Patient Education: Terminology 101
It’s time for Terminology 101.
Why? Because I’m seeing an ever increasing number of people who are trying to raise awareness or communicate about hypermobility conditions (which is awesome!!) but they aren’t using the correct terminology. I think if we are to educate the wider community, we need consistency in our definitions and terms.Also, you kind of sound… shall we say “misinformed”… when you use the wrong terms when communicating with health professionals.
So here we go:
Dislocation: A dislocation is the displacement or separation of one or more bones in a joint from their normal position. A dislocation occurs when the two surfaces of the bones in a joint are no longer touching each other. (Reference)
Subluxation: A subluxation or partial separation implies the presence of an incomplete or partial dislocation of a joint, with the bones that make up the joint remaining in partial contact. (Reference)
Dislocation vs. Subluxation: When you use the term dislocation, you need to be sure that this is actually what has happened. While dislocation sounds more dramatic and more painful, there is an important distinction between dislocation and subluxation, and it’s not to do with pain. I can tell you from experience that a subluxed joint can be equally as painful as a dislocation. The distinction is actually in the degree of displacement which can be really important for knowing how to relocate the joint, as well as how to proceed with management.
In my experience, the term dislocation is used very broadly in the hypermobility community to encompass both true/full dislocations and partial dislocations/subluxations. It’s really important that we start using the right terms. Medical professionals are actually far more likely to believe you when you say that you relocated a subluxed joint yourself, than a dislocated one. A true dislocation is much harder to relocate by yourself (unless it is so grossly unstable because it happens so often), especially major joints like shoulders and hips. Finger and patella dislocations (knee cap) are much easier to relocate yourself. So let’s try to start describing what’s happening in our bodies more accurately…
Use of the word dislocation: E.g. I went to emergency with a hip dislocation; I can dislocate my thumb by doing X; I dislocated my patella.
Use of the word subluxation: E.g. I experienced a finger subluxation; I can sublux my shoulder; my patella (knee cap) subluxed (not subluxated).
Hypermobility vs Hyper-Flexibility vs Double Jointed: Let’s get this straight, you can’t be double jointed. I have never met a human who has 4 knee joints or 4 shoulders, elbows or hips. You can’t have a double joint. You can have a hypermobile joint, you can have a lax joint, you can have a loose joint, but you can’t have a double joint. So let’s start by ridding this term from our vocabulary (don’t worry, a lot of older health professionals are the worst with this!).
Now, hypermobility vs. hyper-flexibility. Joint Hypermobility = hyper (more) + mobility (movement) within any given joint. Of the structures that make up the joint (bone articulations (meetings)), ligaments, tendons, muscles, cartilage, it’s the ligaments that are the culprit for the extra mobility. Hypermobile joints have ligaments that have a bit too much give in them, what we call laxity… joint laxity usually = joint hypermobility.
Flexibility is the ability of a joint to move through its full range of motion. Lots of factors come into play, but essentially this is driven by the ability of the muscles to stretch to allow the joint to move through its range. Generally speaking, when people use the term flexibility, they aren’t talking about joints, they’re talking about muscles.
So you can be hypermobile and flexible, and you can be flexible and not hypermobile…. but I don’t believe that hyper-flexible is even a thing.
Migraine vs Headache I add this one in because it’s a bit of a bug-bear for me. Unless you have experienced a migraine, you probably don’t understand this…. but there is a REALLY big difference between a headache, or even a bad or a splitting headache and a migraine. Migraines are unique events that occur which usually have distinct stages that progress from prodromal to post-dromal (you can read more about migraine here).
For the sake of people who suffer from migraine, please try to use the correct terminology. While headaches can be bad and last varying amounts of time, migraines are usually debilitating on some level and are quite disruptive to the individual’s life.
My general rule, if anything less than Panadeine Forte helps your headache, and you can post on Facebook while you’re experiencing a headache, please don’t call it a migraine.
Sensitivity vs Allergy This is another one that is really important. Lots of people in the hypermobility community experience both sensitivity or intolerance to substances, including foods and lots of others experience actual allergic reactions, some of which can be life-threatening.
(I’m not talking about celiac disease here). For example, some people have an intolerance to dairy/lactose or gluten, and it makes them feel unwell, bloated, flares up eczema, etc. This is usually an intolerance or sensitivity, not an allergy. People who have an allergy to things e.g. nuts, seafood, shellfish, bees usually have a potentially life-threatening reaction called anaphylaxis which compromises their airway and requires prompt medical intervention. You can also have allergic reactions that are not anaphylactic and are therefore not life-threatening but require some kind of treatment to help alleviate the symptoms. I’m not going to go into the technical side of allergy vs. intolerance here and the different immune pathways, but just know that intolerance and allergy are very different things!
Personally, I am intolerant to dairy and gluten, but I’m not allergic to them. I am however allergic to red meat (non-anaphylactic) which causes me to become acutely unwell within 20 minutes of ingesting it, even in trace form. When I order food at a restaurant, I have to say I’m gluten & dairy intolerant (which I need to avoid where possible), but allergic to red meat and specify that that means I will become violently ill while on their premises, just to make them understand the difference!
I try to treat it a little bit like the boy who cried wolf – don’t cry wolf until you really need to cry wolf! I know that many others experience similar frustration. Help us out and use the right terms!
Is there another term that you’re seeing or hearing that you want us to clarify?