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

Books:
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 

Advocacy: 
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: http://CelesteCooper.com

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.  
Resources:

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.


Sunday, June 22, 2014

The Harsh Reality of Migraine and Myofascial Trigger Points and Restless Leg Syndrome by Celeste Cooper



One thing of certainly is the uncertainly regarding migraine. Despite the fact that over 30 million Americans live with migraine, we don’t know what causes them. Because migraines originate within the central nervous system, they can be a great factor in decreasing our pain threshold making every nerve ending is fresh, raw and exposed. In this article we will discuss an often overlooked, yet harsh, reality to migraine: myofascial trigger points, and restless leg syndrome

*Warning. If it is a new symptom for you, have it checked out immediately as sudden onset, unusual headache can be an indication of an impending stroke.

The Myofascia and Migraine

It’s difficult to say which came first, the cart or the horse, but suffice it to say, if you have been a migraineur for most of your life, the aging process may contribute to your migraine. What was once a primary migraine, can become a secondary headache or migraine, or both!

As we age, or as an early disease process, our neck bones can develop arthritis and the discs between them can degenerate. For the migraineur, this can be a huge aggravating factor and can precipitate a migraine attack. You know it is a migraine because it has all the same hallmark symptoms. The difference is that the usual abortive medications (if they work for you) only work temporarily. In these instances, it is most important to know if you have myofascial trigger points, and if you do, it is important to address them. Degenerative neck disease can affect the muscles supporting the neck and head. 
From Summer Devotions 

If you have experienced a muscle that feels like a golf ball at the base of your skull, or if you find tiny strings of muscle fiber around your temple area (on the same side of your migraine), you have myofascial involvement. Neck and upper body muscles that are tight as banjo strings or hard as rocks that have pea sized knots that you can feel if the muscles isn't too tight can also contribute to, and/or sustain, your migraine. If you have neck disease, TMJ, or grind your teeth, you are at greater risk of developing these knots known as myofascial trigger points.




Migraine and restless leg syndrome (RLS)

Rest Leg Syndrome

Did you know different researchers have made a connection between migraine and restless leg syndrome?

This is not a new finding, but it is significant to note that research in this area continues. In a case-control study done by Fernández-Matarrubia, et. al, it was found that “RLS patients had higher lifetime prevalence of migraine than non-RLS controls, and active migraine without aura was significantly more prevalent in patients with RLS than in controls… Within the RLS group, patients with migraine had poorer sleep quality than those without migraine.”  Another study done in Italy by Zanigni, et al suggests “shared pathogenic pathway which would implicate new management strategies of these two disorders.”

So, why is this important? As discussed in our book, restless leg syndrome (and it’s cohort periodic limb movement during sleep) not only has a central nervous system component, it can also be affected by myofascial trigger points.

There Is Hope

According to the American Headache Society, there is a medication showing promise. “Developed by Alder Biopharmaceuticals, the drug is currently known by its experimental name: ALD403. It works on a small protein in the body thought to play an integral role in migraine headaches. The study involved patients with a history of 5-14 migraine days per month. They received a single dose of the new medicine by intravenous injection.”

Approved by the FDA is a new devise called Cefaly, a transcutaneous electrical nerve stimulation (TENS) unit. Because trigeminal nerve may be involved in migraine, this device may be helpful. It is available in the U.S. by prescription only. Keep in mind, “The proof is in the pudding” and just like medication, cautious optimism is prudent.

If you suspect there is a myofascial component to your headaches, seek the help of a specially trained myofascial therapist, chiropractor, physical therapist  or pain specialist that understands myofascial trigger points and the pain patterns specifically related to migraine. If you also have RLS, talk to your doctor about a sleep study. There are options. Education is power, so take up arms against the harsh realities of migraine.


Conclusion

Disrupted sleep can contribute to both migraine and restless leg syndrome. Periodic limb movement during sleep makes sleep quality insufficient. So if you have migraine and RLS, expect, or suggest that you have a sleep study. Treating RLS and sleep could help. It’s worth a try. As migraineurs, we have no problem reaching for answers. I know I have been through enough trials, and after attending the American Headache and Migraine Association (AHMA) conference in Scottsdale, AZ last year, I know one thing, not all neurologists understand migraine or all available treatments. I am still searching for a headache specialist, and if you don’t have one, I suggest the same for you.

You can read about my personal story with migraines in my blog “My story as a migraineur by Celeste Cooper,” here.

Other blogs on migraine

Migraine Awareness – An exercise that might help when all else fails and some recent research, here.
Scream “4,”Cervicogenic Migraine and Myofascial Trigger points: June Awareness, here.
About migraine from my website by Celeste Cooper, RN, here.
Understanding Migraine and the Role of Myofascial Trigger Points, here.
Neck Pain, Migraines, and Myofascial Trigger Points, here.

Resources:

Ashkenazi A, Blumenfeld A, Napchan U, Narouze S, Grosberg B, Nett R, DePalma T, Rosenthal B, Tepper S, Lipton RB. Peripheral nerve blocks and trigger point injections in headache management - a systematic review and suggestions for future research. Headache. 2010 Jun;50(6):943-52. Epub 2010 May 7.
Bodes-Pardo G, Pecos-Martin D, Gallego-Izquierdo T et al. 2013. Manual treatment for cervicogenic headache and active trigger point in the sternocleidomastoid muscle: A pilot randomized clinical trial. J Manipulative Physiol Ther. [July 8 Epub ahead of print]. 

Boyer N, Dallel R, Artola A et al. General trigeminospinal central sensitization and impaired descending pain inhibitory controls contribute to migraine progression. Pain. 2014. [Mar 12 Epub ahead of print.] 

Fernández-Matarrubia M, Cuadrado ML, Sánchez-Barros CM, Martínez-Orozco FJ, Fernández-Pérez C, Villalibre I, Ramírez-Nicolás B, Porta-Etessam J. Prevalence of Migraine in Patients With Restless Legs Syndrome: A Case-Control Study. Headache. 2014 May 20. doi: 10.1111/head.12382. [Epub ahead of print]

Pinto Fiamengui LM, Freitas de Carvalho JJ, Cunha CO et al. 2013. The influence of myofascial temporomandibular disorder pain on the pressure pain threshold of women during a migraine attack. J Orofac Pain. 27(4):343-349.
Thomas K, Shankar H. 2013. Targeting myofascial taut bands by ultrasound. Curr Pain Headache Rep. 17(7):349.

Watson DH, Drummond PD. Cervical Referral of Head Pain in Migraineurs: Effects on the Nociceptive Blink Reflex. Headache, 2014

Zanigni S1, Giannini GMelotti RPattaro CProvini FCevoli SFacheris MFCortelli PPramstaller PP. Association between restless legs syndrome and migraine: a population-based study. Eur J Neurol. 2014 May 20. doi: 10.1111/ene.12462. [Epub ahead of print]


(Signature line appended, March 2018)

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.


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

Monday, June 16, 2014

Countdown Book Promotion - Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SUMMER DEVOTIONS, Revised 2014.


The "Kindle Discount Countdown" for Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain SUMMER DEVOTIONS runs for one week.



It works like this:

                                    % Discount
1            June 17, 2014 at 8:00 AM (PST)        48h      $0.99  (84% Discount)
2            June 19, 2014 at 8:00 AM (PST)        48h      $1.99  (67% Discount)
3            June 21, 2014 at 8:00 AM (PST)        48h      $2.99  (51% Discount)
End        June 23, 2014 at 8:00 AM (PST)                    Original list price $5.99         

It is available in the US here 
It is available in the UK here 


~ • ~ • ~ • ~ • ~ • ~

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

Books:
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 



Saturday, June 14, 2014

My story as a migraineur Updated 2016 by Celeste Cooper


Updated June, 2016



I have suffered with migraines for fifty years. I always lived with the hope that my migraines would ease with age as did my paternal grandmother, but quite the contrary has happened. They have become more frequent and now I have not only classic migraine, I also have cervicogenic migraine. You can read more on the chronic migraine, migraine with aura, occipital neuralgia, and some weird type of migraine that is only treatable with lidocaine up my nose.

My life has consisted of unpredictable severe and incapacitating pain, vomiting until breaking all the blood vessels in my face, accompanied by irritable bowel attacks as my body revolts against the enemy within. My blood pressure has dropped out of sight, literally. 


I have always needed accommodations. I was the kid embarrassed by having to raise my hand to go to the nurse's office, stopping by the bathroom to vomit then laying on the cot waiting until I could get home, hoping I didn't lose my lunch or my bowels on the bus. I was the young adult who had to retreat to a dark room while in college and miss classes that I should not miss. I remember my first REAL job as a young adult and working with a very kind woman, who always made sure I had a dark place to go.

No difference came with age other than the advent of Imitrex, which has made my life more bearable, though it does not work as well as it once did. I have been made to feel that I created this problem. I have lived long enough to be judged as a neurotic middle aged woman who couldn't deal with life, and I have lived knowing the statistics of having a stroke as I age into later life, because I am a migraineur.

My brain has felt ready to explode, I have prayed for a hot poker to relieve the pressure behind my right eye. If you are a migraineur reading this, you know exactly the other things I have prayed for too. I know what transitioning is. I have lost my vision; have prodromal (early symptoms) of eye lid dropping and my right eye crossing. Sometimes after vomiting, it will move to the left, that is when I know my nightmare will soon lessen. I have tried every drug known to man to prevent them; nothing works. 


I have been poked and prodded, promised miracle injections that didn't work. I have had Botox(T)  in my neck, which rendered me in so much pain I cried every day until it wore off, that was several months. (I will clarify that the Botox was to treat my cervical degeneration, not the migraine protocol.)

Yes, I have lived the migraine life. There is no other pain like it, and I have plenty of other pain conditions to boot. We all know that even after an attack leaves, we do not feel like tripping through a field of flowers as pharmaceutical ads imply—If only. We have come a long way in understanding them, but we have miles to go before we sleep.

Help change the world. Raise awareness for migraine treatment and prevention. Join a group like the AHMA, follow AmericanHeadache Society. Even if you don't have them often, you know you never want them again.

My first blog of the month is here

~ • ~ • ~ • ~ • ~ • ~

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

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.  

Thursday, June 12, 2014

Sneak Peek – Revised edition of Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SUMMER DEVOTIONS


Inside the Cover:

“Broken Body – Wounded Spirit is a movable feast of poetry, reflections, coping strategies, educational tidbits, enchanting imagery, and more. For anyone in persistent pain holding a desire to restore physical, mental, emotional, and spiritual balance, Celeste and Jeff offer help, hope, and a path to self-empowerment.” Myra J. Christopher, Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics, and Principal Investigator of the Pain Action Alliance to Implement a NationalStrategy.


Summer 
Day One

The Power of Summer
               
Today is the day to begin our summer growth, a time to mature into a different way of thinking about how we can use and improve on what we learned from the Spring Devotions in this series. As we embrace the summer season and feel the warmth of the sun, we learn to rise up in the face of summer power and empowerment despite our personal adversities. The benefits of the season are bountiful...

Spending 20 minutes in the sun can:
  • Boost vitamin D levels (having many health benefits).
  • Provide an opportunity to get up and get going.
  • Improve our mood...
and more.


Things we can do while we are enjoying the outdoors: 
  • Appreciate the detail of a flower by looking at it closely with a camera or magnifying glass.
  • Smell new mown grass and feel it under our feet.
  • Spend time visiting with a friend...

 and more.


What are some other things I could add to these lists?





About the Book 
Review the Table of Contents 
What others have to say, Inside the Cover 

Available:

Amazon (Also available in Kindle)
Barnes and Noble 
Amazon UK
Amazon Canada 


Celeste's Website

Celeste's Website
Click on the picture