Update: X-ray report says it’s acromioclavicular joint subluxation (shoulder separation) Hi all, I am 32, a Podiatrist and I live in the North West of England. Dx with hEDS in September. Never dislocated or subluxed (to my knowledge) up to now.

I apologise now, because I am sure that most of you are going through on a daily basis, much worse than I have ever experienced. Shoulder pain from July, GP thought was rotator cuff impingement, X-ray from last week says it’s subluxed between my clavicle and shoulder. I’ve been having Physio for this (not very successfully) and for years for my neck (cervical spondylosis) and other probs, so GP sending me for a surgical opinion for the subluxation. I just wondered if anyone had experience with this specific problem and/or can advise if there is someone specific I can see (or request to see)? Rheum discharged me when Dx hEDS, so I’m not under anyone there. I’ll be being referred to an Orthopod, but concerned if they don’t know enough about EDS, they may suggest something that makes it worse.

17 Answers

Briana.70
Answered 10 months ago    reply

I don’t have experience in this specifically, but tore my rotator and the pain was horrendous so don’t downplay it with us.

I just wanted to pop in and say it was actually an orthopod who started my dx ball rolling. I’d seen lots of rheumys who never connected the dots. So don’t worry too much if that makes sense


o_stephaine
Answered 10 months ago    reply

Nice to meet you! I had my first official subluxation a few months ago. I just popped it back in place two days ago. I do understand your hesitancy. You understand, and will be respected more by Ortho because you are in their same league if you will. Explain your concern, and hesitation on surgery. I am hopeful they will listen and take more time with you.


sidalia
Answered 10 months ago    reply

Did they say subuxed clavicle? Yeah they won't do bugger all, sadly. they did an ultrasound and found Glenoid hypoplasia and said if I get too many problems they will pin it but that's a last resort and may make it worse. They've left me with subluxed clavicle for years!


sidalia
Answered 10 months ago    reply

My clavicle wing up, do yours?


coolbullocks68
Answered 10 months ago    reply

My experience of shoulder issues has been quite bizarre and mixed - scan suggested rotator cuff pathology then later not. It has taken 4 years for a diagnosis of thoracic inlet syndrome by a rheum who also disagrees with a wrist subluxation result. If you are getting the run around which is pretty common pls consider asking about thoracic inlet the pain is horrendous due to nerve compression which for me I believe was caused by years of shoulder and clavicle instability. Have a read and see if any symptoms fit. Getting answers is hard enough let alone the right treatment.


dejected.Shenita
Answered 10 months ago    reply

I have had severe pain behind left shoulder blade and left side of neck up to skull for three years straight. Nothing has helped, I’m going to spine and pain center tomorrow.


m_mccray92
Answered 10 months ago    reply

I’m a nurse, so I have basic knowledge of anatomy and physiology, and I had no idea that I was subluxing for several years before the chronic pain started.

I don’t have experience with your particular problem, but I have had other similar problems. Conventional PT was not helpful for me at all. I did 32 weeks of Pilates-based PT and did gain some strength and stability. My advice is to find someone who is familiar with hypermobility, keep at it, and don’t get discouraged.


susy_m
Answered 10 months ago    reply

I had a capsular shift for chronic shoulder instability


L_Charmain86
Answered 10 months ago    reply

Don't apologize it's never a competition to see who's worse. Everyone's pain is valid


h.aiko
Answered 10 months ago    reply

My shoulder pain is related to instability and under use of the smaller stabilizing muscles. I do unweighted, prone, PT type exercises, Ms and Ts and Ws and the like. Unweighted is key so as your major muscles don't try to take over. So, find a PT who is aware of EDS or is willing to work hard to learn, and they would refer you back for imaging if it seems more like an injury that needs surgical repair.


Augusta_67
Answered 10 months ago    reply

I have had 5 surgeries on my left shoulder to correct multidirectional instability. All 5 have failed. I will not let them do another one.


latoshasoulful
Answered 10 months ago    reply

Ring rheumatology personal sec. state you want a referral to dr kazkaz university college London. Aspa. She is the specialist in England. She will confirm diagnosis and sort what you need doing. She’s brilliant.

r.guillermina
Answered 10 months ago    reply

My GP referred me to Dr Pauline Ho at MRI and it was refused as they no longer accept referrals from GPs, only consultants. Would I need a consultant to refer me to Dr Kazkaz? Local rheum just discharged me at the same time they made the diagnosis so I’m back under GP. Local rheum didn’t do any other assessments.

latoshasoulful
Answered 10 months ago    reply

That’s what they did to me. Ring the rheumatologist secretary say your not happy and ask. Or tell your gp to ring but it will be faster you ringing.


Talisha.Burke
Answered 10 months ago    reply

I had been having lots of problems with right shoulder being painful and pain radiating across the front into clavicle. If anyone touched the top of my shoulder it caused agonising shooting pain across clavicle. Nobody seemed interested at the doctors. One night I woke up and it was dislocated. Never known pain like it as i'd never knowingly even subluxed anything. I couldn't move it at all. Got up and was considering A&E visit about an hour later when there was a crunch then pop and it went back in. Instant relief from the agony but was very sore for a few days. I have NOT had any pain from it since so I'm guessing it was actually subluxed for all that time and I didn't know. I'm learning all the time!


synthia.atwood
Answered 10 months ago    reply

Have you seen a physiatrist or physical therapist? They would have more knowledge about the spine and strengthening those muscles. My neck isn’t bad enough for surgery but neurologist has help with medication to reduce migraines.


Roos.Andera16
Answered 10 months ago    reply

Wondering how your hips are? Clavicle and hips my most unstable and likely to sublax and clavicle pain is the worst subluxation pain I’ve experienced. Horrible! Disabled pharmacist myself. And like the nurse above took me years to realize sublaxing and not normal. To be honest for me rice bag heat to muscles from shoulder blades to base of skull and Valium to help relax those help my clavicle back in place. Hope this helps! On a family vacation I can’t all the walking with and one of my hips sublaxed. Walked around for 3 hours till I could do the technique I’d been taught to move it back. The loudest and most cracks I’ve ever heard doing that. You are NOT alone!


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