My 15 year old daughter has had uncontrolled diabetes for some time, but she now understands the need for better control and monitoring herself more closely. She was recently diagnosed with anemia for which she will begin taking an iron supplement, and for several months she has been experiencing (which she did not tell me about) swelling in her arms (from the elbow down) and leg (from the knee down) with stiffness and limited motion in her joints. This swelling looks like edema. When I took her to a walk-in clinic the physician on duty called the head of pediatric endocrinology at a children’s hospital here and said this is common in kids who are not in control. Her endocrinologist said it could be diabetic atrophy or it could possibly be rheumatoid arthritis.

She did have a Rheumatoid Factor test that was negative, but I have heard there are many false negatives with this test. I have heard also that rheumatoid arthritis is more common in children with diabetes. Is this true? What course of action do you recommend? Are there any other tests you would recommend?

It is impossible to know what you are describing, but it does not sound normal. There is a painless joint condition called limited joint mobility (LJM for short). I have a chapter in my textbook that discussed this, but there are also many research and review articles, many written or co-authored by Professor Arlan Rosenbloom and his colleagues. LJM often reflects glucose control so the higher the glucose levels and the longer control is poor, the more glucose is deposited in the skin collagen. This makes the skin stiff and affects the little fingers first, then the other fingers and lastly the larger joints. hemoglobin A1c is usually very high. All arthritis tests are negative and the joints themselves are normal since the tight skin causes the contracture. This is a harbinger of other complications coming early and all is directly related to hyperglycemia.

If you are describing actual edema, then this could also be from omitting insulin or intermittently taking insulin. Usually this occurs with very high A1c levels as well and is also very dangerous. DKA [diabetic ketoacidosis] is more common in such circumstances as is growth failure, menstrual irregularities or delayed puberty, liver enlargement and a condition called Mauriac syndrome. It is all “cured” by making sure that insulin is being given. In teenagers, this must be the job of the parents. Psychological counseling is imperative since such youngsters are often extremely angry either at family circumstances, having diabetes or the combination.

In any case, you should be discussing this with an experienced diabetes team who can do the appropriate diagnostic evaluation, get appropriate rheumatology consultation if needed and then figure out a plan of action and treatment. It isn’t often that a general family doctor, general pediatrician or general internist would have sufficient experience to sort this complicated picture out.

SB