How Aware Are We? Fibromyalgia And Aggravating Conditions

Courtesy Celeste’s Photography©

Many things can make our fibro symptoms worse.  So, we should ask ourselves, “What am I doing, or not doing, that adds to my misery?” “How can I identify and manage perpetuating or aggravating factors?”

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This blog post, Fibromyalgia Awareness And Aggravating Conditions, originally appeared May 5, 2016 on ProHealth. With ProHealth’s permission, I am sharing it in its entirety here on The Pained Ink Slayer.

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May is Fibromyalgia Awareness Month. And what a month it is! In many parts of the US, spring rains of April have brought an environment exploding with color and texture as saplings emerge, promising hope and feelings of rebirth.

All these things make May a wonderful month to raise awareness for fibromyalgia. We will see many campaigns across social media platforms, and we should all contribute in some way, if only to share it with someone else.  However, we should also remember, as the month begins to warm, other things need our attention.

As the season beacons us outdoors, our activity increases, as it should.  We will experience the reality of spring storms and, if we aren’t paying close attention, weather changes that can affect us. We may, and probably do, have overlapping or co-existing conditions that put us on red alert, but we must pay attention because while our emotional well-being often improves by getting outside, not all conditions bode well with sudden surges in physical activity.

Three reasons for us to remain aware:

1.     When our spirits are high, we tend to ignore warning signs of an impending problem.

2.     Managing all conditions, not just fibromyalgia, is necessary.

3.     Awareness of symptoms improves the likelihood that we get the right treatment for the right problem.

According to the American College of Rheumatology, having other rheumatic conditions increases the risk of developing fibromyalgia. Dr. Robert Bennett has suggested to me that fibromyalgia is usually accompanied by another painful disorder as outlined in the Alternative Criteria for diagnosing fibromyalgia of which he is lead investigator.

While some of the following may not be directly related to FM, they should be considered as aggravating conditions if you have been diagnosed.

Aggravating and Possible Overlapping Conditions

·        AIDS/HIV infection

·        Allergy

·        Autonomic nervous system problems (neurally mediated hypotension, loss of heart rate variability)

·        Complex regional pain syndrome (CRPS) or RSD

·        ME/CFS or Gulf War syndrome

·        Headaches, severe

·        Hypometabolism – adrenal insufficiency, insulin resistance, reactive hypoglycemia, hypoglycemia, hypothyroidism, thyroid resistance

·        Infection – candidiasis (yeast), viral, or bacterial

·        Inner ear dysfunction

·        Irritable bowel syndrome or leaky gut syndrome

·        Mouth problems associated with fibromyalgia (dry mouth, teeth grinding, TMJ)

·        Multiple chemical sensitivity

·        Musculoskeletal problems – myofascial pain syndrome, piriformis syndrome or sciatica, plantar fasciitis, carpal or tarsal tunnel syndrome, tendonitis

·        Neurological disorders – costochondritis, degenerative spine and/or disc disease,

·        Multiple sclerosis, neuralgia (nerve pain), peripheral neuropathy, thoracic outlet syndrome, restless leg syndrome

·        Psychological distress – anxiety and/or depression, post-traumatic stress disorder (PTSD), seasonal affective disorder (SAD)

·        Urological problems – vulvodynia, impotence in men, chronic pelvic pain, irritable bladder, endometriosis

·        Raynaud’s phenomenon or disease

·        Rheumatic disorders – ankylosing spondylitis, bursitis,  hypermobility syndrome or EDS, polymyalgia rheumatic, post-polio syndrome, osteoarthritis, rheumatoid arthritis (RA), Sjogren’s syndrome, systemic lupus erythematosus

·        Sleep disorder

Other Aggravating Factors

·        Poor posture

·        Repetitive movement

·        Structural deformity, scoliosis, lordosis, kyphosis (one foot shorter than the other)

·        Overdoing and paradoxically under-doing – a really big one to consider as we emerge from hibernation

·        Disorganization and poor time management skills

·        Brainfog

·        Cold intolerance

·        Poorly identifying problems with medication and therapy

·        Ignoring diet

·        Thinking your symptoms will wait

While we may not be able to change overlapping or co-existing conditions, we can manage them better. After all, it is human to have room for improvement –  everyone does. And, be sure to report any new or escalating symptoms to your physician, as the treatment for other conditions are not the same as those for fibromyalgia.

We can do things to minimize the effects of a flare, such as taking it easy, avoiding known stressors, eating healthy, practicing mindfulness, moving, and identifying any important factors to avoid in the future.

I’m not going to vacuum ’til Sears makes one you can ride on.

~ Roseanne Barr ~

If you benefited from this information or have questions, please leave them in the comments below. I love learning from you.

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. 

A Fall Lesson on Mindfulness

If I Could See Further - Celeste's Photography

Neuroscience can't tell us why, but it does tell us that our brain changes when we use cognitive and meditative therapies. This is especially important for those of us who experience chronic pain, because "chronic background noise" surfaces to our conscious mind when it reaches a point of saturation. At that point it screams out for attention. But, that’s the wonderful thing about our mind. If we stay alert and recognize background noise before it reaches the point of maximum saturation, we can bust through harmful thoughts using intentional mindful awareness.

“Mindful awareness expands my being

and encourages me to live consciously, without judgment.”

~Celeste Cooper

Broken Body, Wounded Spirit:

Balancing the See-Saw of Chronic Pain

Fall Devotions

Our pain is not the villain here; it is the result of a bad actor invading our body. It doesn’t want to exist anymore than we want to experience it. So, being hard on it isn’t helpful, it won’t make it go away, and it won’t make us feel better.

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by Celeste Cooper, RN and Jeff Miller, PhD

Think of a bright fall day, briskness on the edge of arriving, leaves a colorful artist’s pallet, and migrant birds are flying overhead in the backdrop of a crisp blue sky. These are examples of being mindful. All we have to do is be present and aware in the moment admonishing our role as critic.

How is being mindful important to me today?

Excerpt Fall Devotions, Day 10
Available on Amazon and all major outlets.

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Being mindful of our pain without judgment redirects our thoughts to create an environment that is appreciated fully.​  

To unleash victory, I must have an open mind and willing heart,

judge not, embrace change, and be a steadfast observer of self.

Additional Reading:

Pained Ink Slayer Series: Mindfulness and Chronic Pain

Getting Physical with Our Body Talk 

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. 

Migraine and Me: If you could see me now #MHAM2018 challenge

Migraine is the 3rd most prevalent

and 7th most disabling disease in the world.

(MigraineDisease.com)

As I reported in my blog 12 Months and 14 Fibro Musings from The Pained Ink Slayer, the spring and fall seasons are two difficult times of the year for me. I live with chronic migraine all year long, but barometric pressure changes and tree and grass allergens can lead to a status migrainus attack, a migraine lasting for more than 72 hours straight. In May, a very busy month for fibromyalgia advocates, I experienced an episode lasting 14 days that required a steroid blast to stop it. And, I can't remember doing a fibromyalgia awareness interview without a migraine.

THE SHADOW OF MIGRAINE

”Hiding my migraines on the set may have been my toughest challenge as an actor. There were times when the pain from migraine headaches was so severe that I literally had to crawl across my dressing room floor. But I couldn't let anyone know. If they thought I might slow production, I figured that would end my career.”
~Morgan Fairchild

If you live with migraine, you know exactly what this is like. As a high school student, I spend many a day lying on a cot in the nursing office. As a young adult, I remember retreating to the bathroom to vomit and escape the overhead lights of the office where I was a switchboard operator, fearing every second that I would lose my job over something I could not control. I remember the look my mother's face when she came to pick me up to take me to the emergency room, where my condition called for stat IV's and lab work to check my clotting factors. Unbeknownst to me all the tiny blood vessels in my face had ruptured (my head had been over the toilet for the better part of a day). I barely had a blood pressure.  

Unless you have migraine disease, you simply cannot understand what that means. It is so much more than a bad headache. It will cause sane people to do crazy things. I can tear sheets with my teeth, rock back and forth on my hands and knees, and cry out in pain with the guttural sounds of an injured animal, sounds that even I do not recognize. I have pressed so hard on my eye sockets that it leaves bruises. I slur works like a drunk, speak in sentences that make no sense, and experience complete personality breakdown.

THE STIGMA

Despite all the evidence that migraine is real, and that it is a neurobiological disease of the brain, we still feel the stigma of migraine. I wish I could say we didn’t need migraine awareness campaigns, but we do. Few understand what we have learned in the last ten years and we need to change that.

Read more about the research and the common denominators of those of us who live with both migraine and fibromyalgia in an article I wrote for ProHealth, Fibro Playmate of the Month–The Migraine Connection.  

Life isn’t easy living with migraine, but when I share my story, I am able to emerge from the shadow of migraine. I hope you will too. #MHAM2018

Find out how YOU can get involved. JOIN THECHALLENGE at MigraineDisease.com where you will find all you need to raise awareness and stop the stigma of migraine.

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. 

Prejudice against Women Living with Chronic Pain

September is chronic pain awareness month and a perfect time to recognize that when it comes to chronic pain, women are treated differently than men.

by Jen Jasper
from  Broken Body, Wounded Spirit:
Balancing the See-Saw of Chronic Pain
Winter Devotions

Discrimination

There is a centuries old bias against women. Societal beliefs and recriminations have blamed women for their pain, calling us “hysterical.” Today—not much has changed. Our pain remains misunderstood, mistreated, undertreated, and sometimes untreated all together — simply because we are women. The gender gap between men and women is more like a chasm. 

If you are interested learning more about what I have to say, please read Women, Pain, Bias, and Discrimination.

Women’s Experience with Chronic Pain

Do Women Experience Chronic Pain Differently? The answer is yes.

A review of over 450 epidemiologic studies clearly demonstrates women are at a significantly greater risk for developing chronic pain. As females we have a cornucopia of possible chronic pain generators, some dominate in women and others are specific to our gender. Disorders and diseases that cause pain range from pelvic pain, irritable bowel syndrome, arthritis, to menstruation, female related surgeries, child bearing, etc. Hormonal differences and genetics also influence our pain. We tend to be more sensitive to pain—not the same as tolerance—and the character of our pain can be different because of the source, such as childbirth. And, the words we use to describe our pain also play a role in the way our pain is judged.

There’s no doubt our pain experience and the way we relate to it is different from our male counterparts.

 “Our health care provider’s words matter too. We should feel safe when communicating our concerns and symptoms and never judged for having a medical condition that has no cure. Our provider should be part of our team, part of our plan, not part of the problem. When we feel heard, we do better.”  

[Excerpt] Chronic Pain, Women, and Words

Trust

In my blog, The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD (pain specialist, author, and producer), I wrote about something Dr. Webster said at a PAINS symposium. It resonated with me and I will likely never forget it. He said he always asked his patients, “What do you want [from pain care]? The answer was always the same, “Doc, I just want my life back.” He heard this same response repeatedly. Dr. Webster witnessed a primal release of emotions from his patients when he replied…

“I believe you.”

Trust is important to every chronic pain patient, particularly those groups who have been identified as being treated with bias. It's not just women who suffer the consequences of disbelief, judgment, and discrimination. We all need to be heard and for our care provides to believe what we say. If our provider is disinterested, they are not to be trusted. Trust, like communication takes two.

Conclusion

I think our understanding of pain experiences between men and women has a long way to go, as does our understanding of chronic pain in general. However, when we look at the influence gender has on chronic pain, we can say — women experience and report pain differently. 

Women are more likely to be wrongly diagnosed, and possibly told to take an antidepressant for their unspoken “hysteria”. Some of us are told to go home and rest until it passes, or we feel unheard and dismissed like a student sent to detention for misbehaving.

Despite the IOM report, Relieving Pain in America telling us there is bias and discrimination against women, and the National Pain Strategy telling us stigma and vulnerability exists, particularly in women exhibiting pain from conditions like chronic fatigue syndrome and fibromyalgia — we wait for change.

If you have suffered as a result, you might find the Guidelines for Pain Warriors on my website helpful.

Additional Reading: Two interviews this past year with two brave women:

Lacy Fowler

Patti Young

In healing,,Celeste

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

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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.  

Images from the Heart: Unfettering Chronic Pain by Celeste Cooper

Treasures come in many forms and can mean different things to different people. When we discover our treasure—a lost picture, a rare doll, a long sought after coin, or a rock—it brings a twinkle to our eye and provides a calm blanket to our soul. Ahhhh, there it is.

[Excerpt] Cooper, C and Miller, J. Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions edition, One Man’s Junk Is another Man’s Treasure.

A Treasure in Time

 “What we see depends mainly on what we look for.”

~John Lubbock, author of The Pleasures of Life

Unchained and reclaimed—photography speaks

Each day in the Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain  series Spring — Summer — Fall — Winter offers a photograph meant to inspire new ways for managing the daily challenges we face. So, it’s only befitting to encourage you to do this exercise.

·        Find a favorite photo and name it. You may not remember all the events surrounding the picture, but you will capture how it made you feel.

·        Write a few words about it or assign a favorite quote that reflects your sentiments.

·        Share it on social media or keep it in a personal journal.

In the world of chronic pain and chronic illness, losing our ability to choose is often the tallest hurdle we face. This choice is entirely ours; we should embrace it.  

Metered, measured, and meaningful, light allows me to capture my feelings in the moment. Finding the right settings is a metaphor to finding the balance I need to move forward each day.

In healing,,Celeste

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

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Celeste Cooper, RN

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

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

Hiding in the Shadow of Migraine

"Hiding my migraines on the set may have been my toughest challenge as an actor. There were times when the pain from migraine headaches was so severe that I literally had to crawl across my dressing room floor. But I couldn't let anyone know. If they thought I might slow production, I figured that would end my career."

~Morgan Fairchild

"I can't tell you how many shows I've done with full-blown migraine headaches."

~Jonathan Taylor Thomas

"This is a soul under perpetual migraine attack."

~Richard Schickel

Despite all the evidence that migraine is a neurobiological disease, we still feel the stigma of migraine.

Having lived with migraine for 50 years, I have seen advances. Gone are the days of seeking emergency care to get a shot of a narcotic, so I could hopefully ride out the attack, but even that resulted in a miserable narcotic hangover headache. It's a sad commentary, when misery is the better scenario. Unless you have migraine disease, you simply cannot understand what that means. It is so much more than a bad headache. It will cause sane people to do crazy things.

"I didn't feel physically sick. But mentally. My mind was twisting in so many ways. (...) We once saw a documentary on migraines. One of the men interviewed used to fall on his knees and bang his head against the floor, over and over during attacks. This diverted the pain from deep inside his brain, where he couldn't reach it, to a pain outside that he had control over." 

― Jay Asher

A few years ago, while on respite in the Rockies, I suffered a horrible attack. I awoke at 4 a.m. (What I have come to term migraine reveille). Nothing helped and I spent that night in unbelievable pain, vomiting and having diarrhea. None of the tools in my kit worked. It was refractory.

As with nearly all my migraines, my right eyelid was drooping, and my right eye was crossed. My entire scalp was numb and tender, so I couldn’t hold my hair to keep it out of the way. On the second morning, I knew I needed help. So my husband contacted the ranger and we made our way to urgent care in a nearby town. It was a pain filled and anxious journey, because I had to leave the security of my commode.

On arrival, despite looking ragged, rugged, and severely ill and having symptoms that could suggest I was having a stroke—I heard the comments. “This one SAYS she has a migraine”. It wasn’t until after I told them I needed an Imitrex injection and supportive care that they established eye contact. That’s when I was wheeled to a gurney. My blood pressure was through the roof despite severe dehydration (and a lifetime of combating low blood pressure). I was decompensating, my body’s fight or flight response was in full gear, I knew it, and they knew it. Now they were yelling for the doctor as they put me on a cardiac monitor. Urgent care began; IVs with electrolytes were started; I got my Imitrex(R) injection and something IV for vomiting. I also got a muscle relaxant, because cervical neck disease, myofascial painsyndrome, and occipital neuralgia are among some of my triggers. All effects of a refractory migraine need to be considered to break the cycle. When my symptoms improved, and my vital signs stabilized, I had something to say.

Having been a board certified emergency RN; I knew their judgmental attitude was inappropriate, and as a past legal nurse consultant, I can say, their behavior was neglectful. I said some of the following at the time, some I included in my letter to the administrator, but I think you will get the gist. I told them:

·        It’s important to understand migraine.

·        Establish eye contact with your patient.

·        Take a good history and do a physical exam, including neuro checks.

·        Sick people seek drugs too, and you should be compassionate when you hear the word migraine, not make judgmental statements.

·        I am acutely aware that addicts say they have migraine to get narcotics.

·        Not all migraineurs respond to abortive medications and patients look to you for treatment.

·        As urgent/emergent care providers, you should know what is in your arsenal to help the migraineur.

·        Because a migraineur asks for a narcotic, it does not mean they are an addict. It could mean a narcotic is the only thing they have been offered in the past, there could be a variety of other reasons, but you won’t know without that history.  

·        How you respond could mean the difference between helping and contributing to stress, including suicide. It has happened.

·        Even though I will not start the HIPPA complaint process, you violated my rights to privacy by discussing my case where others could hear.

In a teachable moment, I emerged from the shadows of migraine.

Many migraineurs live in the shadow of their disease, do you?

Learn how to get started, here. (Updated June 2018)

(Signature line appended June 2018)

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.