Spring 2020

In this Issue:
  • Isolation by Penney Cowan
  • The Power of Words: Finding a New Way to Talk About Addiction
  • New Tool for Cluster Headaches
  • Medical Acupuncture for Pain Management
  • Applying for Social Security Disability with Chronic Pain
  • Happy 30th Anniversary Salt Lake City UT Chapter
  • Sleep Problems with People in Chronic Pain
  • Support Groups going Zoom Virtual Meetings
  • Memorials
By Penney Cowan

Right now, we are all living through exceedingly difficult times. We are staying at home, working from home, not visiting with friends or relatives, home schooling our children, and missing many special events and parties. They talk about our new normal where we will have to wear face masks, continue to wash our hands, and, in many places, have our temperatures taken before we are allowed entrance. If we dare to venture out most likely we will be at least six feet apart from others whether we are dinning out, getting a haircut, or even attending church.   

We are basically social and need to be with others. COVID-19 has changed the way we live and how we spend our days. Just about everyone experiences the same frustrations, the same need to return to the workplace (sadly for some there is not a job to return to) or school, to see our friends, plan events, and always have something to look forward to the next day. Does any of this sound familiar?
Many of us have adapted to life with pain and have routines that we are comfortable in, while others still struggle with facing each new day. Many of the struggles that people with pain face are now part of life for millions of people who have been impacted by COVID-19. So, what can one do? 

For 40 years, the American Chronic Pain Association has been teaching skills that can help, like pacing activities, setting realistic goals, knowing your basic rights, recognizing and understanding emotions, using relaxation techniques to reduce stress, eating properly, getting a good night’s sleep, and staying active through exercise and activity. 
To help through this difficult time of isolation, and for many increased pain, here are a few ideas you might want to think about:
Staying active: With many gyms and rehabilitation facilities closed, we need to find different ways to exercise so that we do not lose what we have worked so hard to achieve.

  • Take walks around the neighborhood
  • Do simple stretches each morning. Use the ACPA From Patient to Person: First Steps workbook for 18 stretches that can help your muscles in stay toned and keep you moving.
  • Get up and down from a chair 5 times
  • Use commercial breaks to do leg lifts from your chair
  • Listen to your body and pace your activities
  • Drink plenty of water before you start any exercise
  • Wear lose clothing when exercising 

Here are a few on-line resources to explore:

Sleep: because many of us are not as active during the stay-at-home order, you may find it more difficult to fall sleep and stay asleep. 
  • Try to go to bed and wake up at the same time each day
  • Avoid watching the news before bedtime
  • Read a book if you are having trouble falling asleep
  • If you have trouble falling sleep after 15 minutes, get up  
  • Avoid eating heavy and spicy food before bedtime
  • Listen to white noise on cell phone apps or Alexa
  • Avoid daytime naps

A few more resources:
Mealtime and nutrition :   This is the time to test your skills in the kitchen while you keep an eye on your weight 

  • Now that you may have more time, explore new recipes
  • Calories count so watch your portions
  • Be mindful of over snacking during the day
  • Watch cooking shows for tips on simple meals
  • Shop online for groceries and have them delivered directly to your home
  • Be adventurous and try new recipes

Working from home:

  • Find a place that is away from televisions and busy rooms
  • Kitchen tables can be used for office desks
  • Make a schedule for time to work and time to do household chores.
  • Get dressed as if you are going to work at least one day a week
  • Use Facetime, Zoom, and other platforms to stay in touch with coworkers
  • Try to stay away from mindlessly snacking all day
  • Get up and stretch every hour for at least five minutes
  • Make sure your workspace is comfortable and ergonomically correct
  • Make sure you take the necessary breaks from work

Additional resources:

Home school: Many of you find you are now replacing, in part, your child’s teacher. How can you fill that role?  
  • Set up a place that is just for school
  • Keep a daily schedule
  • Use free educational websites
  • Watch free webinars on home schooling
  • Print free worksheets and use audio books for Storytime
  • Keep fun in learning with educational games, art projects and music
  • Connect with other parents and teachers if you are having a difficult time 

Additional resources:

Recreation & celebration:  Just because you are stuck at home does not mean the fun and celebration has gone out of your life. There are still many ways to have fun and celebrate those special events.

  • Have a family game night with board games that you enjoyed as kids
  • Create an in-house scavenger hunt with a list of household times to find
  • Make cards to send to essential works to thank them for their service
  • Establish a weekly craft night for the family
  • Watch how-to videos on things that you always wanted to learn to do
  • Start an herb garden indoors
  • If you cannot be near loved ones for birthdays and other special events, set up group video calls with others and celebrate together
  • For family celebrations. make decorations out of things you have around the house and bake a special treat.

Additional resources:

The Power of Words: Finding a New Way to Talk About Addiction

Is addiction a character flaw, a moral failing? Or is it a medical condition requiring long-term treatment?  Health care professionals overwhelmingly agree that it is the latter, but the language we use to talk about addiction often undercuts this understanding, to the detriment of both the person with addiction and society.
As people with chronic pain, we understand the power of stigmatization. We know how it erodes self-esteem, feeds hopelessness, and inhibits seeking or finding the medical help we need. It is why we insist on using the term “people with pain” rather than “pain patients.” We want to emphasize that pain is not the most important thing about us---it is not our identity. 

Much the same needs to be said for people living with addiction. When we say someone is “clean” or “dirty,” we are making a moral judgement that has no place in talking about a medical condition. When we use terms like addict, abuser, junkie, lush, or any of the others, we define them to the exclusion of their whole selves---their human complexity.  
This language can have an impact on treatment and its outcomes. Stigmatizing language can bring on feelings of shame, inferiority and fault (‘‘I’m a bad person; I don’t deserve help.’’) and keep people from disclosing and discussing addiction and getting treatment.

On the other hand, the use of non-stigmatizing, non-judgmental, language helps reduce defensiveness and fear. It encourages people with these conditions to see them as the medical disorders that they are and to seek and fully participate in appropriate treatment. 
Here are a few of the most common detrimental terms and some alternatives.
Judgmental Term

Abuser; addict; alcoholic, boozer; crackhead, cokehead; pothead, dope addict; junkie; druggy; tweaker; dope fiend; alkie; lush

Being clean or sober 

Being dirty

Having a drug habit or bad habit; having a drug of choice, drug of abuse
Preferred Term

Person with [substance] use or [substance] use disorder or addiction involving [substance]. Person in remission from a [substance] disorder.
Being substance-free. Being abstinent. Being in remission. Toxicology test testing ‘‘negative’’ for a [substance].
Using [substances]. Toxicology test testing ‘‘positive’’ for a [substance].
Having a [substance use] disorder or addiction involving [substance use].
New Tool for Cluster Headaches

The American Chronic Pain Association has a new communication tool to help those who have headaches.  Having to live with chronic pain is difficult enough without the added burden of cluster headaches. This guide will help you have a meaningful conversation with your health care provider. You can find it on the American Chronic Pain Association web site at:
Thomas T. Nguyen, MD, DABPMR 
Virginia Spine Institute

Acupuncture is among the oldest healing arts in the world as it has been practiced in China and other Asian countries for thousands of years. It is a discipline extracted from a complex heritage of Chinese medicine that includes massage, manipulation, stretching, breathing exercises, and herbal remedies. The earliest source of acupuncture teaching and theory is the  Huang Di Nei Jing  (the Yellow Emperor’s Inner Classic) dating as old as the Han dynasty in the 2 nd  century BC.

The Nei Jing theory regarded the human body as a microscopic reflection of the universe and considered the acupuncturist’s role that of maintaining the body’s harmonious balance. A second text, the  Nan Jing  (the Classic of Difficult Issues) written later, during the Han dynasty in the 1 st  and 2 nd  centuries AD, further expanded and advanced the theories of points and channels to address the etiology of illness, diagnosis, and therapeutic needling.
The term “acupuncture” describes a family of procedures involving the stimulation of anatomical points on the body using a variety of techniques. The acupuncture technique that has been most often studied scientifically involves inserting thin, metallic, specialized needles into the skin which are then manipulated manually or electrically. In traditional Chinese medicine (TCM), the body is seen as a delicate balance of two opposing and inseparable forces: yin and yang. Yin represents the cold, slow, or passive principle, while Yang represents the hot, excited, or active principle. In TCM, good health is achieved by maintaining the body in a balanced state. Disease, illness, and pain are attributed to an internal imbalance of Yin and Yang. This imbalance leads to blockage in the natural flow of  Qi , vital energy, along certain pathways referred as meridians. Acupuncture is used at specific points along the certain meridians where the  Qi  is felt to be blocked.

Medical acupuncture is acupuncture that has been successfully incorporated into the medical or allied health practices in Western countries. In the United States, acupuncture came to be more accepted and embraced by practitioners after a New York Times reporter, James Reston, described his experience for his post-appendectomy pain control using acupuncture needles. 1  Since that time, guidelines for education, practice, and regulation in acupuncture have been established and implemented within state, national, and international societies.

Pain is a feeling triggered in the nervous system. It can be experienced as sharp or dull, intermittent or constant, localized or diffused. Pain can be a signal from the body to indicate illness or injuries. Although most pain resolves once the underlying insult is addressed, it has the potential to last for a prolonged period of time, from months to even years. Occasionally, pain can persist chronically due to abnormal activity in the pain-sensing regions of the brain from phenomena such as central sensitization and neuroplasticity.

Physical pain is a common occurrence for many Americans. To relieve their pain, people try various treatments and regimens to help ease their pain. Many pain sufferers take over-the-counter anti-inflammatory medications and even stronger prescription narcotic analgesics. Other people try non-medicinal approaches to help with their pain such as physical and occupational therapy, cognitive behavioral therapies, and complimentary alternative medicine (CAM). Examples of CAM therapies include spinal manipulation, osteopathy, and acupuncture.
While acupuncture has been widely studied for various painful conditions such as postoperative pain, dental pain, carpal tunnel syndrome, tennis elbow, headache, sinusitis, osteoarthritis, fibromyalgia, and low back pain, the exact mechanism is unknown. It is believed that the acupuncture can activate the endogenous opioid peptide system to influence the body’s regulatory system by changing the processing and perception of painful, noxious stimuli at various levels of the central nervous system. Two models of systems of acupuncture have been hypothesized with one involving an endorphin-dependent system and the other involving a monoamine-dependent system. 2  


In an acupuncture evaluation, the initial consultation with the patient is like that of any conventional allopathic medical interview and examination. In addition, the practitioner may ask you at length about your health condition, lifestyle, and behavior. For acupuncture, several diagnostic somatotropic systems such as the tongue, radial pulses, and external ear may be used to evaluate the balance of relative strengths or weaknesses within the organs.

Treatment strategies are aimed at activating the appropriate layers of the energy circulation network to address each problem and blockage of  Qi . For simple strains and sprains, a treatment may consist of a dispersion of needles surrounding the local region or along the appropriate tendinomuscular meridian. Long-standing musculoskeletal pain may need placement of needles around one of the principal meridian circuits, occasionally with additional electrical stimulation, to encourage energy flow through the flow obstruction.
 Acupuncture needles are metallic, solid, and hair-thin. Patients experience acupuncture differently. Most patients feel no or minimal pain as the needles are inserted superficially. Needles are inserted to the depth necessary to elicit the patient’s sensation of  de qi  or needle grab, a dull ache that radiates from the point. Acupuncture needles remain inserted for 15 to 30 minutes. Patients receiving acupuncture treatment may either feel energized or relaxed after the treatment. Patient visits are usually scheduled once a week for four to six weeks initially. However, the frequency and length of treatments may vary depending on the condition being addressed.

In the United States, acupuncture has found its greatest acceptance and benefit in the treatment and management of musculoskeletal pain. Acute musculoskeletal and myofascial conditions such as sprains, strains, spasms, and contusions are among the problems most frequently and successfully treated to resolution with acupuncture. In such cases, acupuncture can be legitimately considered as a first line of treatment. Chronic musculoskeletal pain problems are also commonly and appropriately treated with acupuncture, but more as an adjunctive therapy. According to the practice guidelines issued by the American Pain Society and the American College of Physicians in 2007, acupuncture is one of the CAM therapies that practitioners should consider for patients with chronic low back pain that has been refractory to conventional treatment.

Acupuncture can help people with chronic low back pain feel less bothered by their symptoms and function better in their daily activities, according to the largest randomized trial of its kind, published in the May 11, 2009 Archives of Internal Medicine and called the SPINE (Stimulating Points to Investigate Needling Efficacy) trial. “This study of 638 adults who had never had acupuncture suggests that acupuncture is about as effective as other treatments for chronic back pain that have been found helpful,” said SPINE trial leader Daniel C. Cherkin, PhD, a senior investigator at Group Health Center for Health Studies in Seattle.

Acupuncture has also been studied for various painful conditions. Some examples of pain conditions treated with acupuncture include, but are not limited to, carpal tunnel syndrome, fibromyalgia, headache/migraine, low back pain, menstrual cramps, neck pain, osteoarthritis/knee pain, postoperative pain, and tennis elbow. Other non-painful conditions treated with acupuncture include depression, sinusitis/allergies, hypertension, and infertility.


In the hands of a medically trained practitioner, acupuncture is a safe therapy. Relatively few complications from acupuncture have been reported. Serious adverse events related to acupuncture are rare. These risks arise from consequences of penetrating the body with a needle, including syncope, punctured organ, infection, and retained needle. Pneumothorax (air in the chest causing lung collapse) is the most frequently reported complication.

Reprinted with permission from the National Spine Health Foundation https://spinehealth.org/
Applying for Social Security Disability with Chronic Pain

Chronic pain can be completely debilitating. If your chronic pain keeps you from working, you may be eligible for Social Security disability benefits. The Social Security Administration (SSA) oversees the disability program to help those who are in need because of medical conditions make ends meet financially.

A Social Security disability claim is a detailed and complicated process that can take months, or even years, to complete. In order to get your case approved, you have to provide thorough documentation that includes detailed medical records and tests that indicate your condition is severe enough that it makes you unable to work to earn a gainful income and the benefits are needed to help you with your regular living expenses.  
Getting Medical Approval

The SSA uses a medical guide, which is known as the Blue Book, to determine if applicants meet the qualifications to be approved for disability benefits. The Blue Book has medical conditions and lists specific criteria that must be met for you to be approved for benefits using the medical approach. There is no listing specifically for chronic pain, buy you can qualify by using the symptoms of your listing.

You may be able to qualify for your chronic pain using Section 1.04 of the Blue Book, which addresses disorders of the spine that result in compromising a nerve root or the spinal cord. This must be accompanied by:
  • Evidence of a nerve root compression that is characterized by motor atrophy and weakness, sensory or reflex loss, limited motion of the spine, or pain that is generated by the nerves that are compromised or compressed by the disorder OR

  • Spinal arachnoiditis, which is a pain disorder resulting from the inflammation of the membrane surrounding the spinal cord nerves OR

  • Lumbar spinal stenosis that causes inflammation of the nerves that come from the spinal cord and that results in painful cramps that impact you with pain and weakness and cause problems with ambulation. 
Getting Approval with a Medical-Vocational Allowance

Chronic pain is an especially challenging disability to qualify with, because pain is typically subjective and there’s no true medical exam you can take to truly evaluate pain. If you don’t meet the requirements of a Blue Book listing, you can still be approved for disability benefits by using a medical-vocational allowance . This approach involves the consideration of your conditions, the symptoms, the treatments, your age, work experience, transferrable skills, and educational level. Using this approach, Disability Determination Services works to determine if you are unable to perform any other job in addition to the work you had performed in the past.

A medical-vocational allowance involves using a residual functioning capacity (RFC) form to help prove your case. Your physician can complete the form and indicate any restrictions or limitations that you may have because of chronic pain and note how they impact you. As an example, your physician may say that you must reposition more than every two hours, you can’t bend and lift items, or you can’t carry items as you walk. He may indicate that you cannot stand for long periods, walk long distances, or regularly lift items weighing more than 10 pounds. The RFC will also indicate any problems that you may have from medication or treatment and how those impact your ability to work, such as drowsiness or dizziness from pain medication can keep you from operating machinery on the job. If the RFC definitively shows Disability Determination Services that you cannot work regularly and earn a substantial income, you will be awarded disability benefits.
Applying for Disability Benefits

If you are interested in applying for disability benefits, you can call the SSA at 1-800-772-1213 or visit the website at www.SSA.gov to start the application process.

Be sure to submit as much medical evidence as possible, especially as you are likely applying without meeting a Blue Book listing. With doctors’ notes and hospitalization history on your side, you could be approved in as little as 3-5 months.
The Salt Lake City chapter marks its 30th anniversary!

We are pleased to share a milestone with one of the ACPA chapters. Mardell Fayer started her Salt Lake city, UT chapter in 1990 that meeting twice monthly in the Salt Lake County office complex. She decided on this site rather than a medical setting because so many people have had negative experiences with medical professionals. One meeting a month was devoted to members' concerns, feelings, and questions. Speakers, who ranged from traditional medical fields to non-traditional practitioners, were invited to the other meeting. Currently they meet monthly often at a local restaurant. She discontinued having speakers due to falling membership a few years ago. Membership in her group has ranged from three at the first meeting to as many thirty. Currently their membership is nine.
The ACPA provided Mardell with a facilitator's guide providing suggestions for topics and procedure. Mardell told us how helpful that was in not only getting her group off the ground, but on how to continue the meetings and plan for meetings. She also received all the informational handouts to share with the members as well as posters and pamphlets to distribute in the community.

Current members expressed their opinions regarding their feelings for the group as follows: a good place to share experiences; receive empathy, support, understanding, acceptance, friendship. To some the group provides inspiration just hearing what others have to say and realizing they are not alone.

They would have liked to have met to have a little celebration, but we were unable to due to the COVID-19 outbreak. They plan to have a celebration to not only acknowledge the importance of the group but to recognize the effort that Mardell has put into keeping her group going for the past thirty years! They plan to have Zoom meeting and are hopeful that the members have the access and technology to enable them to join.  They realize they are fortunate that all members are safe and well currently.

Congratulations to Mardell and the members of the Salt Lake City, UT group for being there for each other and providing the needed support for the past thirty years!
Sleep Problems with People in Chronic Pain
Shelley Lopez,
MJM Digital
Living with chronic pain can be disruptive to all aspects of your life. However, one area that is often especially affected is your sleep. For many people, it is not simply the pain that disrupts their sleep schedule, but the anxiety and stress that come with the condition as well. And in many cases, the relationship between pain and sleep is a vicious cycle, with pain disrupting sleep, and lack of sleep worsening the pain.

Consider these sleep statistics :
       75-90 percent of people with insomnia have a chance of developing other health conditions, including chronic pain
       Between 50-90 percent of people with chronic pain have some degree of insomnia.
       People with chronic back pain are 18 times more likely to be diagnosed with insomnia than those without back pain.
       60 percent of mood disorders are related to insomnia, with sleeplessness starting before or at the same time as anxiety and/or depression.

Chronic pain does not have to keep you awake at night, though. By understanding how pain and insomnia are connected and working with your healthcare providers to make changes to your treatment and lifestyle, you can work toward getting better sleep at night.
The Relationship Between Sleep, Pain, and Depression

According to the CDC, getting less than the recommended amount of sleep each night increases the likelihood of chronic conditions, including diabetes, heart disease, and arthritis. Depression is also common among those who do not get adequate sleep.

Unfortunately, when you have chronic pain, sleep can be elusive. The pain itself can disrupt your sleep -- when you cannot get comfortable, or a slight shift in position worsens pain, it is all but impossible to get rest. Even when you do get to sleep, it’s possible that your pain can cause “microarousals,” short periods of wakefulness that you may not even register, but that prevent you from reaching the most restful stages of sleep. It is during those deep stages, though, that your body is restoring its energy and healing. Without restful sleep, it is difficult -- if not impossible -- for your body to even start healing, meaning your pain is likely to worsen and last longer.

However, it’s more than just the pain itself that disrupts sleep. There is a close relationship between pain and anxiety. Chronic pain can easily send your mind spiraling as you struggle to manage situations over which you have no control. Concerns about your family, career, relationships, money and more can also keep you awake -- and take a toll on your body. Anxiety increases the production of stress hormones like cortisol and adrenaline, which in turn over stimulates the nervous system, disrupting sleep even further.

For many people, this combination of limited sleep and anxiety eventually develops into depression. Sleep disruptions (both insomnia and oversleeping) are often a sign of depression, and although depression is not necessarily directly caused by sleep problems, it’s definitely related. At the very least, the physical and mental effects of a lack of sleep, combined with the stress and anxiety that comes from chronic pain, can affect your mood.

Taken together, the physical and mental effects of chronic pain on sleep can be devastating. However, with some lifestyle modifications and focused treatment, it’s possible to improve sleep and get better control over pain.

How to Improve Sleep

The first step to improving sleep when you are living with chronic pain is to talk with your doctor. Certain medications, such as corticosteroids used for inflammation, can contribute to insomnia. Your healthcare provider may have suggestions or be willing to consider alternative treatments to support healthier sleep. In some cases, your physician may recommend additional treatments or medications, such as antidepressants or prescription sleep aids.
There are some steps you can take on your own to improve your sleep as well. Among them:

Exercise: Research shows that people with chronic pain who exercise had a measurable reduction in insomnia symptoms .

Sleep hygiene: Practicing good sleep hygiene, including maintaining a consistent bedtime, a bedtime routine focused on relaxation, and avoiding napping throughout the day can help reduce sleep issues.

Cognitive behavioral therapy: Working with a therapist to develop skills for identifying and managing your thoughts and behaviors, and work on new habits, can improve your mental well-being and help better control the mood disorders that are keeping you awake.

Pain management: Getting your pain under control is likely your ultimate goal and experimenting with different pain management techniques may help you find relief. Consider alternative treatments, such as acupuncture, in addition to traditional medications, physical therapy, and massage.
Avoid caffeine: Avoid using caffeine or other stimulants, such as nicotine, within a few hours of bedtime. Alcohol can also keep you awake.

Limit screen time: Using electronic devices before bed can keep you awake. The blue light emitted by your screen can disrupt production of melatonin, the natural hormone that regulates sleep cycles. Reading the news or scrolling social media before bed can also increase anxiety and keep you awake. If you can’t resist the temptation, keep your phone or tablet in a different room.
By focusing on these actions, you can improve your likelihood of getting enough sleep, and reducing your pain at the same time. Again, work closely with your physician, and don’t be afraid to ask for help.
ACPA Support Groups are going to Zoom Virtual Meetings. Here is where they are located. You can call the National Office for contact information. These groups will continue to also do face to face meetings when the shelter in place opens up.

Falls Church VA
Hampton VA Veterans only
Union/Essex Cty NJ
Newton NJ
Saco ME
Minneapolis MN
Ft Wayne IN
Chicago IL
Cincinnati OH Veterans only
Cincinnati OH
Pittsburg PA
Ft Myers FL
Austin TX
Denver CO
Boulder CO
Fremont CA
Danville CA
North Hollywood CA
La Mesa CA
Beaverton/Tigard OR

Please call 800.533.3231 for contact information. 
Gifts given to the ACPA
In Loving memory:

Brian Quinn
Given by Ed Czosnykowski
Lawrence and Amy Ross

In Loving memory:

Alfredo Ramires
Given by Harvey Myman

Fall 2020 Combined Federal Campaign (CFC)

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

CFC Code number is:
ACPA Corporate Members
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Amazon gives.

Shopping on line helps the American Chronic Pain Association 
If you use Amazon for your on-line shopping, you can now support the ACPA. It is simple just go to AmazonSmile and select American Chronic Pain Association as your charity from the drop down menu.  
  • Amazon donates 0.5% of the same price of your eligible AmazonSmile purchases to the charitable organization of your choice.
  • AmazonSmile is the same Amazon you know. Same products, same prices, same service.
  • Support American Chronic Pain Association by starting your shopping at smile.amazon.com