10 Fast Facts Fibromyalgia is Real

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

         

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

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

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

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

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

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

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

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

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

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

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

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

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

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

WE DO NOT NEED TO DEFEND OURSELVES FOR HAVING FIBROMYALGIA!

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

References:

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

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In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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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. 

Balancing Pain and Illness through Poetry

All Eyes to the Sun © Celeste’s Photography

"Poetry is writing about yourself waiting to see what will show up, the words are the finger points of your soul.”

~Sandford Lyne, author of Writing Poetry from the Inside Out

Maintaining forward momentum in the face of pain, fatigue, and unpredictable symptoms can be challenging. In our book Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS, we talk about inner expression through poetry and how it can help us cope with pain and fatigue. All our books have tips for writing for self-exploration. Poetry is one of those.

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APRIL IS POETRY AWARENESS MONTH

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Poetry is often thought of as the conduit to our soul. For me, writing poetry heightens my senses and provides an alternative path that promotes mindfulness. The words I chose give my thoughts texture, making them palpable, at least to me. Writing poetry provides a beautiful detour, because unlike physical pain and illness, there are no boundaries, no limitations. We have unabashed freedom to explore and express ourselves using colors, shapes, and concepts we might not otherwise. 

I am in awe of the power of randomly chosen words and their ability to bring me peace. Whether I am working through a difficult situation or embracing the wonders of the world, I know when I'm done, I am connected to an inner being I only know through poetry.

I wrote a blog on how to write “I am” poem, which you can use as a template to write your own.

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CREATING AN "I Am" POEM

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I love it when the words fly, coming together effortlessly, but that isn't always the case — at times — I have to put my words aside or work from a different angle. But that's why I love to do it.

I wrote this poem staring with four random words: truth, bird, broken, observe. It went through several transformations before I felt a deep meaning for myself. Some of my poems don't make a word of sense to others, but they don't need to. They are mine, just as your will be yours.

This Is My Truth © by Celeste Cooper

Like a bird with a broken wing,

I can stray off course, my flight pattern disrupted.

Wounded from the fall, I will not judge, because

As a wise owl, I observe, I accept, I understand—

Before I take flight, I need time to mend, plan a new course.

This is my truth.

Imperfection as clear as a broken mirror,

Though broken, goals are transformed.

Seedlings forced into maturity will not thrive.

Accepting that mistakes are the seed, I cultivate.

The broken mirror affords a self-reflection of reality.

This is my truth.

I falter, sometimes wretchedly, but enlightened.

Sweet is the nectar of success—not synonymous to perfection.

Erupting from deep inside a reminder from Edison,

"I did not fail; I found 10,000 ways that won't work."

I accept my imperfections—only then—can I take flight.

This is my truth.

I hope you will pick up a pencil and a piece of paper. Write down some of your favorite words, you can find them in crossword puzzles, a good book, the dictionary, or make them up; that's the beauty of it. Let your mind float and your hands glide across the paper as the words guide you to a new place, a place hopefully free of pain and illness, but if you need to work that out, you can go there too by observing until it dissipates in the background. Just do it.

Additional Reading: Minimizing the Consequences of Pain and Illness by Exploring Your Creative Nature through Poetry by Celeste Cooper

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”

~ • ~ • ~ • ~ • ~ • ~

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.

Fibromyalgia: Getting to the Bottom of Fatigue and Depression

Some physicians are uncomfortable with the new fibromyalgia diagnostic criteria and they do have genuine concerns.  See my blog, "Out with the Old in with the New."  There appears to be a lack of regard by some to connect symptoms of  conditions that overlap with fibromyalgia. This makes it even more important for us to know how to describe our symptoms.

Our physicians are charged with a great deal of responsibility when there isn't a biological marker. Biological evidence includes blood test, a particular rash pattern, or obvious joint deformity such as seen in AnkylosingSpondylitis, other arthritic conditions, and more conditions associated with fibromyalgia. Experts agree that depression can be secondary to any chronic pain or illness state.  However, patients with primary "major depression" can have many of the symptoms described by those of us with fibromyalgia.  This can make it difficult for physicians to make what we call a "differential diagnosis."  Proper diagnosis is key to finding the right treatments.

Inadequate or disrupted sleep disorder is a primary symptom of FM, causes fatigue and can contribute to depression. During the normal stages of sleep, we should heal. However, in FM those particular stages are often missing. Have you had a sleep study? Sometimes a good sleep specialist can help us. Non-restorative sleep is a primary symptom (fatigue) in both the new or the old diagnostic criteria, and fatigue is not a symptom exclusive to fibromyalgia.

It is important that a differential diagnosis between major depression and fibromyalgia is made because when the wrong diagnosis is made, inappropriate treatments can be rendered.  Delaying treatment for "major depression" can lead to suicide.  I cannot stress enough that this type of depression needs immediate care, it is NOT the same as situational depression associated with chronic pain and illness, and it is NOT the type of depression we experience from living with chronic pain.  Untreated or undertreated pain is also linked to suicide, but it is the pain, not depression, at fault here.

There is an entire chapter in our +400 page 8 1/2 x 11 inch book Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, andMyofascial Pain that is devoted to knowing your body, what information your doctor is seeking, and how to describe and log your symptoms, reactions to medications, and more. These tools will help you understand the differences in depression, fatigue, and symptoms that can mimic other conditions. Having this information can help your physician in making the right diagnosis.

Have you had emotional despair because of a particular situation? If so, you might consider talk therapy. It is still important to address our depression in order to provide healthy feedback to the brain. Neuroscience tells us there is a mind-body connection.

Have you been checked for a metabolic problem that can cause fatigue, muscle aches, and pain? A metabolic problem such as thyroid resistance or insulin resistance (specific testing, not routine, is discussed in Integrative Therapies....) hypothyroidism,  or adrenal problems can make FM symptoms worse, and some experts believe they have a connection to fibromyalgia.

Medications or medication interactions, fibromyalgia, ME/CFS, Lyme's disease, Lupus (SLE),  depression, metabolic disturbances and other overlapping conditions can cause fatigue and interfere with our quality of life. If your physician is not paying close attention to your complaints of fatigue, non-restorative sleep, and cognitive problems; if he/she does not know enough to do a sleep study or check for underlying metabolic problems, it might be time to move on. (See how to find the best care here). 

For men with FM, fibromyalgia is NOT female exclusive. One in seven patients are men. As men step forward, I suspect we will see changes in those statistics.  We know that FM symptoms in men, like heart attack, don't present the same way, and men are taught to suffer in silence or "buck up." Speak up, you could help millions of other men in your shoes. 

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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 Sharecare.com, 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, http://TheseThree.com

What the heck is a syndrome?

A syndrome is a collection of symptoms that remains the same throughout a particular patient group, but the cause is unknown. These might include fibromyalgia syndrome, chronic fatigue syndrome, Cushing’s syndrome, irritable bowel syndrome, AIDS, Asperser’s syndrome, Barrett’s syndrome, carpal tunnel syndrome, leaky gut syndrome,  paradoxical orthostatic tachycardia syndrome, Sjögren’s syndrome, Ehlers-Danlos Syndrome, urethral syndrome,  restless leg syndrome, Raynaud's syndrome, CREST Syndrome (a form of Scleroderma), complex regional pain syndrome, and many more. You may not realize it, but even rheumatoid arthritis is considered a syndrome. 

Some disorders are confusingly called diseases, when they are actually syndromes.  Diseases generally have a known cause. And syndromes, even when we know something about them are still syndromes. For instance, research shows there is an excessive release of acetylcholine at the neuromuscular (nerve to muscle) junction of a myofascial trigger point, but myofascial pain syndrome is still considered a syndrome. This is because we don’t know what causes the excessive release of acetylcholine, a neurotransmitter, the chemical messenger between the body and the brain.

When invisible disorders have no biological marker, a test that says you specifically have the disorder/syndrome, and sometimes when they do, there is always the doubting Thomas.  We think these folks mission in life is to prey on our psyche.  Why is this? Pretty much the answer is simple; they don’t experience our pain, lack of restorative sleep, life altering fatigue, severe chronic headache, a bladder that is constantly on fire, constantly cold extremities, or feel like everything they touch is barb wire, just to mention a few symptoms of invisible illnesses. Syndromes are not seen as real because some people operate on the assumption that if you can’t see it, it isn't so, even some healthcare providers migraines were once attributed to a woman’s frenzied inability to cope with stress.

Newer research into genetic markers will plow under the misconceptions of those who do not share our syndrome. In the mean time, it is up to us to support those who support the research.  Orphan disorders of all sorts face the same challenges.

In healing and hope, Celeste Cooper, RN author, patient, activist

All blogs, posts and answers are not meant to replace medical advice.  www.thesethree.com

Creating an "I Am" Poem

Writing poetry of any kind begins with a spark that ignites feelings, encouraging them to provide light and insight by using our senses, our thoughts, our dreams and our imagination. Poetry is the conduit to your inner self, the one we live with everyday, but otherwise wouldn’t take the time to explore. I encourage you to use your imagination to create characteristics of “Who I Am.”

As a template start and end each line of your poem stanza (paragraph of sorts) with your I am line, then follow with the verbs provided below. Imagine yourself in a particular place, a certain situation, a role, an achievement, an illness etc., build your words from there.

After you do a rough draft, you can go back and change the words to convey your thoughts and feelings. This is free style poetry so you are not limited in your creation. It is totally up to you, as poetry is very personal and self revealing.

I wish I could find the author of this template, so I could thank them, but most of all give them credit. I found it by goggling but no one claims the origin. If anyone happens to know the author of this template, please share.

Following the template is one of my poems as an example.

I am…….

I wonder….

I hear…..

I see…..

I want….

I am….

I am….

I pretend….

I feel….

I touch….

I worry….

I cry….

I am…..

I am…..

I understand….

I say….

I dream…..

I try….

I hope…..

I am…..

I Am Tired not Weary ©

I am tired not weary,

I wonder if you see my pain?

I hear the thumping in my body,

The tunnel beckoning me to the light.

I seek the peace it promises,

I am tired not weary.

I strive to ski the slopes of life,

I feel lifted up by whiteness,

touching the light with my tongue.

I worry it will not last,

I deny the thought of darkness,

I am tired not weary.

I understand I must endure,

I say acceptance is the first step,

Imagining others will understand.

I try to get my point across,

I seek knowledge in truth,

I am tired not weary.

You can read more about how to write poetry, journal and much more in Integrative Therapies for Fibromyalgia,Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.

(Signature line appended, March 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”