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How To Get A Diagnosis Of Hypermobility

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To get a diagnosis of hypermobility you need to first speak to your doctor. They may then test you for hypermobility and diagnose you. Or, you may be referred to a hypermobility specialist, such as geneticist or rheumatologist.

Do you want to get a diagnosis of hypermobility but don’t know where to start? Then, you’ve come to the right place.

Read on to discover the best way to get a diagnosis of hypermobility, which specialist to turn to for help, and how it, sadly, might not be a quick diagnosis.

How do doctors test for hypermobility?

Most doctors use the Beighton score to test for hypermobility. This is a 9-point test that takes a few minutes to complete. 

Firstly, you’ll perform a series of movements to check for hypermobility in your joints. The joints included in the test are:

  • The base of each thumb
  • Elbows
  • Knees
  • Knuckles of the little fingers
  • Spine

Following the test, you’ll get a score out of 9. If you test positive, you’re likely to have Generalized Joint Hypermobility (GJH).

However, if you have signs of a different hypermobility disorder, your doctor may also check for symptoms of other hypermobile conditions, such as Hypermobility Spectrum Disorder (HSD) or Hypermobile Ehlers Danlos Syndrome (hEDS), among other conditions.

In addition, a doctor investigating you for hypermobility may also:

What kind of doctor can diagnose hypermobility?

There are several types of doctors that can diagnose hypermobility:

  • General Practitioner (GP) / Primary Care Physician
  • Orthopedist
  • Rheumatologist
  • Geneticist

How to get a doctor to diagnose you with hypermobility?

Unfortunately, this is easier said than done. Most doctors, especially GPs and primary care physicians, won’t diagnose you with hypermobility straight away. 

Instead, they’ll refer you for blood tests and other experts to get their opinion. 

However, there is no blood test for hypermobility. You may, unfortunately, wait months (and in some cases years) to be seen by the experts you need help from.

The best thing you can do while waiting for these appointments is:

  • Do your research. Speak to your family about their health issues and use the internet to find out as much about hypermobility syndromes as you can.

  • Document all your issues. Something you thought was a minor health issue as a teenager may be relevant to your hypermobility.

  • Start physical therapy. Hypermobility pain can be well managed with the right physical exercises.

  • Be patient. We’ve been there. We know how annoying it is to be passed from pillar to post and to feel like you’re not being listened to. But you will get there in the end, we promise.

How long does it take to diagnose hypermobility?

Now, this is the scary part. Shockingly, people with hEDS or HSD typically wait between 10 and 12 years to be diagnosed.

Why does it take so long, we hear you ask?!

There are many reasons for this, including:

  • Hypermobility syndromes are rare – the prevalence of HSD and hEDS is between 1 in 600 and 1 in 900.

  • Hypermobility is more common in females – females’ health complaints are more likely to be dismissed than males.

  • Patients’ individual health complaints are reviewed rather than them as a whole – for example, someone complaining of easy bruising, heart palpitations, and joint pain may be referred to a haematologist, cardiologist, and rheumatologist for each individual symptom. 

This is why we support advocating for yourself and your own health. If you think you have a hypermobility disorder, put as much information together as you can and take it to your doctor, so they’ve got as much detail as possible. Remember, hypermobility syndromes are rare and many doctors won’t have come across them before.

Can a physical therapist diagnose hypermobility?

Joint pain is one of the most common symptoms of hypermobility. As a result, patients are usually advised to see a physical therapist (PT) to help manage their pain and strengthen their joints. 

If you haven’t already been diagnosed with hypermobility when you visit the PT, you’ll be pleased to know that they can diagnose it. 

In fact, as they work closely with you regularly and for a reasonable length of time each session, they’re some of the best medical professions to rely on for a diagnosis.

When should you suspect hypermobility?

The first thing to remember is hypermobility has a range of symptoms. In some cases, people will present with lots of them while others will have just one or two.

However, you should suspect that you have hypermobility if you:

  • Can do ‘party tricks’ – Can you twist your body into all sorts of weird and wonderful positions? (by the way we don’t recommend doing this as it can damage your joints.)

  • Hypermobility is a common trait in your family.

  • Frequently experience pain in your joints.

  • Tire easily or experience high levels of fatigue.

  • Get a lot of unexplained bruising on your body.

  • Have joints that are ‘clicky’.

  • Have skin that is thin and/or translucent – Your veins may be visible through the skin.

  • Have skin that is hyperextensible – Does your skin stretch further than 1.5cm?

  • Have digestive problems.

  • Had/have frequent subluxations and/or dislocations.

It typically takes a long time to get a diagnosis of hypermobility because of many factors. But, if you suspect that you’re hypermobile, the first thing you must do is make contact with your primary care physician to get the ball rolling towards your diagnosis.

Sources:

https://www.sciencedirect.com/science/article/pii/S2352647521000228

Author

  • Amy

    Amy lives with hypermobility spectrum disorder (HSD). She spent years not knowing what was wrong with her body, before eventually being diagnosed in her 30s. She has two young children - both of whom are hypermobile.