I am an expert on frozen shoulder.  Believe me, it is not something that you want to be an expert on.

Frozen shoulder is the layperson’s name for adhesive capsulitis and is a shoulder condition that results in stiffness, decreased ROM (range of motion), and often incredible pain. If you want medical jargon and links to a lot of the literature about frozen shoulder, I suggest you check out a 2008 article by Manske and Prohaska.  Or just Google the term and you’ll find tons of information.  Suffice it to say that if you get frozen shoulder, you can’t move your shoulder very well and it hurts a lot.

I will be using term “frozen shoulder” only to mean adhesive capsulitis.  Some people and even doctors describe any shoulder stiffness as frozen shoulder.  If you can get rid of your “frozen shoulder” by doing a week’s worth of exercises in the shower, you don’t have adhesive capsulitis.

Diabetes is a huge risk factor for joining the frozen shoulder club.  Other risk factors include hypothyroidism, hyperthyroidism, Parkinson’s disease, cardiovascular disease, being middle-aged, and being a woman.  I win on four accounts:  woman, middle-aged, Type 1 diabetes, and hypothyroidism.  You don’t need to be middle-aged to win the lottery because I have a young Type 1 friend Cynthia who suffers greatly with frozen shoulder.

Adhesive capsulitis has 3 stages, each which can last 3-6 months or longer.  Following along with the “frozen” analogy, the first stage is called the “freezing stage” and may be excruciatingly painful as the ROM of the shoulder slowly decreases.  When I had my first frozen shoulder, I slept in a reclining chair alternating ice packs and a heating pad for a few weeks because it was painfully impossible to lay in bed.  My next two frozen shoulders were moderately painful, but very manageable.

The second stage is the called the “frozen stage”.  It is characterized by decreasing pain along with increasing stiffness.  My experience in this stage is that strengthening exercises may be helpful but any stretching beyond gentle is futile. With the shoulder capsule totally immobile and full of adhesions, it won’t stretch and you run the danger of injuring other parts of your shoulder and neck if you push it too hard.

The third stage is the “thawing stage” when your shoulder slowly returns to normal.  There is only minimal pain with the stretching exercises and you can feel the correct things stretching.  Most people eventually have a full recovery from adhesive capsulitis although people with diabetes are less apt to achieve total remission.  Some people end up having surgery to release the shoulder, but my doctors are very anti-surgery for the condition. The vast majority of people only get frozen shoulder once or at most once in each shoulder.  Unfortunately another prize for having diabetes is that you may get it repeatedly.

The exact causes of frozen shoulder are not known but terms like collagen fibers, platelet derived growth factor, glycosylation, poor circulation, inflammation, and fibrofatty infiltration are tossed around.  Like most things with diabetes, doctors are quick to blame poor blood glucose control for the condition.  Upon diagnosing my third frozen shoulder in May of this year, my rheumatologist immediately asked “What was your last A1c?”  Rightly or wrongly, I was somewhat offended by the question because my A1c’s are always quite low and within the lab normal range.  On the other hand, I have Type 1 diabetes and my blood sugars are miles away from being “normal.”  So maybe I shouldn’t get so huffy.

What most doctors don’t know is that recent studies, including those led by Thomas and Yian, indicate that A1c’s are not associated with the development of frozen shoulder.  These studies found that the strongest correlation for those with Type 1 was with duration of diabetes. Similarly in a Finnish study headed by Arkkila,  A1c levels for the previous five years had no correlation to the onset of frozen shoulder.  In fact, the Type 1 patients with frozen shoulder had a lower mean A1c than the Type 1’s without the condition.  Ironically for me, two of my three frozen shoulders have coincided with the lowest A1c’s that I have ever had.*

Frozen shoulder used to be listed on the last page of diabetic complications and was considered to be somewhat unusual.  More and more it is now being highlighted as a common problem for people with diabetes and it is often listed on the front page of complications.

I am not going to give a blow-by-blow account of my frozen shoulder history.  A synopsis is that my first one occurred on the left side after a shoulder injury in 2001 and was incredibly painful.  Along with physical therapy, time was the biggest healer and I was about 90% healed within a year.  My second one occurred about four years later on the right side.  It was not nearly as painful or debilitating as the first one, but it took longer to resolve. Number three is back on the left side and I’ve had symptoms for about 6 months.  I am optimistic that I will achieve at least a 90% remission.

I am not so confident that this will be my last dance with frozen shoulder.

Sue from New York is a contributing author to my blog and we are very close in age.  She has written about her frozen shoulder experience in a post which will be published on Monday.  It is uncanny how similar our stories are.  When you read her story, you will be reading mine.

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