As any HMS patient knows, getting a proper diagnosis can be a long and frustrating ordeal. A lot of patients spend years trying to figure out what is causing their health problems and will often go through a handful of diagnoses before they arrive at the right one. One of the reasons for this confusion is that there is no test – no blood work, imaging, biopsy, etc. - that can definitively prove that someone has Hypermobility Syndrome. There does exist genetic testing for the Classical and Vascular forms of the Ehlers-Danlos Syndrome, but scientists have yet to discover the gene responsible for the Hypermobile type. If your doctor suspects that you might have a form of EDS it can be helpful to take these tests to rule out those other two forms to help narrow down your diagnosis and make sure you are not at risk for life-threatening symptoms such as organ rupture (as seen in the Vascular type).
Because there is no definitive test for HMS, getting a diagnosis can often become a process of elimination (which is costly both emotionally and financially) and depends a lot on the knowledge and experience of the individual doctors you see. Another problem with diagnosing Hypermobility Syndrome is that a diagnosis can’t be made based solely on one’s symptoms. This is because many of the symptoms associated with HMS overlap exactly with other illnesses (like Lupus, Arthritis, Fibromyalgia, Chronic Fatigue Syndrome, etc.) and the range of symptoms that can occur due to HMS is so immense. There is no ‘typical’ HMS patient, every individual is different in both the symptoms they experience and the severity of those symptoms, so taking a checklist of symptoms isn’t a good way to make a diagnosis. What all this means is that even amongst hypermobility experts there is no consensus as how to best diagnose the disorder! There are a few clinical tests, though, that many doctors agree are useful for diagnosing HMS, but none of them alone is sufficient for making an official diagnosis. The most famous of these tests are the Beighton Score and the Brighton Criteria, as displayed below.
| 9 Point Beighton Hypermobility Score | | |
| Ability to … | Right | Left |
| 1. Flex pinky finger backwards past 90° | 1 point | 1 point |
| 2. Touch your thumb to your forearm | 1 point | 1 point |
| 3. Hyperextend elbow backwards past 180° | 1 point | 1 point |
| 4. Hyperextend knee backwards past 180° | 1 point | 1 point |
| 5. Place hands flat on the floor without bending knees = 1 point | | |
| Score one point for each maneuver that you can do (on each side when applicable), if you have a total score of at least 5/9 then you are considered to have generalized joint hypermobility | | |
| Revised Brighton Criteria for Hypermobility Syndrome |
| Major Criteria |
| 1. A Beighton Score of at least 4/9 or higher |
| 2. Joint pain lasting more than 3 months in 4 or more joints |
| Minor Criteria |
| 1. A Beighton Score of 1/9, 2/9, or 3/9 (especially if over 50 yrs.) |
| 2. Joint pain lasting more than 3 months in one to three joints or back pain lasting more than 3 months |
| 3. Dislocation or partial dislocation (a partial dislocation) in more than one joint, or in one joint more than once |
| 4. At least 3 instances of soft issue rheumatism such as bursitis, fibromyalgia, tendon inflammation, tennis elbow, etc. |
| 5. Marfanoid body type (tall, slim, long limbs, arm span is greater than height, small wrists and ankles) |
| 6. Abnormal skin (easy bruising, thin soft velvety-smooth skin, can see veins easily through skin, skin that stretches farther than normal, stretch marks, scars that are a different color and texture than the surrounding skin) |
| 7. Eye signs (droopy eyelids, nearsightedness) |
| 8. Varicose veins, hernia, uterine or rectal prolapse, or a family history of these conditions |
| The patient is considered to have Hypermobility Syndrome if … A. They meet two major criteria B. They meet one major and two minor criteria C. They meet four minor criteria D. They meet two minor criteria if there is a first-degree relative (i.e. a parent or child) who has an official diagnosis of HMS |
As you have probably noticed the tests above are vague, confusing, and tend to raise more questions than they answer. That’s why I, through my own experience and research, have created my own criteria which I have found extremely helpful in recognizing Hypermobility Syndrome in people, whether they are experiencing symptoms already or not. I am not a doctor, so I am not qualified to formally ‘diagnose’ any medical condition, but as a patient myself I have gained a good eye for spotting other people with bodies that look, move, and act the same as mine. I hope these guidelines will help you cut through all the confusion that goes along with diagnosing this disorder and will help you either feel confident that you are on the right track in looking to hypermobility as the source of your health problems or will help you decide that ‘this doesn’t sound like me’ so that you can continue your search elsewhere.
Chelsea’s ‘Star’ Method for Diagnosing Hypermobility
When I am trying to help another patient determine whether they may have Hypermobility Syndrome or some other related or similar disorder, there are 5 main things that I look for (as illustrated by the star graphic below) – generalized joint hypermobility/laxity, evidence of a collagen defect such as abnormal skin and/or a marfanoid body type, impaired balance and coordination, problems with local anesthesia, and a personal and/or family history of common HMS symptoms. No one of these categories is more important than the other, as the star graphic shows it is the combination of these symptoms/physical characteristics that is the strongest indication of Hypermobility Syndrome. It might take some thinking and talking to family members or your doctor about you and your family’s health history, but most HMS patients when they look at this star will say ‘yeah, all of that sounds like me’ even if they never thought to put all those random health issues together. For me, looking at this star was a real ‘aha’ moment, I thought, ‘wow, it all makes sense now,’ and I hope it will be able to do that for you too. Below you will find the star graphic and a more detailed explanation of each point (this part coming soon!).
