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 blogsthat everyone might find helpful during these times.

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SPRINGIN TO HOBBIES THAT CREATE PRESENCE AND DESIRE

I find great strength, comfort, anddiversion through poetry and photography, and I am thankful that I have foundways to fill up my thought spaces by writing for others who share this journeywith me. 

 
…Hobbies give us reason to relax and take a break. They are our weapon againstboredom and idle hands. They create the presence of desire in our lives andkeep our mind open to opportunities for exploring our creativity. Learn to makejewelry, read palms, fish, line dance, take photos, make birdhouses, collectantique 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 inthe Broken Body, Wounded Spirit: Balancing the See-Saw of ChronicPain series.]

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

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BREAKINGTHE SHACKLES OF CHRONIC PAIN THROUGH PHOTOGRAPHS

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

***Photographs speak a universallanguage. Whether you are taking pictures or going through old albums, we canbecome mindful and create feelings that soothe us, especially during tryingtimes.

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BALANCINGPAIN AND ILLNESS THROUGH POETRY

For me, writing poetryheightens 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 unlikephysical pain and illness there are no boundaries, no limitations. We haveunabashed freedom to explore and express ourselves using colors, shapes, andconcepts we might not otherwise.

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

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

~Sandford Lyne, author of Writing Poetry fromthe Inside Out

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

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As a once board-certified emergencynurse, 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 othersand ourselves.

BE THE LIGHT

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ ? ~ ? ~ ? ~ ? ~ ? ~

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

Pain Justice: A Resource For Chronic Pain Survivors

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

NationalSuicide Prevention Lifeline : 1-800-273-8255
Suicide crisis lines are listed by country here.

INTRODUCTION

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

Justice  = the principle of moral rightness; decency.

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

I hope the following categories allow you easy access to theresource 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

1.  PATIENT RIGHTS
 

• The AmericanCivil Liberties Union – Healthcare is a civil rights issue
• Facts about the  American with Disability Act from theU.S. EEOC
• ???Equal Employment Opportunity Commission (EEOC)
• Your State’s InsuranceCommissioner
• Find Law –Healthcare Rights
• Whatis Patient Abandonment?? – NOLO
• YourRights and Responsibilities - Great resource from The Pain Community

2.  U.S. GOVERNMENT

• The White House
• Finding Your Governor
• Finding Your Senator –Find your senator under the senator tab
• Finding Your Representative
• Finding State's Attorney General
• The Department of Justice  (DOJ)
• The National Institute of Health(NIH contact info.)?
• The US Department ofHealth and Human Services (HHS)
• HHS Leadership
• The US Department of Labor

3.  PAIN LAW

• Federationof State Medical Boards (Pain care laws by state)
• The US Department of Health and Human Services (HHS) - How tofile a complaint and appeal a decision

4.  PAIN ADVOCACY ANDSUPPORT

• American Chronic PainAssociation
• Advocating Change Together - Centerfor Disability Leadership and Self Advocacy
• American FibromyalgiaSyndrome Association, Inc.
• AmericanAcademy of Pain Medicine – Pain in the news
• American Cancer Society
• Chronic Pain Association of Canada
• ?International PainFoundation
• ?International Support FibromyalgiaNetwork
• National Fibromyalgiaand Chronic Pain Association
• National Organizationfor Rare Disorders
• NationalPatient Advocate Foundation
• The PainCommunity
• The Pain Connection
• US Pain Foundation
• Western Pain Society??

5.  MEDICALORGANIZATIONS - Pain Medicine

*NIH = National Institutes of Health

• The American Academy of PainMedicine
• The AmericanMedical Association - Contact
• The American OsteopathicAssociation - Contact
• The CanadianPain Society
• Centers for Medicare andMedicaid
• InternationalAssociation for the Study of Pain (IASP) Other Medical
• National Association ofBoards of Pharmacy
• National Center for Complementary and Integrative Health (Scroll to bottom, follow on social media and raise yourvoice)
• NIH - National Institute of Arthritis and Musculoskeletal and SkinDiseases
• NIAMSinfo@mail.nih.gov?
• NIH Genetic and Rare Diseases Information Center (GARD)
• The National Institute of Neurological Disorders (NINDS) –Search by disorder
• NIH - NIAID – Autoimmune Diseases
• NIH - NIND - Office of Neurological Disorders and Stroke
• Office of the Surgeon General
• ??NIH ChronicPain Information Page

6.  PAIN NEWS –Current news, professional journals and patient publications

• NationalPain Report
• Pain Network News 

*Many of the advocacy organizations offer subscriptions to their newsletters

7.  ADDITIONALRESOURCES

• American Society of Pain Educators - Pain educator trainingfor healthcare professionals
• Social Security Blue Book
• What to do if you've been denied appropriate pain managementfrom the U.S. Pain Foundation

“Change does not roll in on the wheels of inevitability,but comes throughcontinuous struggle. And so we muststraighten our backs and work for our freedom. A man can't rideyou 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:

Fact or Fiction: Chronic Pain Is Always the Same - Slideshow Health Central

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ ? ~ ? ~ ? ~ ? ~ ? ~

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

The Ins And Outs Of Chronic Myofascial Pain

Understandingchronic myofascial pain relies on our understanding of the illusive myofascialtrigger point (TrP).

WHAT IS A TRIGGER POINT?

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.

THE GREAT IMITATOR

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.

WHAT IS CHRONIC MYOFASCIAL PAIN?

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

Excerptfrom Fibromyalgia, Chronic FatigueSyndrome, 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.

AdditionalReading:

DoTight Muscles Cause You Pain? What You Should Know About Chronic MyofascialPain

What YouShould Know About Myofascial Pain for ProHealth
The Lessons Of Myofascial Pain Syndrome And Fibromyalgia for ProHealth

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ ? ~ ? ~ ? ~ ? ~ ? ~

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

Happy With Hemp: Fibromyalgia And Chronic Pain

Thispost contains affiliate links. See my 

FTCdisclosure page.

https://HappyFlowerCompany.com

Acouple of years ago as a freelance writer, I wrote several articles about cannabisand cannabinoids for Health Central. I gleaned a great deal of information inmy writing assignments. In thisslideshow, I cover things like the cannabis plant: is it hemp, CBD, ormarijuana? Does it matter?

Itwas from those assignments that I decided to try CBD for my pain. However, thelack of reliability disappointed me. I purchased many different tinctures andtopical products. However, there was no certainty about my purchase. Was therereally a “broad spectrum” of cannabinoids? My pocketbook was not appreciatingthe cost of my experiments.

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

MYEXPERIENCE

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

Additionally:

• Ican use it and still write, because there aren’t any psychoactive effects.
• Theplant has a plethora of cannabinoids and terpenes that work together to providethe best effect.
• Iknow the concentration because Happy Flower Company provides the lab reports.
• Itis grown organically.
• It’snot addictive.
• It’saffordable.

Youcan learn more about hemp, here.

WHATTHE HECK IS A TERPENE?

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

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

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

Amore recent study, August 2019, by Jansen, C., et al., Myrceneand terpene regulation of TRPV1, suggests formulations containing mycrenehave the potential to produce an analgesic effect.

GETTINGAQUAINTED WITH HEMP

Havingfibromyalgia, I am super sensitive to many things. Therefore, I found theabundance of terpenes in hemp to be overly strong when smoked. I solved thatissue by investing in a leaf vaporizer, problem solved and I feel vaporizingthe leaf is healthier.

WHATTHE FUTURE HOLDS

Myplans 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 ortopical with a concentration that works best for me.

AND

Ihave decided to be an advocate for HappyFlower Company, so I can offer you a 15%discountwhen you use my code:

PainedInkSlayer

*Ifyou are on medications please discuss hemp (cannabinoids) with your doctor orpharmacist. Like medications, including those we buy over the counter, it is abiochemical.   

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ ? ~ ? ~ ? ~ ? ~ ? ~

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

Winter Speech: Dry Mouth And Fibromyalgia

Photo from BBWS-Winter

Thebrisk arid climate of winter affects many of us. It happens to be anaggravating 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 justwalked through the Mohave Desert.

Withpermission from ProHealth I am reposting “Dry MouthAnd Fibromyalgia: How To Overcome It”, which was first published at ProHealth.com February 6, 2019 and updatedon September 17, 2019.

- - - - - - - -- -

Despiteit being a common complaint among fibromyalgia patients, it’s not somethingthat’s often discussed in articles or online groups and forums, but it’sfrustrating, nonetheless.

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

What Is DryMouth?

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

In2002, onestudy reported that salivary gland dysfunction could be exacerbated byseveral factors, including medications, autoimmune diseases, cancer of the heador neck, neurological conditions, hormonal fluctuations and more. Additionally,a 2018study  provides insights into the mechanisms by which saliva acts asprotector and how it relates to taste, chewing, formation of food blockages inthe esophagus, enzymatic digestion and swallowing.

Thoseof us who live with fibromyalgiasymptoms should be on the lookout for conditions that can aggravate chronicdry mouth.

Causes Of DryMouth

Let’stake a more in-depth look at the myriad of things can act as causes of drymouth, such as:

• Mouthbreathing
• Poordiet
• Dehydration
• Chemotherapy
• Radiation
• Centraland peripheral nerve damage that affects salivary glands
• Smallfiber neuropathy
• Removalof salivary glands (such as seen in oral cancer)
• Medicationside effects
• Medicalconditions like Sj?gren’s, thyroid disease, diabetes, and Lupus)

Furthermore,chronic dry mouth is also one symptom of Sicca syndrome. Sicca is collection ofsymptoms characterized by unusually dry eyes, mouth, throat, nose, and othermucous membranes. Sicca symptoms are commonly associated with the autoimmunedisease called Sj?gren’s. Some people interchange the two, and others see Siccasyndrome and Sj?gren’s Syndrome quite differently. My own rheumatologist seesSicca as Sj?gren’s without the presence of tissue specific antibodies.

Hereinlays the connection between dry mouth and fibromyalgia. In another 2018 study, researchersconcluded about 1/3 of fibromyalgia patients tested positive forSj?gren’s-related biomarkers. Plus, the majority of the testing population hadthe presence of other autoimmune antibodies, lending further credence to theidea that autoimmunity and fibromyalgia are connected.

The ConsequencesOf Dry Mouth

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

• Difficultyspeaking
• Difficultychewing, swallowing, and tasting
• Insufficientdigestive enzyme production
• Increasedrisk of bacterial and fungal infections (which can travel out of the mouth intothe body’s circulation)
• Burningmouth syndrome
• Badbreath
• Mouthsores
• Dentalcavities
• Gumdisease
• Malabsorptionof nutrients
• Gastrointestinaldysfunction

Ifleft untreated or unmanaged, complications related to dry mouth can affect ouroverall health.

Things We Can DoTo Help Chronic Dry Mouth

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

• Addresslifestyle issues, such as stress, diet,tobacco use.
• Considercontributing factors, such as sleep apnea or other airway obstructions (i.e.deviated septum), teeth grinding, TMJ, etc.
• Practicegood oral hygiene as recommended by the AmericanDental Association. Brush teeth twice a day with fluoride toothpaste, cleanbetween teeth daily, limit sugary beverages and snacks, see a dentistregularly.
• Avoidoveruse of caffeine, carbonated beverages, and alcohol, which are dehydrating.
• Avoidsugar.
• Sipon water frequently.
• Rinsemouth frequently.
• Don’tuse mouthwash that contains alcohol.
• Useoral lubricants and saliva substitutes.
• Suckon sugar-free hard candy or chew sugar-free gum to stimulate saliva production.(Discuss these options with your dentist.)
• Usea humidifier.
• Talkto your dentist about a mouthwash that increases saliva.
• Talkwith your doctor or pharmacist about medication side effects. (i.e.,antihistamines or other medication used in fibromyalgiatreatments).
• Talkwith your doctor about prescription medications that can increase salivaproduction.

Chronicdry mouth is complicated; it’s far more than having periodic cotton mouth.  And, while we may not always know what causesit, 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 Sj?gren's autoantibodies found in fibromyalgia patients with sicca and/or xerostomia. Autoimmunity Reviews, 18(2):199-202. https://www.ncbi.nlm.nih.gov/pubmed/30572137

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.

https://www.ncbi.nlm.nih.gov/pubmed/16139777

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. https://www.ncbi.nlm.nih.gov/pubmed/19605678

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.

https://onlinelibrary.wiley.com/doi/full/10.1034/j.1601-0825.2002.02851.x  

Pedersen, A., S?rensen, 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.

https://www.ncbi.nlm.nih.gov/pubmed/29645367

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Youcan read more of the articles I have written for ProHealth, here. Takea look around. ProHealth is dedicated to providing helpful information onfibromyalgia, and more.

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ ? ~ ? ~ ? ~ ? ~ ? ~

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