In My Chronic Illness, I Found a Deeper Meaning – The New York Times – Jan 18 – by Elliot Kukla
I’m not usually a fan of “I accepted my pain, so it got better” stories because they so often reach an overly optimistic and, to me, unrealistic, outcome. But this essay paints a far more realistic picture of what acceptance might look like and how it could be nurtured.
…I had discovered that I was no longer trusted by my doctors about my own body or experiences.
I reported odd, terrifying and sudden physical changes; they recommended cognitive behavioral therapy and Weight Watchers. I felt exiled from the world of the well, isolated by thick walls of suspicion. Continue reading
Specially Timed Signals Ease Tinnitus Symptoms in First Test Aimed at the Condition’s Root Cause – Dec 2017 – Michigan Medicine – University of Michigan
This isn’t pain-related, but I know many of us suffer from tinnitus too. I also found it interesting because it shows the potential of various neurostimulation treatments that target brain activity.
Millions of Americans hear ringing in their ears — a condition called tinnitus — but a new study shows an experimental device could help quiet the phantom sounds by targeting unruly nerve activity in the brain.
In a new paper in Science Translational Medicine, a team from the University of Michigan reports the results of the first animal tests and clinical trial of the approach, including data from 20 human tinnitus patients. Continue reading
Scientists Surprised to Find No Two Neurons Are Genetically Alike – Scientific American
The past few decades have seen intensive efforts to find the genetic roots of neurological disorders, from schizophrenia to autism. But the genes singled out so far have provided only sketchy clues.
There are several other places to look for the missing burden of risk, and one surprising possible source has recently emerged—an idea that overturns a fundamental tenet of biology and has many researchers excited about a completely new avenue of inquiry. Continue reading
12 Things a Doctor With Chronic Illness Wants People to Know | The Mighty – Feb 2017 – Amy Stenehjem, M.D.
I’ve written this article to help educate those who want to learn about chronic illness.
It is written from my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent five years of my life homebound due to chronic illness.
I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand chronic illness. Continue reading
Is Fibromyalgia Making You Older? – Health Rising
Being in chronic pain is no fun, that’s for sure. Think of any area of your life – your work, your relationships, your mood, your finances – and see if chronic pain doesn’t impact it negatively. But is being in chronic pain itself dangerous? Some in the medical profession give chronic pain short shrift.
They assert that it’s the result of a false alarm from your central nervous system; i.e. while it’s uncomfortable, it doesn’t constitute a threat to you physiologically.
The pain in FM is certainly different from normal pain. Continue reading
Through the Looking Glass: Cerebral Spinal Fluid Leaks & Ehlers Danlos Syndrome – an Alternate Reality to ME/CFS? – Health Rising by Caroline Christian | Dec 1, 2017
I saw Dr. Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below).
I have ME/CFS and hypermobile Ehler-Danlos Syndrome (hEDS) and was referred to him by my autonomic specialist at Stanford because my orthostatic intolerance (OI) picture is a bit muddy and because hEDS, a connective tissue disease, is a risk factor and can cause aneurysms and spontaneous leaks from the dural sac (the tough outermost membrane of the spinal cord and brain). Continue reading
Nighttime Opioid Combination to Treat Fibromyalgia With PTSD – Brandon May – September 07, 2017
Patients with PTSD may present with underlying and undiagnosed fibromyalgia, which contributes to poor sleep and further pain amplification.
“Persisting fibromyalgia can intensify associated fibrocytic symptoms resulting in worsening of the underlying primary condition, even if that primary condition is not pain associated”
Dr Figueroa recommends a nighttime administration of 50 mg tramadol and 4 to 8 mg tizanidine at 7 pm for patients with fibromyalgia and PTSD.
What? He’s recommending not only an opioid but also a muscle relaxant – together! Continue reading
Avens Publishing Group – Ehlers-Danlos Syndrome or Disease? – July 2014 – Journal of Syndromes
Although first described in 1892 by Tschernogobow in Moscow, the medical history of Ehlers-Danlos syndrome (EDS) begins with Edward Ehlers’s description in 1900 in Copenhagen
Several avatars would come to stymie its identification to this day, despite its frequency, and foster confusion with other pathologies.
The first of these is the description by Alexandre Danlos (1908), who particularly emphasized a sign: excessively stretchable skin which would become solidly anchored in the minds of doctors who, even today, use it to rule out the diagnosis if it is not found. Continue reading
It’s Nothing Personal, Yoga, But You Ruined My Life: Raising Awareness of EDS
Perhaps it’s too harsh to say yoga ruined my life, but it has given me chronic pain and joint issues that forced me to completely change my daily routine.
All you yogis out there might be wondering- how is that possible?
Well, unbeknownst to me, yoga is the last thing a person with my condition should do. Continue reading
Living with Ehlers-Danlos Syndrome – Reviewed by Susha Cheriyedath, MSc – Oct 26, 2017
Ehlers-Danlos Syndrome, in short, EDS refers to a bunch of hereditary connective tissue disorders.
Connective tissues are a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in the human body. Continue reading