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. 

The GERD-Fibro Connection

Clinicians should be more alert to an association between gastroesophageal reflux disease (GERD) and fibromyalgia, says Don Goldenberg, MD, a fibromyalgia expert and affiliate faculty in rheumatology at Oregon Health & Science University in Portland, Maine. He also said in the interview, A Closer Look at the Interrelationship of Fibromyalgia and GERD, by Kathleen Doheny for Practical Pain Management, “For pain practitioners, routinely asking FM patients about any problems with irritable bowel and repeated reflux would be a very good start."

An article written last November for ProHealth, Is There a GERD—Fibro Connection?, continues to garner attention most likely for these reasons, so with ProHealth’s permission I am sharing the article in its entirety here on The Pained Ink Slayer’s blog.

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By Celeste Cooper

Could gastro-esophageal-reflux-disease (GERD) be co-morbid to fibromyalgia? A new study (October 2017) published in the peer-reviewed journal Pain suggests the answer is YES. Researchers found fibromyalgia patients are slightly more likely to develop GERD than people with GERD are likely to develop fibromyalgia (FM), but there is a bi-directional connection. As to why this “bi-directional association” occurs is up for debate according to a Practical Pain Management interview of fibromyalgia experts who reviewed the study.

What is GERD?

Anyone who has experienced heartburn knows the symptoms of an isolated event of gastric reflux, usually caused a specific thing, such as seriously spicy or fatty food, or eating too fast. For some of us, though, these symptoms are persistent and can be aggravated by many things.

These persistent symptoms may be a sign of gastroesophageal reflux disease (GERD). If you have mild acid reflux that occurs at least twice a week or moderate to severe acid reflux that occurs at least once a week, your doctor may order certain tests to confirm a diagnosis of GERD.

What happens?

The esophagus, a tube-like structure behind the breathing tube (trachea) in our neck, provides the passageway for food and beverages from the mouth to the stomach. When the esophagus becomes irritated, symptoms of heartburn, sour taste, burning, a sore throat, hoarseness, nausea, regurgitation, problems swallowing, and sometimes even severe chest pain may occur.

*Caution - Never assume chest pain is GERD until heart problems have been ruled out. Symptoms can mimic a heart attack.

Two gates, in our esophagus, called sphincters, act to control the flow of things we ingest. As we swallow the upper esophageal sphincter opens, gravity and esophageal motility move things along, and the lower esophageal sphincter (LES) opens to allow the contents to flow into our stomach, where digestion continues. When the LES gate fails, backwash of stomach acid (gastric reflux) occurs.

esophageal motility = synchronized contractions in the esophagus that moves food toward the stomach.

Normally, the lower gate (LES) relaxes to let food pass into the stomach where special acids continue the digestive process. But, when this normally tight muscle becomes floppy or opens ad lib, permanent erosive damage can occur, affecting many things, including our sense of taste and even our sense of smell if it gets into our airway passages during sleep.

Why does the sphincter stop working?

Sphincter dysfunction can be the result of heredity, life-style choices, myofascial pain syndrome, connective tissue disorders, a stress response, obesity, hormones, slow stomach emptying, certain neurological conditions, medications, cancer of the esophagus, or any other thing that interferes with normal esophageal motility.

What can we do?

There are things we can do. We can make healthier lifestyle choices, such as avoiding alcohol, caffeine, foods that are acidic, fatty, or spicy, and carbonated beverages. We can stop smoking and assess the side effects of our supplements and medications. Exercise is important to our wellness, but exercise that creates gravitational reflux, such as jumping, aggressive jogging, and yoga poses (i.e. downward facing dog) can aggravate symptoms.
Sleeping with our upper body at a slight angle (head higher than our waist) can help prevent gravitational reflux. (Try putting four-inch blocks under the head of your bed frame.) Learn about and use an anti-inflammatory diet, eat small frequent meals, and exercise regularly by walking or doing things like T’ai Chi, which has been found helpful for those of us with fibromyalgia. There are supplements and medications that can help, too. So, if you have symptoms, discuss them with your doctor or pharmacist.

Conclusion

One of the reviewers of the study, “Bidirectional association between fibromyalgia and gastroesophageal reflux disease,” Don Goldenberg, MD, a fibromyalgia expert and affiliate faculty in rheumatology at Oregon Health & Science University in Portland, Maine, told Practical Pain Management that this study should serve to raise awareness about the likelihood of an increased prevalence of co-morbidity. He suggests clinicians be alert to the possibility of this association and routinely assess for irritable bowel and GERD in their fibromyalgia patients. I couldn’t agree more. I have had GERD for many decades but never considered it might be related to fibromyalgia. So, if you are experiencing symptoms, be sure to discuss this connection with your heath care provider. I know I will.

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Additional Reading

GERD - and it isn’t about comforting Aunt Geordie coming for a visit.  By Celeste Cooper

Wang JC, Sung FC, Men M, et al. “Bidirectional association between fibromyalgia and gastroesophageal reflux disease: two population-based retrospective cohort analysis.” Pain. 2017 Oct;158(10):1971-1978. doi: 10.1097/j.pain.0000000000000994

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. 

10 Fast Facts Fibromyalgia is Real

The original article, 10 Fast Facts Fibromyalgia is Real, appeared September 17, 2016 on ProHealth. The article continues to garner attention, so with ProHealth’s permission I am sharing the article in its entirety here on The Pained Ink Slayer blog.

         

Those of us who live with fibromyalgia know the pain, cognitive dysfunction, poor sleep quality, and fatigue. We understand and can discuss these things with fellow patients, but when we are confronted with someone who knows very little about FM, we sometimes become tongue-tied. Maybe that’s because fibromyalgia is a complex disorder and fibrofog gets in our way. Maybe we let others play on our vulnerabilities, making us feel insecure about our response.

And, maybe we can do better by being prepared with some quick facts.

Following are ten fast facts that will allow your tongue to flow freely as it forms the words that prove fibromyalgia is real.

1.     Fibromyalgia is not a new disorder. As reported in our book, the collective symptoms of fibromyalgia (a syndrome) were first documented in the early 1800s by British surgeon, William Balfour. Nearly a century later, another British pioneer, Sir William Gowers, gave the syndrome its first name, fibromyocitis. Throughout time, fibromyalgia has been known by names that reflect the understanding of the era. (1)

2.     Fibromyalgia is a physical problem that has demonstrated abnormal blood flow in specific areas of the brain (2) and brain scans show unique brain activity (3) in response to pain.

3.     The primary, consistent symptom of chronic body-wide pain and tenderness is present in ALL fibro patients, just as the primary symptoms of other illnesses define that syndrome or disease.

4.     Fibromyalgia is consistently accompanied by cognitive dysfunction that is significantly more challenging than simple forgetfulness and there is evidence. For instance, the hippocampus, located in the brain, is thought to be the center for emotion, memory, and the autonomic nervous system regulation. It plays a crucial role in maintenance of cognitive functions, sleep regulation, and pain perception, and hippocampus metabolic dysfunction has been seen in fibromyalgia. (4, 5)

5.     Fibromyalgia is more than not sleeping well for a night or two. It’s like never sleeping at all, and we don’t “bounce back” when we do get eight hours. Because we don’t get normal slow wave sleep progression (6), the healing stages of sleep, the micro-healing that occurs with normal sleep patterns is impaired. This phenomenon could very well explain cellular oxidative stress identified in fibromyalgia. It’s far more than not getting a good night’s sleep for those of us with fibromyalgia.

6.     Fatigue is a symptom of fibromyalgia; it is not laziness. Sometimes, we have to remind our peeps of our “before person.”

7.     While depression can accompany fibromyalgia or any chronic illness, it is not a primary symptom. Major depression has its own diagnostic criteria.

8.     Fibromyalgia is usually accompanied by another disorder. (7)  So, when someone tells you no one could have all that wrong, let him or her know that in fact, we can and do.

9.     There is a blood test for fibromyalgia, it’s called the FM/a Test® and some insurance carriers are now covering it. I did have the test and I do have the physical cellular changes seen with this test that are specific to fibromyalgia. (8)

10.While some believe fibromyalgia is progressive in nature and others do not, fibromyalgia is considered a life-long central nervous system disorder. (9)  It is not going away because our friends, many times eager to help, tell us they just read about a miracle cure in some tabloid magazine.

I once had a neurologist tell me he would not see me for my migraines, because he didn’t “believe in” fibromyalgia. After I recovered, I simply said, “fibromyalgia is not a belief system, I will not be back.” I was thankful I didn’t “come in like a wrecking ball” like Miley Cyrus and hit him upside the head with my purse.

WE DO NOT NEED TO DEFEND OURSELVES FOR HAVING FIBROMYALGIA!

I have learned from various encounters that some folks are innocently ignorant and want to know more. For those folks, I spend the time. I have also learned there are closed-minded people who are not worth the effort because they have no intention of listening. If someone makes you defensive, simply reflect their words back to them and change the subject, even if it’s a healthcare provider. We do not need a healthcare provider who is stagnant in a profession that is in a constant state of learning. Give these ten facts to a staff member or leave some copies in the waiting room. They are sure to generate some discussion.

References:

1. Cooper, C. and Miller, J. 2010. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press.
2. Guedj E, Cammilleri S, Niboyet J, Dupont P, Vidal E, Dropinski JP, Mundler O. Clinical correlate of brain SPECT perfusion abnormalities in fibromyalgia. J Nucl Med. 2008 Nov;49(11):1798-803. doi: 10.2967/jnumed.108.053264. Epub 2008 Oct 16.    
3. Kim J, Loggia ML, Cahalan CM, Harris RE, Beissner F, Garcia RG, Kim H, Barbieri R, Wasan AD, Edwards RR, Napadow V. The somatosensory link in fibromyalgia: functional connectivity of the primary somatosensory cortex is altered by sustained pain and is associated with clinical/autonomic dysfunction. Arthritis Rheumatol. 2015 May.   
4. Emad Y, Ragab Y, Zeinhom F, El-Khouly G, Abou-Zeid A, Rasker JJ. Hippocampus dysfunction may explain symptoms of fibromyalgia syndrome. A study with single-voxel magnetic resonance spectroscopy. J Rheumatol. 2008 Jul;35(7):1371-7. Epub 2008 May 15.   
5. Ichesco E, Puiu T, Hampson JP, Kairys AE, Clauw DJ, Harte SE, Peltier SJ, Harris RE, Schmidt-Wilcke T. Altered fMRI resting-state connectivity in individuals with fibromyalgia on acute pain stimulation. Eur J Pain. 2016 Aug;20(7):1079-89. doi: 10.1002/ejp.832. Epub 2016 Jan 15.   
6. Vijayan S, Klerman EB, Adler GK, Kopell NJ. Thalamic mechanisms underlying alpha-delta sleep with implications for fibromyalgia. J Neurophysiol. 2015 Sep;114(3):1923-30. doi: 10.1152/jn.00280.2015. Epub 2015 Aug 5.   
7. Bennett, RM.  Pain management in fibromyalgia. Pain Manag. 2016 May;6(4):313-6. doi: 10.2217/pmt-2016-0026.   
8. FM/a® Blood Test – “How To” and My Results. June 2016 Blog. 
9. Fibromyalgia Has Central Nervous System Origins. American Pain Society, Press Room, May 16, 2015. (Accessed 2016, September 9).  

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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.