Fort Worth, Texas,
25
September
2017
|
10:14 AM
America/Chicago

Lady Gaga has Fibromyalgia. What Parents Need to Know About This Disease.

A child living in constant pain and how it can be treated

Lady Gaga is back in the news and we’re interested.

We will let her Little Monsters promote her new documentary and most recent album, we want to focus on why she says she had to cancel her European tour due to constant pain.

"I use the word 'suffer' not for pity, or attention, and have been disappointed to see people online suggest that I'm being dramatic, making this up, or playing the victim to get out of touring," Lady Gaga wrote. "If you knew me, you would know this couldn't be further from the truth. I'm a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. They are also keeping me from what I love the most in the world: performing for my fans."

The pop star later clarified on social media that the cause of her constant pain is Fibromyalgia. 

So what is Fibromyalgia?

“Pain comes in 3 varieties: pain from damaged tissue (nociceptive), pain from damaged nerves (neuropathic) and another type known as functional pain,” Artee Gandhi, M.D., medical director of the Pain Management Program at Cook Children’s. “Fibromyalgia is in the category of functional pain in that pain arises from neurological dysfunction and not tissue damage.”

To better understand what Dr. Gandhi means, she explains the “Gate Control Theory of Pain.”

Normally, if you were to hit your thumb with a hammer, pain signals would be sent along acute and chronic pain fibers to the spinal cord where the ‘gate’ is open. This pain message is then sent to the brain where the pain experience is perceived. This perception of pain depends on your genetic makeup, your coping mechanisms, what you have learned from others, your friends, parents, etc. So, to feel better you begin rubbing your thumb and messages are sent along touch and pressure fibers to the spinal cord causing the “gate” to close. No more pain messages are sent to the brain. You feel better and you move on.

“In fibromyalgia, the thumb heals but instead of the gate closing, it stays open and continues to send pain messages to the brain,” Dr. Gandhi said. “After time the area of pain spreads, becomes more sensitive, and hurts even if you touch it lightly. The pain is no longer from the site at which the pain is perceived to be but rather in the pain system itself. Dr. Gandhi explains this phenomenon of altered and exaggerated pain response is known as central sensitization and encompasses conditions such as fibromyalgia, irritable bowel syndrome, chronic daily headaches, postural orthostatic tachycardia syndrome (POTS), and chronic pelvic pain from endometriosis.”

Patients often present with widespread pain along with tenderness to touch, sensitivity to bright lights, loud noises, dizziness/lightheadedness. Associated symptoms include numbness, tingling, nausea, loss of appetite, muscle cramps, vomiting, change in taste, autonomic dysfunction, chest pain, etc.

With a child living in constant pain, it’s easy to see that this can lead to depression, anxiety, fatigue, loss of friends, activities, social isolation, missed school, and disability. This takes a toll on the patient and entire family. According to current data, 20 percent of children suffer from chronic pain while 25-40 percent of these patients suffer from central sensitization.

“Genetic factors play a role in that fibromyalgia tends to cluster in families, especially among female relatives,” Dr. Gandhi said.

Chronic pain may begin in childhood, but usually carries over into adulthood.

The economic costs of pediatric chronic pain are in the range of $19.5 billion a year,” Dr. Gandhi said. At least 20 percent of young patients with chronic pain become adults with chronic pain.

“Parents of children with chronic pain are desperate for answers which often leads them down a long, complicated journey with expensive diagnostic studies, multiple hospital visits to clinics, ER, and inpatient hospitalization,” Dr. Gandhi said. “In the search for a biomechanical explanation for the pain, therapies are often ineffective and patients begin to feel helpless, only making the situation worse.”

To treat this condition, physicians begin with neuro-education explaining to patients and families that:

  1. The pain the patient is experiencing is real, as real as pain arising from disease at the site the pain is perceived.
  2. The problem is not with the joints themselves (or the head, GI tract, or other organ system) but in the pain system itself, and this explains why no test looking for disease in the tissues themselves is positive.
  3. The disordered pain processing system and its connection with the central nervous system can explain the symptoms the patient is experiencing.
  4. This is a “real” disease or disorder.
  5. There’s treatment available which can allow the patient to have a functional and productive life. It is a disease that can be managed just as diabetes and high blood pressure are managed.

The most effective treatment centers provide multiple options for patients, ranging from medications such as anticonvulsants, anti-inflammatories, muscle relaxants, antidepressants, interventional procedures or pain blocks, physical therapy, cognitive behavioral therapy, psychotherapy, biofeedback, to complementary medicine such as massage, yoga, acupuncture, reflexology. Treatment is a process aiming to “re-set” this disordered system.

For those patients that fail conventional outpatient treatment, Cook Children’s offers a comprehensive inpatient rehabilitation program. We are the only multidisciplinary clinic in Texas that services children from all over the state and draws patients from Louisiana, Arkansas, Oklahoma, and New Mexico.

Cook Children's Pain Management Program

 

 

Comments 1 - 1 (1)
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Susie Gostkowski
26
September
2017
Thank you for posting this article, I hope many of our young patients can identify that they are not alone with their disease. I am so glad Cook has these pain management programs. As a case coordinator for the Cook Children's Health Plan, I would like to know as a patient ages out of pediatrics, what transition options are available. Who does the Pain Management program refer to in our area?
Thank you so much!