IC Disease

The U.S. House of Representative’s Energy and Commerce Committee approved the National Pain Care Policy Act of 2009 (H.R. 756). The legislation will now move to the full House for consideration and then travel to the U.S. Senate.

If signed, the National Pain Care Policy Act of 2009 would combat pain by authorizing a Pain Consortium at the National Institutes of Health (NIH) to expand research on causes and treatments for pain; providing comprehensive pain care education and training for healthcare professionals; creating a national public awareness campaign on pain management; and by authorizing an Institute of Medicine conference on pain management.

To read the full summary of the bill, click HERE. 

To encourage organizations and others to support this bill, click HERE. 

I have less than one week until my leg surgery and I can’t wait until it’s all over with.  I am in so much pain I just want to feel better.  I have been suffering from very extreme sleepiness, different from that of my Chronic Fatigue Syndrome, and I think a lot of it is due to being in so much pain.  I find that every free chance I get I want to lie down and take a nap and I hate feeling like that but my body is begging for the sleep it seems.  I have little energy to research for my blogs and I am finding that just getting through the day has become even more difficult than usual.  I hate not being productive.  I like to accomplish things and when I feel like this it’s almost impossible. 

I hope surgery is the answer and I feel better once the healing process is over.

Cognitive Behavior Therapy, or CBT, is a common form of non-conventional treatment that is used to treat patients with many different types of chronic illnesses and for chronic pain.  The definition of cognitive behavior therapy, according to Wikipedia is:

Cognitive behavioral therapy (or cognitive behavior therapy, CBT) is a psychotherapeutic approach that aims to influence dysfunctional emotions, behaviors and cognitions through a goal-oriented, systematic procedure. CBT can be seen as an umbrella term for therapies that share a theoretical basis in behavioristic learning theory and cognitive psychology, and that use methods of change derived from these theories.

As part of cognitive behavior therapy treatments, attention management is often included as one of the treatments. A recent study was done to evaluate the effects of attention management strategies in the treatment for chronic pain.  In this study there were six weekly 90-minute treatment sessions that were based on cognitive behavior therapy attention management manual describing techniques such as attention diversion, imagery and mindfulness exercises.

The outcome that was hoped to be achieved through this study was to have a reduction in pain related anxiety and hypervigilance to pain and decrease in pain impact of everyday life. Symptoms were self-reported by the study participants.

The results at the end of treatment, and at 3-month follow-up, show significant reductions in pain-related anxiety, hypervigilance and interference of pain. At the participants’ six-month follow up visit, reeduction in pain-related interference and anxiety was still seen. The results indicate that attention control skills can be a useful method to reduce anxiety short-term.

Opioids are extremely powerful, and highly addictive painkillers that have to be prescribed with caution.  When physicians are treating chronic pain patients it can be difficult to know what to prescribe after milder medications have worn off and no longer take effect.  To help physicians along, the American Academy of Pain Medicine and the  American Pain Society have published guidelines to assist the medical professionals with prescribing opioids for patients who have non-cancer chronic pain.

The guideline, which was featured in the February issue of The Journal of Pain, was created after the review of more than 8,000 published abstracts and nonpublished studies to assess clinical evidence from where the new recommendations were based.

Roger Chou, MD, the principal investigator at the Oregon Evidence-Based Practice Center, Oregon Health & Science University, Portland, Oregon, said:

“This guideline was a true multidisciplinary effort that sought to address in a balanced manner the many challenging issues that clinicians face with regard to when and how to prescribe opioids for chronic noncancer pain. A key part of this process was performing a comprehensive literature review to inform the recommendations — though an important take-home message is that even though the recommendations represent the best judgment of the panel based on the currently available literature, there is still a lot of research that needs to be done.”

The panel determined that opioid painkillers are safe and effective for carefully selected patients who are monitored closely by their physicians. The guidelines state that the physician should determine if another pain medication can be prescribed instead of prescribing opioids. If the doctor determines that opioid pain meds are needed, the physician should conduct a thorough medical exam and look at the patient’s overall medical history and assess whether or not the patient is at risk for addiction.

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I found a really good article on chronic pain titled Finding Effective Treatment for Your Chronic Pain.  Click on the article title to read it yourself - you will definitely want to.  What impressed me most about this article is that it is an unbiased article that does not make chronic pain patients feel as though their problems are not real.  It talks about the different causes of chronic pain, how chronic pain affects the brain and treatments. 

The article is featured on U.S. News & World Report website and board members of the American Pain Foundation were interviewed for the article.  Here is a brief excerpt:

Chronic pain encompasses a multitude of ills, from back pain, headaches, neck pain, and conditions like arthritis and fibromyalgia to pain that develops as a result of cancer treatment and lingers for months or even years. Low-back pain, migraines, and joint pain (particularly in the knees) are among the most common complaints, according to the National Center for Health Statistics. Still, while it may have different origins, chronic pain “can be viewed as an illness in its own right because of its effect on function,” says Russell Portenoy, chairman of the department of pain medicine and palliative care at Beth Israel Medical Center in New York City.

Of all places to find research and study information on chronic illnesses, I never expected to find anything on Craigslist!  The website, PROCLAIM, is seeking IC Disease, Fibromyalgia, chronic pain and Chronic Fatigue Syndrome patients to take part in a year long survey that will take place via the Internet.   This survey will study the effectiveness of alternative medicine and the interactions among stress and coping, pain, and treatment outcomes.

The PROCLAIM survey, which stands for Patient-Reported Outcomes from Complementary, Alternative, and Integrative Medicine, was developed under a grant to UCLA researchers from the National Center for Complementary and Alternative Medicine.

If you would like to enroll in this year-long study, follow these directions:

• Go to the PROCLAIM website at http://www.proclaim.org
• Register as a new user
• Select the clinic name (Craiglist)
• Read and sign the consent form
• After you sign the form with your email address, you can begin to answer the first in a series of questionnaires. The system will send you email reminders at the time of each scheduled follow-up for one year.

For further information about PROCAIM, please contact:

Deborah Ackerman, Ph.D.
Department of Epidemiology
UCLA School of Public Health
Email: Deborah.Ackerman@ucla.edu

A European form of mind-body therapy known as Mensendieck somatocognitive therapy has been found to help women who suffer from chronic pelvic pain.  Norwegian researchers have reported that this form of therapy is so effective, it lasts for several months after the treatment actually ends. 

With Mensendieck somatocognitive therapy, patients learn how to understand the cause or causes of their pain and they work on gradually increasing their body movements while “experiencing new body awareness and motor patterns” by focusing on correct posture and breathing patterns, according to the research. 

The study included 40 female participants who suffered from chronic pelvic pain.  They were all assigned to have 10 weeks of the Mensendieck therapy plus standard care while a control group was assigned to just receive the normal standard care.  All of the women in the Mensendieck therapy group saw a major improvement in their symptoms and in posture, gait, movement, sitting posture, and respiration.  The control group who only received the standard care did not notice improvement. 

Even after one year, the mind-body therapy group saw additional improvement and their pain was still improved. 

There are many chronic illnesses out there that can leave people feeling so much pain and fatigue that sex is the last thing on their minds.  With all the demands of living daily life - working, taking care of a home, raising children - sex is the one enjoyable part of life that usually goes but it shouldn’t. 

The American Academy of Family Physicians has some great suggestions on how you can still enjoy sex despite being sick and in pain.  Here are some of their suggestions:

• Plan sex around the times of the days that you feel the best and have the most energy. 
• I know it sounds easier than what it really is, but try to get as much rest as you can and try to relax as much as possible.
• Don’t have sex within two hours of eating a meal.
• Take your pain medicine at least 30 minutes before having sexual relations.
• Alcohol and tobacco/smoking can both affect sexual performance so limit using these. 
• Most importantly - HAVE FUN!! 

There has been growing concern over the past couple of years from the medical community that chronic pain patients who regularly use prescription opioid medications were becoming addicted to the medications.  In my opinion, the medical community has a hard time believing that those of us suffering daily from so much pain actually take the pain medication because we NEED it, not because we want to get high.  Maybe this latest research will show the medical community what us chronic pain sufferers have been saying all along:  WE ARE MISERABLE!  WE NEED TO HAVE PAIN RELIEF!  TAKING THESE MEDS IS NOT AN OPTION FOR US.  IF WE WANT TO MAKE IT THROUGH THE DAY WITHOUT LOSING OUR MINDS FROM THE PAIN, WE NEED THE PAINKILLERS!

Here is what the research revealed:

 In an extensive review, combining results from 24 clinical studies, the overall rate of prescribed opioid analgesic abuse or addiction in patients with pain was about 3.3%. However, fewer than 2 out of 1,000 (0.19%) patients without a current or past substance-use disorder experienced problems with opioids prescribed for pain.

 Similarly, a clinical investigation of patients receiving daily opioid therapy for chronic noncancer pain prescribed by primary-care physicians found that only 3.7% of patients had a confirmed opioid-use disorder. However, whether or not any of these patients also had prior substance-use problems was not examined.

 A systematic review, encompassing 17 studies of patients with moderate-to-severe chronic noncancer pain who were treated with opioid analgesics for at least 6 months, found opioid abuse in only 0.4% of patients. Signs of opioid addiction were evident in only 1 case out of 2042 subjects evaluated (0.05%). Whether these extremely low rates were in the overall patient population or solely in those patients without prior substance-use problems is unknown.

Physicians need to be looking at each individual case when it comes to treating chronic pain and they need to be listening to their patients to find out that the majority of us are just looking for some relief so we can lead normal lives.

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There’s still time to sign up and join in for the American Pain Foundation’s live chat - Acupuncture, Not Just Needles.  The online chat will be tonight, Tuesday, January 27th, at 8:00 p.m. EST. 

Mayssa Sultan, MPA, L.Ac. and the American Pain Foundation’s PainAid Community will be discussing the subject of acupuncture and its use as part of your pain care plan. Acupuncture and Traditional Chinese Medicine are often used in tandem for pain management.  Come to the chat to learn more about how acupuncture can help you and what to expect if you decide to pursue acupuncture as part of your pain management plan.

Mayssa is a licensed acupuncturist and herbalist who recently completed her Masters of Public Administration through the National Urban Fellows Program.  She was placed at the American Pain Foundation (APF) as part of her fellowship to develop her practical experience in public administration with a focus on health policy.  Following the completion of her degree program, Mayssa was hired to work with APF as a coordinator for the  Power Over Pain Action Network’s Western Region and also to work on improving state policies as they relate to pain.  She is also the co-founder of Integrative Clinics International, a non-profit organization dedicated to long-term solutions for sustainable health care. 

There is limited space for this chat, so please go to the Military/Veteran Section of PainAid for reservation instructions.  If you do not already have a login name and password for PainAid, please click here first to register for access to PainAid.  If you have previously registered with PainAid and have forgotten your password, click here. If you have difficulty accessing PainAid or have any questions, please email Chats@painfoundation.org for assistance.