When the pain in my shoulder subsides, I know I’m in trouble
Strangely, my injury stops hurting during a flare-up
When I feel that sort-of-painful, sort-of-numb vibe in my right arm and shoulder, I know I’m in trouble. It’s not numb in the sense that I can’t feel it, but rather that I’m not processing the pain I know I’m experiencing. That’s when my damaged right shoulder has passed the point of no return. It’s difficult to explain, but there’s a tipping point where my shoulder goes from hurting terribly to feeling only an echo of pain, and that means I’ve irritated it terribly.
My right shoulder has been a mess since I sustained a bad soccer injury at 15 years old. I wasn’t yet diagnosed with Ehlers-Danlos syndrome (EDS), and I had a breakaway to the goal. The defender chasing me couldn’t catch up and instead used his foot to hook my ankles while I was in a full sprint, catapulting me into a half-somersault.
I landed on the back of my right shoulder and broke my collarbone, tore my trapezius muscle, and dislocated my shoulder all at once. It’s given me trouble ever since, and while proper physical therapy after my EDS diagnosis and regular bodywork have made a major difference, there are still times when my shoulder flares up, transporting me back 20-plus years to the initial injury.
It’s a strange sensation — one I’ve always struggled to describe to my doctors, physical therapists, and bodyworkers. I know that my shoulder hurts, and once I begin to do anything to it — use a heating pad, get massage therapy, etc. — it seems to wake up from its semicomatose state and come back to life in a tidal wave of discomfort.
I likely don’t feel the full effect of the pain because I mentally block it out, but I don’t think that’s the whole story. I just don’t know what the other part of the story is!
Sometimes this pain happens because I overdo it and keep pushing even when my shoulder is already sore. Other times, it may be the result of a singular incident, such as rolling onto my right side while I’m sleeping. And then there are times when I have no idea what caused it to flare up.
When my shoulder reaches this point, my right arm does a kind of “dead hang” at my side. I think it’s an unconscious protective mechanism to keep my arm as still as possible to minimize the pain. I can move my arm when my shoulder flares up, even though my range of motion is diminished. But even when I walk, it just hangs limply at my side unless I make a concerted effort to swing it.
Pain meds, bodywork, and time are the only things that help, but recovery tends to be a slow and painful process. I always have to remind myself that taking care of my shoulder may cause some pain in the short term, but it’ll provide me more relief in the long term. In addition, it’ll likely take several bodywork sessions and some ups and downs before my shoulder settles back down completely.
These flare-ups are frustrating, unpredictable, and hard to explain. No one questions my pain, but I still wish I could describe it more accurately — if only to help others. I’ll keep trying to put the sensation into words, in hopes that, one day, someone else will understand and say, “Yes! I know exactly what you mean, and I don’t know how to describe it, either!”
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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David
This sounds like my wife. She has EDS and recently her leg will simply stop working. Many specialists later they diagnosed her with functional neurological disorder (FND). The pain from her legs overwhelms her brain and the brain just stops sending signals to the leg. We’re in the early stages or working through it, but there are treatments that offer help.
Bianca
I do know what you mean only with me it's the left shoulder and arm. I think that, as a rule, it's difficult to explain our pain to others who don't have this affliction/disease....or is that just me 😅?
Ann
Ditto me! Left shoulder pain has increased over the last 15 years or so, especially at night! Eventually had a scan and tendinitis, amongst other things diagnosed and physio recommended. Physio exercises absolutely irritated my shoulder so I stopped, instead opting for a shoulder brace, which helps. Now my right shoulder is very painful.
I think my shoulders sublax at night causing most of the damage and pain. I find a memory foam mattress helps, maybe, but it’s hard to work out exactly what’s going on!
Jennifer Bourque
I am dealing with this exact thing. You for Not feel like I am going thank you for helping me not feel like I’m going crazy. As you describe this, it’s the first time I feel like a curtain has been lifted and somebody understands me. Thank you so much for sharing your journey as I’m just got diagnosed. there’s so much I don’t know, but the chronic aches and pains and having the ability to have experts like you help me understand this hypermobile EDS it is tremendously helpful.
Cheryl Rajkumar-Maharaj
My 14 year old niece appears to be having regular episodes of cataplexy although this has not yet been diagnosed. She definitely has overly flexible joints but has not yet been diagnosed with EDS
I have only seen cataplexy and Ehlers-Danlos Syndrome briefly connected in articles.
Where can I get more information on the connection between the two conditions?
Constance Frye
I sleep in my right side and I wake up with shoulder pain. Is it the EDS, rhe fact I was born with a missing clavicle or Thorsic Outlet. Who knows.