The Common, Frequently Overlooked Disorder That May Connect All of Your Mystery Symptoms
By Katie Beecher, MS, LPC
Hyper-mobility Syndrome or Ehlers Danlos is considered a rare, genetic disease by most practitioners, but recent studies have found that depending on the variety (there are thirteen) it is estimated that 10 to 28% of the population have it, with a much higher percentage in women. The Ehlers-Danlos website, an excellent resource, lists the frequency as 1 in 3,100 to 5,000. Considering that I pick up the symptoms in my medical intuitive/licensed counseling practice often twice a week or more in people who were not aware that they fit the criteria, and that these people go on to be formally diagnosed, I wouldn’t be surprised if the number of people who have it is even higher.
EDS and Hypermobility Can Be Complicated to Diagnose, But They Don’t Have to Be
The symptoms are so varied and seemingly unconnected that patients are often given multiple diagnoses and shuffled from one specialist to another without receiving much if any relief. Since EDS is a connective tissue disorder and connective tissue is found everywhere in the body, the impact is often extensive. Collagen and elastin are the connective tissue that becomes inflamed because of the condition.
It can take several decades for EDS to be properly diagnosed, even though symptoms can start in early childhood. My daughter and I both have it, with similar and very different symptoms. It took over fifty years for me to receive a formal diagnosis and evaluation, but my daughter obtained these in her mid-twenties. No two cases are alike, which adds to the confusion. The overall symptoms mimic things like Lyme, arthritis, generalized autoimmune conditions (some forms of EDS are autoimmune), lupus, MS or the label of Fibromyalgia. It is essential for practitioners to take an extensive symptomatic inventory and history when attempting to make any diagnoses or conditions like EDS will be missed. The traditional medical system and insurance reimbursement system are designed to diagnose and treat specific symptoms and parts of the body, rather than the whole person.
A partial list of symptoms include:
Migraine headaches
Widespread pain and inflammation
Very loose and very tight muscles depending on location
Frequent dislocations and injuries
Clumsiness and problems with proprioception, knowing where your body is in space
Fatigue
Eating Disorders
Issues with vision
Skin sensitivity and bruising
Vaginitis and interstitial cystitis
Allergies and histamine sensitivity
Slow wound healing and excessive scar tissue
Pelvic floor problems
Pain during sex
Dizziness and vertigo
Reproductive issues and difficult periods
Infertility
Mood disorders
Hip issues
Scoliosis and back pain
Low bone density
Gastrointestinal disorders
Neurodivergence such as autism, ADHD
Sleep disorders
Brain fog
Cardiovascular problems
You do not need to be a connective tissue disorder specialist to diagnose EDS. With a small amount of education, any physician can do it, then refer to specialists for further evaluation and treatment. Awareness of this condition in the general medicine, mental health, and physical therapy is very important to help with identification since there are very few EDS specialists. Traditionally, diagnosis begins with a list of nine symptoms called The Beighton Scale https://www.ehlers-danlos.com/assessing-joint-hypermobility/ . Only four to six of these need to be present depending on age and often more are present in younger individuals since younger people are often more flexible. It is important to take a thorough medical history when diagnosing EDS and genetic testing is also very helpful, though the most common form does not have known genetic markers yet. The Ehlers-Danlos Society can be a very helpful resource for all things hyper mobility and EDS. https://www.ehlers-danlos.com/
What You Can Do:
I have created a letter, written using my credentials as a Licensed Professional Counselor, that is helping people receive evaluation and diagnosis all over the world. I provide it to clients who have symptoms and signs of EDS to take to their practitioners as “ammunition” to help them be seen, heard, and taken seriously. I often suggest that people start with a sports medicine practitioner or Doctor of Osteopathy, since they may be more familiar with the symptoms of EDS, but as I said, you do not have to be a specialist to make an initial diagnosis. Insurance companies and countries with socialized medicine often require that a referral be made to a specialist from a general practitioner, so this letter can be a valuable tool.
EDS is not curable, but in most cases, there are effective methods of treating symptoms, increasing functionality and preventing deterioration. Exercise, targeted physical therapy including stretching, stabilization, and strengthening, supplements for skin, gut issues, and inflammation, psychological therapy to help with anxiety, depression and calming the nervous system, and vision therapy are just a few examples of helpful options. The earlier a person is identified, the quicker treatment and prevention of future complications can begin. I’m far from symptom free but at 58 years old, I am more active and physically fit than I have ever been. Daily movement, including weight bearing exercise has been an important part of this and has helped me reverse the osteopenia I had for almost ten years, which is a common symptom of EDS. It’s never too late to feel better.
https://advancesinrheumatology.biomedcentral.com/articles/10.1186/s42358-018-0008-x
