Ehlers Danlos Syndrome and the Female Gymnast

Ross Hauser, MD

I have treated Ehlers Danlos Syndrome patients for more than 26 years. I can honestly tell you that this is my favorite condition to treat because of the great symptom relief it brings to patients.

Our office gets many emails focused on the young female gymnast. A mother or father will write to us about getting their frequently injured daughter back to her path of Grade 6 or 7 or 8 even 10 level. Many of the emails we get however, are from parents whose child has already “retired” from the sport and they are now simply looking for pain relief and an end to the chronic dislocations and subluxations. Ehlers Danlos Syndrome Hypermobility type is a challenging problem. A problem that needs realistic expectation of what the disorder is, how it may progress, how it may be treated, and have a prognosis and treatment plan for continuing in gymnastics, if realistic, that can be followed and understood.

Below we will share some stories of patients who were able to return to high level, even National competition. While inspiring and showing that our Prolotherapy treatments (simple dextrose injections explained below) can be effective in returning the gymnast back to his/her sport, realistic expectations must be maintained.

• The gymnast maybe able to return at the same level or at lower level, or they may be able to return by altering their routines and by making adjustments to their training or competitive exercise programs.
• Numerous factors are involved that may prevent the gymnast from returning at all.

What will be stressed in this article is that Ehlers Danlos Syndrome Hypermobility type is a problem of progressive ligament weakening and that Prolotherapy, an injection treatment that targets and repairs ligament instability may be an answer.

A Gymnast’s story Kristle Lowell, Double Mini-Trampoline World Champion

Ehlers Danlos Syndrome Hypermobility type is a problem with ligaments. That is the simplest understanding of what Ehlers Danlos Syndrome Hypermobility type is. When there is a problem with the gymnast’s ligaments, the gymnast’s joints are not strong enough to sustain the force exerted upon them. What can happen is, during a twisting movement for example, a gymnast will dislocate her hip. The stress forces of the twist on her hip were greater than the strength of her ligaments to keep her hip in place.

Kristle Lowell, the 2013 World Champion in Double Mini-Trampoline can dislocate many of her joints. Her story is a common one heard from those suffering from Ehlers Danlos Syndrome Hypermobility type.

In this photo, Kristle Lowell, World Champion in double mini-trampoline, shows how she can dislocate her finger, elbow and shoulder at will. She is a patient of ours who we treat with Prolotherapy to help her manage these dislocations and remain in competition.

If you are a parent of a gymnast, you will recognize that the “special talent of excessive flexibility,” Kristle has, is one your child may have. You also know that this excessive flexibility has helped your child excel at her gymnastics and perhaps do routines and maneuvers that the other children could not.

Kristle suffered her first serious injury in 2014, a severe ankle sprain. Afterward, the ankle would pop and click constantly. The pain was extreme with sprinting, which is a vital component of double mini-trampoline. Sprinting, of course is vital to all floor exercises and vaults. For Kristle, sprinting and landing became extremely painful, enough so that the injury precluded her from competing at the 2014 World Championships. It was during this time that she was diagnosed with EDS. Kristle received corticosteroid shots, which provided temporary relief, however, the ankle pain and instability progressed. She tried physical therapy, though it did not help. The ankle pain and clicking were constant. Like many with EDS, she lived with the fear that at any moment her ankle would sublux and possibly dislocate. Sometimes, just the simple act of getting out of bed would cause the ankle to move out of its normal location. Depression started to set in.

Kristle posted some of her experiences on the EDS facebook support group page. We are going to take some excerpts from those posts.

When I first got diagnosed I did what everyone does. I turned to the Internet. I was determined that I was going to find a way to beat this. There is no known cure for EDS but it doesn’t mean I cannot hold out hope.

I am determined to stay an athlete no matter what and determined to use Ehlers-Danlos syndrome to my advantage. I have to admit the added flexibility in my sport can be a very good thing. The more I exercise, the better I feel. If I take time off I am in excruciating pain. My body is naturally leaning me towards staying active.

The hardest part of going to competitions is sitting on an airplane; having to sit still that long hurts so badly. I’m sure flight attendants have gone home to say “you will never believe what I saw today!” but I will do splits and contortion skills on the plane to keep moving. Travelling is the hardest part of EDS for me. I have been injured more by luggage then by flipping through the air.

After reading that EDS affects ligaments, I came up with the idea that maybe I need to train my muscles do what my ligaments cannot. I start weight training and bungee training; low level weights with high reps. I am stronger now then before I was diagnosed.

Staying active has been my saving grace. When everyone is celebrating for winter break I am dreading it, knowing not having access to a gym for two weeks means I will be in pain.

Kristle came to us for an evaluation. Upon physical exam and MRI review, it was clear that she had significant ligament damage in both the front and back of her ankle. Her most significant instability was in the posterior ankle. As her physician, I was confident Prolotherapy could help her. She received her first Prolotherapy session in March of 2015. Over the course of the next weeks, she reported a tightening of her ankle to the point where it was no longer dislocating.

She was able to return to training full-time. After Prolotherapy, she came in second in double mini-trampoline at the 2015 USA Gymnastics Championships, which are the national championships for trampoline/tumbling, acrobatic gymnastics, and rhythmic gymnastics. She qualified for the U.S. World Championships Team for the 2015 World Championships in Odense, Denmark. After the national competition, she came in for one more Prolotherapy treatment to help tighten her ankle ligaments so they could withstand the rigor of training for the World Championships.

Says Kristle: “Nothing was working in terms of normal treatment. After exhausting all conventional means of treatment I turned to prolotherapy. It was the best decision I’ve ever made and it’s a major part of the reason I can still bounce today.”

Since receiving Prolotherapy, Kristle continues to receive both National and International competitions including placing first in the 2017 Winter Classic in Battle Creek, Michigan and first in the 2016 USA Gymnastic Championships in Providence, Rhode Island.

Pain and dislocations are from ligament weakness

The ligaments are strong bands of tissues that attach one bone to another bone. In this role the ligaments become the primary stabilizers of the joint, they hold the joint together and prevent dislocation.

When the ligaments are healthy, joint movement is healthy, pain free, and non-damaging. When the ligaments are suffering from degenerative wear and tear or excessive looseness or laxity that prevents the ligaments from holding the bones together, the ligaments loose their ability to control proper motion of the joint. The joint begins to move in a destructive manner. When this occurs the ligaments cry out and you feel pain.

• Most of the nerve endings that give pain in the joints are in the ligaments.
• When a patient comes into our clinics with a painful joint, we are attuned to the fact that the actual pain is stemming from the nerve endings in the ligaments. The articular cartilage itself has no nerve endings.
• So we listen to what the joint is telling us:
  • There is a problems with a stretched out ligament.
  • Patients with Ehlers Danlos Syndrome, joint hypermobility, or joint instability, will have pain from the ligament’s stretched out nerve endings which are sending pain signals to the brain.
• All joint instability has its origins in incompetent, malformed, insufficient, or incomplete collagen.
• Collagen is the building block of ligament tissue
  • Ligaments are made up of Type 1 collagen.
  • Genetic mutations that cause the various types of Ehlers Danlos Syndromes do not involve Type 1 collagen, it involves Type 2 collagen, Type 5 collagen, Type 6 collagen.

Muscle Spasms and Muscle Syndromes from ligament injury

When ligament damage causes joint instability and destructive joint motion, muscles spasm to try to stop the joint from becoming hypermobile. We call this ligament muscular reflex

• Ligament muscular reflex
  • When a ligament is damaged by acute injury or degenerative joint motion, or both, the damaged ligament sends signals to the surrounding muscles for help. What kind of help? Help stabilizing problems of hypermobility. How do the muscles do this? Spasms, the contracting of some muscles on the side of instability and relaxing muscles on the other side to offer a counter balance. This delicate balance of contracting and relaxing helps remove the burden from the damaged ligament and is in fact part of the natural healing process of ligament injury. It also makes the muscles work harder and they themselves can fall prey to overuse syndrome.
  • This is why people with ligament damage and joint instability complain that their muscles hurt.
  • This is why athletes with Ehlers Danlos Syndrome typically suffer from quadriceps problems, hamstring problems, chronic tendinopathy, iliotibial band syndrome, patellar tendon dysfunction, gluteus medius tendinosis. All of these diagnosis can come from joint instability.

Our research Prolotherapy and Ehlers-Danlos Syndrome (hEDS) and Joint Hypermobility Syndrome (Hypermobility Spectrum Disorders (HSD)).

In 2013, I along with Hilary J. Phillips published a paper titled: “Treatment of Joint Hypermobility Syndrome, Including Ehlers-Danlos Syndrome, with Hackett-Hemwall Prolotherapy.” The full research can be downloaded as a PDF file – Treatment of Joint Hypermobility Syndrome, Including Ehlers-Danlos Syndrome, with Hackett-Hemwall Prolotherapy.

Prolotherapy is an injection of a simple sugar, dextrose. Dozens of research studies have documented Prolotherapy’s effectiveness in treating chronic joint pain.

These were some of the key points we wanted to emphasize to the medical community and patients.

• Education and lifestyle advice, behavior modification, physiotherapy, taping and bracing, exercise prescription, functional rehabilitation and pain medications offer some symptomatic control, they do little in regard to curbing the progressive debilitating nature of the diseases.
• The excessive joint mobility with its subsequent joint degeneration and multiple joint dislocations, can then lead the individual to seek out surgical intervention, which has suboptimal results in the hypermobile patient population versus the normal population. As such, some patients with Ehlers-Danlos Syndrome (hEDS) are seeking alternative treatments for their pain, including Prolotherapy.
• Prolotherapy offers great hope for those with symptoms from generalized hypermobility because it is designed to successfully treat the ligament and tissue laxity that accompanies Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.
• Prolotherapy works by initiating a brief inflammatory response, which causes a reparative cascade to generate new collagen and extra cellular matrix giving connective tissue strength and ability to handle strain and force.
• Prolotherapy has a long history of success treating ligament injuries, including patients with joint hypermobility.
• Studies on Prolotherapy have shown that it eliminates chronic pain even in those patients who have been told by their medical doctor(s) that surgery was the only treatment option for their pain.

Some of the rationale for using Prolotherapy for patients with Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome include that it has:

• a high safety record, is comprehensive (all or most joints can be treated at each visit),
• is an outpatient procedure,
• is cost effective (compared to surgery),
• pain relief is often quick,
• and it provides joint stabilization.

Perhaps its greatest asset is the fact that this one treatment modality can handle most of the painful musculoskeletal conditions that occur in individuals with Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.

• Surgery
• NSAIDs
• Cortisone Shots
• R.I.C.E.