Why did they let my shoulders get so bad?

[Fuunycat]

So, I have a problem with dislocating and subluxing my shoulders. It has been happening for nearly ten years. It started with every other month and then every week. It then moved to every day and finally all the time. It calmed down with some physio, but I kept having problems but told I would have to live with it.

So about three years ago, it started getting worse. I hadn't stopped my physio exercise, so I went back to the doctor to get referred to physio and referred for EDS diagnoses. I got to the EDS diagnosis first and have that (I wasn't expecting but happy to know ).

The physio isn't a specialist in shoulders or anything but said they have worked with people like me, and it should be fine. In the short break from seeing doctors/physios, the entire way you do shoulder physio has changed. Cool, start this new system, but because covid, all this is online (Derby Shoulder Instability Rehabilitation Programme). In the meantime, I dislocated my hip and went to a specialist and specialist physio.

I dislocated both my shoulders, and a doctor I used to see in the children's hospital put my shoulder back in; the nurse who helped said to see the specialist doctor in the hospital.

The doctor was useless and upsetting, saying I must live with it and do the physio. He said it with such little care I just cried. So after that, about two months later, I subluxed my left shoulder, but the doctor I saw last time refused to see me because I should be able to do it myself. I cried again.

My mum helps me with hard appointments or phone calls as I am autistic. This was the first time she didn't come in with me when a doctor refused, so she called the physio I saw for my shoulder. He said he could no longer deal with me and referred me to a specialist in the same hospital I went to for the hip.

I didn't see the doctor. I saw a specialist physio (who sent me for an x-ray before seeing them), who was very smart and reported back to the doctor but wasn't a doctor. Again told me there was nothing they could do but physio. I go to the physio and see the person who saw me for the hip. My shoulders are terrible, and he does the same physio exercises but less extreme and some other activities. I am strong because I can lift heavy weights but have no stability, so those stability muscles don't work.

This physio leaves, and I see another person. He gave me a load more exercises as he did even more tests. These were super hard; I couldn't do these twice a day like I could with other exercises. I was also still doing the Derby program. I subluxed my wrist, which was read wrong on the X-ray and took six weeks to fix. In the meantime, I go to shoulder physio, and they give me a better splint. They said they would call me in six weeks. They don't. I can't get in touch with the hospital or physio department. My shoulders, in the meantime, get even worse, constantly going in and out and getting stuck for days. Then my right shoulder had been out for five days, but I don't want to go to A&E. My urgent care can now put my shoulder back in (they didn't use to do that). A fantastic nurse does it. She puts a letter in for my gp to refer me to the specialist.

I saw her again with my left shoulder and still hadn't seen the GP. Finally, see someone at the GP surgery and get referred. I dislocate badly again and call advice on what to ask the specialist.

I see the specialist and get more x-rays, but this time, I am told why. They are worried I have fractures due to constant dislocations. This was a weird appointment. They were shocked that I had left my shoulders out for days, but previous doctors and specialists said to wait days, sleep on it, use hot water bottles, CBT, tape, chronic pain programs etc.

This doctor took history and was again shocked at how often I had dislocated. This doctor wasn't the specialist but worked under the specialist. So goes off to talk to the specialist. She returned and said he didn't want to see me in person because he knew looking at my shoulder would dislocate it. Before, no one cared that looking at my shoulder would hurt or pop; I thought it was normal.

I have most likely destroyed my joint. I was never told about this possibility; I know it is common sense, but shockingly, it has never been brought up. I have never had MRI on my shoulders; I have had three on my brain because of my shoulders. I have had one on the bad wrist and hip but never on the shoulder. I will have an MRI with air injected into the joints to see how bad it is.

I probably need surgery, which will only give me time before the joint needs replacing. I don't understand what has changed; why am I told now that I can destroy the joint? I was careful not to dislocate, but I was told to try not to let it stop me from living. I pushed my joints in physio exercises. One of the exercises I got from the last physio was pushing my shoulder to the point of dislocating and then trying to stop it. I wouldn't have done it if I knew this could destroy the joint.

I am sorry for this essay. If you know if I am missing something or have something that helps, please reply.

[Trickysite]

Utmost sympathy. Sounds like you have been very brave and tried so hard to do the right thing. The truth is that different professionals will have different approaches to the same problem. And some of them will be ignorant and wrong. Never blame yourself. I was badly damaged all over by a doctor osteopath putting me on traction and another doctor 40 years later commented that it was the last thing to do to me! Doctors make mistakes. I guess they are human, too. I hope you are now in the hands of someone who understands your particular condition and can advise you wisely and things will turn out better than you fear. Finding the right professional is key and it sounds like you have finally done so, so take heart from that. It took me 25 years, with a lot of heartache and disability on the way, but the last 20 years have been Hugely better. There is hope. Emma

[Ginny_Ickle]

The Muldowney Protocol for physio is wonderful. Book worth cost.

Free videos on YouTube by EDS patient/therapist Jenni di Bon (sp?) are very gentle, help me I've had great luck with the pelvic and liw-back work, just starting her shoulder exercises.

Bath Hospital is amazing for EDS. Sports med docs and physiatrist may be more knowledgeable than average.

8-shaped scapula brace that sits way out on shoulder helps me for bad days.

Tommy Copper shoulder T shirt helps me avoid them. There's an NHS vendor who does similar, including custom fits.

I wrote more, and more coherently, but site ate it.

Lots of sympathy, will try to come back.

[Ginny_Ickle in reply to Ginny_Ickle]

ehlers-danlos.org/what-is-e...

[Fuunycat in reply to Ginny_Ickle]

Thank you I will look into it

[Fuunycat]

Update, there some tearing in a few different areas, going to try to avoid surgery and re do MRI in 6 months with physio in the meantime

[Ginny_Ickle in reply to Fuunycat]

Fingers crossed! Has anyone talked to you about bracing? I know they try to avoid bracing where possible, and limit time, but us bendy folks may need them for longer. For instance, I'd blown out my basal thumb joints pretty badly, using canes on days when POTS was floating and I wobbled a lot. (Also didn't help elbows any.) But when I found a brace that really worked for me, and wore it most of the time for a couple of years, then as needed for a couple more, the joints finally healed and haven't dislocated in ages. It's great to have opposable thumbs again!

A figure-8 shoulder brace helps me a bit, beats having to tuck a paperback under my arm to keep shoulder in position.

I've also benefited from the Tommy Copper shoulder-support T-shirt, which is a bit less supportive but a lot more comfortable.

Hope you find something that'll help you.

[Yogibear11]

Have you had your hormones looked at? Apparently if they are not right it can cause more dislocations.

[Fuunycat in reply to Yogibear11]

I heard when I was younger that women are more likely to dislocate as hormones make joints relax due to preparing for birth but I haven't noticed any particular problems when hormones are high