Breakthrough Cancer Pain is Top Challenge for Cancer Patients, Even When Using Pain Treatments, A New Survey Reveals

American Pain Foundation Launches New Resources to Help

BALTIMORE, MD — (January 28, 2010) — Pain is one of the most common, yet misunderstood and feared symptoms of cancer. A new survey released today by the American Pain Foundation (APF) reveals that breakthrough cancer pain — sudden, temporary flares of severe pain that occur even when pain medication is used — is one of the most challenging aspects of having cancer, according to three out of four (75 percent) U.S. adults who have ever been diagnosed with cancer and experience this type of pain. The survey also found that breakthrough cancer pain negatively impacts quality of life, contributes to additional financial hardships, and can interfere with one’s ability to cope with other aspects of cancer treatment. “We’re not talking about minor aches and pains,” said Will Rowe, APF’s Chief Executive Officer. “These severe flares of pain often strike without warning, leaving many people fearful of the next crippling episode and unduly burdening patients and their families. Effective pain management is critical to restoring the quality of life these individuals so rightfully deserve.” More than half of those surveyed (53 percent) rated their pain an eight, nine, or 10 out of 10, with 10 being the worst pain imaginable. While 44 percent said their pain is not adequately controlled, a vast majority (91 percent) believe their quality of life would “greatly improve” if they could get their breakthrough cancer pain under control.

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Found this article on the Fibromyalgia Network. Thought it would add to the accumulation of info regarding Omega-3. I have been taking liquid cod liver oil for 2 months and haven’t seen any results yet; but I’m hopeful.

Posted: January 29, 2010

Omega-3 fatty acid (FA) supplements can benefit your joints and cardiovascular system, but what about the pain of fibromyalgia? A small, one-month study involving 12 fibromyalgia patients showed improvements in tender point pain counts, chest expansion (e.g., less muscle tightness), and perceived fatigue levels.¹ Even total cholesterol dropped with the supplementation of 1,500 mg per day of the combined two key omega-3 FAs: eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA).

Vegetable oils are not a source of EPA or DHA. Fish oils that have been processed and encapsulated increase the concentration of these two essential omega-3 FAs. The manner in which omega-3 FAs work to relieve fibromyalgia or neuropathic-type pain is not clear. However, a recent case series report on the use of omega-3 FAs to substantially reduce the neuropathic pain and restore function in five patients (one with fibromyalgia), is quite impressive.

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What a great thought Julie Beyer, MA, RD has proposed in this question of eating healthy for a disease like Interstitial Cystitis (I have it, though am not sure how to spell it :O)

I forget that instead of dreading food choices that are not my favorite, I can look forward to food choices that can become my favorite, even if I like them just a little  bit. Be encouraged to make one change at a time–mine is to give ice cream orgies and stick with an occassional scoop… a small step but one I think I can make… and here are some more ideas in Ms. Beyer’s answer to the age-old of what to do to fix ourselves through good food choices.  

Meal Planning Using the IC Food List

Question:
I promised myself that this year I’d eat better in hopes of helping to control my IC pain. However, I don’t know how to get started. Can you help?

Answer:
It’s a new year, a new decade, and a great time to think about making changes to your diet that can help control your bladder symptoms. Need some inspiration? Greg Anderson, athlete and cancer survivor wrote in his book, The 22 Non-Negotiable Laws of Wellness:

Changing our diet is something we choose to do, not something we are forced to do. Instead of dreading it, try saying, “There’s another thing I get to do to help myself!”

When you think about it, Anderson is right. Changing what we eat can be much easier if we work on changing our attitude. Instead of looking at meal planning as a daunting task, consider it a challenge—something you CHOOSE to do to help yourself!

When making your meal plans, include everything you will eat: breakfasts, lunches, dinners, and snacks. The website www.MyPyramid.gov has wonderful tools to help determine which food groups to include in your plan. Once you have a basic plan, add foods from the “Bladder Friendly” column of the new IC Food List. It is not necessary to plan fancy meals. New patients especially, find it easier to keep meals as simple as possible. It is much easier to sort out which foods may cause your symptoms to flare if you are eating simple foods without multiple ingredients.

Other helpful hints for planning meals:

• Figure out meals a week or a month at a time. Although it may take some time up front, it can help keep you on track, minimizing the chances that you will make a choice at the last minute that can upset your bladder.
• Make menu planning a family affair. Consulting with other family members about menu choices can increase their understanding of your condition.
• Include foods that might be triggers for you, but that your family can eat. It was nearly a year before I realized that I had not been buying strawberries for my family just because I couldn’t have them!
• Use your menu to create a grocery list for the week. Often people walk through the supermarket waiting for inspiration to strike. Sticking to a grocery list can help you resist buying items impulsively, which can be tough on the wallet and the bladder.
• Recycle your weekly meal plans. Once you developed a few weeks of menus that you and your family enjoy, go ahead and reuse them. Save the grocery lists, too! Hospitals, schools, and nursing homes use this “cycle menu” approach to simplify planning.

Remember, eating healthy and avoiding foods that can trigger bladder symptoms is something you have within your control. You CAN do it!

Julie Beyer, MA, RD

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Though I’ve had FMS for 30 years, there is always something new to learn. I hope this article from the American Pain Foundation is of interest.

Fibromyalgia: Five Things You Need to Know

by Dr. Clauw serves as Director of the Chronic Pain and Fatigue Research Center at UM

 For people living with fibromyalgia, the pain is very real.  The chronic, widespread pain and tenderness is persistent and debilitating and can impact a person’s life.  Some fibromyalgia patients may also experience other symptoms, which can prevent them from sleeping well, performing everyday tasks and enjoying life to its fullest.

More than five million Americans are affected by fibromyalgia, but the condition can affect people differently, and many health professionals are still learning how to diagnose and treat the condition.  Patients can face misdiagnoses and often learn to cope with the pain for a long time.  For some patients, it can take up to five years to receive a diagnosis. But there is hope.

Clinical understanding of fibromyalgia, its origins and treatment options, has improved in recent years. It is now thought that fibromyalgia is related to changes in the central nervous system that cause the brain to process pain signals abnormally, increasing sensitivity to pain—or put another way—the “volume control” for pain is turned up, so even a hug or handshake can be painful for someone with fibromyalgia.

If you suffer from the chronic widespread pain of fibromyalgia, you can get answers, manage symptoms and find support with some basic knowledge and the right tools.

Five things you need to know about fibromyalgia

1. Pain isn’t the only sign. Chronic, widespread pain that lasts for at least three months is a classic sign of fibromyalgia. You may wake up with stiff muscles or find that you are fatigued or having trouble remembering things. Fibromyalgia can also coexist with other health conditions, such as arthritis, chronic fatigue syndrome and mood or sleep disorders.

2. Diagnosis may be challenging. Clinicians must rely on your symptoms and medical history to make a diagnosis, since there is no lab test or x-ray to confirm the disorder.  A healthcare provider may ask you to react to specific “tender points” on your body, as defined by the American College of Rheumatology (ACR) diagnostic criteria. The ACR guidelines state that pain at 11 out of 18 tender points may indicate fibromyalgia. “Undiagnosed fibromyalgia can be debilitating for patients,” said Daniel Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan. “In addition to the ACR guidelines, additional tools are in development to help facilitate the diagnosis of fibromyalgia and capture the full range of symptoms that often accompany the pain, including physical functioning, sleep and overall well-being.”

3. Fibromyalgia isn’t just a woman’s disease—men get it too. The large majority of those diagnosed with fibromyalgia are women, but some believe this may be due in part to men underreporting their symptoms. “Men have been taught since childhood to shake it off,” said Bob Hall, founder of the website www.menwithfibro.com. In his eight years running the site, Hall said he has seen men succumb to gender roles and try to ignore their discomfort. “Men aren’t taught to show pain,” said Hall. “But eventually they reach a point where it doesn’t shake off, and they have to do something. That’s what usually triggers them to go to the doctor.”

4. Be persistent about getting help. Many people with fibromyalgia have encountered skeptics—co-workers who may not understand why you have trouble getting out of bed, family members who may not appreciate why you’re so tired and healthcare providers who may not have much experience diagnosing the disorder.  But, trust your instincts and seek medical advice. Find a healthcare provider who listens to you. 

There are also many online resources that can help you on your path to relief. The American Pain Foundation (APF) has a variety of materials, including a self-assessment and online toolkit and educational webinars, to help you recognize the symptoms of fibromyalgia, find the right care provider and get treatment. With the help of these resources and with the support of family and friends, you can start to feel more in control of your body. As always, you should consult with your healthcare provider about your symptoms, other health problems you may have, as well as how the pain interferes with your daily life. This will help you work together to find the best treatment plan.

5. You can live well with fibromyalgia. “There’s a misconception on the part of patients that there’s nothing you can do to alleviate your pain. But that’s not true,” said Dr. Clauw. The best first step is to get an accurate diagnosis. Then, take charge of your treatment plan by:

• Taking note of what parts of your body are tender and when the pain comes and goes.
• Learning how to describe your pain, and creating your own pain scale to chart its severity. See APF’s Targeting Chronic Pain Notebook as a resource.
• Talking to a healthcare provider about your symptoms and how to adapt your daily activities.
• Managing the stress and fatigue that may be associated with your pain.
• Keeping a record of which medications and non-drug therapies work for you.
• Finally, joining a support group in your community or online (check out APF’s online support community, PainAid) can be helpful.  Talking with others about fibromyalgia can help relieve the burden of living with the disorder and may provide you with new information on therapies and management strategies.

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Safety Alert: Voluntary Recall

January 2010 

McNeil Consumer Healthcare Voluntarily Recalls Certain Over-The-Counter (OTC) Products Manufactured in the U.S. and Other Countries.

In consultation with the U.S. Food and Drug Administration (FDA), McNeil Consumer Healthcare has voluntarily recalled certain lot numbers following an investigation of consumer reports of an unusual moldy, musty, or mildew-like odor. The odor was associated with temporary, non-serious gastrointestinal symptoms, including nausea, stomach pain, vomiting, and/or diarrhea.

This recall expands an earlier recall of acetaminophen 100-count bottles with EZ open caps labeled Tylenol Arthritis that began in late 2009. Some of the medications included in this expanded recall are used in the treatment of pain, like:   

• Children’s Motrin
• Children’s Meltaway Tylenol
• Benadryl
• Extra Strength Tylenol
• Regular Strength Tylenol
• Motrin IB
• Rolaids
• St. Joseph Aspirin
• Tylenol 8 hour

Specific lot numbers affected by this recall can be found at http://www.mcneilproductrecall.com/. To find if you are in possession of any of the affected products, look on the side of the bottle label for the lot number.

Individuals who may have ANY of these lots in their possession should:

• Stop taking the medication.
• Contact your healthcare provider if you have recently taken any of these medications and are experiencing symptoms as listed above or have medically-related questions.
• Report any adverse reactions to the FDA’s MedWatch Program by:
  o Fax: 1-800-FDA-0178,
  o Mail: MedWatch, FDA, 5600 Fishers Lane, Rockville, MD 20852-9787
  o Internet: www.fda.gov/medwatch (Medwatch website)
• Contact McNeil Consumer Healthcare for instructions if you wish to obtain replacement medications or a refund and also to receive information about safe disposal of these products.

The public may direct questions to McNeil Consumer Healthcare at www.mcneilproductrecall.com or 1-888-222-6036 (Monday-Friday, 8:00 a.m. to 10:00 p.m. Eastern time and Saturday-Sunday 9:00 a.m. to 5:00 p.m. Eastern time).

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I found parts of this article unsettling and feel a bit unsure. Having so many of the syndromes found within the Fibro Complex has had me on drugs for over 30 years. And I have a love-hate relationship with prescriptions and the drugs I take.

Nowhere in my lengthy experience have I ever found myself over-dosing or overly dependent upon my pain killing/symptom treating drugs, including: Vicodin, Norco, Valium, Halcion, and Ambien. My friends, who have a chronic pain conditions, are similarly non-dependent. Yet we would all much prefer being drug free. Pain demands the price of medication not the curse of addiction. 

Consider your own experiences as you peruse this 4 page article, some of which is quoted below: 

Managing Your Pain: How to Use Prescription Drugs Without Becoming Addicted

…But while the stories of current and former prescription opioid addicts are frightening, chronic pain experts note that addiction is relatively rare and that these drugs do offer benefits when they are properly prescribed and used. And there is certainly a need for them. More than a quarter of Americans age 20 or older—more than 76 million people—say they’ve experienced pain that lasted longer than 24 hours, according to the American Pain Foundation, and 42 percent of those sufferers have endured pain lasting longer than a year. For many of these people, prescription opioids like the oxycodone (commonly sold as OxyContin) and hydrocodone (sold most popularly as Vicodin) used by Braa-Heidner, as well as meperidine (sold as Demerol) and others, are very helpful. “I think the fear can be a huge barrier to proper pain control,” says Paul Christo, director of the multidisciplinary pain fellowship program at the Johns Hopkins University School of Medicine. So how should you approach using a pain medication to get the relief you need without getting hooked?

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How Being “Tolerant” Can Ruin Your Health:
Start Your New Year Right by Eliminating These Common Energy-Drainers

by Mary Yerkes

My desk is messy. My clothes don’t fit. The dog needs grooming. Life coaches agree that people zap their energy and increase their stress by putting up with a multitude of things that bug them, what life coaches call “tolerations.” And for the chronically ill, lingering stress can translate into increased pain. So, why not start your New Year right by identifying—and then eliminating—those things that deplete your energy and dampen your spirit.

Here are four common tolerations, along with practical suggestions for addressing them or eliminating them from your life:

Health Tolerations

If you live with chronic illness, you probably realize there are some things you just can’t control. But what about the things you can? Why add to your distress by eating too much junk food, not taking your prescribed medication, or failing to do your exercises, designed to increase your range of motion or reduce your pain? Take a few minutes and write down your health goals. Just make sure they’re realistic.

Don’t set a goal of jogging three miles a day when you struggle to walk to the curb each day to pick up the day’s mail. When making your list, make sure your goals are SMART: specific, measurable, achievable, realistic, and timely. A goal of eating healthier this year is too vague, but eating five serving of vegetables a day is SMART.

Environmental Tolerations

It’s hard to keep on top of housework and home repairs when you’re in constant pain and struggling to make it on one income. But, let’s be honest. If you feel well enough to sit at your desk and work, couldn’t you take a few extra minutes to clear that pile of papers from your desk so you could actually see your computer screen?

But what about bigger projects around the house that you can’t do yourself? If finances are tight and you can’t afford to hire someone to tackle larger projects, barter your services instead. For example, if you’re a graphic designer, offer to create a brochure for your neighbor’s new business in exchange for shoveling the snow off your walk. You get the idea.

People Tolerations

Face it. Some people are just toxic. They consistently say hurtful things like, “But you look so good!” or “You really should try harder to get to church on Sunday.” They chide you for canceling at the last minute and raise their eyebrows when you serve a store bought cake for your child’s birthday party instead of making one yourself.

If you’re chronically ill, limit your contact with people like this. It’s a little more difficult if you’re dealing with toxic family members. To maintain your sanity and preserve your health, learn to maintain appropriate boundaries. To better understand how to set healthy boundaries, I recommend reading, Boundaries: When To Say Yes, How to Say No to Take Control of Your Life by Henry Cloud and John Townsend.

Spiritual Tolerations

Are there areas in your spiritual life you need to address? Do you struggle with unforgiveness or harbor resentment or bitterness toward your spouse or children for failing to understand your pain, help with the housework, or give you the emotional support you need? Nothing will rob your joy or sap your strength more quickly than unforgiveness.

Don’t tolerate sin in your life for one more day. God’s Word tells us, “If we confess our sins, he is faithful and just and will forgive our sins and purify us from all unrighteousness (1 John 1:9).” Help is just a prayer away. The benefits you’ll gain from identifying and removing tolerations from your life are significant. You’ll be amazed at what a difference it will make. So, start the New Year right by making room in your life for what matters most.

Life Coach Mary Yerkes specializes in helping the chronically ill live abundant lives in Christ. Diagnosed with rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis in 1997, Mary understands the challenges of living with chronic pain and illness. Her greatest joy is seeing people set free to love and serve God with all their heart, mind, and soul. Mary is also an author, speaker, and contributor to popular Christian print and online magazines, including Focus on the Family, The Journal of Biblical Counseling, and On Mission Magazine.

Visit www.newlifechristiancoaching.com and www.maryyerkes.com to learn more.

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 Here’s an opportunity for us to focus on our new selves in 2010. We may continue to suffer and even experience a downward trend. Fortunately, Jesus matters in our lives so a spiritual record will be helpful also. Both The Silver Bullet and Choices: Managing Chronic Pain will complement any physical study.

Feelings of isolation or aloneness are common emotions experienced by patients with chronic illnesses because they are no longer the individuals they used to be. Members of the Fibromyalgia Network share their best tips and coping strategies on how to deal with these feelings of isolation in the January, 2010 Journal. In addition, experts in the field offer steps on how to rebuild your new self.

While you are recreating a new identity, a website can help you track your improvements. Connie O’Reilly, Ph.D., a psychologist in Beaverton, OR, suggests that her patients use www.moodtracker.com.

Change sometimes comes slowly, and it’s easy to get discouraged, says O’Reilly. “Some form of self-monitoring helps remind us that all things change. If we’re in a great mood, it will change. If we are hurting, it will change. If we are sad and lonely, it will change. Change is the one constancy in the universe.” O’Reilly says that sometimes it helps to actually keep track of changes in our mood as we are changing other aspects of our life. “It can be comforting to see visual evidence that nothing stays static … neither the good nor the bad.”

This free online self-tracking program will help you monitor levels of sadness, anxiety, and irritability, along with things like the amount of sleep you get and your medications. You can plot your results from the past week, month or year. Because it is online, you can share it with anyone you like, such as your doctor, therapist, or trusted friends. You can even program it to send a text message to your cell phone to remind you to take medications.

“I often have my clients set it up to send them messages to practice their mindfulness, relaxation, or exercise. I encourage clients to journal about their daily activities and especially how they feel about them. They actually enjoyed it more than they expected. It helps them to tie behavior changes to mood changes over time, and in combination with something like moodtracker.com, it can reinforce the value of becoming more engaged with people and activities.”

Log on to www.moodtracker.com to sign up and get started!

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Finding and Working with Doctors - What to Look For, What to Do

by Dr. Bruce Campbell, PhD
November 18, 2009

Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online self help courses for ME/CFS, and fibromyalgia patients in moderated discussion group format, with free follow-up programs & support.

One important set of relationships for people with CFS and fibromyalgia is those they have with their doctors and other healthcare professionals.

Given the complexity of chronic illness and the likelihood of having several medical problems, you may assemble a group of providers to help you live better.

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Thought you might be interested and participate in this live Q&A about research being done. Below are the details:

ProHealth and the HHV-6 Foundation are honored to announce that we will host a free presentation & Q&A session by XMRV researcher Judy Mikovits, PhD - to be held in Santa Barbara, CA, and streamed live on ProHealth.com Friday, January 22.

BRIEF BACKGROUNDDr. Mikovits
As director of research at the Whittemore-Peterson Institute in Reno, Nevada, Judy Mikovits gained worldwide attention in October with publication of a paper in the journal Science, reporting “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” To review the article and subsequent media coverage, see “In The News” at www.WPInstitute.org.

XMRV Research Continues, Worldwide
Dr. Mikovits’ team at Whittemore-Peterson, and collaborating researchers around the globe, are working intensively on next steps in the research – which relates to ME/CFS, fibromyalgia and other neuroimmune disorders, certain cancers, and much more.

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