Wednesday, September 2, 2020

AACIPM: Resources For People With Pain

These have been trying times for everyone, and anxious times for many of us living with conditions that cause chronic pain and illness.  Everything I write about, being with people to avoid feelings of isolation, focusing on what we can do, and finding coping mechanisms that promote mental, physical, emotional, spiritual balance has been helpful to me, and I hope our readers. 

When I wrote my last blog, I talked about how we have a leg up on this staying in isolation thing. A lot has happened since then. We know more about COVID, we have better treatments and some options, all the things people living with intractable pain hope to have. However, the virus is not gone and neither is our chronic pain.


Though I have cut way back on the computer and social media time in an effort to manage my own pain issues, I cannot let September roll by without expressing the importance of accessing our resources. Therefore, when I got my monthly email from my wonderful group at PAINS-KC with a link to the updated resources at AACIPM, I was excited to highlight this valuable resource for my fellow fibro and chronic pain survivors.




"The Alliance to Advance Comprehensive Integrative Pain Management (AACIPM) is the first-of-its-kind multi-stakeholder collaborative, comprised of people living with pain, public and private insurers, government agencies, patient and caregiver advocates, researchers, purchasers of healthcare, policy experts, and the spectrum of healthcare providers involved in the delivery of comprehensive integrative pain management.” Read on…




The AACIPM website offers many helpful resources and useful tools for those of us living with chronic pain, such as:


  • Apps to help manage pain, track pain, deal with flares, etc.
  • Books written by friends and fellow authors, Toni Bernhard, Dr. Lynn Webster, and more that I look forward to reading.
  • Videos offering summaries and visual aids for understanding pain.
  • A short summary of various websites and the support or information they offer.




The patient and pain care providers are the two most important stakeholders for guiding and participating in important research to learn more about chronic pain as a society.  The Alliance to Advance Comprehensive Integrative Pain Management brings the stakeholders together with a united force. You can read about the history, here.

The AACIPM offers a plethora of additional information on symposiums, advocacy, who is participating, and more from those I have had the pleasure of working with in the past. I suspect you will find something that piques your interest.


“Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond.”

- Albert Schweitzer

Additional Reading:

Pain Justice: A Resource For Chronic Pain Survivors (Posted March 1, 2020)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Monday, March 23, 2020

Fellow Patients, We Can Help Others Cope With The Side Effects Of This Coronavirus Pandemic

I understand this is a trying time for everyone.  COVID-19 is disrupting the lives of people all over the world. People told to shelter in place are experiencing the effects of isolation. As people living with chronic pain and chronic illness, we know what that means.  We know the experiences associated with having our lives disrupted every day. We can help.

It makes us feel good to share helpful measures with our fellow warriors, and today that includes the world. What can you contribute? Following are excerpts from old blogs that everyone might find helpful during these times.


I find great strength, comfort, and diversion through poetry and photography, and I am thankful that I have found ways to fill up my thought spaces by writing for others who share this journey with me. 
…Hobbies give us reason to relax and take a break. They are our weapon against boredom and idle hands. They create the presence of desire in our lives and keep our mind open to opportunities for exploring our creativity. Learn to make jewelry, read palms, fish, line dance, take photos, make birdhouses, collect antique watches, start a joke book, crochet, or hand glide. Take up scrapbooking, wood-burning, or calligraphy; it's totally up to you… [Excerpt, day 69, Spring Devotions in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series.]

***Presently, I am working on a jigsaw puzzle I bought a couple of years ago. I had forgotten how much I loved to do them. But, like so many of us, I have to be careful not to sit with my neck bent for too long. The good news is that I don’t need to worry about it being on the table for as long as it takes. We won’t be having company.


In my blog, The Setting, the Shutter, and the Power of Resolution, I talked about my 2015 New Year’s resolution - "Learning to use the manual settings on my new digital SLR camera". I think of that blog as a metaphor for transforming adversity into opportunity.

***Photographs speak a universal language. Whether you are taking pictures or going through old albums, we can become mindful and create feelings that soothe us, especially during trying times.



For me, writing poetry heightens my senses and provides an alternative path that promotes mindfulness. The words I chose give my thoughts texture, making them palpable, at least to me. Writing poetry provides a beautiful detour because unlike physical pain and illness there are no boundaries, no limitations. We have unabashed freedom to explore and express ourselves using colors, shapes, and concepts we might not otherwise.

I am in awe of the power of randomly chosen words and their ability to bring me peace. Whether I am working through a difficult situation or embracing the wonders of the world, I know when I'm done I have formed a connection to my inner being I only know through poetry.

"Poetry is writing about yourself waiting to see what will show up, the words are the finger points of your soul.”

~Sandford Lyne, author of Writing Poetry from the Inside Out

*** Like photography, poetry is a creative way of chronicling our life’s events and provides a conduit to express our feelings. You may have one you would like to share, maybe one you wrote after you read my blog on how to write “I am” poem. It’s time for all of us to be creative in our own midst ─ to share with others things we never thought we would.


As a once board-certified emergency nurse, I know the risk to our people on the front lines of this virus.  I am pleading with people to follow the CDC guidelines. This pandemic is serious. We must take personal responsibility for protecting others and ourselves.


In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Sunday, March 1, 2020

Pain Justice: A Resource For Chronic Pain Survivors

If you are in CRISIS, reach out IMMEDIATELY:
United States:

National Suicide Prevention Lifeline : 1-800-273-8255
Suicide crisis lines are listed by country 


Sadly, since my blog in 2013 — Walk a Mile in my Shoes — not much has changed. Some might say things are far worse. It’s time for a reawakening of patient centered care that embraces the ethical preservation of our right to choose. It is a moral obligation of all parties that all stakeholders are part of every process when discussing the treatment of pain.

Justice  = the principle of moral rightness; decency.

As a registered nurse, patient, and writer, I feel we are forced to work within a system devoid of a plan for addressing the physiological, psychological, financial, and social consequences of living with persistent pain. I also believe that if we want change, we are obliged to share our unique individual circumstances and our life encounters. It’s time to put into words our desires, needs, and rights as a voice for justice.

I hope the following categories allow you easy access to the resource you need for your particular experience. (Links updated February 20, 2020.)

1. Patient Rights
2. U.S. Government
3. Pain Law
4. Pain Advocacy and Patient Resources
5. Medical Organizations
6. Pain News
7. Additional Resources






*NIH = National Institutes of Health

6.  PAIN NEWS – Current news, professional journals and patient publications
*Many of the advocacy organizations offer subscriptions to their newsletters


“Change does not roll in on the wheels of inevitability,but comes through continuous struggle. And so we must straighten our backs and work for our freedom. A man can't ride you unless your back is bent.”- Martin Luther King, Jr.

You can also access this blog from the blog header or in notes for The Pained Ink Slayer page on Facebook, titled Pain Justice: A Resource For Chronic Pain Survivors And Their Families.

Additional Reading:

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Saturday, February 15, 2020

The Ins And Outs Of Chronic Myofascial Pain

Understanding chronic myofascial pain relies on our understanding of the illusive myofascial trigger point (TrP).


Trigger points (TrPs) are those knotted up pieces of muscle fiber that feel like a frozen pea in a taut band of average sized muscle. Anyone can usually feel a TrP unless it/they: 
  • are behind bone,
  • are in muscles that are under other muscle,
  • the muscle is too tight to locate the TrP.

If the band of muscle affected is too tight, it may be difficult to isolate the TrP causing pain. A specially trained physician or therapist may only be able to identify the TrP/s by the dysfunction and radiation of symptoms they create. A specific pattern is associated with the location of each specific TrP.


Myofascial trigger points are the root cause of chronic myofascial pain, also called myofascial pain syndrome or MPS. The cranky knots can cause symptoms that mimic many things. They are not only responsible for pain, they can also cause muscle and joint dysfunction, and they do not have to be big to be mighty. They can cause numbness and tingling, burning and other nerve symptoms when a TrP is entrapping a nerve. These symptoms can be local or radiate in a specific pattern that remains consistent among all patients. Circulation and temperature changes can occur if TrPs are located next to a blood vessel and swelling can develop if the TrP is located next to a blood or lymph vessel.

Trigger points can develop in anybody who experiences muscle strain or injury. Generally, these isolated events can be successfully treated with lasting results. However, that is not the case in myofascial pain syndrome. In MPS trigger points resist treatment, develop in other parts of the body, and persist for a prolonged period.  

You can read more about trigger points, how they are classified and additional resources in “What Is a Trigger Point?”, which is also provided in the header tab of this blog.


“Chronic myofascial pain is a disease that affects the chemicals that cross between nerve endings and muscles. It is literally, a disease at the neuromuscular junction—nerve to muscle... [it] is a chronic disorder in which myofascial trigger points (TrPs) cause sensory, motor, and autonomic symptoms. This condition may develop in muscles that are overstressed, overused, or injured. Different from isolated incidental occurrences of trigger points that can happen to normal individuals, CMP develops when TrPs are apparent in several quadrants of the body and have become chronic. The trigger points may be active, latent, or secondary.”

Excerpt from Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeffrey Miller PhD

Mayo Clinic (accessed February, 2020)  suggests sleep problems and development of fibromyalgia are complications of untreated myofascial pain syndrome. 

Myofascial pain syndrome coexists with many painful conditions. These include ─ but are not limited to ─ fibromyalgia and chronic fatigue/myalgic encephalomyelitis, migraine, spinal degeneration, teeth grinding, restless leg syndrome, TMJ, interstitial cystitis, irritable bladder, arthritic joints, congenital musculoskeletal malformation, repetitive motion, a static position, and more. Chronic myofascial pain can develop from the effect of diseases, such as polio, and can result from injury or post surgical scaring, too.

Hands on myotherapies, ultrasound guided trigger point injections, self-treatment of TrPs, controlling perpetuating factors are things we can do. It is helpful to know I have some control over the beast that can create so much agony.

Additional Reading:

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Friday, February 7, 2020

Happy With Hemp: Fibromyalgia And Chronic Pain

This post contains affiliate links. See my

A couple of years ago as a freelance writer, I wrote several articles about cannabis and cannabinoids for Health Central. I gleaned a great deal of information in my writing assignments. In this slideshow, I cover things like the cannabis plant: is it hemp, CBD, or marijuana? Does it matter?

It was from those assignments that I decided to try CBD for my pain. However, the lack of reliability disappointed me. I purchased many different tinctures and topical products. However, there was no certainty about my purchase. Was there really a “broad spectrum” of cannabinoids? My pocketbook was not appreciating the cost of my experiments.

So, when the folks at Happy Flower Company asked me to try hemp, I was curious enough to say yes, and I am glad I did. Finally, I would know the presence of certain cannabinoids and their concentration. I could read the lab reports, which you can find on their website. I could give it a fair analysis independent of the guessing game of other products.


There is no cure for my pain generating conditions and I am not making any claims that hemp is a miracle plant; however, I can say my joint pain is better, and my fibromyalgia tenderness has greatly improved.


  • I can use it and still write, because there aren’t any psychoactive effects.
  • The plant has a plethora of cannabinoids and terpenes that work together to provide the best effect.
  • I know the concentration because Happy Flower Company provides the lab reports.
  • It is grown organically.
  • It’s not addictive.
  • It’s affordable.

You can learn more about hemp, here.


When I first heard this term, I was clueless. Here is what I have learned.

Terpenes are chemicals found in the cannabis sativa species, which includes both hemp and marijuana plants, other plants and foods. They give certain plants, vegetables, and fruits their identifiable aroma, taste, and color. Terpenes often influence the name of cannabis species plants.

You might find this interesting, like I did. In 2015, the European Journal of Pharmacology published the study, “Evaluation of the anti-inflammatory, anti-catabolic and pro-anabolic effects of E-caryophyllene, myrcene and limonene in a cell model of osteoarthritis.” Authors, Rufino, A.T., et al. concluded in particular, myrcene has a significant anti-inflammatory effect, fights the destructive effects on the cartilage matrix and believe it has the ability to halt or slow down cartilage destruction and osteoarthritis.

A more recent study, August 2019, by Jansen, C., et al., Myrcene and terpene regulation of TRPV1, suggests formulations containing mycrene have the potential to produce an analgesic effect.


Having fibromyalgia, I am super sensitive to many things. Therefore, I found the abundance of terpenes in hemp to be overly strong when smoked. I solved that issue by investing in a leaf vaporizer, problem solved and I feel vaporizing the leaf is healthier.


My plans are to keep vaping hemp leaf twice a day, because that works best for me. I am eager to try the isolate, because I can reconstitute it into a tincture or topical with a concentration that works best for me.


I have decided to be an advocate for Happy Flower Company, so I can offer you a 15% discount when you use my code:


*If you are on medications please discuss hemp (cannabinoids) with your doctor or pharmacist. Like medications, including those we buy over the counter, it is a biochemical.   

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Wednesday, January 29, 2020

Winter Speech: Dry Mouth And Fibromyalgia

Photo from BBWS-Winter

The brisk arid climate of winter affects many of us. It happens to be an aggravating factor of what I call my dry fibro body. Our speech is affected, our tongue sticks to the roof of our mouth, and we crave water as if we just walked through the Mohave Desert.

With permission from ProHealth I am reposting “Dry Mouth And Fibromyalgia: How To Overcome It”, which was first published at February 6, 2019 and updated on September 17, 2019.

- - - - - - - - - -

Despite it being a common complaint among fibromyalgia patients, it’s not something that’s often discussed in articles or online groups and forums, but it’s frustrating, nonetheless.

In this article, I want to review the consequences of chronic dry mouth, in particular. We will consider possible causes, its relationship to fibromyalgia, the effects on our gastrointestinal tract, and ways to manage it.

What Is Dry Mouth?

Chronic dry mouth, xerostomia (pronounced zero-stO-mEa), is the result of insufficient saliva secretion. This is important because saliva washes away food debris, buffers digestive acids that can cause tooth decay, reduces the formation of plaque, and begins the digestive process.

In 2002, one study reported that salivary gland dysfunction could be exacerbated by several factors, including medications, autoimmune diseases, cancer of the head or neck, neurological conditions, hormonal fluctuations and more. Additionally, a 2018 study  provides insights into the mechanisms by which saliva acts as protector and how it relates to taste, chewing, formation of food blockages in the esophagus, enzymatic digestion and swallowing.
Those of us who live with fibromyalgia symptoms should be on the lookout for conditions that can aggravate chronic dry mouth.

Causes Of Dry Mouth

Let’s take a more in-depth look at the myriad of things can act as causes of dry mouth, such as:

  • Mouth breathing
  • Poor diet
  • Dehydration
  • Chemotherapy
  • Radiation
  • Central and peripheral nerve damage that affects salivary glands
  • Small fiber neuropathy
  • Removal of salivary glands (such as seen in oral cancer)
  • Medication side effects
  • Medical conditions like Sjögren’s, thyroid disease, diabetes, and Lupus)

Furthermore, chronic dry mouth is also one symptom of Sicca syndrome. Sicca is collection of symptoms characterized by unusually dry eyes, mouth, throat, nose, and other mucous membranes. Sicca symptoms are commonly associated with the autoimmune disease called Sjögren’s. Some people interchange the two, and others see Sicca syndrome and Sjögren’s Syndrome quite differently. My own rheumatologist sees Sicca as Sjögren’s without the presence of tissue specific antibodies.

Herein lays the connection between dry mouth and fibromyalgia. In another 2018 study, researchers concluded about 1/3 of fibromyalgia patients tested positive for Sjögren’s-related biomarkers. Plus, the majority of the testing population had the presence of other autoimmune antibodies, lending further credence to the idea that autoimmunity and fibromyalgia are connected.

The Consequences Of Dry Mouth

Chronically thick and stringy saliva, a horse or dry throat, a tongue that is grooved or coated white, or sticky surfaces in the mouth suggests the presence of chronic dry mouth. This can contribute to:

  • Difficulty speaking
  • Difficulty chewing, swallowing, and tasting
  • Insufficient digestive enzyme production
  • Increased risk of bacterial and fungal infections (which can travel out of the mouth into the body’s circulation)
  • Burning mouth syndrome
  • Bad breath
  • Mouth sores
  • Dental cavities
  • Gum disease
  • Malabsorption of nutrients
  • Gastrointestinal dysfunction

If left untreated or unmanaged, complications related to dry mouth can affect our overall health.

Things We Can Do To Help Chronic Dry Mouth

One of the first things I learned in nursing school was the importance of oral care. Keeping a patient’s mouth moist with glycerine swabs and treating their lips with oral moisturizers is a significant nursing intervention to maintain oral health as well as the health of the body. Other things we can do include:

  • Address lifestyle issues, such as stressdiet, tobacco use.
  • Consider contributing factors, such as sleep apnea or other airway obstructions (i.e. deviated septum), teeth grinding, TMJ, etc.
  • Practice good oral hygiene as recommended by the American Dental Association. Brush teeth twice a day with fluoride toothpaste, clean between teeth daily, limit sugary beverages and snacks, see a dentist regularly.
  • Avoid overuse of caffeine, carbonated beverages, and alcohol, which are dehydrating.
  • Avoid sugar.
  • Sip on water frequently.
  • Rinse mouth frequently.
  • Don’t use mouthwash that contains alcohol.
  • Use oral lubricants and saliva substitutes.
  • Suck on sugar-free hard candy or chew sugar-free gum to stimulate saliva production. (Discuss these options with your dentist.)
  • Use a humidifier.
  • Talk to your dentist about a mouthwash that increases saliva.
  • Talk with your doctor or pharmacist about medication side effects. (i.e., antihistamines or other medication used in fibromyalgia treatments).
  • Talk with your doctor about prescription medications that can increase saliva production.

Chronic dry mouth is complicated; it’s far more than having periodic cotton mouth.  And, while we may not always know what causes it, there are things we can do to minimize the effects, and in the process, have an effect on our overall health.

Applbaum, E., and Lichtbroun, A. (2019). Novel Sjögren's autoantibodies found in fibromyalgia patients with sicca and/or xerostomia. Autoimmunity Reviews, 18(2):199-202.

Granot, M. & Nagler, R.M. (2005). Association between regional idiopathic neuropathy and salivary involvement as the possible mechanism for oral sensory complaints. Journal of Pain, 6(9):581-7.

Mavragani, C.P., Skopouli F.N.,and  Moutsopoulos, H.M. (2009). Increased prevalence of antibodies to thyroid peroxidase in dry eyes and mouth syndrome or sicca asthenia polyalgia syndrome. Journal of Rheumatology, 36(8):1626-30.

Pedersen, A.M. ,  Bardow  A.,  Beier Jensen, S.,  Nauntofte, B. (2002). Saliva and gastrointestinal functions of taste, mastication, swallowing and digestion. Oral Diseases, 8(3):117-29.

Pedersen, A., Sørensen, C.E., Proctor, G.B., Carpenter, G.H. (2018). Salivary functions in mastication, taste and textural perception, swallowing and initial digestion. Oral Diseases, (8):1399-1416. doi: 10.1111/odi.12867. Epub 2018 Jun 7.


You can read more of the articles I have written for ProHealth, here. Take a look around. ProHealth is dedicated to providing helpful information on fibromyalgia, and more.

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Celeste's Website

Celeste's Website
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