American Chronic Pain Association  
Summer 2019 
A Good Night's Sleep

By Penney Cowan, Founder and CEO of the ACPA

Sleep is the golden chain that ties health and our bodies together .” — Thomas Dekker
Sleep restores our body, allows us to function during the day, think clearly, and enjoy the moments. That sounds wonderful, but as many of us know, sleep and pain are strange bed fellows. It is just not easy getting a good night sleep when pain seems to interfere many of your nighttime hours---those hours where you lie alone hoping that sleep will come quickly, that your body will be able to finally let go of some of the pain so that you can escape even if just for a few hours. But as hard as you may try, you just cannot seem to get a good night's sleep. For many sleep is next to impossible. 

Sleep disturbance is a common problem for people with pain. In fact, is a problem for many people even when they don’t have pain. Why is it that after a long day, exhausted as you might be, you can still not get a good night sleep. You even struggle with just falling asleep. When sleep does come, it seems short lived, with far too many moments where you wake up and struggle to get back to sleep. 
When Sleep Isn't Sleep
Some people complain that they almost never sleep. When they are studied in sleep laboratories with all-night brain wave recordings, it is found that they actually sleep most of the night. However, their deep, slow-wave sleep is "contaminated" with brain waves characteristic of wakefulness. Thus, their sleep isn't restful, and they are often aware of being awake during the night.

Closed for Maintenance
Sleep isn’t merely a time when your body shuts off. While you rest, your brain stays busy, overseeing biological maintenance that keeps your body running in top condition, preparing you for the day ahead. Without enough hours of restorative sleep, you won’t be able to work, learn, create, and communicate at a level even close to your true potential.

While many people struggle with sleep because of stress, such as the night before a trip, an exam, family issues, or a major event at work, the problem is usually short lived.  But living with chronic pain can contribute to a chronic sleep problem. So how much sleep do you really need? 

Melinda Smith, M.A., Lawrence Robinson, and Robert Segal, M.A., Sleep Needs,
How Much Is Enough?
According to the National Sleep Foundation, a young adult between 18 and 25 and adults up to the age of 64 need about the same amount of sleep: seven to nine hours on the average.  But they could be well rested with between six to ten hours of sleep. Older adults need about seven to nine hours a sleep each night. However, it is important to be aware that there is no particular amount of sleep that is correct for everyone. Some may feel good after five hours while other need as much ten hours of sleep each night. 

If you aren't getting the amount of sleep you need, the first thing to do is talk to your health care professional to see if there is a physical reason for poor sleep, such as sleep Apnea. 

What Can Help?
If everything checks out, there are some things that you can do to help improve your sleep. Below are some helpful hints to improve your sleep.   

  • Exercise: Vigorous physical exercise in the afternoon or early evening (NOT close to bedtime) has been shown to increase the portion of time spent in the deepest stages of sleep. So, you may not sleep more, but you will probably sleep better if you exercise.

  • Schedule: It is important to set the same time for bed every night and stick to it rigidly. It may help to prepare yourself for bed with a bedtime ritual, such as a bath, a glass of milk, etc. at the same time each night. Then you should set a wake-up time and stick to this, no matter how little you have slept the night before. It's very tempting to sleep in when you've been awake half the night before, But this only increases the chance that you won't sleep well the following night.

  • Naps: Usually naps increase the problem of insomnia. They should generally be avoided by those with insomnia until their sleep has become regulated. On the other hand, a 20-minute period of napping, meditation, relaxation exercises, etc. can help to reduce the tensions of the day for many and can enable them to resume tasks with renewed energy.
  • Stimulants: No coffee or tea after dinner. Also, until you're sure you are not affected by them, avoid chocolate (caffeine), decongestants, etc., in the evening.

  • Don't Fight It: Many people drive themselves into a near frenzy rolling and tossing all night in a futile effort to force themselves to sleep. Make a rule for yourself that if you aren't asleep after 15 minutes, you'll leave the room and do something restful. Knitting is good, as are such things as jigsaw puzzles, or quiet radio shows, but they should not be done in the bedroom. Mystery shows, true crime stories, and action movies are off limits. Not only do they cause adrenalin to flow, but they're hard to leave. Stay off your electronic devices, as well. When you begin to feel drowsy (no human is capable of staying awake forever) then return to bed. If you're still awake in 15 minutes, leave the room again.

  • Bedrooms Are for Sleeping: And loving. Nothing else. Using the room for paying bills, doing homework, arguing, etc., can prevent the room from being a comfortable refuge in which you can automatically relax.

  • Avoid Habituation Drugs: Avoid drugs such as tranquilizers and sleeping pills. Most people who have used these drugs for a period of time and in substantial amounts find that it takes as long as six months for their sleep to fully normalize.

Some other things to consider:

  • If you have back trouble, lie on your back and place a small pillow under your knees to take the pressure off your back.

  • If you sleep on your side, allow the leg touching the mattress to extend up and slightly bend the other leg up toward your chest.

  • If you have neck problems, place a small pillow roll under your neck instead of using large bed pillows. This will keep your neck well positioned in relation to the rest of your spine.

  • Try to avoid sleeping on your stomach: it puts strain on your spine.

Of course, pain and pain flairs may always interfere with your sleep no matter what you do to improve it. If that is the case, you need to discuss with your health care professional what they might do to help you obtain a better night’s sleep. 


        American Chronic Pain Association
      Pain Awareness Month History

In early 2001, the American Chronic Pain Association established a Pain Awareness Campaign. This undertaking pulled together 40 organizations from across the country whose missions complement the ACPA’s under the umbrella of Partners for Understanding Pain. A key element of the effort was to establish September as Pain Awareness Month.

This coalition was committed to raising awareness through mass media, public forums, and other sources so that chronic pain may be more readily recognized, better understood without the traditional stigma attached, and more fittingly treated and managed. The partnership strived to create greater understanding among health care professionals, individuals and families who are struggling with pain management, the business community, legislators, and the general public that pain is a serious public health issue.

 Through its members, each of whom brought its own perspective to the dialogue, Partners for Understanding Pain represented a comprehensive network of resources and knowledge about issues in pain management. Partners for Understanding Pain was dedicated to building the understanding and support that can help people with chronic, acute, and cancer pain lead better lives.

International Association for the Study of Pain (IASP Conference)

During week of August 21st, 2002, American Chronic Pain Association hosted a kick-off luncheon for the Partners for Understanding Pain Campaign at the IASP. Media were invited to come into the exhibit where an announcement of partners, reasons for the campaign, and tentative year-long activities were presented. Media resources were announced and the ACPA newsletter on “Pain and Sexuality” was unveiled.
Partners for Understanding Pain Meeting of Partners
September 19~20, 2003 in Chicago, IL

The meeting was a wonderful success. We had 40 people at the event representing more than 30 partner organizations. The keynote speakers were Ed Covington, M.D. from the Cleveland Clinic Foundation and Dan Carr, M.D. Professor of Medicine at Tuffs University.

Partners developed workshops to address some of the key issues in pain today. The common theme throughout the event was a need for increased communication and education. Many of the participants learned about issues they had never considered before. Plans to work together on common goals were developed as the meeting ended. It was the consensus that a similar meeting should take place again next year.
Partners for Understanding Pain Meeting: Challenges in the Decade of Pain
September 16-17, 2004 in Washington, DC

The Partners came together to learn more about key challenges we face in pain management today and to help formulate strategies to push pain to the top of the national healthcare agenda. Keynote speaker was Mike Rogers , United States Representative, Michigan, sponsor of HR 1863, The National Pain Care Policy Act of 2003.

Partners for Understanding Pain Free Nurses Toolkit
September 2004

Tool Kits were developed in cooperation with Partners for Understanding Pain members the American Academy of Nurse Practitioners, the American Association of Rehabilitation Nurses, American Nurses Association, American Society of Pain Management Nurses, and the American Society of Perianesthesia Nurses.

This was a grass-roots effort, initiated by nurses to increase awareness and understanding among the health care facilities’ staff, patients, and the public of the complex issues of assessing and treating pain and to create a comprehensive network of knowledge about pain management among nursing staffs.

Pharmacists and Nurses Partners for Understanding Pain
Free Toolkit
September (Pain Awareness Month)

Tool Kits were developed in cooperation with Partners for Understanding Pain members the American Pharmacist Association, the American Academy of Nurse Practitioners, the American Association of Rehabilitation Nurses, American Nurses Association, American Society of Pain Management Nurses, and the American Society of Perianesthesia Nurses.

This was a grass-roots effort to increase awareness and understanding among the pharmacies, health care facilities’ staff, patients, and the public of the complex issues of assessing and treating pain.

Partners for Understanding Pain Visit to the Hill
Supporting HR 1020
September 14, 2005 in Washington, DC

Partners for Understanding Pain visited their congressional representatives on September 14, 2005 to gain support for HR 1020: The National Pain Care Policy Act of 2005.

The press conference was attended by more than 50 people representing more than 20 of the partner organizations. After the press event, and as part of September Pain Awareness Month, representatives of Partners for Understanding Pain met one-on-one with lawmakers to urge support of HR 1020 and highlight chronic pain as a growing national public health crisis. In addition to the visit to the Hill, many of the partners in communities around the country made local visits to their Representatives local offices to encourage support of HR 1020.

The end of 2005 brought 33 supporters of the bill.

The Partners for Understanding Pain campaign provides three tool kits:

  •     Pain Awareness Kits for Nurses
  •    Pain Awareness Kits for Pharmacists
  •     Pain in Older Adults

More than 150,000 tool kits have been distributed through the mail or downloaded from the Partners For Understanding Pain web site.

In 2006, the ACPA focused on grass root efforts, getting ACPA facilitators to do local events in their communities around the new pain care act of 2007, HR 2924. The new Bill includes the following:

  • Institute of Medicine Conference on Pain Care;
  • Permanent authorization for the Pain Consortium at the National Institute of Health;
  • Pain care education and training and;
  • Pain management public awareness campaign.

2007 and Beyond

The ACPA felt confident that our efforts had established Pain Awareness Month and that it would endure. The ACPA continues to work with our facilitators to obtain state proclamations and to do local events in their communities to generate knowledge and understanding of the many issues of living with pain.

The ACPA also continues to work with the ACPA facilitators and members to raising awareness through mass media, public forums, and other sources so that chronic pain may be more readily recognized, better understood without the traditional stigma attached, and more fittingly treated and managed. We have continued these efforts today, engaging our members and facilitators who have brought their message in many unique and inventive ways to the attention of their individual communities.
Five Tips to Be More Productive at
Work While Managing Chronic Pain

By Dr. Anita Gupta
Reprinted with permission

Living with  chronic pain   can be tough, but it's even more challenging for people while they try to be productive at work. As a physician anesthesiologist who works with a broad range of chronic pain patients, I understand how difficult it is to transition back to a high-paced, high-functioning job environment while still living with constant pain. Although with a lot of work, it can be done with some time, patience and a committed partnership between physician and patient.

There are some basic tips people with pain need to know to successfully transition back to full productivity at their jobs while living with chronic pain. General health recommendations should always come from your own physician first, so please consult with him or her before implementing these tips.
  1.        Take regular breaks and stay hydrated.  Living with chronic pain at work can be taxing, and taking regular breaks ensures that the body stays in motion while giving muscles time to move. This also prevents muscles from tightening and causing pain. Additionally, hydration plays a key role in keeping normal equilibrium and prevents dehydration, especially during warmer seasons.
2.        Have standing meetings and consider implementing standing desks.  If you absolutely must have a meeting, increasing evidence shows that standing desks/meetings may result in increased group attention and improved group performance. Using a standing desk in your office may also prevent pain resulting from sitting too long in a seated position. If you have chronic lower back or neck pain, this option is worth considering.
3.        Have self-imposed deadlines and stick to them.  Stress often increases levels of pain, so staying on track with top-level projects will help manage both your stress and pain levels. Not only will this help you become more focused and productive, but it will also prevent long-term pain.
4.        Take exercise breaks.  This is a very important part of dealing with pain at work. I usually guide my patients on what exercises to do at work and how exactly to do them. This helps them destress, re-focus, and get back on track. The exercises should be simple but relaxing enough to get back on schedule, such as a 15-minute walk outside or simple stretches at your desk.
5        Keep your workspace clear and clean.  A cluttered desk is a symptom of a cluttered mind, and clearing both will keep you organized, decrease your stress levels, and help you finish your work more efficiently. As mentioned above, lower stress levels often correlate with lower pain levels, so this is crucial if you have chronic pain.

These tips will help you focus on work, but more importantly, they will also help you focus on you and your health. If you are interested in exploring other ways to manage your pain, I recommend discussing your options with a physician anesthesiologist to determine what will work best for you.
New ICD-11 Codes for Pain

Lars Arendt-Nielsen, Dr. Med., PhD
International Association for the Study of Pain President

There are now new sections in the International Classification of Diseases (ICD) codes to describe pain.  These codes are used by health care professionals to identify condition, part of the body, severity of the problem, cause of the injury or disease, and other clinical details. These codes are then used by payers for reimbursement.  (see below for description of ICD codes)

The International Classification of Diseases (ICD) chronic pain diagnoses were not represented systematically. On 25 May 2019, the World Health Organization approved the new version of the International Classification of Diseases (ICD-11) which included chronic pain for the first time. IASP is proud to say that this new classification was based on a strategic decisions and work over the last six years by an IASP Task Force , chaired by Rolf-Detlef Treede and co-chaired by Winfried Rief. As a result of the Task Force’s impressive efforts the ICD will not only include diagnostic codes for chronic pain but also codes for the most common and clinically relevant groups of chronic pain conditions and provide direct links to electronic health records.

The ICD-11, which will take effect in January 2022, will improve patient care by facilitating multi-modal pain treatment and by boosting efforts to measure the quality and effectiveness of care and new research on the prevalence and impact of chronic pain.
World Health Organization Approves New Version Of The International Classification Of Diseases 

On May 25, the World Health Assembly, the governing organ of the World Health Organization (WHO), approved the new version of the International Classification of Diseases (ICD-11).
What does this mean?
This means that beginning with January 2022, the new diagnoses will come into effect, and the national health systems have time until then to prepare implementation. What is new in the ICD-11? For the first time, the ICD-11 contains a classification dedicated to chronic pain. This new classification provides specific pain diagnoses.
Who developed this?
It was developed by an international research group, chaired by Professor Rolf-Detlef Treede (Mannheim, Germany) and Professor Winfried Rief (Marburg, Germany).
Why is this important?
The ICD is important for a number of things, for example, diagnoses, treatment choice, research, policy decisions, and healthcare reimbursements. It is hoped that the new classification of chronic pain will improve access to adequate pain treatment, motivate researchers to find out more about chronic pain, and facilitate talking about chronic pain. Furthermore, the ICD-11 classification of chronic pain will make chronic pain more visible.

Time Counts: Embracing Carers™

The Embracing Carers™ initiative has launched "Time Counts,"' a social media-led video series asking friends and families of caregivers to collectively give 1 million minutes of their time to better support caregivers around the world.

Embracing Carers™ recognizes that caregivers dedicate so much of their time to supporting a loved one that their own basic health-related activities are often selflessly sacrificed. For example, 54% of unpaid caregivers don't have time to book or attend their own medical appointments, while 58% find it difficult to sleep on a regular basis, according to a 2017 Embracing Carers™ international online survey. 
"Time Counts" hopes to assuage these time constraints by aiming to raise 1 million minutes of time to provide caregivers with support in their role. By sharing caregiver stories via social media, "Time Counts" will encourage individuals to give time to help with specific tasks, such as grocery shopping, cooking a meal, or checking-in to connect and let them know support is available.
Here are some resources to help you provide much-needed time for caregivers:

1.     Embracing Carers newsletter
2.     Toolkit providing ways to share the content on Facebook, including videos, GIFs and social content.

Please use #EmbracingCarers in posts to help Embracing Carers track engagement!
ACPA Summer Cookout
Hampton, VA Veteran’s Group

Our third annual 2019 ACPA end-of-summer cookout was held on September 7 th at a local state park to have a time of food, fun and fellowship with one another, in celebration of Pain Awareness month. The group thrives on the sharing of experiences, stories of inspiration and hope, and social bonding, in spite of diagnoses of chronic pain, and other serious illnesses. Coming together once or twice a year in a fun social setting provides an opportunity to relax and regroup for the veterans, facilitator, loved ones and caregivers, who are so important to the veterans. We have everything from hamburgers to homemade macaroni and cheese and one of every dessert imaginable. The veterans look forward to our events and spend time planning what they will bring and who will be invited. Very few of the veterans in the group miss one of our cookouts.

  Meet the amazing veterans who served our country with
pride and honor!

Mr. and Mrs. Ron Fulton & Mr. Connie Mercer, Jr
Therapy dog Sarah
Nancy Taliferro, Brady Billingslea ( Secretary of the group) & Connie Mercer, Jr.
Back row: Brady Billingslea, Ron Fulton, Connie Mercer, Jr., Tom Bazaar, Jill Lindsay, Greg Boone, Front row: Crystal Bell, Nancy Taliferro, Rose Ferguson and Sarah, the wonder dog.
Fort Myers, FL
ACPA Chapter
The September Pain Awareness Month group project for the ACPA Fort Myers chapter was to visit Presbyterian Apartments, an over-65 community, and do a program for them. After a presentation regarding the local ACPA group, it's Mission Statement, and focus on pain management, we did a program entitled " Defining Your Energy Envelope ."  Emma Omara & Lorraine Tobin

We included an Information Table with helpful handouts and painted 'Rocks of Hope' with inspirational messages for those who attended.

Fourteen attended and several expressed an interest in attending our monthly group meeting. There was much mingling between the residents and group members to talk about the benefits of attending our monthly meetings and just to talk with others who understand. 

The day was so successful that attendees mentioned they would like a group at their facility. We encouraged them to attend our meetings or we could mentor them to start their own group. Members who participated truly enjoyed the day saying they would like to do more presentations like this within the community!  
Maureen Zito, Visitor & Connie Oringderff
Maureen Zito, Lorraine Tobin &
Emma Omara
Patti Mehaffie, Maureen Zito, Emma Omara,
Connie Orinderff & Lorraine Tobin
Muskegon County, MI ACPA Chapter
On August 16, 2019, the community of Muskegon County, MI came together for the 9th annual Health, Wellness, and Recovery Picnic! One hundred vendors and over 1500 residents were there as well as our chronic pain support group to help others who suffer from all forms of chronic pain; of course, to spread awareness. 

     As the gates opened, we immediately had a flood of people asking a lot of questions about multiple types of chronic pain. Many were surprised to know that there was a support group that meets monthly and is free to attend. It was shocking since we advertise across Muskegon County and the two neighboring Counties (Neywago, Ottawa) to spread the word that we are here to help people with chronic pain and still they were not aware of our group. It really is hard to get good news out!     
Other vendors like Holistic groups and aqua therapy visited our booth. Our members were able to provide the information about what our ACPA groups offer to share with their clients. Because of our interaction with so many different groups, we will be able to invite these folks as speakers to some of our meetings to share their expertise. 
This experience was a great one that has made it possible to spread awareness, education, and much more!

There was one moment when I overheard a conversation between two attendees saying, " I hope I never get chronic pain because you become a drug addict." Since they were standing right in front of the booth, I did step in to educate them a little about chronic pain and prescription opioid use. I let them know that is a myth not every person with chronic pain becomes a drug addict or is the reason for the opioid epidemic in the United States! I felt I did a great job as an advocate for chronic pain in that moment. 

As a person living with pain, I have found my purpose in helping, educating, and spreading awareness to others with chronic pain as well as those who do not have chronic pain! It makes me feel really good about my work. 

We all wore a different colored t-shirts with the ACPA logo. We offered different colors of awareness ribbons representing may different disease types all with the same purpose: creating awareness and hope! Thank you again for all the information you provide.

Steph Umlor
Muskegon, MI Chronic Pain
The First Step to Moving Lupus Research Forward

For the first time ever, the global lupus community has come together to establish international agreement on the key barriers that have prevented significant progress in lupus research and care. The key issues are outlined in a new report, Global Consensus Building and Prioritization of Fundamental Lupus Challenges: The ALPHA Project , published in the peer-reviewed journal Lupus Science & Medicine ™.
The first phase of the Addressing Lupus Pillars for Health Advancement (ALPHA) Project has confirmed known challenges in lupus and identified lupus heterogeneity (the diversity of the disease and the many ways lupus can affect the body) as the primary barrier impeding drug development, clinical care, and access.
Phase II of this project will see the global lupus community come together to develop and implement a roadmap of specific solutions to address each barrier identified through this very important research.
The ALPHA Project is a united effort led by the Lupus Foundation of America and conducted in collaboration with researchers at the Center for the Study of Drug Development at Tufts University School of Medicine (Tufts CSDD) and a Global Advisory Committee (GAC) of lupus experts and patient advocates.

The ALPHA Project is a substantial step forward toward creating a research plan that will advance lupus understanding and stimulate development of new and safe treatments for the disease. Lupus is an unpredictable and misunderstood disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, a challenge to treat, and can be fatal. 

Until now, the forum and opportunity to develop consensus around these issues had not existed. This lack of consensus has led to a poor understanding about lupus, the inability to diagnose lupus in a timely fashion, especially by physicians with less experience in lupus, and a string of clinical trials of potential new treatments that failed to reach their primary endpoints, preventing them from being approved for use in treating lupus.
“This is an exciting time for the international lupus community,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America. “The Lupus Foundation of America is proud to lead this first-of-its-kind global project to begin tackling the crisis in the lupus field created by long-standing barriers. These study findings further support our commitment towards building consensus on the priorities in lupus across communities and continents, ultimately to develop solutions for those living with lupus around the world.”

The next step of the ALPHA Project is organizing an international stakeholder meeting at our headquarters in Washington D.C. with the Global Advisory Committee and other lupus stakeholders to develop a road map of specific solutions to address each barrier identified through this research. You can continue to follow the ALPHA Project updates and next steps at .
To learn more about the research efforts and support services available through the Lupus Foundation of America, or to find out how you can get further engaged in work to bring an end to lupus, visit .
NEW - ACPA Support Groups:

Kathryn Terry - Austin TX

Heather Love - Newark DE

Gifts given to the ACPA in loving memory:

Lisa Kay Innis

Given by Elwanda Gille
Fall 2019 Combined Federal Campaign (CFC)

Consider directing your donation to the American Chronic Pain Association this year.

CFC Code number is:
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