2018 Musings From The Pained Ink Slayer

Celeste on Amazon

I am blessed to have wonderful people who collaborate. So many give of themselves in an effort to offer support to those suffering with chronic pain, FM, ME/CFS, myofascial pain, CRPS/RSD, Lupus, Migraine, Lyme's Disease, Ankylosing Spondylitis, interstitial cystitis, arthritis and other painful conditions. It is because of the fortitude of others, I am inspired to keep on keeping on. Following is a compilation of what I have written in 2018.

PROHEALTH

Complex Regional Pain Syndrome: Similarities and Contrasts with Fibromyalgia

THE PAINED INK SLAYER

Could Biofeedback Be On Your Chronic Pain Gift List?

THE PAINED INK SLAYER  

The GERD-Fibro Connection

PROHEALTH

Five Things You Should Know About Dysautonomia If You Have Fibromyalgia 

THE PAINED INK SLAYER  

A Fall Lesson on Mindfulness

10 Fast Facts Fibromyalgia is Real (Blog Reprint of original 2016 ProHealth article)

PROHEALTH

Brain Under Siege: Centralization, Chronic Pain, and Fibromyalgia

THE PAINED INK SLAYER  

Chronic Pain: Does Sex Matter?

FMa Test - BCG Fibromyalgia Vaccine Trials Receive FDA Approval

PAINS Project Moves to Academy of Integrative Pain Management (AIPM)

PROHEALTH

Standing On The Shoulder Of Giants: Managing Chronic Pain And Invisible Illness With Words From the Wise

THE PAINED INK SLAYER  

A Day in the Rockies Poem about Rockies for mom

THE PAINED INK SLAYER  

4 Ways to Power Up Your Positivism

PROHEALTH

The Physicality Of Fibrofog, The Brain, And Pain

Diagnosing And Living With Irritable Bowel Syndrome

THE PAINED INK SLAYER  

FDA responds on behalf of chronic pain patients who require opioids to treat their pain

The FM/a® Blood Test and Participation in Fibromyalgia Vaccine Study

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You can follow my ProHealth profile page where I write about fibromyalgia and its frequent partners, and Health Central has archived the articles I have written for them, here.

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PROHEALTH

Fibro Playmate of the Month – The Migraine Connection

THE PAINED INK SLAYER  

Opportunity Knocks Again: Public Comments on Patient-Focused Drug Development for Chronic Pain

Migraine and Me: If you could see me now #MHAM2018 challenge

Comment Now to NIH Pain Management Best Practices or Forever Hold Our Peace

12 Months and 14 Fibro Musings

PROHEALTH  

7 Tips for Reclaiming Control over Fibromyalgia

THE PAINED INK SLAYER  

Science, Fibromyalgia, and Exercise

PROHEALTH

3Tips for Reducing Stress in Fibromyalgia

THE PAINED INK SLAYER  

9 Reasons Tai Chi Reduces Pain and Promotes Health

Balancing Pain and Illness through Poetry

PROHEALTH

Myofascial Pelvic Pain in Men and Women with Fibromyalgia

THE PAINED INK SLAYER  

Mindfulness and Chronic Pain

Never Again Will I Travel Without My Oska® PEMF Device. #sponsor discount code CCRN60

PROHEALTH

Does Rare Disease—EDS—Plague Fibromyalgia?

THE PAINED INK SLAYER  

Fibromyalgia FM/a Blood Test and EpicGenetics Landmark Clinical Research Efforts

Making the Best of AFFIRMATIONS

THE PAINED INK SLAYER  

A PATIENT's VOICE – Life in Chronic Pain with Frank Elliot

PROHEALTH

Fibromyalgia and Thyroid Resistance

THE PAINED INK SLAYER  

The Thyroid and Fibromyalgia: Is there more than a butterfly connection?

Avoiding Lockdown

HEALTH CENTRAL

How Kinesiology Can Help Manage Chronic Pain

THE PAINED INK SLAYER  

New Year’s Wish for Fellow Pain Warriors (January, 2018) 

  

As I look back at 2018, I am filled with gratitude, love, and admiration for each of you, and look ahead to the New Year with hope and promise.

THANK YOU for your comments and for sharing any and all information, not only from me, but from the many other advocates, bloggers, and writers who share this space with all of us.

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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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. 

Could Biofeedback Be On Your Chronic Pain Gift List?

A study on the effects of mindfulness (a type of meditation focusing on the present without judgment) looked at changes in the brain and pain sensitivity. The results showed that those of us with higher innate mindfulness report less pain. Higher mindfulness was also associated with greater deactivation of a brain region involved in attention and subjective emotional responses to sensations, which means it promotes cognition and enables us to improve our reactions to pain and other symptoms. A recent study  published November 5, 2018 in NeuroImage suggests neurofeedback could be a cost effective way of helping improve fibromyalgia pain and sleep. This is consistent with the findings of other studies on the benefits of mindful exercises and neurofeedback in chronic pain from many sources.

That’s great news, but some of my readers tell me they can’t get a handle on any type of meditation to minimize their experience with chronic pain. My response is based on my personal experiences, keep practicing—until. I have practiced meditation for over fifty years. That’s how long I have lived with migraine disease. I also learned the value of focused breathing during 24 hours of labor with each of my two children. But, it would be nearly three decades later before I learned the value of biofeedback. I had objective evidence of how my thoughts affect the vital signs of my life. And, now you can too.

Technology has brought us to a new place. We can monitor and react to our meditation practices at home. We don’t have to wonder if what we are thinking is right or helpful. So, I asked an expert about biofeedback a few questions. The expert was once my therapist and now he is my co-author, Dr. Jeff Miller, PhD.

Q:  Is the program I used in your office still available?

Jeff:

Wild Divine's Journey to Wild Divine, the program you are familiar with, is no longer available. About six programs used the fingertip sensors for both heart rate variability (HRV) and galvanic skin resistance (GSR), also called skin conductivity level (SCL). As new programs were developed, the company quit supporting the sensors and went to a wired ear clip that only measures heart rate.

Q: What is available now?

Jeff:

Lightstone (Wild Divine) was bought out by Unyte™, which developed the Bluetooth version of the ear clip for HRV. This is a plus, because the wired ear clips often fail if the wire moves.

Unyte™ IOM2 is working on a GSR sensor, and they are selling subscriptions now rather than software. 

Muse™ is a wireless neurofeedback device that tracks your brain signals. I use daily and I love it. You wear it like a headband across the forehead and you Bluetooth it to a device. 

Q: Why do you love Muse so much?

Jeff:

·        It reads your brainwaves and rewards you for increased alpha and gamma wave production by altering the sound environment on the device such as, rainforest, beach, ambient music etc.

·        You get real-time feedback on your mental state to help you meditate.

·        It is very dependable and entertaining. 

·        It is very intuitive and simple to learn.

·        You can wear it anywhere and use it in any situation that allows the sensors to stay in contact with forehead and ears.

·        Muse keeps your stats like a Fitbit™ does.

·        It issues challenges and encouragement. 

·        There's an expanding library of device accessible guided meditations and discussions (Deepak does some!).

·        It is well supported. 

·        They have a very good monthly Museletter.

·        At $199 Muse™ is affordable for a home neurofeedback device.

* You can receive a 15% discount at https://choosemuse.com/ by using Jeff’s sponsor code AMBASSADOR15-20180911. The discount code is applied at checkout. My total was $169.15 and shipping is free. In full disclosure, as a sponsor Jeff receives 10%.  

Am I promoting biofeedback? You bet I am, and can hardly wait to see the Muse in my stocking this year. I realize meditation isn’t going to cure the illness that causes my pain and other symptoms, but I know it will help me cope in a positive way and bring balance to the mental, physical, emotional, and spiritual balance we talk about in our books. It will give me some control!

Additional Reading:

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

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. 

A Fall Lesson on Mindfulness

If I Could See Further - Celeste's Photography

Neuroscience can't tell us why, but it does tell us that our brain changes when we use cognitive and meditative therapies. This is especially important for those of us who experience chronic pain, because "chronic background noise" surfaces to our conscious mind when it reaches a point of saturation. At that point it screams out for attention. But, that’s the wonderful thing about our mind. If we stay alert and recognize background noise before it reaches the point of maximum saturation, we can bust through harmful thoughts using intentional mindful awareness.

“Mindful awareness expands my being

and encourages me to live consciously, without judgment.”

~Celeste Cooper

Broken Body, Wounded Spirit:

Balancing the See-Saw of Chronic Pain

Fall Devotions

Our pain is not the villain here; it is the result of a bad actor invading our body. It doesn’t want to exist anymore than we want to experience it. So, being hard on it isn’t helpful, it won’t make it go away, and it won’t make us feel better.

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by Celeste Cooper, RN and Jeff Miller, PhD

Think of a bright fall day, briskness on the edge of arriving, leaves a colorful artist’s pallet, and migrant birds are flying overhead in the backdrop of a crisp blue sky. These are examples of being mindful. All we have to do is be present and aware in the moment admonishing our role as critic.

How is being mindful important to me today?

Excerpt Fall Devotions, Day 10
Available on Amazon and all major outlets.

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Being mindful of our pain without judgment redirects our thoughts to create an environment that is appreciated fully.​  

To unleash victory, I must have an open mind and willing heart,

judge not, embrace change, and be a steadfast observer of self.

Additional Reading:

Pained Ink Slayer Series: Mindfulness and Chronic Pain

Getting Physical with Our Body Talk 

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. 

Science, Fibromyalgia, and Exercise

Courtesy Pexels.com

Last year I wrote about the importance of critical thinking and problem solving and casting a light on recurring theories. This year, I decided to kick off a review of the research beginning with a look at exercise and fibromyalgia.

                                

In my 2015 blog, I asked "Can Aerobic Exercise Reduce Fibromyalgia Symptoms?" As I said, the answer is tricky because there is evidence that aerobic exercise can reduce symptoms, and there is evidence to suggest it can increase symptoms. So, maybe we should look at the evidence on different types of exercise, like warm water (aquatic) exercise, yoga and stretching, and aerobic exercise vs. tai chi.

                                                                                   

AQUATIC EXERCISE

Using assessment parameters we usually see when studying fibromyalgia, researchers (2008) looked at the effectiveness of aquatic (warm water) therapy compared to home based exercise therapy.  They found that both aquatic therapy and home-based exercise programs have beneficial effects. However, when considering pain management, only aquatic therapy had longer lasting effects. And, a 2015 study revealed that a pool-based aquatic aerobic exercise program was the most effective treatment when compared to isometric strength-stretching and aerobic exercise. So, can we conclude aquatic therapy is good for fibromyalgia, maybe not?

In 2014, Bidonde J, et al. concluded that there is low to moderate quality evidence to suggest that aquatic training is beneficial. And “very low to low quality evidence suggests that there are benefits of aquatic and land-based exercise, except in muscle strength (very low quality evidence favoring land)”. What are we to think? 

Ai Chi = The use of breathing techniques and progressive resistance training in water to relax and strengthen the body, based on elements of qigong and Tai chi chuan.

Ai Chi - Wikipedia

I personally found aquatic therapy made my myofascial pain syndrome pain much worse. Enter Ai Chi. Knowing my past experience, my physical therapist encouraged me try Ai Chi. Trusting in him, I did. It is very different and I liked it. So, it comes as no surprise to me that a 2016 pilot study found “significant differences in values such as pain perception, vitality, mental health, as well as perceived overall improvement in quality of life”. This new approach (Ai Chi), rather than aquatic strength training, may make a difference in the benefits of warm water therapies. 

RESISTANCE EXERCISE

Research on resistance training (isometrics, weight training, etc.) is reported by the experts to be of low quality, so I am not entertaining it here.

STRETCHING AND YOGA

A 2014 Brazilian review, Effects of muscle stretching exercises in the treatment of fibromyalgia, found significant improvement in all studies regarding pain and quality of life. However, they concluded that even though it is clear that muscle stretching for fibromyalgia is important, there is a need for further studies because of the low quality of methods used and the lack of standardization for comparative analysis. This makes it difficult to know if a certain stretching technique is better.

What about yoga?

A 2011 pilot study suggests a protocol for managing fibromyalgia with yoga and meditation. While they do report positive responses, there were only 11 participants.

Courtesy Pexels.com

Side note: I do a few gentle flowing yoga poses as a warm up to tai chi. If my chest feels restricted, I get right to breathing through the child’s pose. Tree pose is my barometer for knowing when I need to work on balance before I do something stupid, like fall over for no reason, or sling my arms into walls, what I call in our BIG book, the “Bull in the China Cabinet Effect.” I have learned that holding postures will activate trigger points and cause mind-altering pain. But, stretching can feel so good; and when it’s done right, it should.

A small 2017 mindful yoga pilot study found fibromyalgia symptoms and functional deficits improved significantly, as did physical tests of strength and balance, and pain coping strategies. These findings indicate that further investigation is warranted into the effect of Mindful Yoga on neurobiological pain processing.”

AEROBIC EXERCISE vs. TAI CHI        

Aerobic exercise is often suggested as a first line treatment for fibromyalgia. However, as recently as 2017 that could change. In a review, researchers report those of us with fibro may see little to no difference in our pain and physical function from aerobic exercise. Quote, “We downgraded the evidence owing to the small number of included trials and participants across trials, and because of issues related to unclear and high risks of bias (performance, selection, and detection biases). Aerobic exercise appears to be well tolerated (similar withdrawal rates across groups), although evidence on adverse events is scarce, so we are uncertain about its safety.” There is some research to suggest the way our body responds to exertional demands could play a role in our intolerance to aerobic exercise, such as running, biking, or other physical activities that increase our heart rate.

Balancing Rocks-Celeste's Photography

There is a great deal of evidence to suggest tai chi is beneficial for improving fibromyalgia symptoms and mobility.  Maybe that’s because our autonomic nervous system tolerates the gentle movements of tai chi better than aerobic exercise. A randomized controlled trial published on March 23, 2018 looked at the effects of tai chi training in relationship to heart rate variability, symptoms, and muscle fitness in women with fibromyalgia and suggest tai chi may be effective for improving autonomic balance, pain, fatigue, strength and flexibility in women with fibromyalgia. And, a study published March 21, 2018 found “tai chi mind-body treatment results in similar or greater improvement in symptoms than aerobic exercise”.

It’s important for anyone with chronic pain to keep moving. And, when it comes to fibromyalgia, it appears the positive results are more likely if the practice of mindfulness is included with exercise.

Additional Reading:

A Year of Fibro: Musings, Writings, and Opinions, May 2016. A recap of my writings on fibromyalgia

9 Reasons Tai Chi Reduces Pain and Promotes Health

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. 

Balancing Pain and Illness through Poetry

All Eyes to the Sun © Celeste’s Photography

"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

Maintaining forward momentum in the face of pain, fatigue, and unpredictable symptoms can be challenging. In our book Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS, we talk about inner expression through poetry and how it can help us cope with pain and fatigue. All our books have tips for writing for self-exploration. Poetry is one of those.

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APRIL IS POETRY AWARENESS MONTH

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Poetry is often thought of as the conduit to our soul. 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 am connected to an inner being I only know through poetry.

I wrote a blog on how to write “I am” poem, which you can use as a template to write your own.

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CREATING AN "I Am" POEM

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I love it when the words fly, coming together effortlessly, but that isn't always the case — at times — I have to put my words aside or work from a different angle. But that's why I love to do it.

I wrote this poem staring with four random words: truth, bird, broken, observe. It went through several transformations before I felt a deep meaning for myself. Some of my poems don't make a word of sense to others, but they don't need to. They are mine, just as your will be yours.

This Is My Truth © by Celeste Cooper

Like a bird with a broken wing,

I can stray off course, my flight pattern disrupted.

Wounded from the fall, I will not judge, because

As a wise owl, I observe, I accept, I understand—

Before I take flight, I need time to mend, plan a new course.

This is my truth.

Imperfection as clear as a broken mirror,

Though broken, goals are transformed.

Seedlings forced into maturity will not thrive.

Accepting that mistakes are the seed, I cultivate.

The broken mirror affords a self-reflection of reality.

This is my truth.

I falter, sometimes wretchedly, but enlightened.

Sweet is the nectar of success—not synonymous to perfection.

Erupting from deep inside a reminder from Edison,

"I did not fail; I found 10,000 ways that won't work."

I accept my imperfections—only then—can I take flight.

This is my truth.

I hope you will pick up a pencil and a piece of paper. Write down some of your favorite words, you can find them in crossword puzzles, a good book, the dictionary, or make them up; that's the beauty of it. Let your mind float and your hands glide across the paper as the words guide you to a new place, a place hopefully free of pain and illness, but if you need to work that out, you can go there too by observing until it dissipates in the background. Just do it.

Additional Reading: Minimizing the Consequences of Pain and Illness by Exploring Your Creative Nature through Poetry by Celeste Cooper

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”

~ • ~ • ~ • ~ • ~ • ~

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.