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Fibromyalgia pain: Let's connect

Fibromyalgia | Last Active: May 9 4:21pm | Replies (1332)

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@steeldove

clownscrytoo, Here's something that you may find helpful:
Published 2 years ago by Jennifer Nejman Bohonak in Medical Research, Patient Care
Neurologist Anne Louise Oaklander, MD, PhD, of Massachusetts General Hospital, is devoting her career to helping patients who suffer from unexplained symptoms, including chronic pain and itch, and syndromes, like fibromyalgia, whose cause is unknown.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms.”
She has received national and international recognition for her research. In 2013, her MGH lab discovered nerve damage to cells outside the brain (small-fiber polyneuropathy) was a cause for almost half of fibromyalgia cases. This gave many patients reassurance that the pain they felt was real and had a medical source.

Diagnosing the underlying neurological causes of mysterious symptoms can be challenging because there is no tumor, broken bone, malfunctioning organ or obvious physical sign that something is awry. “These are problems in the invisible wiring that controls our body’s functions,” says Dr. Oaklander, founder and director of the Nerve Unit at Mass General’s Department of Neurology.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms,” says Dr. Oaklander. “It’s really only at places like Mass General that are used to rare, unexplained diseases that patients can get a fair shake and get all of the latest technology and knowledge applied to understand their condition.”

Dr. Oaklander’s research has received national and international attention.
Dr. Oaklander believes some mysterious symptoms including chronic pain, itch, low blood pressure and gastrointestinal disturbances such as irritable bowel are sometimes caused by nerve cells sending faulty messages. “Even though there is no actual damage, it hurts no less,” she explains.

Discovering New Causes of Chronic Pain

Dr. Oaklander and her husband, MGH researcher Max Klein, PhD, published a study discovering a new type of polyneuropathy that causes chronic pain, fatigue, fainting and gastrointestinal problems in children and young adults. In this new “early onset small-fiber polyneuropathy,” it appears that patients’ immune systems are attacking their own nerve cells to trigger their symptoms. Because she learned their neuropathy was caused by an autoimmune problem, Dr. Oaklander was able to identify new treatments that addressed the underlying cause of the symptoms—a cure for the neuropathy, rather than just managing symptoms with pain medications. Many of these patients improved dramatically. She developed a new Immunotherapy clinic to serve this population.

Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains.
Dr. Oaklander’s team was also one of the first in the world to look at the question of whether nerve damage might cause fibromyalgia. Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains. For this study, Dr. Oaklander’s group gave fibromyalgia patients nerve tests and she collected tiny skin biopsies under local anesthesia.

Her lab then counted the numbers of pain-signaling nerves in the skin biopsies under the microscope. This showed that almost half of the fibromyalgia patients studied had small-fiber polyneuropathy, a nerve disease. Patients’ damaged nerves were sending faulty signals to the brain, causing pain, sleep and digestive problems. This first evidence of an objective medical cause of fibromyalgia was widely covered in the media, including in “USA Today” and “Scientific American Mind.”

Investigating Noninvasive Treatments

Dr. Oaklander’s team is starting research on noninvasive brain stimulation. Since the brain operates using electrical signals, electricity, as well as medication, can be used to change its firing. Earlier brain-stimulation devices required surgical implantation into the brain, which, although effective, deterred many patients. Her lab is working to determine whether brain stimulation performed noninvasively, from outside the body, can effectively treat neuropathic pain. This requires neither surgery nor medications.

Philanthropy enabled Dr. Oaklander to purchase equipment for the noninvasive brain stimulation lab and to begin her research. The support of donors helps her push the field closer to finding answers for more patients with unexplained symptoms.

“We want to uncover the underlying causes of some of the chronic pain diseases.”
“Modern medicine has moved beyond merely symptom management to finding the cause of disease and eliminating it,” Dr. Oaklander says. “Our lab is trying to move the pain field in the same direction. We want to uncover the underlying causes of some of the chronic pain diseases because then, the causes can be treated and patients may be able to find relief for their chronic pain without relying on painkiller medications.”

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Replies to "clownscrytoo, Here's something that you may find helpful: Published 2 years ago by Jennifer Nejman Bohonak..."

Hallelujah! Hooray for Dr. Oaklander. I get so upset when a specialist says there is nothing wrong- all their tests came back normal- so they look at me like oh she's just a typical woman complaining about everything. I leave feeling worse than ever and cry all the way home. Sometimes I feel so worthless. The fatigue is almost worse than the pain. No one seems to really understand except my husband. I went to a Mayo Clinic pain management session and he attended with me. He heard from others and the medical people that were leading it and learned what I am going through.

@noenergylady Check on line for http://www.neuropathycommons.org and look for doctors around the U.S. and the world that are working with Dr. Oaklander's research and methods. I'm working on getting an appointment with a doc at Washington University School of Medicine who I found on that site. Good luck!