Scott Johnson’s left shoulder was bothering him. Really bothering him.
“I couldn’t remember a specific incident, but was sure it was just a stubborn basketball injury," said Johnson, a Minnesota-based type 1 for more than three decades who blogs at Scott's Diabetes and works for the app company mySugr. But after months of physical therapy with no progress, and even what he describes as “negative progress,” Johnson was diagnosed with adhesive capsulitis, better known in the vernacular as frozen shoulder.
This is one of those lesser-known diabetes complications, one that doesn't get discussed much in comparison to vision loss, nerve damage, and a host of other very scary ones. But it's a complication that can be painful and life-altering, and isn't always easy to recognize when we might just equate it to "the wonders of getting older." DiabetesMine covered it several years ago in our 411 Complications Series, but overall it's not really on the radar unless you're personally experiencing it.
Here's the scoop on frozen shoulder, for those inquiring minds in the Diabetes Community.
What is Frozen Shoulder?
In a nutshell, it happens in three stages:
- Freezing: Pain slowly becomes worse until range of motion is lost (lasts 6 weeks to 9 months)
- Frozen: Pain improves, but the shoulder is still stiff (lasts 4 to 6 months)
- Thawing: Ability to move the shoulder improves until returning to normal or close to normal (lasts 6 months to 2 years)
Digging deeper into the medical side of how this ailment affects your body, we learned that surrounding your shoulder joint is a bundle of heavy-duty connective issue called the shoulder capsule. For reasons that aren’t clear, in some people the tissue thickens and becomes tight, and then stiff bands of tissue called adhesions develop, making movement of the joint painful and even blocking the shoulder joint’s normal range of motion.
It’s a progressive condition, starting slowly with occasional pain, and then a reduction in the ability to move the joint. At first, perhaps, reaching the bottle of whisky on the top shelf becomes difficult. Then impossible. Eventually, it can become so debilitating (the frozen shoulder, not the whisky) that you can’t even dress yourself.
And it’s not just that you can’t raise your arm; the arm can’t be raised, period. Frozen shoulder is characterized by what is called “loss of passive range of motion.” Passive range of motion is simply how much someone else can move a joint. In other types of conditions, a person may not be able to move his or her own shoulder beyond a certain point, but someone else could easily move the joint farther. But with frozen shoulder, the shoulder is, well... frozen. Physically stuck.
It cannot be moved farther.
And then what? Oddly, just when it gets worst, the process often begins to reverse itself. Like the seasons of the year, the natural progression of adhesive capsulitis is often described in stages of freezing, frozen, and then thawing.
Who Gets Frozen Shoulder?
Each year in the US, 200,000 people are diagnosed with frozen shoulder. It’s most common between the ages of 40 and 60, and more common in women than men. And I’m sure it will come as no surprise to you that people with diabetes are more likely to get it than anyone else.
The American Diabetes Association reports, via the Academy of Orthopaedic Surgeons, that 10-20% of PWDs have frozen shoulder. Meanwhile, consumer literature often reports that PWDs are three times more likely to get frozen shoulder over sugar-normals (non-diabetics), and the actual risk may even be much higher than what the stats show.
A 2016 meta-analysis lead by Nasri Hani Zreik of the Blackpool Victoria Hospital in the UK, found that people with diabetes are five times more likely than non-diabetics to have frozen shoulder, with an overall prevalence of frozen shoulder in people with diabetes at a whopping 13.4%. Further, we D-folk make up fully 30% of all frozen shoulder cases.
That last set of numbers led the researchers to call for screening for diabetes in any patient diagnosed with frozen shoulder -- wow, what a way to get diagnosed!
And this is one time where we T1's share equal risk with our T2 cousins. There was no significant difference in prevalence between T1s and T2s, nor between T2s on insulin vs. T2s on oral agents.
Treating Frozen Shoulder
Adhesive capsulitis is one of the few health conditions that can actually go away if you ignore it. As noted, frozen shoulder does eventually thaw on its own, but it can take up to three years, and during that time, the pain can be staggering.
Johnson said, “Every once in a while, both on the court and around the house, I’d jar my body in such a way as to hurt my shoulder. It was a knee-weakening, breath-taking, seeing-stars type of pain.”
And that knee-weakening, breath-taking, seeing-stars pain got more and more common as time went by for Johnson. His ice wasn’t thawing, so to speak, and it became so painful it was interfering with his daily life.
“I was avoiding basketball instead of looking forward to every opportunity,” he said, noting that new lack of activity trashed his diabetes management and, he says, his mental health.
It was time to take action.
The traditional treatments for frozen shoulder are physical therapy to try to gradually stretch some flexibility back into the joint capsule, sort of like stretching out a pair of too-tight pants by wearing them for an hour a day. Steroid injections are also commonly used, but Johnson was wary of their notorious effect on blood sugar. Anti-inflammatory meds are sometimes used, and the "nuclear" treatment option is a primitive form of surgery in which doctors knock you over the head with a frying pan, and while your lights are out, force the shoulder through a normal range of motion to break the ice of the frozen shoulder.
What? What’s that?
Oh, I’m told they don’t use frying pans any more. A general anesthetic is used instead.
But it still sounds brutal.
Getting to Know Hydroplasty
A relatively new treatment that Johnson heard about and decided to undergo is called a Shoulder Joint Capsule Distension (a.k.a. hydroplasty). Under a local anesthesia, the joint capsule is filled with mixture of saline, anesthetics, and a small dose of steroids to stretch it out, much like blowing up a balloon. This procedure is followed up by “intense” physical therapy to break down the adhesions.
Johnson said the procedure was “quick, easy, relatively painless, and couldn’t have taken longer than 10 minutes.” He said that the physical therapy started immediately after the injection, and continued for one hour every day for the following two weeks, followed by 30 minutes every other day for another week, with additional “homework.”
Or, as Johnson describes it:
“That was one meaning of intense when my orthopedic doctor described the physical therapy requirements -- it required a real commitment and the ability to manage so many appointments. The other meaning of intense was the physical therapy sessions themselves. I listened to my shoulder make unnatural sounds,” while the therapist moved his arm around, said Johnson, adding, “all I could do was breathe through the pain.”
After the first intense physical therapy treatment Johnson was unsure about the course of action he’d signed up for. But two days into the treatment, he was back on the court, playing basketball again with, “very little pain and dramatic range of movement.” Johnson said the most challenging part was “convincing my brain to use my left arm again!”
Well over a year down the road, Johnson says his left shoulder still feels good, and he wonders why the hydroplasty isn’t “a better-known option for treating frozen shoulder.”
But now that his left shoulder is back in the game, he’s starting to worry about his right shoulder, which is starting to show some early signs of adhesive capsulitis. Sorry to say that frozen shoulder often jumps from one side of the body to the other. In doctor-speak from Medscape, “bilateral shoulder involvement is rarely simultaneous and instead occurs sequentially.” A mixed blessing to be sure. It would really suck to have both shoulders frozen at the same time.
If Johnson’s right shoulder gets worse, would he sign up for another round of hydroplasty with intense physical therapy?
“I would do it again in a heartbeat, as soon as my doctor feels it’s an appropriate treatment,” he said, adding that he'd push his doctor to move more quickly on his right arm. "That is my shooting arm, so I wouldn’t want to wait so long.”
Thanks to our correspondent Wil Dubois for digging into this topic for us, and of course to our friend Scott Johnson for being so open and willing to share his story!
Have you experienced frozen shoulder? If so, please share your POV in the comments section below.