Friday, August 30, 2013

BOOK LAUNCH - Free offer - Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain (Fall Devotions, revised) by Celeste Cooper and Jeff Miller

“Excellently produced, in short chapters, ideal for anyone suffering Chronic Pain to use. Uplifting quotations, thoughts. Well-formed and helpful diary-form record of pain and relief, ideal for presenting to Pain Management Personnel. Positively and emphatically written, with the sufferer in mind. Highly recommend.”  

Read more reviews on the Fall Devotions of the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series on Amazon here

Being forced to look at life through a peep hole is petrifying, and that is exactly what chronic pain and illness does. It isolates, dominates and threatens the things all human beings hold dear. They are bullies with a ravenous appetite for creating mayhem in one’s life.

Anguishing physical and emotional pain is often overlooked. After all, “the person doesn’t look sick.” From the outside pain isn’t visible, but from the inside, it is an unwanted intruder to the person experienced it. It is a thief of goals and dreams, finances and social life. Finding balance and avoiding isolation when struggling with chronic pain is difficult. This book bursts from its’ bindings as a metaphoric tool to help the reader break free from pain’s shackles. The authors expose their readers to infinite possibilities of viewing life through a door open to a landscape of honor and hope, by using their expertise as RN, educator, and counseling psychologist, the authors guide their readers through the physical and mental chaos.
It is rare to find a book that offers encouragement, practical advice, comfort and aesthetic appeal all at the same time. Fall Devotions of Broken Body, Wounded Spirit, like the rest in the series, offers all this – and more. 

In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

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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. 

Wednesday, August 28, 2013

Coming Clean on a Dirty Secret, Irritable Bowel Syndrome by Celeste Cooper

Why a dirty secret?

If you are reading this and you have IBS, you know why IBS is a dirty secret. Irritable bowel syndrome can be an unwanted and frequent visitor to migraine, fibromyalgia, chronic fatigue syndrome, TMJ, chronicpelvic pain, menstruation, or even panic disorder. We are about to get to know each other up close and personal, very personal.

The effects of having an irritable bowel (spastic colon) are things we don’t want to talk about. Those of us with it know there is a great deal more to it than pain, abdominal cramping, gas, and water loss diarrhea. We can be awakened from a dead sleep, spend hours (literally) sitting on a toilet, or we can simply be riding in a car when out of the blue, our bowels move faster than the speed of light, severely limiting the necessary amount of time for our intestines to extract nutrients. Then as the attack intensifies, an explosion occurs with the force of an atomic bomb, or so it seems to us.

What should be staying in the small bowel to help with digestion makes it way out of our body causing our surrounding area to become inundated with gases that would have animals scurrying for cover. Yes, that is where the foul odor, and I mean foul, comes from. It comes from the small intestine, which is rich with important enzymes to aid in digestion. It is NOT supposed to leave the area. but in IBS, it does. Next comes the after effects.

Digestive enzymes extract nutrients for cellular strength, and our electrolytes, which are necessary for maintaining physical balance in the body are gone too. All the friendly stuff that keeps us out of harm’s way is suddenly in the wrong place at the wrong time. We are without sleep, disrupted from a normal life, drained (quite literally), and embarrassed. We are robbed of healing capabilities, and our social life is affected.  

Coming clean

Accidents are embarrassing and are probably our best kept secret. After all, who wants to talk about losing control of your bowels in a public place? For those without IBS, they would only think that is accidently having a normally formed stool in their underwear that can be dumped in a toilet, evidence thrown in the trash, and no one knows. For those of us with severe IBS, it is much different. I won’t go into extreme details, but I think the first part of this blog pretty much spells, and smells, out what it would be like to be in a public place when this happens. I think most people would be embarrassed to have to tell a friend or relative driving somewhere that you must stop at the gas station on the corner NOW!

Those of us with irritable bowel syndrome have learned to accommodate the unwanted nature of such an important body part. We always know where the bathroom is when we enter any building.  I carry a coffee can and roll of toilet paper in my car and have for years. I have used that coffee can many times, but other than my husband, no one knew until now, not even my co-workers, not even my doctor. After all, who would really want to hear such a story?

I suppose I should have been this graphic with my doctors, because they really don’t seem to understand the implications of this “functional” bowel disorder. It’s not a disease so it can’t be that bad, right? WRONG!

So, to all my fellow IBS friends, when you tell me you have irritable bowel syndrome, I know exactly what that means. After two recent embarrassing episodes, and many years down the road, with symptoms now exacerbated by diverticulosis, I decided it was time to come clean on this dirty little secret.  

You can read more on IBS and things you can do that might help on my website at the link here

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

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) She is a fibromyalgia expert for Dr. Oz, et al., at, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website,

Sunday, August 18, 2013

Social Security Disability: Mastering the Red Tape When You have Invisible Illness

Scales of Justice

SSDI and Their Expert Witness

Make sure you doctor is documenting what you say in your medical record. Don't assume anything.

What the SSA wants to see is how illness affects your ability to function and with objective measurable criteria.

  • What is your cognitive-neuro score? This is a grueling all day tests that measures your cognitive deficit and is administered by a credentialed forensic specialist psychologist.
  • How does altered sleep interfere with your ability to copy with everyday things?
  • How long does it take you to prepare for work?
  • What is your life like at work?
  • Is your work willing to make accommodations?
  • Have you had to make adjustments to your work schedule in order to cope with the pain and fatigue?
  • What is your work record like, are you unable to make it many days, and if so, why?

Excerpt from Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain. Read more here.

The ALJ may request expert testimony from medical and vocational experts. These “experts” may or may not have firsthand knowledge of [FM, CFID, myofascial pain, systemic Lupus, RSD/CRPS, Lyme’s disease, GWS, or other invisible illness.]  In my experience, finding a doctor who is aware of these conditions was difficult, so you can well imagine the knowledge base of the ALJ’s “expert witness.” The laws protect the claimant to some extent in that the ALJ must give more weight to the opinion of the claimant’s treating doctor than to the opinion resulting from a one-time medical exam requested by SSA or their team. However, the judge’s expert witnesses have more impact on the ALJ’s decision when the claimant’s physician has not adequately addressed and documented key issues in the claimant’s medical record. This is why it is so important to make sure your medical records reflect the continuing disabling effect of chronic pain.


Getting Turned Down—What Next? Book excerpt  from “Approaching the System Systematically”

Your denial letter will most likely suggest you do some specific type of simple, sedentary work. The SSA gets their suggestions from the Dictionary of Occupational Titles and their suggestion may have little or no relevance to your claim. If you disagree with the decision, you can request a review, called an “appeal.” There are certain guidelines for filing the appeal, so be sure to verify information with the Social Security Administration.

Here  is a link you might find helpful.

IF YOU ARE IN APPEAL, you need a good attorney. I hear over and over again from people who lose at this stage, they are not happy with their legal representation. Your attorney needs to understand what your illness is, the repercussions, other issues, and how they all come together to affect your ability to function. Educate them.

How do you make it through a day? How many hours to you have to care for the unpredictability of it all. Day by day, moment by moment we are held hostage by our symptoms.

Explain this in a daily diary; buy a calendar at the $1 store and document symptoms, treatments, medications, and whether or not they work. Photo it and get it into your medical record and give a copy to your attorney. Let them see, make them see, what it is to walk a day in your shoes.

Even though you may have a SSA qualified illness, your application for SSDI benefits can turned down. They based their decision not on your diagnosis but on your ability to function, or more sadly, the lack of documentation.

If you have brainfog, get that neurocognitive exam.

My doctors saw me holding on to work by my fingernails. I did not go down easily. I cut my hours, changed gears, until I had to face the grim reality. The majority of us have stumbled down this road, quite literally. The SSA does take stock in what your personal doctors have to say. Make sure they say it.

If you lose at this level, don't give up! Remember, get your documentation in order, and consider hiring another attorney if yours is unfamiliar with our illnesses. Most work on commission and their fee is capped.

There is an entire section in the book devoted to SSA filing, documentation, what to expect, etc. The book has many documentation tools throughout to help you explain your condition and needs, painting a picture for your physician to help in his assessment. Using the forms will also get the information in your medical record. Make sure you physician puts the help sheets in your record where it belongs. It will help him/her save time and validate to the powers that be, why the treatments and medications are given, etc., and explain what it is like to be in your body.

When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, 
and set sail once more toward your coveted goal."
--Napoleon Hill

 Final Tips:

  • Always be truthful
  • Document everything, even your conversations with SSA (you won't remember, but they will)
  • Explain what it is like on your worst day (I recommend having someone help you fill out the paper work during these periods, as most likely you will not be able to. It is human to dismiss how bad things are on a bad day when you are having a good one. This is what your life is like, explain it in no uncertain terms, it is difficult for those who do not experience our pain and fatigue to know what it is like).

Other links you might find helpful:

From my website - When pain and disability is life limiting. The Seven Rules, here.

Social Security Application

SSA Listing of Impairments (Blue Book)

SSA Listing of Impairments Part A

SSA Listing of Impairments Part B (Childhood)

Fibromyalgia Residual Function Questionnaire

You can find the book at all major retailers. There is a synopsis on the book and links for purchase.  though it was written with specific patients in mind, 80% of the material can apply to anyone living with invisible illness.  In healing and hope, Celeste

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

Thursday, August 8, 2013

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


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!

~ • ~ • ~ • ~ • ~ • ~

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. 

Thursday, August 1, 2013

Blood Tests for Fibromyalgia: Is it purely by accident or could researchers be on to something?

Could it be researchers are on to a new way of thinking, completely moving away from any hypothesis that fibromyalgia is a “polysymptomatic syndrome” as suggested by some doctors?  Are researchers on to something big for fibromyalgia patients?

In less than six months, we have two studies reporting on successful analysis of fibromyalgia using blood markers, which is a realm way beyond more than a debate.  If there is anything that makes a researcher excited, it is making a breakthrough. It is a win for the scientific community and a win for the patient. Expect more research, because the race is on and oh what a glorious race it will be for those of us who live with FM every single day.

Is it more than coincidence? Following are excerpts from the two studies. You decide.

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
The cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM.

Hackshaw KV, Rodriguez-Saona L, Plans M, Bell LN, Buffington CA. A bloodspot-based diagnostic test for fibromyalgia syndrome and related disorders. Analyst. 2013 Apr 17. [Epub ahead of print]
 “Metabolomic analysis revealed that RA and OA groups were metabolically similar, whereas biochemical differences were identified in the FM that were quite distinctive from those found in the other two groups. Both IRMS and metabolomic analysis identified changes in tryptophan catabolism pathway that differentiated patients with FM from those with RA or OA.”

Side note: See the recent National Pain Report article and Pat Anson’s interview with Dr. Bruce Willis here


Having a reliable blood marker will do more than validate us as patients; it will open a field of dreams and possibilities for researchers compassionate about defining this horrible disorder.  Once we have a biological test, we will know that study participants do indeed have fibromyalgia. There will be no skewed results, and the talk of psychological illness will be in our review mirror.  This is a savory thought.

Bon appetite!

Celeste's Website

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