The Curious Case of My Ongoing Shoulder Soreness

Ehlers-Danlos syndrome and an old injury continue to cause shoulder problems for columnist Karen Del Vecchio

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Last week, I experienced some significant shoulder soreness. While that’s common in patients with Ehlers-Danlos syndrome, I also badly injured it when I was a teenager, and it hasn’t been quite right since.

After my Ehlers-Danlos syndrome diagnosis at age 22, I finally had some tools and information to help me significantly decrease my pain and increase my range of motion. But it still flares up from time to time.

Sometimes I know exactly what I’ve done to make it sore — perhaps I slept wrong, lifted something too heavy, or did some repetitive motion. This time, however, I have no idea what caused it, which also occasionally happens.

One of the strangest things that happens when my shoulder flares is that it will be painful at first, and then I’ll become numb to the pain. When I get to that point, my arm also tends to feel heavy.

I suspect that many people who deal with chronic pain understand that sometimes you just learn to mentally compartmentalize it as much as possible. There are moments when I know my shoulder hurts and I can feel it, but the pain is somewhat disassociated from my consciousness. My body tends to go into shoulder-protection mode.

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When I get this way, I unconsciously plaster my right arm to my side. It doesn’t swing when I walk. I automatically do as much as possible with my left arm and hand. And I’ll even hold my arm like it’s in a sling across my body. It looks strange when I see myself in a window or mirror, because I often don’t even realize I’m doing it until I see my reflection.

It’s an odd sensation that’s hard to explain. My right arm will feel like it weighs twice as much as my left one, and moving it can feel like I’m trying to drag it through water instead of air. It will move, but it requires additional effort. Several years ago, I finally pieced together that it often happens when my shoulder is experiencing subluxation, or partial dislocation.

Due to the damage from the original injury, the ball of my shoulder is pulled forward by tight and damaged muscles, and things get pinched. While I can rotate my shoulder for some temporary relief, I’ve learned that I won’t feel better completely until I get bodywork done to release the muscles and allow my shoulder to settle back into its proper position.

It’s been over 20 years since my original injury, and I used to spend a substantial amount of time in this protective state. After my EDS diagnosis, however, intensive physical therapy, bodywork, and massage have made a huge difference in my daily shoulder comfort and function.

While it still sometimes flares up badly, when that happens I try to be thankful it doesn’t feel like that all the time anymore. It’s taken many years to find a regimen that helps, and I’m glad that I finally have ways to tackle shoulder soreness when it happens.

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 other 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.


Pamela Crabtree avatar

Pamela Crabtree

Thank you for sharing your story. My dtr has EDS dx 3 years ago. PT has been a challenge to keep it going in her life. Her PT will do some massage which she is grateful for. Can I ask where you get a massage therapy for your shoulder-so hard to find qualified people to help.

Mary C avatar

Mary C

Isn't it a joy? You never know what is going to hurt when you wake up the next morning. I can be fine one day and limping the next with no idea what happened except maybe a thought that my hip is sublexed.

Robyn Kiernicki avatar

Robyn Kiernicki

My experience with EDS and my shoulders is very similar. Two years ago I was booked for surgical reconstruction of my left shoulder, and then the surgeon rang me the day before and cancelled . He had been concerned that it would not solve all my problems and had discussed my scans with colleagues and recommended that I have reverse replacement of left and probably right shoulder as well. However , this is a relatively new procedure and there is no data on long -term outcomes, so he doesn't do the surgery on anyone under the age of seventy!
I still have several years to go before I reach that milestone, so I had a cortisone injection that did give significant pain relief for about a year. In the past I was seen by a physiotherapist who told me that there were absolutely no exercises that she could give me to support my shoulders, and suggested that I bend over and swing my arms like a pendulum, to keep the joints loose.
I have recently been seeing a (different)wonderful physiotherapist who has been giving me exercises to strengthen my upper back, which flows on to better control of my shoulders and I now have near full movement of my arms above shoulder level without the pain . If I can maintain my current level of comfort and movement into the future, I will not need the shoulder replacements at all.


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