms that EDS can cause.
Once diagnosed, the result is a mixed bag of good and bad news. As Ann had observed, physical therapy may not completely resolve EDS symptoms. Her primary care doctor thought it had failed to relieve pain. Ann faced an increased risk of pain from her EDS.
Fortunately for me, I knew a doctor who could help. My colleague, Dr. Felix Linetsky, had successfully treated several EDS and joint hypermobility patients with RIT.
RIT, short for “regenerative injection therapy,” a term coined by Dr. Linetsky in 1991, is also sometimes called prolotherapy or sclerotherapy. The procedure involves injecting chemical or biological agents into connective tissues suffering from injury or chronic pain that is not resolved with other treatments. The injections are intended to stimulate the patient’s body to heal the injury in the same way that using adjuvants in vaccines strengthens the immune response to a pathogen.
Some practitioners have taken this one step further by including stem cells, platelet-rich plasma, or fat tissue from the patient’s own body in RIT injections, hoping these biological components will lend an extra helping hand to healing factors and regenerative tissue.
Although the practice of injecting connective tissue to stimulate healing has existed for over a century, RIT or prolotherapy has a new body of evidence regarding its effectiveness. While some studies suggesting its effectiveness have been criticized for flawed methodology, more recent well-designed studies have shown evidence for its effectiveness in treating low back pain, lateral epicondylitis, and Achilles tendonitis.
Many doctors are aware that some proponents have overstated RIT’s benefits and are unaware of studies that have appeared since 2015, suggesting benefits for several forms of musculoskeletal pain that do not respond sufficiently to first-line treatments.
Unfortunately, the use of RIT in Ehlers-Danlos Syndrome has not been rigorously studied. This is a byproduct of an overall lack of attention to EDS, a condition that can be difficult to diagnose and meaningfully treat by the medical establishment.
The use of RIT has not been studied in EDS but has been studied in hypermobility joint syndrome. Like HDS, hypermobility joint syndrome does not have specific genetic markers; some authors consider them the same entity with a strong genetic component.
When the underlying problem is fragile collagen that may not respond well to traditional exercise or physical therapy methods, it can be easy for doctors to feel helpless and not want to think too hard about the patients they feel unable to help.
However, Dr. Linetsky and I believe it is precisely these patients for whom we must explore all potential avenues of treatment.
We have seen more than a few patients in our practices who have expressed profound relief for their challenging conditions with RIT and expressed frustration that conventional doctors often dismiss or even condemn these treatments. Well-known medical institutions like the Mayo Clinic offer RIT as platelet-rich plasma (PRP), bone marrow aspirate (BMAC), and other methods.
When we already know that symptoms are severe and are not responding to first-line treatments, safe treatment may warrant exploration, even if it is not mainstream or widely accepted.
After seeing Dr. Linetsky, Ann began to report improvements in her pain, mobility, and ability to lead an everyday life. She continues to see him well into her 60s.
Having an accurate impact assessment of Ann’s condition and improvement based on the RIT treatments is challenging. There are no large and rigorously controlled clinical studies on the effect of RIT treatment on EDS. Therefore, such clinical studies must be supported to precisely determine this promising approach’s potential for this type of patient. The welfare of our patients greatly depends on the physician’s ability and willingness to consider diagnoses and treatments beyond what may be seemingly evident from initial observation.
Names and details have been changed to protect the patient’s privacy.
Francisco M. Torres is an interventional physiatrist specializing in diagnosing and treating patients with spine-related pain syndromes. He is certified by the American Board of Physical Medicine and Rehabilitation and the American Board of Pain Medicine and can be reached at Florida Spine Institute and Wellness.
Felix S. Linetsky is a pain management physician.