Navigating Shoulder and Scapula Instability in EDS

My Personal Journey Through Injury and Recovery

Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Among the many musculoskeletal complications associated with EDS, shoulder and scapula issues are particularly common. This is largely due to the inherent instability of the joints caused by weakened connective tissues.

In individuals with EDS, the shoulder and scapula are prone to dislocations and subluxations due to the excessive laxity of the ligaments. This instability can lead to chronic pain, muscle weakness, and impaired function. The scapula, or shoulder blade, plays a crucial role in stabilizing the shoulder joint, and any dysfunction of the scapula, including things like scapular dyskinesis can exacerbate shoulder problems.

Shoulder instability can present in single directions or multidirectional. In EDS patients, it is often a chronic issue that may get worse over time, rather than an isolated event or injury/dislocation causing it, that athletes may experience. Instability can lead to frequent subluxations or dislocations, pain, tendonitis and tears to the surrounding tissues such as the labrum. Beyond soft tissue and musculoskeletal injuries, nerve injuries can also be a consequence. This can include things like neurogenic thoracic outlet syndrome and other nerve entrapments/neuropathies.

My Own Experience

Since sharing my recent shoulder surgery in April of this year, I’ve gotten a lot of questions about my shoulder injury and recovery process. My story is very long and complicated and certainly will be different from others. But I wanted to share in case this helps anyone trying to navigate these same issues.

Prior to my EDS diagnosis, I was a very competitive athlete and lacrosse was one of my main sports. I have had my fair share of injuries, but my journey with shoulder and scapula issues are by far my worst, and something I am still working to improve. My issues started during my freshman year of college, where most of my pain presented in my upper back/rhomboid area. At the time, I actually had no idea it was related to my shoulder or scapula at all. Eventually, a physical therapist diagnosed me with scapula muscle imbalances (similar to professional athlete, Farkelle Fultz) but that was just the start.

https://teachmeanatomy.info/encyclopaedia/r/rhomboid-major/

My pain worsened for years despite trying every non-invasive option you could imagine. I then began to experience weakness and loss of coordination of my left arm. Eventually, I was seen by a physician who diagnosed me with scapula muscle detachment, which in retrospect, complicated my treatment and recovery rather than improving things. I still did not know I had EDS at the time, and my scapula muscles were detached, rearranged and re-attached through multiple drill holes into my shoulder blade.

Unfortunately, this was not a solution to my issues. A few years later, I underwent two additional procedures for neurogenic thoracic outlet syndrome. A dorsal scapula nerve decompression, and a brachial plexus decompression. My pain greatly improved with these procedures, however weakness in my scapula and shoulder muscles did not improve as much as I had hoped, despite an endless amount of physical therapy.

Over time, my shoulder joint began to worsen with pain and weakness. Wearing a light purse on my shoulder was impossible, let alone even considering a backpack. My instability in my shoulder worsened and I found myself yet again seeking help. An MRI arthrogram revealed a very large joint capsule, which explained my shoulder constantly sitting out of place and a lot of the pain I was having. Most recently, in April 2024, I underwent my fourth surgery on my left shoulder to tighten my shoulder capsule and stabilize the joint. I have already experienced so much pain relief and improved stability. I can’t help but wonder if my underlying shoulder instability played into my scapula issues and nerve injuries that presented years earlier when playing sports. I’ll never be able to know exactly what came first (chicken or the egg) but I am happy to report that I am doing well right now - at least as far as the left shoulder is concerned. It’s funny how this new stabilization makes it obvious how unstable the other side is too, and overuse during recovery has really bothered my “good” side—typical ‘domino’ effect in EDS.

Items That Have Helped with Pain and Recovery

Throughout my numerous procedures, I have found several items that have been instrumental in managing pain and aiding recovery. I wanted to share them as I know I will probably get asked for some of them. You can find some of these helpful products on my Amazon affiliate page.

Things that Have Made My Shoulder Issues Worse

This is specific to myself, and many of these things will be fine for others. But it took me years to understand some of the things I was doing that were actually making my issues worse. Daily things that were making my issues worse included purses and tote bags on the same side consistently (no matter how light they are!), walking a dog with a handheld leash - I now use a waist belt, prolonged arms above head (hair dryer, hair styling tools, etc) and focusing too much on ‘proper’ posture such as pulling shoulders down and back (if you have posterior instability you are pulling them out of place). These are only my experiences, and you should always consult your doctor or physical therapist about what is safe or recommended with hypermobility and shoulder/scapula instability.

The Importance of Working with a Knowledgeable Physical Therapist

I cannot emphasize enough how crucial it is to work with a knowledgeable physical therapist, especially when dealing with hypermobile shoulders and EDS. Surgery can definitely be avoided, but it takes time and dedication including putting in work outside of appointments. Physical therapy is absolutely necessary for strengthening the muscles around the shoulder and scapula to compensate for the joint instability. It’s a lifelong commitment to maintain functional shoulders, but with the right support and dedication, it’s entirely possible to manage and even thrive despite these challenges.

Shoulder/scapula surgery and recovery list: https://www.amazon.com/shop/cortdoesscience/list/2DRVG6A6LZORY?ref_=cm_sw_r_cp_ud_aipsflist_aipsfcortdoesscience_4GAF1ET60AQ37DHYK9N1