Researchers Discover Chronic Pain Gene
August 15, 2010 by Sandy Robinson
Filed under FM Research, Pain
Researchers at the Hebrew University of Jerusalem have discovered a gene associated with susceptibility to chronic pain caused by nerve injury in people. The researchers’ findings were reported online on August 5th by Genome Research. This discovery should open the door for better understanding and treating of chronic pain.
Chronic pain is a really big problem with 20% of adults suffering from it. Some people are more likely to suffer more pain than others after the same types of surgeries or accidents and this is why researchers wanted to find out what the difference was among individuals with different pain levels in near identical situations. According to the article on ProHealth:
To accelerate research in this field, animal models are proving to be critical to understanding the underlying biology of chronic pain in human patients.
First, the international research team – led by Profs. Ariel Darvasi and Marshall Devor at The Hebrew University of Jerusalem and including scientists in Canada and Europe – identified a region of mouse chromosome 15 that likely contained a genetic variant or variants contributing to pain.
However, this region contains many genes, and the responsible variant remained unknown. Next, they undertook two fine-mapping approaches to narrow down the chromosomal locus to an interval of 155 genes. By applying bioinformatics approaches and whole genome microarray analysis, they then were able to confidently identify a single gene, CACNG2, as the likely candidate.
To further test the potential role for CACNG2 in chronic pain, the authors utilized a mouse strain harboring a mutant version of the gene that had previously been used in epilepsy research.
In testing the mice for behavioral and electrophysiological characteristics of chronic pain, they found that the observations were consistent with a functional role for CACNG2 in pain, even though it might be modest.
Their next project was to research human subjects. The researchers analyzed breast cancer patients who experienced chronic pain for 6 months or longer after they had either part or all of their breast removed. In these patients, they found that genetic variants of CACNG2 were significantly associated with this chronic pain.
The authors cautioned that although this association will need to be analyzed further, the result is encouraging in pointing to this gene as a significant factor in experiencing pain.
“The immediate significance is the mere awareness that differences in pain perception may have a genetic predisposition,” Darvasi explained.
“Our discovery may provide insights for treating chronic pain through previously unthought-of mechanisms.”
Fibromyalgia AWARE Sponsors Contest for Pain Awareness Month
August 4, 2010 by Sandy Robinson
Filed under FM Awareness, Pain
September is Pain Awareness Month and the National Fibromyalgia Association and their Fibromyalgia AWARE Magazine is sponsoring an E-card contest. The theme is “Pain Hurts Everyone”.
Put your imagination to work and create a still image E-card to help spread the word about Pain Awareness Month. Winning artists and their E-card will be featured in an upcoming issue of Fibromyalgia AWARE magazine.
For the contest rules and guidelines, please visit the link I’ve included below…
Pain Awareness Month E-Card Contest
Increase In Low Back Pain with Weight Loss
August 1, 2010 by Sandy Robinson
Filed under ME/CFS, My Journey, Pain
I know this sounds weird whenever I tell people but the more weight I lose, the more my lower back hurts. I have degenerative disc disease and some herniated discs in my lower back and arthritis as well. I also have some herniated discs in my upper back (between my shoulder blades) and in my neck. The pain is getting worse throughout my spine as I lose weight, but I notice it the most in my lower back. I have lost 20 pounds since the beginning of June and I have always found that in my own personal experience, the less I weigh, the more my back hurts. I know – it doesn’t make sense – doctors look at me like I’m nuts – but the pain I feel is very real and it is getting worse.
I feel better otherwise – I have more energy, my leg and knee pain has decreased – but the back pain is worse. I am hoping that someone will read this and will be able to tell me that they have heard of this happening to someone else they know or something. Any thoughts?
New Chronic Pain Medication May Relieve Pain Without Addiction
July 29, 2010 by Sandy Robinson
Filed under Fibromyalgia, Pain
Columbia University Medical Center researchers have given many chronic pain patients hope with a patent on a potential new pain drug that focuses on the “on/off” switch to pain that the researchers found 4-years ago in their studies. The new drug, which they have named “N60″, has proven to be powerful against pain in animal trials while avoiding tolerance, addiction and sedation problems. The researchers are just now planning on beginning the human trials, so unfortunately, everything is just in the beginning phases at this point. Approval and when it will be available is still unknown and will probably not likely be soon.
This is how the researchers describe pain in the ProHealth article:
Pain is a perception in the brain triggered by signals sent along nerves in the peripheral nervous system. It is a sensation that serves as a defense mechanism for the organism, but how it works is only beginning to be understood. Scientists now know, though, that there are several pathways by which the brain perceives different types of pain.
The chronic pain team, led by Dr. Richard Ambron, Professor of Pathology & Cell Biology, began to develop N60 after his colleague, Dr. Ying-Ju Sung, Assistant Professor of Clinical Pathology, discovered the pathway that neurons use to inform the brain of an injury.
Left uncontrolled, this pathway persistently alters the electrical properties of the neuron, ultimately causing chronic pain.
The researchers at Columbia University Medical Center found out that there is a protein in the pathway called “PKG” that acts like an “on/off” switch. As long as the switch is on, the pathway is activated and the brain continues to receive signals that are perceived as pain, even after an injury has healed.
Sung and Ambron quickly realized that PKG would be an excellent target for drug development.
• Since PKG is specific for the biochemical signaling involved with chronic pain, shutting off PKG will not prevent a patient from feeling fresh injuries.
• It also operates in the peripheral nervous system, rather than the central nervous system (brain & spinal cord). This means that a drug that blocks PKG does not have to cross the blood-brain barrier, a formidable challenge in drug development.
“The only drugs that work consistently on chronic pain are opiates and anti-depressants,” said Ambron. “A significant problem with opiates is that extended use often leads to addiction.”
“Everyone is looking for a solution that is not addictive,” Sung added. “There’s increasing concern, from clinicians, patients, and regulatory agencies, with drugs that act on the central nervous system – where addiction can develop.”
“We believe a compound like N60 has significant potential to transform the way chronic pain is treated,” Ambron said.
“If it works the way we think it can, we may be able to alleviate chronic pain in some of its most intractable forms without the risk of addiction, a problem that conveys a whole set of economic and social issues for our country and society at-large.”
Living Daily with Pain Around the Clock
July 10, 2010 by Sandy Robinson
Filed under Fibromyalgia, ME/CFS, Pain
When I first became sick 20 years ago, I never, ever imagined that I would live 20 years with the daily pain that I have had to endure. We hear all of the time that a person can deal with anything when they know that it is short-term, even pain. As women, we are used to pain: labor pain, menstrual cramps and pain, and the other pains of just having the privilege of being female. But even some of the most terrible pain we experience, such as labor pain, is made bearable because we know at the end of it there will be a reward: a beautiful baby to love and cherish. But as chronically ill pain patients, we have no rewards at the end of our long days filled with pain. We search endlessly for the purpose for our pain and pray that maybe tomorrow will be the day that we will get some relief from our misery.
I have lived with pain and sickness for 20 years. A total of 240 months; 87,600 days; 2,102,400 hours. That is a lot of time spent being miserable and people expect you to just “suck it up”; “get over it”; “move on”; and “deal with it”. I have spent almost 90,000 days of my life feeling pain around the clock, even with the aid of prescription pain medications, and while I feel that I have done a damn good job of “dealing with it” on a daily basis, living with chronic pain is not easy and is not for the weak-minded.
I wrote a post a while back that it takes strength to have ME/CFS & Fibromyalgia and it takes great strength to deal with chronic pain. Pain sufferers are always fighting a war because pain management is a joke, really. We are given pain medications. After a while, we build a tolerance to those drugs. Then our drugs are increased. We build a tolerance to those drugs. They are increased again or changed to stronger or more addictive drugs. If we take too many because we can’t cope with the pain, we are called “addicts”, but if we don’t take them at all, the pain is so severe we can’t get out of bed and work or take care of daily functions and then we are “lazy” and “not trying hard enough”. No matter what we do, it’s never the right thing. We are losers in society’s eyes.
No one wants to be our friend because heaven forbid if we need someone to talk to we are told we are “whining”. Our families abandon us because no one wants to be around the sick, pain person again – we are blamed for being “too depressing” and “no fun”. When people say things like this about the people they are supposed to love, do they ever stop and think about how their life would change if the shoe were on the other foot? Of course not.
The “Campaign to End Chronic Pain in Women” Launched on Capitol Hill
May 21, 2010 by Sandy Robinson
Filed under Fibromyalgia, Interstitial Cystitis, ME/CFS, Pain, Women's Health
Thanks to the CFIDS Association for emailing the following press release and information on the Campaign to End Chronic Pain In Women.
The following press release about the launch of the Campaign to end Chronic Pain in Women was sent to more than 1,000 media outlets across the nation yesterday after an event on Capitol Hill that attracted congressional staff from 35 offices, leaders of women’s organizations and health organizations and reporters. The event was held in cooperation with the Congressional Caucus on Women’s Issues at the Capitol Visitor Center.
After the event, leaders of the CFIDS Association of America (Kim McCleary), the Endometriosis Association (Mary Lou Ballweg and Carol Drury), the TMJ Association (Terrie Cowley and Deanne Cleare) and the National Vulvodynia Association (Christin Veasley) met with staff in the offices of the Senate Majority Leader (Senator Harry Reid), the Speaker of the House (Rep. Nancy Pelosi), chairman of the Senate Health, Education, Labor and Pensions and Appropriations Committees (Sen. Tom Harkin), chairman of the Senate Aging Committee (Sen. Herb Kohl), chairman of the House Energy and Commerce Committee (Rep. Henry Waxman) and chairman of the Health subcommittee of the House Energy and Commerce Committee (Rep. Frank Pallone) as well as other House authorizers and appropriators. They discussed the policy recommendations in the report and gained important feedback about ways in which the campaign goals can be incorporated into new programs being implemented under the Patient Protection and Affordable Health Care Act.
PRESS RELEASE
For Immediate Release
May 19, 2010
The Overlapping Conditions Alliance Launches the “Campaign to End Chronic Pain in Women” on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare
Campaign Releases Comprehensive Report & Groundbreaking Campaign Film on Chronic Pain in Women
WASHINGTON D.C. (May 19, 2010) – The Overlapping Conditions Alliance today launched the Campaign to End Chronic Pain in Women, an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign aims to improve the quality of women’s lives by raising awareness about chronic pain conditions that disproportionately impact women, as well as the neglect, dismissal and discrimination faced by women living with chronic pain under the current U.S. healthcare system.
A representative from the office of Rep. Tammy Baldwin (D-WI), a leader of the Congressional Caucus for Women’s Issues, provided opening remarks. Congressional staffers, patients, and other Washington D.C. area advocates for women’s health issues were also in attendance.
“While healthcare reform legislation took an important first step to address chronic pain issues, we have a lot of work ahead of us,” said a representative for Caucus Co-Chair Rep. Tammy Baldwin (D-WI). “I look forward to working closely with the Campaign to End Chronic Pain in Women to teach our healthcare system how to confront chronic pain and ensure that no woman suffers needlessly.”
At today’s press conference the Campaign released a groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which offers policy recommendations that could save the government billions of dollars in wasted healthcare costs each year. The hour-long launch event also featured the premiere of the short film, Through the Maze: Women and Pain, and the unveiling of the Campaign website www.endwomenspain.org/. Following the event, Campaign leaders are scheduled to meet with targeted congressional offices to discuss key report findings and policy recommendations.
“This campaign is about the pattern of neglect, dismissal and discrimination of women’s chronic pain conditions, which serves as the latest example of one of the many gaps in the U.S. healthcare system that deepen human suffering,” said Kim McCleary, President & CEO, CFIDS Association of America.
Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was commissioned by the Campaign, examines the current lack of effective treatments and research funding for chronic pain conditions that predominantly affect women, and how improvements in research, education and access to effective treatments could contribute to improved quality of care and cost control.
“The costs to patients go beyond dollars,” said Terrie Cowley, President, TMJ Association. “Patients can lose their dreams and hopes of careers, of a family, of a quality life and even life itself. This is why it is so important that cost effective investments in research be made, and that a campaign is created to educate healthcare professionals and promote public awareness of these conditions.”
According to the Campaign report, in 2009 the National Institutes of Health invested only $65 million in research into the six chronic pain conditions highlighted in the report – chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, temporomandibular (TMJ) disorders and vulvodynia – just two-tenths of one percent of its total budget. That is an average of just $1.33 for every affected woman and represents less than one-tenth of one percent of the annual estimated cost of these conditions.
“Women in our society are oftentimes raised with the notion that it’s normal to suffer,” said Mary Lou Ballweg, President & Executive Director, Endometriosis Association. “Education of healthcare professionals and the general public is essential during this time of reform, to ensure that women in this country no longer have to suffer in silence.
The Campaign includes volunteer leaders from four non-profit patient advocacy organizations, including The CFIDS Association of America, The Endometriosis Association, The National Vulvodynia Association, and The TMJ Association.
“Chronic pain doesn’t just affect the sufferer – it affects each and every one of us and every part of our society,” said Christin Veasley, Associate Director, National Vulvodynia Association. “By appropriately investing in research, educating medical professionals and the public at large, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole.”
About The Campaign to End Chronic Pain in Women:
The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign is made up of volunteer leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. Pfizer helped to offset the costs of campaign materials. For more information, visit www.endwomenspain.org/.
New Formulation For Oxycontin Approved By FDA
May 9, 2010 by Sandy Robinson
Filed under FM Treatments, Interstitial Cystitis, Pain, Treatments
The FDA has approved a new forumlation for controlled-released Oxycontin, a powerful pain medication that is typically prescribed severe, chronic pain. The goal of this new Oxycontin formula is to help discourage abuse and overuse of the drug. This could be really good news for chronic pain sufferers who have doctors who are afraid to prescribe the drug because of the previous threat of misuse. This new formula should put doctors at ease when prescribing Oxycontin and more patients who are legitimately suffering from pain should be able to get the drug.
The new Oxycontin formulation will be created in a way that the medication cannot be crushed for snorting or liquified for shooting up. If the new formula gets wet or someone tries to dissolve it, the drug will become gummy. Because there is just a reformulation of the drug, the timetable for a potential generic version hasn’t changed. More good news.
The Interstitial Cystitis Association was involved in the stakeholder teleconference FDA held on Wednesday, April 7 to announce approval of the new formulation. The ICA reports:
During that teleconference, FDA’s Bob Rappaport, MD, explained that the agency will require the company to do a postmarketing study to collect data on how much the new formulation reduces abuse and misuse of this opioid. In addition, he said, FDA is requiring a “Risk Evaluation and Management Strategy” (REMS). This REMS will be a straightforward one that applies to this drug only: a medication guide will be issued to patients, and prescribers will be required to be educated about the appropriate use of opioid analgesics in the treatment of pain.
FDA didn’t take this opportunity to issue a REMS for all opioids. That’s still open for comment from legitimate pain patients like you who need these medications. Please continue to tell FDA how important your access to these medicines is and that you don’t need more barriers to receiving them.



