Why are there so many different names for amplified musculoskeletal pain syndromes?
There are a lot of names for amplified pain since it can assume several forms and over time some doctors have divided amplified pain into different groups. Additionally, over time the name for the same condition has changed or some centers prefer their own name. It is somewhat like the proverbial blind men examining an elephant – some think the elephant is like a hose (the trunk), some like a wall (the side), some like a tree (the leg) and others like a snake (the tail).
Some children have very localized pain, that is, in just one part of their body. Some but not all of these children will have overt autonomic changes, that is, the hand or foot is cold, purple or blue and may be swollen and sweaty. If there are these autonomic changes present, the diagnosis is complex regional pain syndrome (CRPS) (which used to be called reflex sympathetic dystrophy (RSD)). If there are no autonomic changes it can be called localized amplified musculoskeletal pain, myofascial pain, neuropathic pain, or localized idiopathic pain.
If the pain is in three or more parts of the body, it can be called diffuse amplified musculoskeletal pain, diffuse idiopathic pain, myofascial pain syndrome, or neuropathic pain (among others) and some of these children with diffuse pain may fulfill criteria for juvenile fibromyalgia. Some doctors call these children total body RSD or total body CRPS but that is a misnomer. Additionally, there are children with intermittent forms or a combination of forms, one can have CRPS of the foot and total body pain, or fibromyalgia at the same time.
CRPS is the most obvious form because there are classic physical findings. Older terms for CRPS include reflex sympathetic dystrophy (RSD), shoulder hand syndrome, Suduck atrophy and allogodystrophy. Because it is so recognizable, many physicians do not see the relationship between CRPS and the other forms of amplified musculoskeletal pain. However, there is a significant overlap between CRPS and the other forms of amplified musculoskeletal pain since so many children have CRPS and either diffuse or localized amplified musculoskeletal pain as well. Also there are many children who have had CRPS who later develop a different form of amplified musculoskeletal pain.
The term RND has been used to refer to all children with amplified musculoskeletal pain or to children with CRPS since the mechanism for the amplification of pain is thought to be the same. Amplified musculoskeletal pain is now the preferred term and is used in the Textbook of Pediatric Rheumatology. RND was the term we used in 2002 and that is why you see it in the name of the foundation – “The Childhood RND Educational Foundation, Inc.”
It doesn’t matter what you call it, it all hurts severely and much more than one would typically suspect. The pain is very real. Regardless of the type of amplified pain they have, most children respond very well to the intensive treatment programs that are available at eight different hospitals in the US and detailed in our video.