The Texture Of Pain Through Poetry

"Poetry comes from the highest happiness or the deepest sorrow."

~A. P. J. Abdul Kalam

When Yellow Tundra Meets the Sky© Courtesy Celeste’s Photography

Those of us who live with chronic pain and illness understand respecting our limitations. But, there are many ways to be energetic, despite having a low physical battery. We can:

·        Be mindful.

·        Be compassionate.

·        Be grateful.

·        And, we can ALL write poetry!

Poetry has become a conduit to my most intimate inner feelings. I think that’s because I have learned to face the relevance of both anguish and joy, the reality that those of us living with chronic pain and illness know. Whether writing or reading poetry, I find there is a positive role for intervention, resolution, and learning to let go, which allows me to explore the diversion of creativity. So much is waiting to be explored.

When I prepare to write, I am energized by favorite words that tempt me with their sweet nectar. I have a favorite word list in my journal, which includes famous quotes that inspire me. I find the rich texture of expression that is born from the words I choose.

I try to share at least one of my poems in April to raise awareness for poetry. The following started as an “I Am” poem.

Dear Pain, Much to Your Chagrin© by Celeste Cooper

Don’t cloud my wits—attack, bother, or nag.

You know you have nothing positive to add.

You fractured the ability to create a red flag.

Dare not threaten my spirit or make me weak,

A tender, tired body deserves not your grief,

This survivor will not stop searching relief.

Mindful of judgments you pose in my ear,

My spirit remains positive in the absence of fear.

Affirmations are the armor that protects what is dear.

So, as constant and unyielding as you try to be,

I continue to bear arms to make you retreat.

Pain, you may have my body, but you don’t have me!

_______________________________________________________________________________

...Poetry has been described as the conduit to our soul. It provides us the emotional and spiritual energy to hurtle over life’s obstacles. It heightens our senses of sight, sound, touch, and smell, and it can be delicious. It offers a feel, a texture, to all we experience and work through in our mind, because it knows no time, no era, nor limits. We can express self and circumstances through the written word…

Pick up your favorite book, a thesaurus from the dollar store, a magazine, whatever, and make a list of some of your favorite words. ...Begin your journey of inner expression—start writing ...

[Excerpt, Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS https://www.amazon.com/dp/0615958664/ ]

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All our books have tips for writing for self-exploration. Poetry is one of those.

Additional Reading:

Creating an I Am Poem

Balancing Pain and Illness Through Poetry

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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. 

4 Ways To Minimize Stress Vulnerability In Fibromyalgia

April is stress awareness month and I can’t think of a better time to review how stress interferes with wellness. There is a promise of new growth that encourages us to seek ways to minimize stress by managing our reactions and making better choices.

#1 Know the effects

We have all experienced the effects of stress. In fibromyalgia it can:

·        Make our cognitive problems worse.

·        Interfere with sleep.

·        Make our pain worse.

·        Hijack our ability to cope with pain.

·        Interfere with orchestration of neurotransmitters in our brain.

·        Cause autonomic nervous system problems.

·        Make comorbid or co-existing disorders harder to manage.

… and more

So, if we ask, - Does fibromyalgia make me vulnerable to stress? - The answer is yes.

#2 Identify manifestations of stress

How stress manifests itself may vary between each of us, and each of us may experience certain symptoms according to the event surround it. But, generally stress can cause or be part of:

·        Anxiety and/or depression.

·        Irritability.

·        Changes in vital signs and body temperature. This is particularly important to when dealing with the autonomic effects of fibromyalgia.

·        Increased pain.

·        Muscle tension, spasm, or dysfunction.

·        Headache.

·        Fatigue.

·        Gastrointestinal problems, like GERD or IBS.

·        Teeth grinding.

·        Disordered sleep.

·        Forgetfulness.

·        Immune system problems, like poor healing.

·        Tremors.

·        Changes in speech.

… and others that may be specific to you.

#3 Be aware of stress behaviors

While a certain amount of stress can be beneficial by temporarily improving our focus, chronic stress is a game changer. The behaviors we develop in response to chronic stress might include:

·        Fear and loss of control.

·        Impulsive behavior, such as stress eating, unnecessary spending, or taking risks.

·        Mood swings.

·        Avoidance of physical activity.

·        Inability to focus.

·        Difficulty setting and achieving goals.

·        Making poor decisions.

·        Interference in relationships.

Knowing our behavioral response to stress is important for us to set achievable goals and develop an effective plan for dealing with chronic stress.

#4 Focus on a personal strategy

Those of us living with fibromyalgia understand the consequences of stress. But, what are some things we can do to promote focus, minimize pain, improve sleep, and reduce the effects of stress gone awry.

·        Make a stress response plan with measurable action-oriented goals.

·        Make a real effort to get back to a hobby.

·        Find ways to explore nature. This is particularly helpful for me, because I can use my hobby of photography and writing poetry.

·        Celebrate accomplishments with family and friends.

·        Maintain a healthy diet.

·        Surround yourself with people who encourage one another.

·        Use mindfulness techniques, such as progressive muscle relaxation, meditation, creative visualization, etc.

·        Practice deep breathing.

·        Incorporate bedtime rituals to promote sleep.

·        Listen to music that has a calming effect on us.

·        Move around. When I realize I am drowning in stress, I get physical. I organize closets, clean out the refrigerator, take a walk, go through old computer files, practice Tai Chi, etc. I highly suggest this.

·        Write in our journal.

·        Get a massage or other bodywork.

·        Be involved in our healthcare.

·        Manage environmental triggers.

·        Find a therapist who understands chronic pain and can provide useful tools for reducing stress, like guided meditation, hypnosis, and biofeedback.

* If stress is interfering with your normal activities of daily living, it’s time to seek professional help.

Conclusion

"The greatest weapon against stress is our ability to choose

one thought over another."

~ William James, American philosopher and psychologist

We can’t always control our stress triggers, particularly when living with the unpredictability of fibromyalgia, but we can control our response. The more practiced we become, the quicker balance is restored.

Additional Reading:

A Brain Under Siege: Centralization, Chronic Pain, And Fibromyalgia

The Physicality Of Fibrofog, The Brain, And Pain

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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. 

Do Tight Muscles Cause You Pain? What You Should Know About Chronic Myofascial Pain

Courtesy StockSnap.io Free Photos

This blog post, What You Should Know About Chronic Myofascial Pain, originally appeared on ProHealth, January 7, 2019. Because the article continues to garner attention, I am sharing it in its entirety here on The Pained Ink Slayer with ProHealth’s permission.

If you have questions, be sure to comment.

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We have all experienced a tight muscle that causes pain and restriction of motion, such as sleeping on our neck wrong, but this is not myofascial pain syndrome (MPS). So, what is?

Myofascial Pain Syndrome

The primary job of a skeletal muscle is to provide locomotion by attaching to other muscles and to joints. When knotted up pieces of muscle fiber called trigger point/s develop, the muscle is shortened and becomes dysfunctional. Myofascial trigger points (TrPs) prevent normal contraction and relaxation of the muscle involved. These self-sustaining nodules in the hyper-irritable area of the muscle/s cause sensory, motor, and autonomic symptoms.

myofascial = pertaining to the covering (fascia) of muscle

When TrPs are not treated early and appropriately, the tug and pull of the dysfunctional muscle fibers creates stress and leads to development of TrPs in either the same muscle, compensatory muscles on the same or opposite sides of the body, or in all four quadrants of the body as our musculoskeletal system perpetually tries to adjust.

Diagnosing

Diagnosis can be complicated if the examiner is not familiar with MPS. Myofascial disorders are generally poorly understood in the medical community. Bourgaize S, et al. (April 2018) allege MPS is confused with fibromyalgia, because both MPS and FM are prominent forms of chronic musculoskeletal pain in their literature review. This delays proper treatment.

A history of chronic myofascial pain and muscle and/or joint dysfunction is what usually gets us to the doctor. As previously noted, MPS pain and dysfunction usually occurs in more than one quadrant of the body and includes: 

• Pain that lasts three to six months.
• Trigger point/s that can usually be felt by the examiner.
• A taut muscle band. (You may or may not be able to feel the TrP in the band depending on the amount of muscle contraction. There may be one or more in the same muscle.)
• Referred pain. (A referral pattern for the TrP is consistent between patients. Pain can be well away from the primary trigger point.)
• Twitch response of the muscle by some mechanical method (i.e.: manual pressure or needle insertion).
• Decreased mobility related to the affected muscle.
• Weakness in the affected muscle.

Myofascial pain syndrome is known as the great imitator for a reason. For instance, MPS involving the piriformis muscle (a small deep muscle that cuddles the sciatic nerve) may be misdiagnosed as sciatica.

Myofascial Pain Syndrome And Fibromyalgia

Many of the conditions known to cluster with FM, like severe headache, restless leg syndrome, teeth grinding, balance problems, TMJ, chronic pelvic pain, chest wall pain, and more have a myofascial component of their own. Pain specialist, Dr. Karl Hurst-Wicker, MD, explains it like this.

“There is a good deal of overlapping between MPS and fibromyalgia (FMS). Likely this is related to the consistent long-term activation of peripheral pain pathways causing central [nervous system] sensitization and other changes in the nervous system that contribute to the development of FMS. Conversely, it can work in the other direction too; a patient with a primary FMS can develop MPS, in no small part because the FMS can amplify and perseverate even minor myofascial pain and injury to the point where it can propagate and become a regional issue.” (Health Central, Fibromyalgia Centralization and Peripheral Myofascial Pain: Interview with Karl Hurst-Wicker, MD, accessed December 31, 2018)

Unlike FM, MPS is not gender prevalent. Many of the perpetuating factors are genetic, such as short upper arms, short lower legs, one leg shorter than the other, curvature of the spine, or other musculoskeletal deformities. Some metabolic dysfunctions are thought to perpetuate myofascial pain syndrome, too. People with skeletal structural defects, both inherited or the result of injury, surgery, post-polio syndrome, or poor posture, and people who experience undue stress on a muscle, including repetitive motion, can contribute to MPS.

What We Can Do

Treatments for myofascial pain syndrome include manual treatment by a certified myofascial trigger point specialist, a physical therapist or chiropractor that specializes in myofascial therapies, guided self-treatment, electrical stimulation, ultrasound guided trigger point injections by a pain specialist, and more. But, the best treatment is prevention. We should be aware of perpetuating factors, so we can avoid them or manage them.

Conclusion

Consistent diagnostic criteria that can be used by all healthcare professionals are needed to ensure patients get the right diagnosis and the right treatment in a timely manner. Both MPS and FM cause pain, but that pain is NOT the same. Myofascial pain is a peripheral nerve problem that can usually be isolated; FM is a central nervous system problem that causes body-wide sensitivity.

Perpetuating factors of MPS can, and do, vary among us. Some of us may have a disorder like joint hypermobility. We may have both MPS and FM. Some of us work at computers, and yes, I must remain astutely aware of my body positioning. Maybe you had a surgery that left you with scarring of tissue that puts a strain on normal movement. There are a myriad of things that can lead to development of chronic myofascial pain.  But, the important thing to remember is that trigger points are treatable, and the longer we go without addressing the problem, the greater the risk to developing trigger points that seemingly breed like rabbits and become resistant to treatment.

Additional Reading:

• Fibromyalgia Tender Points or Myofascial Trigger Points: Knowing the Difference for the Right Diagnosis    
• Restless Leg Syndrome: Sleep, Fibromyalgia, and Myofascial Pain Syndrome  
• Fibromyalgia Centralization and Peripheral Myofascial Pain: Interview with Karl Hurst-Wicker, MD

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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. 

Spring In To Hobbies That Create Presence And Desire

On Stage - Courtesy Celeste's Photography

Spring is a time of reawakening after a long cold winter. It’s a time to explore things that will bring us pleasure as we break through the shell of our own winter cocoon.

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. My hobbies are huge self-esteem boosters for me as one who lives with chronic pain. 


I am anticipating the opportunities for photo moments as children play, as the flowers bloom, and the wildlife begins to stir.  The canvas of life is limitless. This spring my goal is to use lighting more strategically in my photography, and to write at least two poems before summer.

…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 bird houses, collect antique watches, start a joke book, crochet, or hand glide. Take up scrap booking, 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.]

What hobbies would you like to explore this spring? Write them down and find new ways to be present and fulfilled by your accomplishments.

For more information, see "Writing Your Own Hobby Résumé" in Winter Devotions.

"We simply need to keep an open mind, 

trust our own experience, and believe."

 ~ Pam Grout, author of E-Squared: Nine Do-It-Yourself Energy Experiments 
That Prove Your Thoughts Create Your Reality

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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. 

Does Rare Disease—EDS—Plague Fibromyalgia? #ShareYouAreRare

Many thanks to https://worditout.com/

 “Living with [Benign Joint Hypermobility Syndrome] BJHS is not without consequences. When I was seven months pregnant, I fell down a flight of stairs because of lax hip joints. (JHS can be especially pronounced during pregnancy.)  After my son was born, I was referred to an orthopedic doctor who diagnosed me with JHS. I have had 4th-degree sprains of both ankles, four shoulder repairs for torn tendons and muscles, and one shoulder has been reconstructed because of JHS. I experience ileo-tibial band laxity causing unstable hips, piriformis syndrome, and a lot of pain. For years, I have lived with sagging and abnormally thin skin that tears easily, like that of someone on long-term steroids. And I battle chronic Achilles tendonitis. But others diagnosed with JHS could have a vastly different experience than I have, because none of us is affected exactly the same.”

Excerpt of part of my story in an article I wrote on joint hypermobility and chronic pain for HealthCentral.

There are many theories regarding joint hypermobilty and the connection to Ehler’s Danlos Syndrome (EDS), a genetic collagen disorder.  Some researchers consider Benign Joint Hypermobility Syndrome (BJHS) to be a milder form of one of the many types of EDS. (1) According to NORD, there are thirteen subdivisions. 

NORD established the annual awareness day for rare diseases on the last day of February. RareDiseaseDay.org/ tells us to #ShareYouAreRare and more.

Last year, the following appeared on ProHealth and with ProHealth’s permission, I am sharing it in its entirety here on The Pained Ink Slayer.

_________________________________________________________________________

Does Rare Disease—EDS—Plague Fibromyalgia?

According to the National Organization for Rare Disorders (NORD), there are many Ehlers Danlos Syndromes and related disorders caused by different genetic defects in collagen. We will focus on the most common type of Ehlers-Danlos syndrome in this article.

hEDS = EDS hypermobile type, previously known as EDS type III or joint hypermobility syndrome.

Characterized by joint hypermobility, skin extensibility and tissue fragility, this type of EDS can co-occur in fibromyalgia and myofascial pain syndrome even though it is thought to be a rare condition. Fibromyalgia and EDS also share connections you might not have considered.

The EDS Connection

Gastrointestinal problems are noted in both hEDS and fibromyalgia, and myofascial pain syndrome has been noted in both hEDS and fibromyalgia.

A 2014 study, A Prospective Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients with Gastrointestinal Symptoms (2), found upper and lower GI symptoms increased with the severity of joint hypermobility type. Upper GI symptoms were dependent on autonomic and chronic pain factors.

 A 1993 study published in the Annals of the Rheumatic Diseases (3) suggests there is a strong association between joint hypermobility and fibromyalgia in schoolchildren and joint hypermobility may play a role in developing fibromyalgia. Keep in mind, in 1993, few understood the incidence of myofascial pain syndrome in chronic pain conditions, which could be true in this case. It would be interesting to see a follow up study on the participant group to see how many of these children would meet today’s suggested fibromyalgia criteria.

In 2013, a French study, Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type? (4), reports some patients suffering from fibromyalgia present with clinical signs and alterations in tissues, changes in antibodies that test for certain markers found in tissue, and alterations to the microscopic structure of skin that is similar to hEDS. They also suggest some types of fibromyalgia could represent undiagnosed joint hypermobility.

A 2017 case study (5) highlights that patients with EDS type III [hEDS] may suffer from pain due to myofascial trigger points around the affected hypermobile joints, not a surprise to me. I have been writing about this for years. Myofascial pain syndrome is a chronic pain condition caused by myofascial trigger points and it appears to perpetuate pain in both fibromyalgia and hEDS.

Symptoms

Symptoms may vary, but there are general symptoms. Don’t be surprised by the number similar to fibromyalgia and/or myofascial pain syndrome.

·        Loose, unstable joints prone to injury

·        Easy bruising.

·        Dysautonomia

·        High and narrow palate with teeth crowding

·        Small fragile blood vessels

·        Velvety-smooth skin which may be stretchy

·        Abnormal wound healing and scar formation

·        Low muscle tone and weakness

·        Muscle and joint pain

·        Joint pain associated with exercise

Other criteria may include:

·        Family history

·        Headaches caused by resulting Arnold-Chiari malformation (noted in some FM patients)

·        Low bone density

·        Not knowing where body parts are in relation to space, loss of proprioception

·        Difficulty processing information rapidly

·        Functional gastrointestinal disorders, such as delayed stomach emptying, inflammation of the stomach, and irritable bowel syndrome 

·        Vascular skin conditions, such as Raynaud’s and skin moddling due to a sympathetic nerve response known as livedo reticularis

What about you?

I was born with lax joints, just like my maternal grandmother and aunt. Well into adulthood, I sat with my legs splayed as if chicken wings, or crossed the other direction, yoga style. I have gotten myself into some precarious positions that result in pain, and like fibromyalgia, I can’t always predict when that will happen. I continue to struggle with the effects. Whether joint hypermobility is benign (without genetic markers), or genetic (as seen in hEDS), it is not without consequences. Because of lax hip joints, I fell down a flight of stairs; I was seven months pregnant. I have had 4th-degree sprains of both ankles, several bouts of Achilles tendonitis, inflammation of multiple joints, four shoulder repairs for torn tendons and muscles due to dislocation, knee surgery, and I experience ileo-tibial band inflammation caused by unstable hips, compensatory piriformis syndrome, and a lot of pain. And I am not alone. There are many like me. Are you?

The future

We need more research on this connection. Folks can’t seem to agree on diagnostic criteria or terms for hEDS or fibromyalgia, which is extremely confusing and frustrating. Most likely this is because of the lack of robust research. Funding for research on rare diseases is grossly lacking. We need to raise awareness.

(Edited February, 2019) This year February 28th is Rare Disease Day in the United States. The U.S. Pain Foundation has provided various ways to engage within our community. Check out the awareness events taking place and share the word in your communities.

You can find more information on Ehlers-Danlos Syndromes at NORD, and the NIH, Genetic and Rare Diseases Information Center (GARD).

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The amount of research of this painful rare disorder over the past two decades is limited, but what we do have suggests more investigation is needed and many more people may be affected than realized. Symptoms of EDS can overlap with FM and could present as a mimicking or co-existing condition. Joint hypermobility and skin disorders have been more frequently observed in children with FM (6) than in otherwise healthy children, skin ultrastructural similarities between FM and EDS hypermobility type have been noted (7), and some types of EDS can perpetuate the development of myofascial trigger points that cause chronic myofascial pain (8).

Research Resources:

(1) Hermanns-Lê T, Reginster MA, Piérard-Franchimont C, Delvenne P, Piérard GE, and Manicourt D. (2012). Dermal ultrastructure in low Beighton score members of 17 families with hypermobile-type Ehlers-Danlos syndrome. Journal of Biomedicine and Biotechnology; 2012:878107.

https://www.ncbi.nlm.nih.gov/pubmed/23091361

(2) Fikree A, Grahame R, Aktar R, Farmer AD, Hakim AJ, Morris JK, Knowles CH, Aziz Q. (2014). A prospective evaluation of undiagnosed joint hypermobility syndrome in patients with gastrointestinal symptoms. Clinical Gastroenterology and Hepatology; (10):1680-87. https://www.ncbi.nlm.nih.gov/pubmed/24440216

(3) Gedalia A, Press J, Klein M, and Buskila, D. (1993). Joint hypermobility and fibromyalgia in schoolchildren. Annals of the Rheumatic Diseases; 52(7): 494–496.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1005086/?tool=pubmed

(4) Hermanns-Lê T, Piérard GE, Angenot P. (2013). Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type? [Article in French]

La Revue Médicale de Liège; 68(1):22-4.

https://www.ncbi.nlm.nih.gov/pubmed/23444824

(5) Tewari S, Madabushi R, Agarwal A, Gautam SK, Khuba S. (2017). Chronic pain in a patient with Ehlers-Danlos syndrome (hypermobility type): The role of myofascial trigger point injections. Journal of Bodywork and Movement Therapies; 21(1):194-196.

https://www.ncbi.nlm.nih.gov/pubmed/28167178   

(6) Ting TV, Hashkes PJ, Schikler K, Desai AM, Spalding S, Kashikar-Zuck S. (2012). The role of benign joint hypermobility in the pain experience in Juvenile Fibromyalgia: an observational study. Pediatric Rheumatology Online Journal;10(1):16. https://www.ncbi.nlm.nih.gov/pubmed/22704360

(7) Hermanns-Lê T and Pierard GE. (2016). Skin ultrastructural similarities between Fibromyalgia and Ehlers-Danlos syndrome hypermobility type.

International Journal of Clinical Rheumatology; 11(2), 019-022.

https://www.openaccessjournals.com/articles/skin-ultrastructural-similarities-between-fibromyalgia-and-ehlersdanlos-syndrome-hypermobility-type.pdf

(8) Fernández-de-Las-Peñas C. (2009). Interaction between Trigger Points and Joint Hypomobility: A Clinical Perspective. Journal of Manual and Manipulative Therapy;17(2):74-7.

https://www.ncbi.nlm.nih.gov/pubmed/20046548

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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.