Friday, August 29, 2014

A Call to Arms: Pain, Politics, and Witchery by Celeste Cooper

September is almost here, and with it comes thoughts of autumn. For some of us it means tree pollen, increased migraines, fantastic thunderstorms that are magnificent to behold, but is accompanied by barometric pressure changes that can wreak havoc. Soon we will experience weather that chills us to the bone. For those of us with arthritis we expect an upsurge in joint pain, and for others exposure will aggravate Raynaud’s symptoms, and more. But as with everything in life, the autumn season holds crisp clean smelling air, a respite from the oppression of the summer heat, and the promise of September, the month of in between.

Most exciting for advocates is that September is the month of Chronic Pain Awareness. In honor of this, I am choosing to share one of my poems. I want to give September an early kick off, like preseason football. During September, I will present a blog on the newest criteria for diagnosing fibromyalgia and a three part series based on a guest column I am preparing for the Kansas City Nursing News, written with patients in mind.

So here is my poem. Feel free to share A Call to Arms: Pain, Politics, and Witchery, but please include my signature line and a link to this blog to avoid any copyright infringements.

A Call to Arms: Pain, Politics, and Witchery

One hundred million people with untreated pain,
Exploited by those for their own personal gain.
Political agendas, skewed reporting, all morally wrong.
Treatments denied, no peer review, but patients be strong.

Trust, communication, values the human approach,
Are executive healthcare decisions above reproach?
Media firestorms to make headlines cause harm;
Agendas void of human welfare is cause for alarm.

So ask, “Who gains most from their hidden agenda?”
Protection of innocent should be the addenda.
Pain has no schedule, yet patients endure blame,
Let’s demand transparency, hold the moth to the flame.

If you are reading this poem, it won’t strike you funny,
That all these and more are about pain for the money.
Beware; they ride their broom like a witch in the night.
Employ your integrity; show them all, how it’s done right.

We are raped of our dignity, oppressed by others.
There’s a moral imperative, hold accountable our brothers.
Things won’t transform in the blink of an eye,
But certain—nothing happens—if we don’t try.

Pick up paper, your pen, ring your voice loud, and clear.
Friends ban together for the rights we endear.
Senators, execs, media—exit our exam room,

Employ human agendas or ride away on your broom.

You can read more about my advocacy on my website under the tab “For Pain in Pain.”

Writing poetry has allowed me to find things about myself that I never knew existed. I have only been able to dig that deep through this form of self-expression. It is raw, it is enlightening, it is liberating, and it is real, at least to me. Every book of the five books we (my co-author Jeff Miller, PhD and me) have published includes how to use poetry as a tool for coping, and each book gives tips on how to write various types of poems. I am not a poet by profession, only a patient that found a way to learn more about myself through the words.

If you are interested in taking this journey, find “Creating an I AM Poem,” here

 In healing and hope for changing the way pain is perceived, judged, and treated. 

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"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN

Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Fibromyalgia expert on Sharecare, here

Participant in the Pain Acition Alliance to Implement a National Strategy, here.

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

Sunday, August 24, 2014

Is sleep keeping you awake at night? Poor sleep in people with fibromyalgia and chronic fatigue syndrome by Celeste Cooper

Dysfunctional sleep—something those of us with FM and CFS know only too well—no surprise—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 body’s immune response. Though sleep dysfunction can be part of any chronic pain condition, its effects are prevalent in fibromyalgia (FM), and chronic fatigue syndrome (CFS). Both disorders affect multiple body systems and have particular overlapping conditions of bruxism, severe headaches, and periodic limb movement, which are present or affected by sleep. Whether it is from sleep apnea, narcolepsy, insomnia, or disordered patterns, sleep disorders have a profound effect on our symptoms and  affect our daytime quality of life.

Researchers have been looking at sleep function in FM and ME/CFS disorders for decades. A subgroup of fibromyalgia patients also have restless leg syndrome (RLS). When RLS occurs during sleep, it is called periodic limb movement (PLM). Those of us who experience this phenomenon, PLM, are unaware until we are told by our bed partner or the disarray of our bed linens. It’s no wonder we don’t feel rested when we have been running a marathon all night. In these cases, and in the case of suspected sleep apnea or other issues mentioned previously, a sleep study is order to determine if there is something interfering with sleep that can be treated.

Poor sleep not only affects our mood, it also affects our body. When we don’t feel rested, we are less likely to move very far away from our recliner. But, not only do we need to move to help fibromyalgia muscle symptoms, we also need to move to improve the circulation of lymph. The lymph system, unlike blood vessels, relies solely on physical movement to catch cellular debris, waste and toxins in the filters, called nodes, and move it out of the body via the lymph system. If it is not functioning reliably, peripheral swelling occurs and our general health is affected.

Because both FM and CFS are thought to affect the nervous and immune systems and/or vice versa, it is important to address sleep issues so we can minimize other symptoms.. (See my last blog, Exercise and Fibro.)

Helpful strategies and aggravating comorbid or co-existing conditions are covered in IntegrativeTherapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: TheMind-Body Connection.

Celeste’s other blogs related to sleep:

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Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate
New Website
Celeste’s Website:

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. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

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

Civelek GM, Ciftkaya PO, Karatas M. Evaluation of restless legs syndrome in fibromyalgia syndrome: An analysis of quality of sleep and life. J Back Musculoskelet Rehabil. 2014 May 27. [Epub ahead of print]

Drake CL1, Vargas I, Roth T, Friedman NP.Quantitative Measures of Nocturnal Insomnia Symptoms Predict Greater Deficits Across Multiple Daytime Impairment Domains. Behav Sleep Med. 2014 Mar 11. [Epub ahead of print]

Ablin JN, Clauw DJ, Lyden AK, Ambrose K, Williams DA, Gracely RH, Glass JM. Effects of sleep restriction and exercise deprivation on somatic symptoms and mood in healthy adults. Clin Exp Rheumatol. 2013 Nov-Dec;31(6 Suppl 79):S53-9. Epub 2013 Nov 15.

Kishi A, Togo F, Cook DB, Klapholz M, Yamamoto Y, Rapoport DM, Natelson BH.The effects of exercise on dynamic sleep morphology in healthy controls and patients with chronic fatigue syndrome. Physiol Rep. 2013 Nov;1(6):e00152. doi: 10.1002/phy2.152. Epub 2013 Nov 13.

Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome.  Pain Res Treat. 2012;2012:427869. Epub 2011 Sep 29.

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]

McBeth J, Lacey RJ, Wilkie R. Predictors of new-onset widespread pain in older adults: Results from a population-based prospective cohort study in the UK. Arthritis Rheumatol. 2014.  66(3):757-767.

Prados G, Miró E, Martínez MP, Sánchez AI, López S, Sáez G. Fibromyalgia: gender differences and sleep-disordered breathing. Clin Exp Rheumatol. 2013 Nov-Dec;31(6 Suppl 79):S102-10. Epub 2013 Dec 2.

Sivertsen B, Lallukka T, Salo P et al.  Insomnia as a risk factor for ill health: results from the large population-based prospective HUNT Study in Norway. J Sleep Res. 2013. [Oct 30 Epub ahead of print.]

Wednesday, August 20, 2014

Exercise and Fibro by Celeste Cooper

Because we are all unique individuals with varying comorbid or co-existing conditions, you will want to experiment with different types of what I like to call “movement therapies.” For instance, a person with lung disease will not have the same abilities as someone who is able to swim and jog without an increase in their
symptoms. A fibromyalgia patient who also has myofascial pain syndrome will want to make sure their myofascial trigger points are being successfully treated before exercising a shortened and weakened muscle. 

Exercise that keeps your muscles from wasting and keeps them from becoming stiff is the one that will help you most. Try not to become so afraid of pain that you stop moving all together, because research tells us a static or sedentary lifestyle is not good for the FM patient, and non movement can contribute to pain not to mention add other health complications.  If you have other physical limitations, try rocking in a rocking chair. If you have difficulty with balance or you have severe joint disease, you may want to try Yoga that incorporates the use of bolsters. T’ai Chi is also a good movement therapy because it requires focus and slow movement. If you choose to swim, do so in a warm water pool to avoid putting your muscles under any undue stress. Aerobic exercise is important too unless you fall into a subgroup of fibromyalgia patients that has heart rate and blood pressure drops, in which case the autonomic nervous system isn’t working quite right and aerobic exercise could be harmful. In other words, let your body be your guide.
"Keep a “Movement Report Card”

As with all things fibro, our bodies don’t respond normally, so soreness may not occur until several days later. A mild increase in muscle tenderness will occur in anyone so don’t let this stop you. However, if you find the tenderness is extraordinary, back off, change your movements, or rest for a few days before beginning again. Check your records to see if there is anything in particular you added that might be causing more problems. This might include a new yoga position or an increase in your time walking. Always be respectful of any other conditions you have in addition to fibromyalgia, and unless your doctor tells you otherwise, drink plenty of water.

Hobbies that require physical movement, such as gardening or chasing butterflies around with a camera are good movement therapies too. Use caution, and control movements so you don’t put undue stress on the same muscle groups, your spine, or your joints. Hobbies that require you to move and get outside not only helps physically, it helps us spiritually too. 

“Musical ideas sprang to my mind like a flight of butterflies, 
and all I had to do was to stretch out my hand to catch them.”
~Charles Gounod

Don’t forget to stretch. You don’t have to go overboard, be gentle with yourself. You might try incorporating a stretch while in the shower and then use your towel as an exercise tool while drying off. Put frequently used items at a level where it will provide a mild stretch to reach them. When up an about in the house, try bending over and touching your toes several times a day. Speaking from experience, come back up slowly so you don’t topple over. When you are not in a flare, try parking further away when you are on an outing. Try walking backwards from time to time, supposedly, it burns more calories and exercises the mind. Unrealized exercise works the same as a movement routine.

Always start low and go slow.

Use as much of your battery as possible without completely draining it.  If you expend all your energy in one day, it can set you back several. Whatever you choose, do it wisely and document your symptoms and tolerance. Always start low and go slow. Your best choice is a type of movement that you like to do.

You can read more about many different types of exercise, therapies, and precautions in 

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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 author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

Celeste's Website

Celeste's Website
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