What is Hypermobility Syndrome, and what does that diagnosis mean?

 

This post explores the definition and signs of symptoms of hypermobility syndrome. Next week we will explore what the management of the condition looks like from a functional medicine stand point. If you want to work with a Vytal Health provider, schedule a discovery call to learn more.

 

“Hypermobility syndrome” is what it sounds like, joints and connective tissues that are too mobile. 

 Essentially, hypermobility syndrome presents as excessive joint flexibility along with other symptoms related to connective tissue disorders. Hypermobile joints can move beyond their expected range of motion, which can cause them to be more susceptible to dislocations, sprains, fascia pain, and other injuries. 

Hypermobile folks can be wildly flexible! But some people may not identify with flexibility at all. Most hypermobile patients call themselves “double jointed.” An example of this may be where the fingers bend really far back, or someone that can touch the ground without bending their knees. It can present as someone who just has a lot of dislocations. (Of the knees, shoulders or elbows for example). It can show up as early as toddlerhood and then can emerge more through childhood. Think of those kids who are excellent at dance and gymnastics! 

Hypermobility syndrome can be diagnosed by a doctor using a model called the Beighton Score. 

 

Signs and Symptoms of Hypermobility: Looking Beyond Flexibility

Musculoskeletal Symptoms:

    • Muscle and Fascia Pain: Generalized muscle pain or aches, often due to overuse or compensation for unstable joints.
    • Frequent sprains and strains and/or dislocations
    • Early Onset Osteoarthritis: Increased risk of developing osteoarthritis at a younger age.

Soft Tissue and Skin Symptoms:

      • Soft, Stretchy Skin: Skin may be soft and velvety to the touch, and it may stretch more than usual.
      • Fragile Skin: Skin may bruise easily or heal poorly, sometimes leading to scarring.
      • Striae (Stretch Marks): Unusual stretch marks may appear, often in areas not typically associated with rapid growth or weight change.

Neurological Symptoms:

    • Difficulty sensing the position of joints (poor proprioception = clumsy), leading to clumsiness or frequent injuries.
    • Migraines and headaches
    • Fatigue: Chronic fatigue and a general sense of tiredness, which may be related to the body’s constant effort to stabilize the joints

Cardiovascular Symptoms:

    • Autonomic Nervous System Dysfunction: Symptoms of dysautonomia, such as dizziness, fainting, or heart palpitations, particularly upon standing (orthostatic intolerance).
    • Varicose Veins: Increased likelihood of developing varicose veins due to weakened vein walls.

Gastrointestinal Symptoms:

    • Digestive Issues: Symptoms such as acid reflux, irritable bowel syndrome (IBS), or gastroparesis (delayed stomach emptying).

Other Symptoms:

    • Dental Issues: Higher incidence of tongue tie often leading to dental crowding, gum problems, or temporomandibular joint (TMJ) dysfunction.
    • Anxiety and Depression: Psychological symptoms, which may be due to chronic pain, fatigue, and the impact on daily life.

 

These symptoms will of course vary widely in severity and may not all be present in every individual with hypermobility!  In some cases, hypermobility is part of a broader syndrome, such as Ehlers-Danlos syndrome (EDS) or Marfan syndrome, which have their own specific sets of symptoms and diagnostic criteria. If hypermobility is suspected to be causing significant issues, a thorough evaluation by your provider will be in order.  Often the team for managing/evaluating will include a rheumatologist or geneticist.

Ehlers-Danlos Syndrome

When we start talking about the complexities around hypermobile patients and what they’re more at risk for, we have to talk about Ehlers-Danlos Syndrome. There are a lot of people who identify as having hypermobility, when in fact there might be a need to explore a diagnosis of Ehlers-Danlos syndrome. The entire medical model is very slow to pick up EDS. Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect connective tissues, which provide structure and support to skin, bones, blood vessels, and many other organs and tissues. The primary characteristic of EDS is hypermobility, but it also involves various other symptoms depending on the type of EDS.

 The way that Dr McCubbins screens someone and gives them an official diagnosis in the office is with a series of questions and physical exams. Unfortunately, it’s not a very flexible test, (pardon the pun) so even though someone may present as having EDS –  if they don’t have a certain amount of check marks on this official EDS checklist, (which you can find online) it’s just regular ‘hypermobility syndrome’. This doesn’t really change the way she addresses patient care though!  

It is helpful for communication with their family and their other providers to know if a patient actually does have EDS because one of the things on the checklist can be family history.  A lot of patients will go through the testing for their own validation. If you suspect you have either hypermobility or EDS, it is worth bringing that to the attention of your provider. Dr Alicia McCubbins can treat patients across the country through Vytal Health.

Next week we will dive into functional approaches to treating patients with hypermobility!