What Is Fibromyalgia?

So life got a little hectic and my blog got pushed to the back burner for a few days. To get back into it, I thought I would start by answering a question we get often What is Fibromylagia? I am going to give you the very basic "clinical" description and then go more into depth of what Fibromylagia truelly means for a child and how it has affected our family.

 

What is Juvenile Primary Fibromyalgia Syndrome (JPFS)?

Juvenile Primary Fibromyalgia Syndrome (JPFS) causes a person to experience musculoskeletal pain “all over” and fatigue as their main symptoms. JPFS is a condition that has no known cause. Traditionally, patients with JPFS are cared for by rheumatologists because of the symptoms of muscle and joint pain.
- http://www.cincinnatichildrens.org/health/info/rheumatology/diagnose/jpfs.htm


When you read just the basic description, it sort of appears to be "not that bad". That's the problem, Fibromylagia is one of the most misunderstood diseases/disorders out there. There are still even some stubborn doctors and people that think it's not even a real problem, that it's created by someone thinking they have a problem. This idea was even common about 15 years ago. About 10 years ago it was believed this disease only affected adults. In about the last 5 years has there been more studies done, providing more information about Juvenile Fibromyalgia, but even now, it's still commonly believed that it can't show up until puberty. It is believed that it may be caused by neurotransmitters miss-firing pain signals, but even though this is a commonly accepted theory, it is still not known for sure if this is what happens or why it happens. There is also still debate about whether there is a hereditary gene passed on that predisposes someone to developing Fibromyalgia. Since my sister was also diagnoses with Juvenile Fibromyalgia, my vote is for it being hereditary.

That is what makes Mykayla's case so rare. 1 in 6 young girls will develop Fibromylagia around puberty. Pretty common right!?! It becomes more uncommon in children between 7-12 and, as it's been said to us, almost unheard of in children under 7. Mykayla is 4 (almost 5) and started showing the full blown symptoms at around 2.

A better description of our everyday life and her everyday struggle can be found at WebMD.com.

Symptoms of Fibromyalgia

What Are the Symptoms of Fibromyalgia?

Symptoms of fibromyalgia include:

• Chronic muscle pain, muscle spasms or tightness, weakness in the limbs, and leg cramps
• Moderate or severe fatigue and decreased energy
• Insomnia or waking up feeling just as tired as when you went to sleep
• Stiffness upon waking or after staying in one position for too long
• Difficulty remembering, concentrating, and performing simple mental tasks
• Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome)
• Tension or migraine headaches
• Jaw and facial tenderness
• Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
• Feeling anxious or depressed
• Numbness or tingling in the face, arms, hands, legs, or feet
• Increase in urinary urgency or frequency (irritable bladder)
• Reduced tolerance for exercise and muscle pain after exercise
• A feeling of swelling (without actual swelling) in the hands and feet
• Painful menstrual periods
• Dizziness

Fibromyalgia symptoms may intensify depending on the time of day -- morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time. They may also get worse with fatigue, tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations (such as just before your period or during menopause), stress, depression, or other emotional factors.
If the condition is not diagnosed and treated early, symptoms can go on indefinitely, or they may disappear for months and then recur.

As you can see, once you break down all the symptoms, it is not just "all over pain and fatigue". This is a condition that can render a bouncy four year old to a limp, lethargic, lump of child  in a matter of minutes. She can happy and laughing to crying and miserable in a blink. There are periods of little to know symptoms, called remission. When symptoms return, it is referred to as a "flare". Flares can be caused by anything. A virus (or bacterial infection), poor nights sleep, stress, hormone changes, vitamin deficancy, food intolerance, physical activity, cold, heat, sun exposure or just because. It also puts extra stress on the body, which compromises the immune system. For Mykayla, this means that even just a simple "cold" can cause fevers over 102.

How has this affected our family-
How hasn't it!?! Ever had to deal with a cranky 4 year old? Try dealing with one who also has a migraine, a fever, all over pain and stomach cramps. How about those fun temper tantrums? Well those stress her body, which sends into a flare (which can last a few hours or a few days). So we have to deal with the tantrum and then the aftermath. Mykayla is one of the few Fibro sufferers that has chronic daily stomach pain (like my sister), so even good days are not totally pain free. She can't be in public school or daycare because her compromised immune system cannot fight off all the infections she would be exposed to and because her random fevers are high enough to get her sent home (which would mean that even during a good remission, she would still be sent home at least once a week). This is why I'm a stay-at-home-mom. No one is going to employ someone who constantly has to leave for a sick child. Making plans is very difficult and we always have to have a back up in place just in case she flares up (especially since sometimes there is no warning, like when it happened during a recent shopping trip at Wal-mart). We must be very careful about her vitamin regiment and her diet, or we all pay the price. And mornings are the worst around here. Every morning she is a cranky, irritable mess until about 9. Since I'm not a morning person myself, we are quite the pair lol.

So in a nutshell, FYBROMYALGIA SUCKS! It's not imaginary, nor is it a disease that only affects older adults (or even older children for that matter). It is the invisible monster, undetectable by medical testing. It is a disease that continues to be misunderstood (even by doctors) and misdiagnosed. My hope is that my blogs about my daughter will help even just one parent. Give them hope that they will discover what is ailing their precious child. Fibromyalgia is difficult and life long, but it is very manageable. The most important part is to get a diagnosis (so you know what you're dealing with) and to find the treatment that works best for your child. And also, to not listen to the skeptics.

As one Rheumatology doctor put it- In a way, I feel worse for my patients with Fibromyalgia then those that have Lupus. With Lupus, we know what it is, we know what causes it, we know how to treat it. Fibromyalgia causes all the pain of Lupus, but because every case is different, some patients never find full relief. As a doctor, Fibromyalgia is a devastating diagnosis, because too often, once we confirm diagnosis, there is nothing more we can do.