May Awareness: Sharing Our Spoons by Celeste Cooper

Moving into the Month Of Spoonies

Did you know?

• Those who learn to live despite chronic illness or pain are called spoonies.
• May is awareness month for:

• Allergy
• Arthritis
• Chronic Fatigue Syndrome (ME/CFS, SEID)
• Ehlers-Danlos Syndrome (EDS)
• Fibromyalgia
•  Lyme’s Disease
•  Neuropathy
• Osteoporosis
• Systemic Lupus Erythematosus (SLE, Lupus)

ALLERGY– The role in immune dysfunction

Allergy may be coexistent with or aggravate many conditions. “Allergy symptoms are in response to an abnormal neurotransmitter, specifically, histamine.” (Cooper and Miller, 2010) 

Take the Health Central “Allergy Quiz”. 

ARTHRITIS

Arthritis is an umbrella term for many disorders that affect our joints. The most common type is osteoarthritis. Research is advancing what we know of about osteoarthritis.

See Health Central article "Arthritis Awareness Month: More than 100 Types of Arthritis and Related Diseases" by Lisa Emrich, Follow me, Celeste Cooper, Chronic Pain Health Pro and other "Health Guides and Pros" who walk the talk. Ask questions, comment, share your story. 

CHRONIC FATIGUE SYNDROME (ME/CFS/SEID)

Advances have been made in understanding the biology of ME/CFS.  Love it or hate it, and there are reasons for concern, the Institute of Medicine proposes a name change that addresses the most common component, systemic exertion intolerance disease (SEID). There is genuine concern that this name, while addressing a biological cause, may result in ignoring other biological changes that have been associated with ME/CFS. Many people educate and advocate for those of us with this dreadful disorder. You can find out who they are on my website here. 

EHLERS-DANLOS SYNDROME (EDS)

Ehlers-Danlos Syndrome is a genetic disease with several types under its umbrella. Characterized by joint hypermobility, skin elasticity, and connective tissue fragility, this disease results from atypical (unusual) proteins are responsible for the fragility of collagen, which is the glue for our tissue. Some patients with EDS also have fibromyalgia or are susceptible for developing myofascial pain syndrome. Read on. 

FIBROMYALGIA (FM)

We are learning more about fibromyalgia. Several researchers believe they are close to finding biomarkers, but the stigma lives on because of those who hold tight to the in ill-conceived notion that fibromyalgia is a psychosomatic disorder. In light of more recent research, how and why remains a mystery to me. But, as I always say, there is opportunity in adversity.

It’s possible that finding the answer to FM will unlock our understanding of other chronic pain disorders associated with pain (pain that is amplified by our brain’s perception). I have written many blogs on fibromyalgia; check out the archived blogs to the right listed according to month.

LYME’S DISEASE

“Lyme disease is caused by the spirochete bacterium, Borrelia burgdorferi. The infection is passed to humans by the bite of an infected tick carrying the microorganism. Symptoms include a “bull’s eye” rash at the site of the bite, malaise, fever, headache, muscle aches, and swollen lymph nodes. Untreated Lyme disease can result in symptoms occurring months or years after the initial exposure and causing damage to the heart, joints, and nerves of infected individuals. Symptoms can imitate other diseases and can be misdiagnosed.” (Cooper and Miller, 2010)   

It is very sad to say, but despite overwhelming evidencethat Chronic Lyme’s Disease  exists, there are those who doubt it.

OSTEOPOROSIS

Osteoporosis is diagnosed according to bone density tests. Poor bone density makes our bones fragile increasing fracture. A common complication of osteoporosis is hip fracture, and the mortality of hip fracture in the elderly is very high.  Watch a great overview of osteoporosis and prevention on Health Central. 

NEUROPATHY

“Neuropathy is any functional disturbance or pathological change in the peripheral nervous system; also used to denote nonspecific lesions, in contrast to inflammatory lesions.” (Cooper and Miller, 2010)

Neuropathy can be due to an array of medical conditions. It can also be idiopathic, meaning that the cause of symptoms is unknown. Read about neuropathic pain. 

SYSTEMIC LUPUS ERYTHEMATOSUS (SLE, Lupus)

Systemic Lupus Erythematosus is poorly understood and under researched. The cause is unknown. Often referred to as Lupus (not to be confused with discoid lupus), SLE affects predominately women, African Americans, Hispanics and Asians and is generally diagnosed between puberty and mid age. It is an inflammatory autoimmune disease that causes destruction of the body’s various connective tissues. Read on.  

You can learn more about Lupus in an article by Leslie Rott at Health Central, “Lupus is as Lupus Does”. 

BRINGING IN THE SPOONS

While we wait for such evidence, it is important to remember that regardless of our diagnosis, regardless of biomarkers, we are yet to find the cause or a cure for many immune or neuro-immune disorders. So, we must find ways to cope in a healthy way. You can find coping 

and management strategies on my website.

To all my fellow SPOONIES, thank you for sharing this journey. 

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate—Sharecare Fibromyalgia Health Expert

NEW Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

BODY-WORK: The Anatomy’s ’ Labor of Love Manual therapies you might find helpful for chronic pain.

by Celeste Cooper, RN

Chronic pain wears us down regardless of the source. There are many painful disorders recognized in May, and I have discussed ways to advocate and raise awareness, now it is time to say something about what we can do to help our body not only function better, but feel better too.

Self-Responsibility, “…One thing that seems to have been forgotten to a surprising degree is the lifelong plasticity of most of our bodies’ tissues, and the manner in which our whole style of living molds this plasticity in innumerable ways that could never be anticipated by the coding of our DNA.
~ Deane Juhan, author of Job’s Body: A Handbook for Bodywork

  

The myofascia covers all muscles, and it is part of the largest organ structure of the body, connective tissue. Is it any wonder so many chronic pain conditions share myofascial dysfunction?

The continuum of connective tissue for the most part is not made up from living cells, instead it is made up of fluids and fiber. Because of this, we need to help it along either manually or by stretching, keeping the life fluids going in and the waste fluids going out.

Massage therapy

Somewhere along the line, we forgot about the value of touch. As one of our major senses, touch has more than one job. It provides information to the brain regarding impending danger, and it provides feelings of comfort and caring. Massage therapy provides helpful feedback to the body and the brain, promotes relaxation, and relieves stress and physical pain and mobilizes stagnant fluid in the lymph system which is dependent on physical movement and manual stimulation.

The type of massage therapy depends upon your personal tolerance. Until your brain learns to like it, it is prudent to start with soft touch. As you progress, you should eventually be able tolerate bodywork that helps with deep muscle and joint function.

Massage therapy versus bodywork

Massage is a manipulation of the body using hands on touch therapy by stroking, kneading, and rubbing soft tissue. Massage is sometimes accompanied by aroma therapy, hot rocks, and other modalities to help you

achieve a full body experience.

Bodywork on the other hand, is a distinct therapy and requires advanced training. Bodywork targets specific areas of the anatomy that are holding back the body as a whole. It is a systematic therapy with specific goals for improving function and feelings of well-being. For instance, a good bodyworker knows how to break down restrictive tissue, such as adhesions and scars, and treat knotted up and tense muscles, thereby restoring the normal flow of blood and lymph. When you see a bodyworker, it is prudent to start with the problem that bothers you the most, pain, swelling, muscle weakness, etc.

The goal of both massages therapy and bodywork is to restore balance to the mind-body connection.

Myofascial trigger point massage/bodywork

Myofascial pain syndrome (MPS) has been associated with spinal disease, arthritis, sport injury, post surgical restrictions, migraine, chronic pelvic pain (including vulvodynia and bladder disorders), teeth grinding, TMJ, fibromyalgia, chronic fatigue syndrome, restless leg syndrome, TMJ, bowel dysfunction, sexual dysfunction and impotence, and the list goes on from there.

If you know you have co-existing myofascial pain syndrome which is identified as myofascial trigger points lasting more than three months,  specific bodywork is indicated. Read more here. 

Myofascial trigger points (MTrPs) are called “neurological imitators.” This explains why physicians who do not understand MPS are perplexed by what they think are unexplained tingling, numbness, or sensations of needles and pins, or other associated sensation abnormalities their patients often experience.

Myofascial trigger point pressure therapy by someone trained in the work of Travell and Simons, here,  is helpful in this instance.  You can also learn to do self treatment using tools such as tennis balls, Theracane, or Knobbers, Yoga ball, swim noodles, and a good book on self treatment, such as Clair Davies, The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, forward by Dr. David Simons. (May you both RIP gentle souls).

Basically, any organ or body system can be affected by myofascial trigger points (MTrPs), they can also obstruct blood circulation, nerve transmission, and lymphatic flow. Learn more about MTrPs here. 

Conclusion

Bodywork and massage therapy comes in many shapes and sizes. The good news is that the current level of thinking among medical practitioners is that it works!

The next hurdle to overcome is getting insurance to cover it as a helpful medical tool. I want you to know that people are fighting for the integration of these types of therapies and more.  Raising awareness, such as what we do at the Pain Action Alliance to Implement a National Strategy, here, will help in these endeavors.

The goal of and bodywork is to keep all body parts in motion with the least amount of stress. Learn more about different types of bodywork, such as, Alexander technique, craniosacral therapy, shiatsu, myofascial release, reflexology, Rolfing, Rosen method, myofascial trigger point therapy, self treatment for myofascial trigger points, spray and stretch, acupressure, Trager work, Vodder manual lymphatic massage/drainage, and how to find the right, qualified therapist here.

You can also find helpful tips on massage and finding the right therapist in the Fall Devotions of the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, here.

*As with everything medical, there are some risks for certain people. These include, fear of touch, bleeding disorders or take blood-thinning medication, burns, open or healing wounds, blood clots in the veins, fractures, severe osteoporosis (brittle bone disease), or other severe bleeding disorders. If you are in doubt, be sure to check with your physician.  

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  For more information about the author see http://TheseThree.com

Check pub med for citations

As with any new therapy, discuss any risks for your particular condition with your physician first.

Answers are based on the writings/books of the author and are not meant to replace medical advice.

Celeste Cooper interviewed by Cinda Crawford on the Health Matter’s Show. Fibromyalgia, Chronic Fatigue Syndrome and other May awareness disorders:

Improving Perceptions, Using Anger to Your Advantage, and Managing Strategies for a Complete Life despite Pain and Other Life Altering Symptoms

Two Interviews PART ONE and PART TWO

Each interview is approximately 30 minutes.

 

Part One:

Part one of the interviews with Cinda Crawford, regards awareness and the importance of advocacy, including tips for how you can contribute your time, talent and treasures.

We cover important topics such as:

• What conditions are considered for MAY awareness?
• What is a neuro-endocrine-immune disorder/disease (NEI/NEID)?
• What overlapping conditions are also honored in May? You could be surprised.
• How you can participate
• Support for organizations and individuals

Learn about your kissing cousins, what others do for you and how to use your own time, talent and treasures to make a difference for everyone.

You will need to copy and paste the following link in its entirety into your web browser:

https://www.audioacrobat.com/playweb?audioid=Pb5dd383b9d44c671a7af979de4ae06cbZVl7RnxuY2dwUA&buffer=5&shape=6&fc=33CCCC&pc=CCFFFF&kc=20&bc=FFFFCC&brand=1&player=ap21

Part Two:

Chronic pain and illness can create feelings of frustration, fear, anger and helplessness. In part two of the interview we discuss ways to address these feelings and start a journey to make a difference in your own life.

There are four key elements to being whole and finding balance in our life. We talk about everything from sleep and diet to learning the value of emotional and spiritual awareness. The four elements for fullness and balance are:

• Physical
• Emotional
• Mental
• Spiritual

You will need to copy and paste the following link in its entirety into your web browser:

https://www.audioacrobat.com/playweb?audioid=P59f02ac9621a152c3b1ef08e3dbd36aeZVl7RnxuY2dwVw&buffer=5&shape=6&fc=33CCCC&pc=CCFFFF&kc=20&bc=FFFFCC&brand=1&player=ap21

 

Cinda Crawford is a health counselor and host of the Health Matters show, a mind-body healing author, ordained minister and creator of Sacred Celluar Healing.

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD), and contributing author to Deirdre Rawlings, Fibromyalgia Insider Secrets: 10 Top Experts.  

Celeste is also a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com,  and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy (PainsProject.org). Her website is www.TheseThree.com