JPFS

Juvenile Primary Fibromyalgia Syndrome
JPFS is even less known and understood than FMS, Fibromyalgia Syndrome. 

WebMD says, "when kids complain of vague symptoms, like fatigue, achiness, and difficulty sleeping, they could be experiencing any one of a number of common illnesses. One condition that's easy to overlook in children and teens is fibromyalgia, which causes pain in the muscles and soft tissues surrounding the joints. Fibromyalgia can be hard to spot in children because it's much more common in adults. Most of the time fibromyalgia affects women over age 18. Even so, between 1% and 7% of children are thought to have fibromyalgia or similar conditions. Fibromyalgia is part of a group of conditions collectively known as musculoskeletal pain syndrome (MSPS). In children, fibromyalgia is called juvenile primary fibromyalgia syndrome (JPFS). If a child also has arthritis or another disease related to the fibromyalgia, it's called juvenile secondary fibromyalgia syndrome."

Cincinnati's Children states, "Juvenile primary fibromyalgia syndrome (JPFS) is a condition that causes children and teenagers to experience musculoskeletal pain “all over” and fatigue as their main symptoms.  Unfortunately, we still don’t know what causes JPFS. This condition is also sometimes called chronic widespread pain or pain amplification, just a few of the other names you might hear involving similar symptoms. Patients with JPFS are sometimes cared for by a rheumatologist because of the symptoms of muscle and joint pain. Someone with primary fibromyalgia does not have any other chronic illness or illnesses. It is important to know that there are some patients with other chronic diseases (like arthritis or lupus) who develop similar symptoms, and we call that secondary fibromyalgia."

Because JPFS is so rare, it is difficult to diagnose. I began exhibiting symptoms years before my diagnoses, and even when I received a diagnoses many doctors did not agree. Those who exhibit these types of persistent symptoms are often told they are faking it, making it up, and attention seeking. Even now, I find many doctors refuse to listen to me and write it off as one of the many other disorders, diseases, and often dietary problems that it is not.  

For children and teens, this is frustrating. "I'm not making it up. It is real. I hurt." For Parents, confusing. "They seem to be in actual pain. I wish I could make it go away. They wouldn't make this up, would they? Is it real? What could it be?" For family and friends, lack of understanding. "Are they in pain? Are their parents giving them all they need? Why would they need extra attention? Is it real?" 

Life for those with Fibromyalgia looks, from the outside, very similar to those without; but it feels vastly different. There is a never ending list of symptoms ranging from physical to mental pain, internal to external problems, and mild to severe interference of daily life. No two people have the same symptoms of the same degrees at the same rate. We are all alone in our journey, which is why the highest cause of death in Fibromyalgia results from suicide. 

There is no cure. 

Join me in raising awareness.