PA_MaryAnne: Welcome to American Pain Foundation’s (APF) PainAid chat with Micke Brown, Director of Advocacy for APF. We’re very pleased to have Micke as our guest speaker tonight. The topic is "Pain 101: An Introduction to Pain for Patients and Caregivers”. Micke will share what she has learned in the clinical setting and reflect on lessons she has learned from those living with pain.

Micke’s responsibilities at APF include coordinating publications, public outreach programs and cultivating relationships with community groups, networking with associations, thought leaders and decision-makers. She works closely with the Executive Director on policy issues that affect pain management and assists the Pain Information Center by serving as a clinical resource for public inquiries and contributing to publications.

Micke has been a registered nurse for over thirty (32) years with over fifteen (17) years experience as a pain management nurse, program coordinator, educator and advocate. She has served as a clinical nurse specialist, case manager and director of pain services during her tenure within the healthcare industry. Her public speaking experience is extensive to both professional and consumer audiences.
Micke is an active member of the American Society for Pain Management Nursing (ASPMN) and served as their President for 2003-2004. She was the President of the ASPMN Maryland chapter for 2005-2006, on the Board of Directors for the Hospice of Washington County in Maryland (from 1997-2002) and the Maryland Pain Initiative (2002 – current). Ms. Brown is the 2006 recipient of the Richard S. Weiner Pain Education Fund Advocacy for People with Pain Award from the American Academy of Pain Management.

Please remember that this is a protocol chat. If you have a question for Micke, please indicate by typing a “?” and if you have a comment, please so indicate by typing a “!”. The Pain Aid moderators will be keeping track of your place in line to ask questions or make comments and will call on you in turn.
Please have your question already typed and ready to send when you are called upon. When you are finished with your question or comment, please type “ga” (stands for “go ahead”) or “end.” All of this will help us to keep the chat moving right along and will allow us to get the most number of questions answered for you.

Ok! I’ll turn it over to Micke for her presentation. GA Micke.

Micke: For those of us who are committed to improving the care of those affected by pain, I think, it is most notable start off this chat by sharing a quote from our APF Board Chairman, Dr. Scott Fishman. He stated that “Treating pain in not just a compassionate exercise for quality of life….it is essential for life, itself.” What that reminds me and I hope others that are striving to reduce someone’s pain, helps them get back to a life worth living again.

Before we talk about pain and its treatment, I think, is important to understand how pain is defined by the pain specialty along with some history of those definitions. There are two most commonly accepted pain definitions in the field of pain.

The standard scientific definition of pain was first described in 1979 by the International Association of the Study of Pain (IASP). Side note: The American Pain Society is the member professional organization who represents the US with this society.

This definition explains that pain is an unpleasant sensation, but also carries an emotional toll on the individual—the whole person is affected. It also describes that pain can be caused by a range of sources: real, potential or defined by the nature of how the damage is described. This definition recognizes that not all pain can be clearly understood, at least not then and even not at the present time—science/research needs to catch up.

The most popular definition of pain is one that is near and dear to my heart. I confess that I am biased as this definition was first published in 1968 by a another nurse, Margo McCaffery, RN, PhD. Margo simply stated that “Pain is whatever the experiencing person says it is, existing whenever the person say it does”.

This important statement critically influenced the field of pain management and emphasized the importance of asking for the self-report about pain. She set the stage for the importance of performing a pain assessment. After all, how can someone help treat pain, if they do not understand how it affects the person in front of them?

So, what is pain? What do we know about pain? We know that it is complex as it involves the nervous system from the smallest nerve endings to the spinal cord and through many areas of the brain for response and reaction.

We know that pain is subjective--meaning at the present time we cannot measure it like taking a blood pressure or temperature. Getting a measurement of pain requires each individual to self-report (whenever possible).

We know that pain is unique to each person. For example everyone in this chat room could feel the same painful stimulus in very different ways. We know that pain is a common phenomena; who gets through this life without some type of pain experience?? We also know that there are pain conditions or experiences that remain mysterious; they continue to baffle many of the top experts in the field.

So, pain is alive and well in our nation and our world. In fact, pain affects more Americans than Diabetes, Heart Disease and Cancer combined. Over one quarter of our population have pain of some kind. That is expected to grow as life expectancy rises due to the “miracles” of modern medicine. Would you be surprised to hear that the most common pain problems are: low back pain, neck & shoulder pain, headache and arthritis??

Neuropathic pain (nerve pain disorders) are expected to rise as many live longer with diabetes, circulation problems, shingles---this does not account for what we will see in droves as our injured soldiers return from our current wars. These soldiers are surviving wounds that prevented other war veterans from coming home alive.

Pain does not discriminate. It affects people of all races, cultural background and any economic status, gender and at all stages of life! In the U.S., pain care is Worse for minorities, our elderly, children & women, the institutionalized (nursing homes, prisons), the poor and the uninsured, people who speak English as their second language and for the mentally ill it is not even on the radar screen.

The good news is: most pain can be relieved or eased with proper pain management. Pain relief can:
• Decrease stress
• Allow for restful, restorative sleep
• Improve quality of life
• Promote healing (may be very different than curing).

The tragedy is that even with the current knowledge we have “most pain is untreated, under-treated, or improperly treated” a situation that has not changed much since Dr. James Campbell made this observation in 1997. There are prevailing myths and barriers to effective pain management. They begin with these:

• Failure of doctors, nurses and pharmacists to assess pain
– They continue to be under-educated
– They continue to under-value

• Public Stigma is prevalent:
– Fear and embarrassment impedes the voice of those affected by pain
• Many fail to tell even those most close to them
• If this is so, are they willing and able to talk about pain to healthcare providers
• What is being or not being reported to those providers?

• Fear of opioids is fueled by misstatements and zealotry which obstructs balance in practice and access for those who may benefit.

There are other myths to be aware of:

Myth: The best judge of pain is the physician or nurse.
 Fact: Studies have shown that there is little correlation between what a physician or nurse might “guess” about someone’s pain. The person with pain is the authority on the existence and severity of his/her pain. The self-report is most reliable indicator.

Myth: The same type of pain affects different people in the same way.
 Fact: Many studies failed to support that similar pain stimuli will produce same pain level intensity. There is individual difference when sensation is first recognized as painful (pain threshold). There is a difference with pain intensity that each person willing to accept (pain tolerance). Identical injuries can be described differently by sensation and intensity.

Myth: The person who reports pain early to their provider will be provided pain relief quickly.
 Fact: Stoic (quiet, reserved, introverted) personality is highly valued and favored by many societies, including ours.
 Research supports clinician bias against pain patients who are labeled as demanding, emotional, angry. Red flags are raised when someone with pain is “too well-informed” about their pain & its management. (This is a treasured value with those who have other conditions such as cardiac disease, diabetes and cancer).
 There are imposing values of providers where they may label people with pain using terms such as “low pain tolerance” or “drug-seeking”; the withholding analgesia without cause may be a selected intervention with some reports. Note: This is not considered appropriate or ethical professional behavior.

Myth: All nurses know how to relieve pain.
 Fact: Studies have shown that even with adequate physician orders, pain can be undertreated by nurses because:
– They tend to use the lowest dose ordered rather than dose needed to reduce the pain.
– PRN (as needed or as requested) will be encouraged even though this method is less effective than ATC (around the clock) especially the initial 48 hours of acute post-operative or post-injury pain.
– Physician orders are not questioned when pain is not relieved which causes the person in pain to wait in pain until “it is time for the next dose”.

Myth: Most people with pain become addicted to their pain medicine.
 Fact: There is a fear of addiction, substance abuse and diversion from healthcare professionals and the public. Providers are torn between protecting their patient, protecting their practice and protecting the public welfare. The public fears that simply taking an opioid will lead to addiction, which is false. There is confusion about the difference in and implications of tolerance, physical dependence and addiction.

– The risk for addiction in our nation has remains stable at 7-10% and studies show it is no higher in those who live with pain. The risk of addiction increased for an individual when there is a personal/family history of substance abuse or mental illness and a rare problem with the elderly. (This topic is worthy of its own chat).

Overall, the most common reason for the under-treatment of pain is the simply the failure to properly assess for pain. There are many tools that can be used that range from different age groups, abilities to communicate and languages.

What you can do to help improve your pain treatment is to record your pain and its impact in your life. One example to consider is using is our Pain Notebook, newly revised and posted on our website at: http://www.painfoundation.org/publications. To help your provider learn how to ask the right questions when assessing for chronic pain is the companion publication, Target Chronic Pain Card.

There are basic principles of Adequate Pain Management that were first published by the American Pain Society (APS) and have remained constant and reliable over the years. Hopefully your provider follows these principles. Simply, they are:
• The person with pain is the expert in their pain
• A systematic & ongoing pain assessment is key to an effective pain treatment plan
• A pain treatment plan should combine drug therapy with non-drug to maximize effectiveness
• When medications are selected, the provider should adjust drug therapy to the individual’s response
• The performance of an ongoing evaluation of the pain management plan is the only way to measure success
• It is essential to communicate the treatment plan to others (including the person with pain, designated loved ones, caregivers, other healthcare professionals who are part of the pain team)
• Identify & deal with barriers as they arise.

Pain Treatment Requires Action! It begins with screening, recognition & reporting. The most effective treatment plans are those that are “multi-modality”, meaning a variety of options. The plan should include options from the following categories:
• Medication Therapy
• Rehabilitative Methods
• Psychosocial Support
• Non-Drug Options (CAM)
• Interventional Techniques: Injections, Infusions, Implantables and other “invasive” options.

As you and your pain care team maps your treatment plan it may to remember these bullet points:
 Pain is complex and unique to every individual
 There are aspects that the provider should consider when a treatment plan is developed:
– The type of pain you have (acute, chronic, inflammatory, neuropathic)
– The intensity of pain (at rest, with activity, the best, the worse, the average)
– Your physical condition, coping ability and private challenges
– Your lifestyle and preferences for treatment
– How to balance the risks with benefits of the preferred treatment choices
 The overarching goals of pain treatment are:
– Lessen your pain severity
– Improve your ability to function in your everyday life
– Enhance your quality of life

What do you need to know when thinking about your treatment options? Different therapies might not work for everyone. It takes flexibility, time and persistence to find the right combination that works for each person, particularly if you have had pain for a long time. When I teach nurses, I tell them this: “Get the ingredients you need and help build the right recipe with your patient. It is a team effort.”
There are factors that can interfere with pain therapies, like:
• How different drugs interact with each other
• How foods might affect how a drug works
• How different treatments can either complement each other or cause harm
• How your general health and personal habits can play a role in pain treatment.

For more information refer to our publication, Treatment Options: A Guide for People Living in Pain, 2006. This is up for revision for 2008.

The bottom line: Pain Management is an Ongoing Process! It is not just a one-time concern. Finding the right combination of therapies may take time, but often makes the critical difference in your care.” Most of all, “It’s Not Just in Your Head!”

PA_MaryAnne: Great presentation! We'll now open the chat for Q&A.

Slks: I wondered if we could discuss the 0-10 pain scale a bit. I think people have a difficult time understanding how individual that is to their own pain

Micke: Can you give me an example of what you mean?

Slks: That their 5 is not someone else’s 5 and the doc uses it to look at the individuals pain, not comparing it to other patients

Micke: The pain scale is meant to be reflective of an individual experience. You are correct that your 5 (moderate pain) may be different than my 5. What providers are asked is to have you relate your pain experience to what you feel might be a 10 value (worse possible pain experienced or imagined) versus 0 for no pain.

Katie Marie: Why is a person who is well versed in pain/pain management options/alternative therapies/what works or doesn't work for them seen as "threat" and not received well by the medical community?

Micke: Oh, this is an excellent question that I asked myself almost every day. We as providers are suppose to be listening, believing and acting accordingly. Sadly, many are stuck in trying to decide whether to protect their patient, their practice or the public at large /end

Netspets: Why do some people have stronger pain tolerances and thresholds than others? Is it a brain signal or a mental status of each individual patient? Ga

Micke: We all have different makeup of how our nervous system works, different past experiences that may enhance or detract from our perception of pain, is the simplest way to explain your complicated question /end

Nancyo: When will post herpetic neuralgia go away...the pain is so debilitating...thanks...

Micke: Unfortunately, once the herpes zoster virus has done its damage to the nerve, it often means that pain can last for months, years or a lifetime. That is part of the reason why a new Zoster vaccine has to be created--to prevent this terrible pain condition. There is some treatment option information on our website in the Spotlight on Shingles section that you may want to review /end

Nancyo: I have had it for 3yrs

Slks: Also a topic on the boards

KathyLofMA: My doctors seem to be afraid to give me pain meds because of bad experiences with former patients who abused the meds....How can I address this issue with my rheumatologist?

Micke: Are you using a pain diary or pain notebook?

KathyLofMA: I have had SLE-Lupus for 15 yrs...I do keep a pain diary...doesn't seem to make a difference...keep getting same response from 3 diff physicians...

Micke: Have you been to a pain specialist and have they been willing to co-manage you with your rheumatologist?

KathyLofMA: yes...but the pain specialist was not able to prescribe meds...he did confer with my Dr. and I was given a non-narcotic alternative...However, it doesn't help in all instances...

Micke: I would ask for a second, then a third and forth opinion if necessary /end

Judychunk: You stated "Self report is the most reliable" then how do you get doctors to listen and believe you are in pain. I have experienced being sent from one doctor to another and none of them are helping the pain or listening to my comments. /ga

Micke: You deserve to be listened to and believed until the physician/patient relationship (trust) is broken. I am not trying to be flip, but keep looking until you find a provider who treats you as you rightly deserve!!! /end

Trebclf1011: I'm trying to continue to work. (Autistic pre-school) Each time I call my doc for help...she puts me off and makes me set a new appt. $10.00 co-pay each time for the same problem. "We have to make room for patients with acute illness" so I'm back to waiting 2-3 weeks with no change. Is it time to seek new doc or go on disability? My depression and anxiety are getting worse and I feel my doc doesn't care. How can I make her understand? What do you know of "visceral hypersensitivity"? /ga

Micke: I think you answered your own question--trust your instincts and find someone who will listen to you. They are out there /end

Fjc3543: I am a male-age 73 Today... I have muscle pain, especially in my legs for over 10 years and they are very weak and my ankles are too. I require help to get up from a kneeling position. I also have depression really bad. All my life I was very active until this. Docs have done tests but no luck. I take two vicodin a day for pain and klonipin for depression. What do you think I have and what tests can be done? /end

Micke: I cannot render a medical opinion. /end

Ihope: Do you know if there is a specialist anywhere in post-mastectomy pain? I am at an academic medical center in the Midwest, but I still cannot get good pain relief!

Micke: Have you looked at our doctor locator on our website? /end

http://www.painfoundation.org/ResourceLocator.asp

Ihope: Thanks, will do.

Katie Marie: How can one "erase" prior pain pathways so that current pain is not going over the old pathways and making the pain even more intense or "doubling" up on the pain? ga

Micke: That is where the researchers need to help us figure out. We know the nervous system learns from repetitive pain signaling---so how can we teach it to unlearn.... /end

Lmorris: I coach patients to keep searching until they find a doctor skilled in pain care, I encourage them to ask doctors up front if they are comfortable working with chronic pain, Is this the right approach? I'd especially like to know about post stroke neuralgia in the face.

Micke: You are my hero. I love the advice, YES!! /end

Trebclf1011: What is "visceral hypersensitivity"? Is this for real?

Micke: I am not sure what this is referencing. Where did you hear this?

Trebclf1011: From the GI at Loma Linda UC

Micke: Lmorris and Trebclf1011: I would have to research these questions myself in order to render an opinion. What I do is Google, then look at reputable sites like PainEDU, Medscape, etc. /end

Trebclf1011: Goes along with fibromyalgia...research being done along with "phantom pain" sorry misspelling? /ga

Netspets: My experience in the ER with migraines is that we are the last to be treated in regards to pain. How is this determined? ga

Micke: I suppose they feel that chronic pain is a low priority. Dr Knox Todd is working hard to better education ER physicians and ER departments about appropriate pain care. /end

Yojama95: My migraines have gotten worse since my accident. Could it be because of my pain meds?

Micke: Again, I would have no way of knowing without the privilege of performing a pain assessment, history and physical. This question is best asked to your current provider. If you are not seeing a headache specialist, it might be worth it to ask for an opinion. /end

Fjc3543: I have been to pain management and internal medicine and am seeing a neurologist next Tuesday but they all are stumped. Any other suggestions? Who might be able to diagnose me? /end

Micke: Really, I do not have enough information to even attempt to answer you in the way you deserve. /end

PA_MaryAnne: Thank you so much Micke! We hope this is the start of a great series of chats! Thanks to all for joining us this evening. We appreciate your interest and hope to see you the next time.

Micke: I want to tell you how privileged I feel to have had the opportunity to chat with you tonight. /end

PA_Carolina1: We have more chats in the works -- plus we have daily chats and discussion boards.

PA_MaryAnne: The privilege was all ours!

Judychunk: Thank you for you being here and giving such a great presentation.

Updated by pa_Carolina1 on 25/03/2008 23:12