Managing Dislocations in hEDS

I recently attended a presentation where various experts shared their knowledge on managing hEDS, and one particular session really stood out to me. The insights on handling dislocations were so practical and eye-opening that I felt compelled to pass them along. Living with hEDS often means dealing with joint issues, and understanding how to handle dislocations can make a big difference. I’ve added a few extra tips based on my own experience to complement the expert advice I heard. In this article, I'll walk you through the essential steps for recognizing, treating, and recovering from dislocations, to help you manage these challenges with a bit more ease and confidence.

Essential Steps for Recognizing, Treating, and Recovering from Dislocations

Living with Ehlers-Danlos Syndrome (EDS) often involves dealing with joint issues such as dislocations. A dislocation occurs when the bones forming a joint are forced out of their normal position. Many people with EDS experience "noisy joints"—joints that pop, click, or snap—and may wonder if these noises indicate a dislocation. While loud joint sounds can be concerning, they do not always mean a dislocation is occurring. Often, these noises are benign and not a cause for alarm.

However, dislocations do happen and when a dislocation occurs, having a clear plan can help you manage the situation effectively.

Recognizing Dislocations

How do you know if a joint is dislocated? 

Pain: the intensity of pain varies. For some, a first-time dislocation is very painful, while recurrent dislocations may be less painful or even painless.

Sudden limited mobility: movement is usually very difficult or impossible due to the joint surfaces being out of alignment.

Shape: a dislocated joint may look visibly misshapen or out of place, especially in shoulders and kneecaps (the joints that most often dislocate). You might notice a crooked appearance or an unusual bump.

Developing a Dislocation Plan 

Creating a personalized dislocation plan is important: self management is key.

Here's a guide to help you manage a dislocation:

Immediate Steps to Take

1. Do Not Panic: while dislocations can be painful, unpleasant, and frightening, they are not life-threatening and rarely cause severe damage.

2. Support the Joint in a Comfortable Position: find a position that supports the joint and reduces discomfort. This might involve using pillows or other supports.

3. Breathe Normally: practice slow, deep breathing to help calm your body and mind.

4. Take Painkillers: Use prescribed pain medication as directed to manage discomfort.

5. Relax and Distract Yourself: apply heat, gently massage the area, or engage in a distracting activity to ease the situation.

Continuing Care and Recovery

1. Give It Time: allow your body to relax.

2. Use your Technique: if you're familiar with a specific method to manage your dislocation, use it once you're relaxed. For shoulders for example, creating a slight downward pull while slowly repositioning the humerus with the opposite hand is all that it takes. For a dislocated patella, gently strengthen the knee. The patella may reduce spontaneously. If the patella has not reduced, use your hand to apply gentle force to the outside edge of the displaced patella, and push the patella inwards back to its normal location.

Because the connective tissue in people with EDS is less stiff, usually dislocation reductions do not require aggressive manipulation. 

*If you feel that the dislocation has not resolved, give it more time but monitor for serious symptoms. If the limb becomes cold, discolored, or very numb, seek medical attention as these symptoms may indicate a more serious issue.

3. Post-Reduction Care: Treat the area as an acute injury using RICE (Rest, Ice, Compression, Elevation) and proceed with caution for the next two-three days avoiding strenuous activity for the affected joint. Avoid prolonged immobilization to prevent muscle weakening and extended recovery and try to keep the rest of the body moving.

In conclusion, having a dislocation plan in place can make a significant difference in managing the challenges of hEDS. Remember, staying calm and following a structured approach can help you navigate these situations with confidence. If you're unsure or need additional support, don't hesitate to consult a healthcare professional.