“My principal asked me what was wrong and I said I hadn’t slept well in over a week.”
Those words are from Anna Flynn, a retired teacher in the Houston area who suffers from fibromyalgia. (Her story)
Anna and other fibromyalgia sufferers might want to pay attention to a company that has a drug in development that is designed to improve sleep quality in patients.
Tonix Pharmaceuticals is developing medicines to help the millions of Americans who suffer from central nervous system (CNS) disorders.
If you suffer from fibromyalgia, and at least five million Americans do, you know it’s a condition that causes chronic, widespread pain and unrefreshing sleep. Tonix says approximately 90% of the fibromyalgia patients complain of poor sleep quality.
Jenny Schwarz, an East Helena, Montana woman who uses painting as a way to fight fibromyalgia, agrees.
“I’ve had major issues with sleeping,” she told us. “I have heard that a full night’s rest would greatly reduce my pain, but I don’t remember the last time I slept through the night.” (Her story)
Tonix Chief Executive Officer Dr. Seth Lederman understands.
Dr. Lederman, who was trained in internal medicine and rheumatology at Columbia University’s Presbyterian Hospital, believes as we learn more about fibromyalgia we are learning it is about more than pain.
“People are beginning to understand that fibromyalgia is not just a pain disorder,” he said. “There’s increasing understanding that it is about much more than pain.”
He said the brain is turned on to be hyper responsive and hyper sensitive to all sorts of sensory information and that fibromyalgia patients have increased sensitivity not only to touch but also to sound, taste, light, and smell. He said, all of their senses are “turned on”.
“If we can improve the sleep quality in fibromyalgia patients, then their other symptoms will improve also,” he said.
Many fibromyalgia patients will tell you that insomnia is a big problem.
Dr. Lederman says it’s less about insomnia and more about the quality of sleep.
“We think a more holistic view of fibromyalgia is emerging and when patients get the opportunity to talk about sleep quality, they relate to it,” he told the National Pain Report. “I think it’s important for doctors to understand what this sleep problem is. They need to ask the question, ‘When you wake up, do you feel refreshed?'”
Darbi Beals Stolk, another fibromyalgia sufferer who was featured on the National Pain Report, was a registered nurse. She understands the importance of sleep.
“After a while those with Fibromyalgia forget what a good night’s sleep feels like,” she said. “In the past medications did little to help because they didn’t allow for deep restorative sleep and had many adverse side effects.”
It’s that issue that Tonix is trying to address.
Tonix is running a second study with the drug. It is currently enrolling patients with post-traumatic stress disorder (PTSD).
“In theory, chronic pain is not part of PTSD but then as you study the problem over 90% of PTSD sufferers complain of chronic pain,” Dr. Lederman said.
Leave it to a teacher, Anna Flynn, to sum it up.
“For those who have never had problems with their sleep patterns let me tell you repeated a night with a solid sleep makes all the difference in the world. Your whole life is so much better.”