May 21, 2009

Preventing Fibromyalgia Pain

Woman_in_pain I don't want the title to mislead you.  There's no foolproof way to prevent all pain when you have fibromyalgia.  But understanding how the FM pain cycle works can enable you to lessen the pain much of the time and even prevent some pain altogether. 

The first thing we need to understand is that people with fibromyalgia have a problem processing pain correctly.  Normally, pain is supposed to be an alert to tell you something is wrong that needs to be tended to.  If you cut yourself, the pain tells you to stop the bleeding and apply an antiseptic.  Once the wound is treated and begins to heal, the pain lessens and soon goes away altogether – unless you have fibromyalgia.  Read more...

April 14, 2009

Helping Others Understand Your Pain

ReadingLetter Do you find it difficult to explain to family, friends or co-workers what it's like to live with fibromyalgia or chronic pain?  Do others ever accuse you of being a hypochondriac, lazy or weak?  Do they question your need for opioid medications?  If so, you're not alone.  Every week I hear from people who are frustrated and discouraged because people in their lives don't understand. 

In an effort to help, I've written two letters that can be shared with people in your life who are having difficulty understanding what you are going through. Read more...

December 28, 2008

Opioids: Addiction vs. Dependence

Medication-tablets-150 One of the greatest obstacles chronic pain patients face in their quest for adequate pain relief is the widespread misunderstanding of the difference between physical dependence on a drug and addiction. Many patients, the general public, and sadly even some physicians fear that anyone taking opioid medications on a long-term basis will become addicted. As a result, pain patients are often labeled as “drug seekers” and stigmatized for their use of opioid medications. Worst of all, their pain frequently remains under-treated. 

To learn how to tell the difference between addiction and physical dependence, read:  Opioids:  Addiction vs. Dependence

June 16, 2008

Cymbalta – 2nd Drug Approved for Fibromyalgia

Fmsurgeryimage The FDA has approved Cymbalta for the management of fibromyalgia – almost exactly one year after Lyrica received the distinction of being the first drug ever approved to treatment this painful and often debilitating illness.   

Lyrica's approval gave legitimacy to fibromyalgia in the minds of many who questioned whether it was a real disease.  The approval of a second medication for FM can only add to its credibility.  It also gives physicians more options for treating FM patients, thereby increasing the number of doctors who are willing to try.

To learn more about Cymbalta, its use for fibromyalgia, and research findings, read "Cymbalta Approved for Fibromyalgia." 

April 04, 2008

HELP! Email Your Senator TODAY About Migraine and Headache Research!

Please, please, please... Read the letter below, then click the link in it and email your Senators TODAY!
Thank you!

TAKE ACTION!
Please Email Your Senator Today!

Dear Dr. Robert: 

Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill.

It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th.

  1. Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/issues/alert/?alertid=11231066&PROCESS=Take+Action  and send your message to your two US Senators
  2. Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders.

Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact.

Thanks again for your efforts.

Robert Shapiro, MD, PhD
William Young, MD,
Teri Robert, PhD
Brad Klein, MD, MBA

 

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September 22, 2007

Fighting headache and Migraine pain -- off to DC!

Capitol Not a single medication has ever been developed specifically for Migraine and headache prevention. Not one, yet we have seven triptans (acute medications used to abort Migraine attacks).

For quite some time, I didn't understand how or why that would be. Some people theorized that the pharmaceutical companies could "cure" Migraine disease, if they wanted to, but were making enough profit on medications such as triptans that they didn't want to produce the "cure." Although I can understand that line of thinking, that's not the case.

In a nutshell, I found that we owe our lack of effective treatments to lack of National Institutes of Health (NIH) research funding for Migraine disease and headache. Most disease research is funded by the NIH. Once that research is available, the pharmaceutical companies have a basis from which to develop treatments. That's why some people say that one medication and six "me-toos" - the triptans - have been developed for Migraine instead of multiple more unique medications.

Take a look at this excerpt from an editorial published in Headache: the Journal of  Head and Face Pain:

    "Abundant evidence shows that the seminal studies that lead to innovative pharmaceuticals are most often performed in publicly-funded research laboratories, not those of the pharmaceutical industry. Federal funding of research on epilepsy has always hugely out-paced that for migraine. Over the past several years, mean annual NIH expenditures for epilepsy have been ~$101M compared to ~$13M for migraine, with a comparable disparity in funding every year since 1972 - the earliest year of available records for NIH grants.

    What did the federal funding for epilepsy purchase? Fundamental research beginning in the 1970's led to the development of epilepsy animal models that enabled the screening of drugs for anti-convulsant properties. The NIH then funded and provided oversight of this program of accelerated screening of compounds developed by academia and industry. Thirty years later, patients with epilepsy have a considerably wider set of therapeutic options.

    Headache medicine is also on the threshold of new insights into the pathogenesis of the primary headache disorders. Animal models relevant to drug screening are beginning to appear. What is needed now is a commitment to headache medicine from federal agencies similar to that which has been appropriately extended to epilepsy... Based on the example of the epilepsies, real benefits will likely be felt by headache patients over time in the form of improved access to specialty care and the development of novel effective therapies."(see link to the full editorial below)

Do I hear someone asking, "So, when is someone going to do something about this issue?"  The answer to that question is ... Now.

Allow me to lay it out for you with answers to the questions journalists are trained to ask...

Read more in Migraine and headache sufferers - We're off to DC on your behalf!

September 16, 2007

Expressing pain through art... an invitation.

Painartcontest

American Pain Foundation and The HealthCentral Network:
Call for Artistic Submissions for Creativity and Pain Exhibit

Deadline for Entries is September 20, 2007

The American Pain Foundation (“APF”) and project partner The HealthCentral Network, Inc. (www.HealthCentral.com) is accepting entries for the 2007 APF Pain and Creativity Exhibit. This online exhibit will showcase all contributing artists and their work, including visual arts, inspirational videos, poetry, and quilt squares. Select submissions will be chosen for special promotion by APF. The Pain and Creativity community will be ongoing, but to be considered for special honor in the Exhibit, and at the APF’s 10th Anniversary Celebration in October, submissions must be received by September 20th. Entries can be submitted at www.healthcentral.com/chronic-pain/apf/ 

“HealthCentral.com is pleased to be working with the American Pain Foundation to host the Pain and Creativity Exhibit—a virtual space where anyone can share their painting, drawings, sculpture, and video with other individuals dealing with pain,” said Bill Allman, General Manager of HealthCentral. “Art can play a major role in expressing and working through chronic pain, and we believe that the Pain and Creativity Exhibit offers a flexible, supportive environment in which to do this.”

“Recognizing that we are all creative and have the power to turn adversity into opportunity, we would like to expand our Pain and Creativity network to connect artists and their expressions of pain through an online exhibit of creative work,” said Will Rowe, Executive Director of APF. “Our hope is that the submissions to the Pain and Creativity Exhibit come in a variety of forms, including film, sculpture, words, painting and quilt blocks, from people who have pain or from people who are affected by pain.”

Entrants can contribute poetry, prose, a digital photo of their artwork, or an inspirational video that tells the story of how pain can affect one’s life. Along with their submission, entrants also need to include a paragraph that describes how their piece of art represents their pain experience.

A related project sponsored by APF in conjunction with the Lagniappe Project of Baltimore is calling for the submission of quilt blocks for the inclusion in a quilt which will reflect the experience of pain. Quilts are a literal and figurative symbol of comfort and the joining of patchwork is a symbol of unity and community. Through the block design, construction, and joining to create a finished quilt, we hope that the artist finds comfort and unity. The finished quilts will be exhibited at the APF’s 10th Anniversary Celebration in October and will be used for fundraising purposes through the Celebration Auction and/or through other fundraising efforts. For more information on quilt square requirements, CLICK HERE.

The deadline for all submissions is Thursday, September 20.

About The HealthCentral Network
The HealthCentral Network, Inc. (www.healthcentral.com) is a new and unique online offering, comprised of over 30 general health and highly specific condition and wellness web properties, each committed to offering a voice in everyday and personal language people can understand and connect with at critical points in their lives. Each site provides timely, interactive, in-depth and trusted medical information (from Harvard Health Publications among others), and connections to leading experts and thousands of people who share their related experiences and inspiration.

About the American Pain Foundation
Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. For more information, visit www.painfoundation.org.

 

September 10, 2007

National Invisible Chronic Illness Awareness Week

Invislogo200_2 September 10-16, 2007 is National Invisible Chronic Illness Awareness Week (NICIAW).  This is a special week dedicated to those of us who hate to hear, "But you look so good" when we're suffering in pain.  Translation:  "I can't believe you're really in that much pain because I can't see it." 

This and a number of other topics of particular interest to those of us with invisible illnesses will be addressed this week in 20 live online seminars presented by NICIAW and sponsored by Rest Ministries.  Four seminars will be held each day, Monday through Friday (Sept. 10-14).  The seminars are hour-long chats where the guest “speaker” presents for the first 20-30 minutes, then you are free to ask questions and discuss the topic at hand.  Some of the other topics to be presented include:

  • How to Win SSI or SSDI
  • Parenting When You Have a Chronic illness
  • How to Be a ChronicBabe: Five Steps to Get You Started
  • What Everybody Ought To Know About Magnesium
  • When it's Not Getting Better-Spiritual Resources
  • Blogging About Your Illness
  • Time Management - How it can make a difference with your illness
  • Mental Illness and Faith Communities: Creating Caring Congregations
  • Taking a Stand: How to Avoid Medical Mistakes
  • Invisible Disabilities: But You LOOK So Good!

Visit the NICIAW Web site for a complete list of seminar topics and times or to enter the chat room.

August 02, 2007

Chronic Pain Voices receives "Top Site" Award

We're honored to announce that Chronic Pain Voices is a recipient of the HealthCentral Network's 2007 "Top Site" Award in the area of Chronic Pain. Many thanks to the people at HealthCentral who chose to recognize this blog.

Here's a copy of the press release about these awards:

    HealthCentral.com Honors Top Web Sites and Blogs Dedicated to Specific Conditions and Diseases

    First Annual Top Site Awards recognize sites committed to informing and inspiring online health communities

    ARLINGTON, Va., Aug. 1 /PRNewswire-USNewswire/ -- The HealthCentral Network, Inc. (http://www.healthcentral.com/), a leading online consumer health destination, today announced its First Annual Top Site Awards for the best Web sites and blogs dedicated to educating and supporting individuals living with specific conditions and diseases and fostering the online community.

    HealthCentral.com's awards recognize the Web's top sites, from individual blogs to small Web sites, committed to providing personal, quality information, support and inspiration to patients, caregivers, and their friends and family. Many of the 26 condition-specific Web sites that make up The HealthCentral Network (THCN) will be honoring the top destinations in their communities. The recipients of the award share HealthCentral.com's mission in highlighting the patient voice in health information.

    "Health information consumers rely greatly on the advice and personal experiences of friends and family in all facets of life and managing a health condition is no different," said Chris Schroeder, Chief Executive Officer and President of The HealthCentral Network. "This year's Top Site Awards recognize the importance of sharing and learning from other people who have real life experience dealing with each condition and join HealthCentral.com in providing trusted, personal information and support to their community."

    A team of experts from each of THCN's condition-specific sites chose this year's top destinations after reviewing and analyzing the most popular and influential Web sites focused on living with each condition.

    The 2007 Top Site Award Categories

    Acid Reflux Diet & Exercise
    Allergy & Asthma Heart
    Alzheimer's Migraine
    Anxiety Prostate
    Bipolar & Depression Rheumatoid Arthritis
    Breast Cancer Schizophrenia
    Chronic Pain Sleep
    Diabetes  

    Visit http://www.healthcentral.com/top-sites.html for a list of the Top Sites for each condition.

May 13, 2007

Schemers and Scammers, and Crooks... Oh, My!

What is it about people who are ill or in pain that makes unscrupulous people think we're fair game for their scams and schemes? Medication prices are out of control. Many of us, even with insurance, are spending a disproportionate amount of our income on meds, and many are looking for sources of less expensive meds.

Scammers know that, and they don't give a damn about our health, only making $$ from our misery. Not a day goes by that I don't have at least a dozen emails from such scammers offering me lower prices on everything from pain medications to Viagra. BUT, there's a catch. We have no way of knowing if these medications are real or counterfeit or if they're contaminated with toxins. A friend of mine nearly died as the result of trying to save a few $$ on pain meds and getting contaminated meds.

There's been a recent and dangerous upswing in counterfeit medications being sold over the Internet. Please, before you consider buying meds online, take a look at FDA Warns of Counterfeit Medications from Online Pharmacies.

Be well; be safe!

Terinamecpv

Karen & Teri

HealthCentral Award

  • HealthCentral Top Site Award

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