What’s the Big Deal about Sleep? by Celeste Cooper

"When I woke up this morning my girlfriend asked me, 'Did you sleep good?' I said 'No, I made a few mistakes." 

~Steven Wright

Why is Sleep Important?

Sleep is a period of time when our brain and body take a break from daily stress. It’s something we all need and something we look forward to doing. Or is it? For anyone who has insomnia, fibromyalgia, chronic fatigue syndrome, chronic pain, or a primary sleep disorder, that is the million-dollar question.

We are all gussied up in our soft sleepwear and we begin our evening ritual for SLUMBER.

Schedule bedtime

Limit physical activity

Use comfort measures

Meditate

Breathe

Eliminate stress and food

Remember nothing—clear your mind

Excerpt Integrative Therapies… (Cooper and Miller)

So why doesn't it come, and if it does, why doesn't it feel like it?

How is Sleep Dysfunctional?

Regardless of the cause, it’s a real bummer when we don’t sleep. We glace at the clock and it is 3 a.m. ; we are still AWAKE, or it’s 7 a.m. and we realize we slept through the night, hooray! But, when we start the day, we realize it didn't matter. We are still POOPED OUT. The tumble begins (sometimes literally). We become agitated and our internal dialogue does not reflect happiness over the non-event.

Insomnia

Whether insomnia is a primary sleep problem within the circuitry of the brain or it is due to physical pain, a snoring bed partner, a pet that can’t settle in, or all of the above, the results are the same. Anyone who hasn't had sleep or quality sleep knows sleep deprivation psychosis, headaches, cognitive deficit, and problems with gait, tremors, and generalized irritation with the world around them.  

Sleep Apnea

Oxygen deprivation causes problems, significant ones. Some people stop breathing several times during the night. The body’s organ systems are affected because the body relies on oxygen for survival. This is called sleep apnea. Sleep apnea can occur for many reasons, but the most common cause is some type of airway obstruction. If you have been told you snore a lot (not what you think you do, like my husband), discuss it with your doctor. This seemingly annoying behavior to your partner is more than annoying to your body.

Slow Wave Sleep Progression

When the slow wave stages of sleep, when micro healing occurs, are deficient or absent maintenance or sleep and sleep quality are affected. This central sleep problem (occurring in the brain) is seen on a special EEG used during a sleep study. All those electrodes plastered to our head works much like an EKG does to see how the heart’s electric circuit is behaving. We often talk about body organs, but forget that every part of our body is wired, and like a frayed wire in the attic, sputters and spurts occur. Sometimes they are so severe the house blacks out or burns down. We need the deep stages of sleep for healing and some believe lack of these healing stages is an underlying factor in not only fatigue, but also the muscle pain of fibromyalgia.

What Else Interferes with Sleep?

Other things that interfere with quality include teeth grinding (bruxism), migraine, irritable bladder causing nocturia (getting up several times during the night to urinate), periodic limb movement (often called restless leg syndrome, only it is different because it occurs during sleep) and just about anything that interrupts the sleep cycle, including some medications or combination of medications.

“Depression, sleep deprivation, pain, fatigue, unhealthy relationships, and unhealthy coping mechanisms prevent us from achieving physical, mental, emotional, and spiritual balance. It is important to talk with our doctor about our sleep patterns, depression, and difficulty maintaining relationships, but we can manage challenges too. We can manage challenges by…"
(Excerpt) Spring Devotions (Cooper and Miller)

SLUMBER My Friend– the Conclusion 

Sleep is necessary for resting the mind, boosting the immune system, and fostering overall health and relationships.

Be sure to read the footnotes to this blog.

Some causes of sleep problems are quite treatable while others need ongoing time and our attention. But, regardless of the cause, our brain needs to prepare for sleep. Keep that acronym in mind—SLUMBER. It may not cure us, but it can’t hurt.

Human bodies respond to routine.

Make it a good one.

Now, I am not a sleep expert, but as a patient, I understand the repercussions of absent stage II and III sleep, insomnia, bruxism, nocturia, and severe periodic limb movement. So, if you share the rumbles, dark skies, and threatening clouds of sleep disruption, reach for the rainbow. Consult with a healthcare professional that specializes in sleep. They have a toolbox full of helpful strategies. Keep an open mind; help could be on the way.

 

March is #SleepAwareness Month. Here’s to those forty winks!

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, The Pained Ink Slayer. 

Celeste’s OTHER BLOGS ON SLEEP:

• Is sleep keeping you awake at night? Poor sleep in people with fibromyalgia and chronic fatigue syndrome.
• The Mystery of Sleep in Fibromyalgia and Chronic Fatigue Syndrome
• Sleep oh sleep, where art thou? Could your fibromyalgia medications be causing insomnia?
• Snooze News - The conundrum of sleep deprivation
• “Wake Up Sleepy Head” - Non-Restorative Sleep in FM and CFS

~ • ~ • ~ • ~ • ~ • ~

(Signature line appended, April 2018)

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. 

Don't Snooze? You Lose - Sleep Deprivation in Pain Disorders

Sleep is a really big deal, especially for those of us who don't get it, or get it but never feel rested. What better time to talk about sleep, or lack of it, than March—"Sleep Awareness Month."

What Came First—The Seed or the Tree?

Many things can lead to sleep deprivation according to those who study it; anxiety or depression, airway obstruction (sleep apnea), narcolepsy (falling asleep without reason), pain, disordered sleep patterns   (prevalent in fibromyalgia), and inspiratory airflow dynamics also seen in fibromyalgia.  

We know primary sleep disorders affected by a disruption in the central nervous system (also is in charge of hormones that regulate sleep), sleep starts, and delayed sleep phase (inability to fall or maintain sleep) and all the other things from the first paragraph, interfere with our sleep quality. However, other disorders can plague our sleep too; including, teeth grinding (bruxism), periodic limb movement, PLM, (the vampire of restless leg syndrome), migraine, nocturia (nighttime urination, caused by bladder dysfunction, or certain other diseases), irritable bowel syndrome,  contributing symptoms of myofascial pain syndrome, chronic fatigue syndrome (ME/CFS), and more. Wouldn't it be nice to get some sleep?

Promoting Your Circadian Rhythm

Our circadian rhythm, a physiological cycle of all living things thought to repeat about every 24 hours, is orchestrated by two markers, melatonin concentration, and core body temperature. So how can we affect these things and contribute to restfulness?

Here is a helpful acronym for sleep hygiene:

S - Schedule bedtime and stick to it
L - Limit physical activity before bedtime
U - Use comfort measures
M - Meditate (count those lambs)
B - Breathe
E - Eliminate stress and food (including caffeine 2-3 hours prior to bedtime)
R - Remember nothing—clear your mind (journal your to-do list so you can let go)
(Cooper and Miller, 2010, pg 167) 

Here are some tips that might keep your internal DVR from repeating the same episodes over-and-over again.:

• Limit caffeine intake to mornings.
• Avoid alcohol in the evening.
• Limit activity two hours before bedtime.
• Don’t eat right before going to bed.
• See if your medications cause insomnia.
• Practice relaxation techniques.
• If deprivation is significant, see your doctor.

(Cooper and Miller,2013, Are You Missing Your Favorite Episode? The Soap Opera of Pain and Sleep.

Disorder in Bed Court!

Sleep deprivation can impede healing, foster agitation, and when severe, cause psychosis. This might explain why so many of us have difficulty fighting off viruses and recovering from injury, the things normally repaired during sleep. When our cells are deprived of oxygen, cellular metabolism and energy is affected.

All the things discussed here—can and do—play a role in sleep quality. I advocate for my fellow sleep deprived cohorts. If anyone reading this article suspects sleep problems can be contributing to your symptoms, please report it to your doctor so he or she can get a sleep study, because many times despite doing everything right, a road block occurs and we literally lose our map to life. Not having enough or the right kind of sleep can be a major contributor. Effective sleep is important to our overall health. 

There are  integrative therapies that can be implemented, medications that can help, and specific treatments for specific sleep disorders, but you will not know without a sleep study where your problem lies (pardon the pun).

Other blogs on sleep:

• What’s the Big Deal about Sleep?
• Is sleep keeping you awake at night? Poor sleep in people with fibromyalgia and chronic fatigue syndrome
• The Mystery of Sleep in Fibromyalgia and Chronic Fatigue Syndrome
• Sleep oh sleep, where art thou? Could your fibromyalgia medications be causing insomnia?
• Snooze News - The conundrum of sleep deprivation
• “Wake Up Sleepy Head” - Non-Restorative Sleep in FM and CFS

 

(Signature line appended, April 2018)

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 Mystery of Sleep in Fibromyalgia and Chronic Fatigue Syndrome by Celeste Cooper

We talk about sleep a great deal. We don’t seem to get enough and when we do, we still don’t feel rested.  But what really is dysfunctional sleep?

Dysfunctional sleep is loss of sleep and ineffective sleep patterns. This problem can cause agitation, phobia, sleep deprivation psychosis, headaches, cognitive deficit, problems with gait, weight problems, and it can affect our mental, physical, emotional, and spiritual health and weaken our immune response.  Though sleep dysfunction can be part of any chronic pain condition, its effects are prevalent fibromyalgia (FM), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  Both disorders affect multiple body systems and have particular overlapping conditions of bruxism, severe headaches, and restless leg syndrome accompanied by periodic limb movement during sleep. 

Dysfunctional sleep can be caused by some type of airway obstruction causing sleep apnea where the person stops breathing several times a night, and it can be due to abnormal cycles of sleep, where certain cycles are not present or brain activity, measured by brain waves, is abnormal. These abnormalities have an effect on maintaining sleep or sleep quality. Insomnia, which is not being able to get to sleep, is also considered dysfunctional. Many of us seldom, if ever, enter deep stages of sleep

In sleep apnea or other obstructions to air flow, a person is deprived of oxygen needed for cellular metabolism and energy resulting in many of the symptoms listed in the introduction, and it can cause problems with the cardiovascular system. Obstructive sleep can also create disrupted sleep cycles and in a recent review, it was found that as many as one third of patients diagnosed with ME/CFS actually had primary sleep problem and not ME/CFS at all.  For certain other patients, dysfunctional sleep is comorbid to FM and CFS/ME.

Symptoms of bruxism, teeth grinding, are unusual wear and tear on your teeth, continued breakdown of dental restorations, teeth breaking, and tooth sensitivity. Though the exact cause is unknown, it could be mediated in the central nervous system creating an unconscious response to pain or stress. While it is usually your dentist who notices the wear pattern on your teeth, it can also be identified in sleep studies. Teeth grinding can also increase the incidence of myofascial trigger points, TMJ, and migraine. You can read more on this connection here. 

In a small study done at Johns Hopkins University, Richard Allen, PhD, using an MRI, found glutamate, a chemical messenger in the central nervous system associated with arousal, to be abnormally high in patients with RLS and the quantity was associated with sleep quality. Maybe not so coincidentally, glutamate levels were also found to be elevated in the muscle of FM patients.

Restless leg syndrome is often misused interchangeably with periodic limb movement. Periodic limb movement (PLM) is repeated movement of legs, and sometimes arms, during sleep. While RLS and PLM often occur together, they are not the same. Restless leg occurs during wakefulness and PLM occurs during sleep.

In summary, could disrupted sleep patterns, obstructive sleep function, bruxism, and periodic limb movement, be major contributing factors to our sleep quality? The answer is yes. And, should all fibromyalgia and chronic fatigue syndrome (ME/CFS) patients have their sleep evaluated with a sleep study, not only considering sleep wave progression and presence of obstructive sleep function, but also a specific assessment for bruxism and PLM?  

Sleep deprivation can impede healing, foster agitation, and when severe, cause psychosis. This might explain why so many of us have difficulty fighting off viruses and recovering from injury, which is normally repaired during sleep.  The prevalence of bruxism, RLS and PLM in fibromyalgia is significant and can be factors in sleep quality which is a primary symptom of fibromyalgia. I felt it so important that I wrote a couple of letters and advocated with one of the authors of the diagnostic criteria for an automatic referral for a sleep study.

In light of the significance of sleep in both FM and ME/CFS, I feel it important to discuss your symptoms with your doctor.  They may or may not know the many factors associated, but most important is to get a sleep study. You could have a treatable condition that might improve your symptoms overall.

You can learn more about sleep, sleep hygiene, bruxism, restless leg syndrome and periodic limb movement, the involvement of myofascial trigger points and possible other causes and disruption of the central nervous system in Integrative Therapies for Fibromyalgia Chronic Fatigue Syndrome and Myofascial Pain: The Mind Body Connection, available here. 

Resources:

Allen RP, Barker PB, Horská A, Earley CJ. Thalamic glutamate/glutamine in restless legs syndrome: increased and related to disturbed sleep. Neurology. 2013 May 28;80(22):2028-34. doi: 10.1212/WNL.0b013e318294b3f6. Epub 2013 Apr 26.

Carra MC, Huynh N, Lavigne G. Sleep bruxism: a comprehensive overview for the dental clinician interested in sleep medicine. Dent Clin North Am. 2012 Apr;56(2):387-413. doi: 10.1016/j.cden.2012.01.003.

Fernandes G, Franco AL, Gonçalves DA, Speciali JG, Bigal ME, Camparis CM. Temporomandibular disorders, sleep bruxism, and primary headaches are mutually associated. J Orofac Pain. 2013 Winter;27(1):14-20. doi: 10.11607/jop.921.

Gerdle B, Larsson B, Forsberg F, Ghafouri N, Karlsson L, Stensson N, Ghafouri B. Chronic Widespread Pain: Increased Glutamate and Lactate Concentrations in the Trapezius Muscle and Plasma. Clin J Pain. 2013 Jul 24. [Epub ahead of print]

Jackson ML, and Bruck D. Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review. J Clin Sleep Med. 2012 December 15; 8(6): 719–728.

doi:  10.5664/jcsm.2276 PMCID: PMC3501671

van der Zaag J, Naeije M, Wicks DJ, Hamburger HL, Lobbezoo F. Time-linked concurrence of sleep bruxism, periodic limb movements, and EEG arousals in sleep bruxers and healthy controls. Clin Oral Investig. 2013 May 9. [Epub ahead of print]

(Signature line appended, April 2018)

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. 

May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

(Updated, December 11, 2017)

May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

“You can’t change what you don’t acknowledge”

~ Dr Phil McGraw

Raising awareness is instrumental for research funding, improved treatments, and patient outcome.  How many times have we wished there were answers?

Is it purely coincidence that some of the NEI, rheumatic/arthritic and autoimmune disorders/diseases overlap? That is the $100,000 question.  Let’s make May the month of home runs for all neuro-endocrine-immune, arthritic and autoimmune disorders by recognizing all of them, coming together as one community. It is possible that when we find the cause of one, we find the master key to many.

WHAT IS NEI?

What is a neuro-endocrine-immune disorder/disease (NEI/NEID)? It is an umbrella term that takes in several invisible or orphan disorders. These disorders are thought to be affected by the neurological, endocrine, and/or immune system.  Conditions that are frequently thought of as NEI disorders are: myalgic encephalomyelitis/chronic fatigue syndrome (Now known as ME/CFS), fibromyalgia syndrome (FM), Gulf War Syndrome (GWS), multiple chemical sensitivity (MCS), and chronic Lyme’s Disease . 

AWARENESS

May is also awareness month for all autoimmune disorders that can, in many cases do, co-occur with  NEI disorders, a double whammy and a two-fold opportunity for advocacy.  Autoimmune disorders to be considered for this particular blog (though there are many) include: 

Hashimoto’s thyroiditis,   rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), scleroderma, and ankylosing spondylitis (AS). 

Note: Multiple sclerosis is recognized in March, Sjögren’s and Spondylitis is April, and other conditions not listed here that fall under the same umbrella. 

Rheumatic conditions for May awareness:  

• Fibromyalgia (here) 
• Ehler’s Danlos Syndrome (EDS) (here)
• Osteoporosis (OP)
• Osteoarthritis (OA) (here)
• Rheumatoid arthritis (RA) (here)  
• Systemic lupus erythematosus (SLE) (here)  
• Ankylosing spondylitis (AS) (here)  
• Gout  

Though allergy is not classified as an NEI, autoimmune or rheumatic condition, it often overlaps with several of the disorders above. May is allergy awareness month.

ADVOCATE

“Snowflakes are one of nature’s most fragile things, 

but just look what they can do when they stick together.”

~Vista M. Kelly

Raising awareness requires participation by patients.  We have a duty to help others understand how any one of these disorders affects our lives. As an advocate, I am never certain where or how my words will be heard, but I can assure you, they reach further than I ever thought possible.  I personally understand we can’t be all things to all people, and we must make difficult decisions when it comes to prioritizing, but when possible please find an organization that has helped you. Your support can make a difference for all of us. Here are a couple of links on how to advocate (click on the title):

• Advocate (here)
• Sample Advocacy Letter (here)

A few organizations you can support (Recognizing those that have been instrumental in supporting my advocacy work).

• National Fibromyalgia and Chronic Pain Association (here)
• Missouri Regional Arthritis Centers (here)
• The American Academy of Integrative Pain Management (here)
• Pain Alliance to Implement a National Strategy (here)
• The U.S. Pain Foundation (here)
• International Pain Foundation (here)

There are a plethora of organizations that are at your fingertips, make May the month you do a little something extra, even if it is learning a bit more about your illness. Self awareness is the first step. 

Standing together, standing strong, committed to making a difference.

 In healing,,Celeste

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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

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

Is your butterfly dead: your thyroid and you?

January is thyroid awareness month and I have added an article on my website titled:

 

 Is Your Butterfly Dead: Your Thyroid and You (click the title)

I hope you will stop by and find out things like:

• What is the thyroid?
• Weird but true
• Hypothyroidism
• Hyperthyroidism
• Diseases involving the thyroid
• Thyroid resistance
• Blood tests
• Other tests
• Treatment

You can leave your comments here. I look forward to hearing from you.

In healing and hope, Celeste

KaleidoPain News Sept 30, 2012

"To lose patience is to lose the battle."

 - Mahatma Gandhi

*Tips for writing your own affirmations www.thesethree.com/Key_to_Affirmations.html

*Tips on journaling www.thesethree.com/Journaling.html

CELESTE’s BLOGSPEAK

Raising the roof on the article, “Fibromyalgia Patients Self-Medicating With Cannabis May Have Poor Mental Health Outcomes.” 
http://fmcfstriggerpoints.blogspot.com/2012/09/raising-roof-on-article-fibromyalgia.html#.UFtI1I1lTVI

Intimacy and Fibro: The nuts and bolts of the pelvic floor
http://fmcfstriggerpoints.blogspot.com/2012/09/intimacy-and-fibro-nuts-and-bolts-of.html
at Sharecare http://www.sharecare.com/user/celeste-cooper/blog/post/fc4f4e68-6b98-4e55-95ac-37357b130980

KaleidoPain News 9-11-12
http://fmcfstriggerpoints.blogspot.com/2012/09/kaleidopain-news-9-11-2012_11.html

Demanding body, cellular strength, LGS:  Are we what we eat?
http://fmcfstriggerpoints.blogspot.com/2012/09/demanding-body-cellular-strength-lgs.html

*Who Should Be Prescribing Our Pills?
http://fmcfstriggerpoints.blogspot.com/2012/09/who-should-be-prescribing-your-meds.html
On Sharecare http://www.sharecare.com/user/celeste-cooper/blog/post/006dd176-a756-40e1-8983-e8f9c2369f0f

*See past blog links at httpss://thesethree.com/Featured_Blog_Links.html
FEATURED BLOGS

Relieving Pain in America: How you can help to improve care. by nfmcpa
http://www.blogtalkradio.com/nfmcpa/2011/12/09/relieving-pain-in-america-how-you-can-help-to-improve-care?utm_source=BTRemail&utm_medium=ShowReminder

Occupy CFS, Will FDA Step Up?
 http://www.occupycfs.com/2012/09/13/will-fda-step-up/


HEALTHY HABITS

Six ways to use your mind for healing
http://www.elephantjournal.com/2012/08/six-ways-to-use-your-mind-for-healing/?utm_source=All&utm_campaign=Daily+Moment+of+Awake+in+the+Inbox+of+Your+Mind&utm_medium=email

Tight Jean Syndrome
Wearing tight clothes can compress a sensory nerve called the lateral femoral cutaneous nerve that runs from the abdomen through the thigh. The compression can cause numbness, tingling, and a burning pain in the legs above the knees, a condition called "meralgia paresthetica," also known as "tingling thigh syndrome" and now sometimes termed "tight jean syndrome." http://www.drweil.com/drw/u/TIP04494/Tight-Jean-Syndrome.html


FEATURING Q&A by Celeste at Sharecare
*Follow all answers by Celeste at  www.sharecare.com/user/celeste-cooper/answers

Who should I tell about my fibromyalgia?
http://www.sharecare.com/question/who-should-tell-about-fibromyalgia

Can my diet affect my fibromyalgia?
http://www.sharecare.com/question/can-diet-affect-fibromyalgia

How is dizziness in fibromyalgia treated?
http://www.sharecare.com/question/how-dizziness-fibromyalgia-treated

What qualifies a psychologist to treat my fibromyalgia?
http://www.sharecare.com/question/what-qualifies-neurologist-treat-fibromyalgia

ANNOUNCEMENTS
A note for everyone dealing with chronic pain.  Please know that many are working hard to realize, collaborate, and facilitate the Institute of Medicine (IOM) “Perspectives on Pain.”  The Patient Action Alliance to Implement a National Strategy (*PAINS) has established the mission, “To help Americans who struggle with pain have access to integrative pain care consistent with their goals and values."  I am happy to be affiliated with this group and make contributions as requested. See my note, https://www.facebook.com/notes/integrative-therapies-for-fibromyalgia/the-pains-action-alliance-to-implement-a-national-strategy-pains/525869224095152
For Grace’s Women in Pain,  ***An archive of the complete 2012 Women In Pain webcast will be available October 1st!  Please join us then to re-live the magic of our 5th Annual Women In Pain Conference!*** http://www.forgrace.org/women/in/pain/C265/
Women in Pain.

IN THE NEWS
Not on Twitter?  Follow my tweets on the bottom of the welcome page at http://TheseThree.com

Major changes needed to end inadequate pain management for millions, say Stanford authors of IOM study by Krista Conger.  Phillips Pizzo, Chair-IOM, Advancing Pain Research, Care, and Education; Dean Stanford University School of Medicine.
http://med.stanford.edu/ism/2011/june/pain.html

Chronic Fatigue Syndrome Not Linked to Suspect Viruses; Study Puts to Rest Notion That XMRV or pMLV Cause the Mysterious Ailment
http://www.sciencedaily.com/releases/2012/09/120918083907.htm
CII Press Conference: Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.  W. Ian Lipkin, MD (Moderator)
http://cii.yewda.com/Blog.aspx?LOfRcb

NEWS FOR YOU from Celeste

Don’t miss the Sept/Oct edition of the National Fibromyalgia and Chronic Pain Life, a journal for all patients in pain.  Featured, “Relieving Pain in America.”  An organization dedicated to doing just that. The online journal is at no cost, just click on the magazine icon at the bottom of the page.
http://fmcpaware.org/

What is a “Pain Activist?”
https://www.thesethree.com/Pain_Activist.html

How to Cope With Unsolicited Advice When You Have an Invisible Chronic Illnesshttp://invisibleillnessweek.com/2010/08/24/how-to-cope-with-unsolicited-advice-when-you-have-an-invisible-chronic-illness/

*Follow other “NEWS FOR YOU”  at www.TheseThree.com

ROLFING THE RESEARCH
September’s Research Updates with comments https://thesethree.com/Research_Sept__2012.html


BOOK REVIEW

How to Be Sick by Toni Bernhard
I earmarked too many pages to share all of them in this review, so I will share two that will forever be affirmations to me, finding joy in the joy of others, and implementing loving-kindness that I often give others, but seldom reserve for myself.  This book offers a personal journey and provides true enlightenment for those of us who cope with chronic illness.
--Celeste Cooper, RN, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection, and FM expert at Sharecare.com  www.thesethree.com


ABOUT THE BOOKS 
www.thesethree.com/About_the_Books_WPCN.html


COMMENT CORNER
5.0 out of 5 stars Very information and helpful!, July 8, 2012
By TruthSeeker - See all my reviews
This review is from: Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (Paperback)
Book is presented as a textbook and is easy to read with helpful explanations, definitions and exercises. Very informative on a variety of related syndromes/illnesses. My problem, Chronic Fatigue Syndrome, is seriously misunderstood and misdiagnosed. Those of us who have it need verification and support, not to be dismissed as just crazy/lazy. Will share this book with many others.

POINT TO PONDER    (Sneak Peek from our soon to be released, Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain, a series beginning with “Fall Devotions”)

How can I balance my teeter totter?

*This virtual newsletter is for informational purpose only and is not meant as medical advice.
Have the KaleidoPain News delivered right to your Inbox by subscribing to the RSS feed.
The KaleidoPain newsletter is for you, join in and submit one of your inspiring moments or book review's. Make a contribution and share with others. To submit contributions put "inspiring moment" or "book review" in the subject line and email to Celeste@TheseThree.com

Demanding body, cellular strength, LGS: Are we what we eat?

The old saying “We are what we eat,” still holds true, but the benefit versus consequences ratio is much lower than it once was. 

Our bodies rely on food for cellular and brain metabolism.  Leaky gut syndrome (LGS), has been strongly linked to autoimmune disorders.  Autoimmune disorders, where the body’s immune system manufactures antibodies against its own tissue, are on the rise, almost at epidemic levels.

Some autoimmune disorders known to cluster with fibromyalgia and/or chronic fatigue syndrome (CFS/ME) include rheumatoid arthritis, ankylosing spondylitis, Lupus (SLE), Sjögren’s, thyroiditis, Raynaud’s disease, autoimmune dysautonomia, interstitial cystitis, chronic Lyme disease, Reflex Sympathetic Dystrophy, and possibly others depending on the individual. 

Leaky Gut Syndrome ©

The purposes of the bowel are to break down food into nutrients and eliminate waste or unwanted products. Leaky gut syndrome (LGS) causes body-wide symptoms because of holes in the intestinal barrier. Due to this breakdown, the bowel does not function normally and does not filter out some harmful substances, such as bacteria, toxic waste products, food additives, infectious agents, and inflammatory substances. These irritants initiate an immune response, causing inflammation. With this disruption to normal bowel function, the immune system leaves the gut open to infections and yeast overgrowth, causing not only gastrointestinal symptoms like bloating, gas, diarrhea, and abdominal pain, but other feelings of ill health......

Book excerpt (Cooper and Miller, 2010)

So how do we minimize the chance of developing Leaky Gut or treat it?

There are specific tests to confirm LGS so discuss your symptoms with your doctor.  Take precautions by eliminating known irritants to the bowel, including certain foods, (Gluten if you are known to be intolerant or have Celiac disease), medications such as NSAIDs (Non-steroidal anti-inflammatories (when possible), and alcohol. 

According to Sharecare health expert Dr. Leo Galland, http://www.sharecare.com/question/how-manage-leaky-gut-syndrome , we should adopt an anti-inflammatory dietary pattern. The principles are simple to understand:

• Avoid foods with added sugar and refined starches made from white flour.
• Decrease consumption of saturated fat and most vegetable oils, using extra-virgin olive oil instead. Eat at least 9 servings of fruits and vegetables a day.
• Eat at least 4 servings of fish per week.

He also says there are dietary supplements that help the small intestine heal and restore its functional integrity, which are readily available in health food stores. The most important of these are:

• Amino acid L-glutamine and
• Amino sugar N-acetyl-glucosamine

It is difficult to find preservative free foods these days, and even fresh vegetables can be toxic because of pesticides.  (see 9 foods likely to have pesticides at http://www.doctorshealthpress.com/food-and-nutrition-articles/the-nine-foods-most-contaminated-by-pesticides. )  There are consequences for everyone, but especially to those of us who already have a dampened or dysfunctional immune or endocrine system.  Many of the chemicals used to preserve our food, artificial flavoring and color are toxic. When in doubt, eat fresh, preferably organic.  Not everyone can afford organic, so here is a link on how to clean vegetables and fruit.  http://suite101.com/article/how-to-wash-pesticides-off-fruit-vegetables-a174074

Today the industry is big business because we need to feed the massive amount of people in the world today.  For this reason we must advocate for the food industry to find or revert to safer methods of preserving our food.  In a world where so many have nothing to eat, it is a bitter sweet reality.

Deirdre Rawlings, ND, and PhD in nutrition asked me to write a contributing chapter to her E book, Fibromyalgia Insider Secrets: 10 Top Experts.  She is extremely educated in these matters and she reports on the plethora of information regarding nutrition and why we should be more concerned about eating healthy to fight the rise in autoimmune disorders.

This blog can also be found at Sharecare, http://www.sharecare.com/user/celeste-cooper/blogs

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.  www.thesethree.com

KaleidoPain NEWS: Ever Changing Colors of Chronicity 8-25-12

Have the KaleidoPain News delivered right to your Inbox by subscribing to the RSS feed.

The KaleidoPain newsletter is for you, join in and submit one of your inspiring moments or book review's.  Make a contribution and share with others. To submit contributions put "inspiring moment" or "book review" in the subject line and email to Celeste@TheseThree.com

BALANCING THE TEETER TOTTER OF CHRONIC PAIN:

A Dose of Nature, My Marriage and Pain ©

Pain interferes with my marriage, it’s so.
I know that it will, if I don’t let go.
My marriage falls prey to struggles of pain.
The life raft is nature, says the rain.

Twenty minutes a day the experts say
So I will take my mate with me today.
Harmony the example of all that live here,
The squirrels, the leaves, flowers and deer.

Any marriage needs to feel the swift breeze,
To be nourished by nature just as the trees.
If my marriage learns to crave these things,
Worries take a backseat, even my pain.

So carry on nature, keep up the good work,
We are glad to learn from your great book.
In nature I’m able to endure pain’s course,
All of God’s creatures abhor a divorce.

This is why nature is a good place to rest,
If only a short while, it brings out the best.
Be steadfast with nature, harmony abides,
If WE take a few minutes to go outside.

Celeste Cooper,  August 18, 2012

*Tips for writing poetry in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN and Jeff Miller, PhD
*Tips for writing your own affirmations http://thesethree.com/Key_to_Affirmations.html
*Tips on journaling https://thesethree.com/Journaling.html

BLOGSPEAK BY CELESTE

A comprehensive review on the proposed and modified American College of Rheumatogy diagnostics for fibromyalgia.


What the heck is a syndrome, and are the syndromes; fibromyalgia, chronic fatigue and myofascial pain different?

HEALTHY HABITS

Do vitamins really work with Dr Andrew Weil.
http://www.drweil.com/drw/u/TIP04474/Do-Vitamins-Really-Work.html

Nutritional expert Deirdre Rawlings speaks up on How to overcome America’s most overlooked disease. In healing, harmony and hope,  Celeste Cooper contributing author to her EBook series, Fibromyalgia Insider Secrets: 10 Top Experts
http://articles.healthrealizations.com/FoodsForFibromyalgia/2012/05/21/How-to-Overcome-Americas-Most-Overlooked-Disease.aspx

Developing Healthy Habits, Southwest Wrap
http://www.youtube.com/watch?v=ZdIWlUeJcb4&feature=youtu.be

FEATURING Q and A by Celeste at Sharecare

What can I do to improve my fibromyalgia?
http://www.sharecare.com/question/what-can-do-improve-fibromyalgia

What criteria must I meet to be diagnosed with fibromyalgia?
http://www.sharecare.com/question/criteria-meet-diagnosed-with-fibromyalgia

How is my fibromyalgia affecting my thinking?
http://www.sharecare.com/topic/fibromyalgia-mental-effects

*Follow all answers by Celeste at  http://www.sharecare.com/user/celeste-cooper/answers

INSPIRING MOMENTS: Giving forward momentum a shove

Grieving Loss In Order To Heal

For most of us, only for a brief moment, you tell of your grief. We shed our tears for a while and then began our day. For me, its not only about where I am today, but about how long I've been here. Unlike some illness, when we speak of ours, it’s in terms of years not days or weeks. We all suffer at its hands, the loss of things undone, lives not lived, events missed and the days yet to come. 

Then there's the times when an event in our lives brings up painful memories, some taking us back to the time that we first got sick. We then feel as if we're right back there, in the thick of that early pain. It can be overpowering and scary, leaving us in a state of grief. We don't have to dwell on this grief, yet we must see it, feel it, and release it, each time it comes to the surface. Otherwise, it comes back the next time with reinforcements. Ignoring it doesn't cause it to go away. It only encourages it somehow.

My hope for us would be that through all of the grieving, we'll forgive ourselves for being in this place, not of our own making. In order to move forward, we must grieve our loss or we may find ourselves stuck within the walls of our illness. So grieve, cry, release and live the best life you can, for each day. Knowing, you're not alone in your brand of sorrow. We walk this path together, in order that the journey may be a bit lighter. Healing cannot begin until we let go.

Submitted by Clarissa Shepard at Fellow Travelers (Facebook)

IN THE NEWS

Chronic pain could be causing cognitive deficit.  NIH featured research by the NFMCPA.
http://www.fmcpaware.org/nih-mackey

Mysterious illness links teenage girls along S.A.'s I-10 corridor. KENS5.com News, San Antonio
http://www.kens5.com/news/ito-151467795.html

'Female' gene may be to blame for making women more prone to migraines
http://www.newkerala.com/news/newsplus/worldnews-33272.html

FEATURED ARTICLE

Augusts’ featured article is on Ankylosing Spondylitis (AS). Learn more and about its association with FM at  https://www.thesethree.com/Ankylosing_Spondylitis.html

The Dark Side of Pain: Serious Challenges We ALL Face
http://thepainjournal.wordpress.com/2012/08/23/dark-side-of-pain/#comment-90

ROLFING THE RESEARCH

July/August Research (some with comments) under Monthly Features just posted.
https://thesethree.com/Featured_Research.html

*See complete resource list from TheseThree categorized by condition and therapies 
https://thesethree.com/Resources_3379.html

BOOK REVIEW

The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, Second Edition [Paperback]by Clair Davies(Author), Amber Davies (Author), David G. Simons (Author)

Myofascial pain syndrome is a common comorbid condition to fibromyalgia. This book has timeless information and superb diagramming of myofascial trigger points, their specific pain and symptoms patterns as defined by Drs. Travell and Simons.  Treating peripheral myofascial trigger points is paramount in improving muscle function and minimizing input and amplification of pain found in fibromyalgia. As a patient, RN, author and fibromyalgia expert at Sharecare, I found this book to be particularly helpful and well illustrated, something that isn’t always easy to find.  It is a must for your massage therapist, physical therapist or any bodyworker who wants to understand how myofascial trigger points can affect the body.
Celeste Cooper, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.  (co-author, Jeff Miller, PhD) and fibromyalgia expert at Sharecare.

SNEAK PEEK (Cooper and Miller, Healing Arts Press: Vermont, 2010, available here  http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238/ref=sr_1_1?ie=UTF8&s=books&qid=1267467759&sr=8-1

“The ADA and the EEOC” ©

Many people with chronic pain disorders, such as FM, CFID, and CMP, attempt to remain in the workforce in spite of their pain. What statistics do not show is how many of us do not utilize available resources, in part because we are unaware of what protections exist. (Excerpt, Chapter Seven)
Helpful Links https://www.thesethree.com/Helpful_Links_WXOJ.html#Legalities_and_Red_Tape

*You can review “about the book”  including the Table of Contents of Integrative Therapies…at  About the Books http://thesethree.com/About_the_Books_WPCN.html

NEWS for YOU!

Johns Hopkins Health Alerts takes a look at: ARTHRITIS: Knee Pain: An Early Warning Sign of Osteoarthritis

Osteoarthritis is the most common form of arthritis, affecting an estimated 27 million people in the United States. By age 40, approximately 90 percent of us have at least some signs of osteoarthritis continue reading.
http://www.johnshopkinshealthalerts.com/alerts/arthritis/Knee-Pain-Early-Warning-of-Osteoarthritis_6254-1.html?ET=johnshopkins:e87942:208366a:&st=email&s=W1R_120728_001

COMMENT CORNER

Christina Tina Bonafede I refer to her book [Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain] as my new health bible. I love it, it is so enlightening.

POINT TO PONDER   

Do I plan outings when I’m able?

*Additional Help Links at TheseThree.com http://thesethree.com/Helpful_Links_WXOJ.html
“When we empower ourselves with knowledge, not even one iota of what learn
the hard way can take it away.  Hold on tight, it's going to be quite a ride.”

All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.  http://www.thesethree.com