As most fibromyalgia patients know, there are no approved tests to diagnose this chronic pain condition. A new study has taken science a step forward in this direction. Researchers at the University of Colorado Boulder have identified a brain signature that is able to predict fibromyalgia with 93% accuracy. Functional MRI scans were used to compare brain activity in 37 fibromyalgia patients and 35 healthy controls as they were exposed to multiple sensory sensations (visual, auditory, and pressure). The study found three ‘neurological patterns’ common to 93% of the participants with fibromyalgia. Specifically, these brain responses “show characteristically enhanced unpleasantness to painful and non-painful sensations accompanied by altered neural responses” (Lopez-Sola, et al., 2016). As this was the first neuro-imaging study of the chronic pain condition, it provided further proof that fibromyalgia is a central nervous system disorder. Additional studies may help to determine if there are sub-types of the condition and individual variations, ultimately leading to more effective treatments.
I am a mother and I am a daughter. I am a father and I am a son. I was busy living my life, and one day I got sick. I went to the doctor and they ran test after test after test and could not figure out what was wrong with me.
I am a student and I am a teacher, I am a grandchild and I am a grandparent. Finally, they gave me a diagnosis of exclusion, something called Fibromyalgia, because their diagnostics are not sophisticated enough yet to source the true cause of the problem. They told me it is not terminal, but there are limited ways to treat the burning fire inside my muscles that debilitate me.
I am a sister and I am a brother, I am an aunt and I am an uncle. I experience extreme sleep disturbances, constant and pervasive pain, and cognitive impairment. It makes living life very difficult, for both me and those around me. The medications I have been given treat the symptoms, not the source, and have many side effects.
I am a cousin and I am a friend. I am a niece and I am a nephew. My dreams and goals and ambitions are very much alive and well, but my body will not cooperate! I am limited and dependent and very very frustrated.
I am a survivor and I am a fighter. I am NOT a hypochondriac, faker, dramatic, lazy, crazy, wimpy, a junkie, scamming the system or making this up. I am in pain and would give ANYTHING to have my life back the way it was before I got sick. But until medicine and science can figure out the cause and cure, I am working very hard to manage my life around this illness. Every day that I get up is a fight, a fight for myself, my family, my quality of life.
I am a person. I am a person who was walking around minding their own business and one day got sick. I am a person who still has plenty of life to live, love to give, and memories to make. I am a person not unlike you. I am a Fibromyalgia patient.
The Spanish study in the Journal of Clinical and Experimental Neuropsychology called “Cognitive complaints in women with fibromyalgia: Are they due to depression or to objective cognitive dysfunction?” recurited105 women with fibromyalgia for their analysis.
Fibromyalgia is characterized by widespread pain, cognitive dysfunction, sleep dysfunction and fatigue. However, the cognitive dysfunction of fibrofog with its concentration issues has not always been thought of to be from the FM. Studies have shown it is from the pain, from the sleep dysfunction and even from depression.
Eighty-four percent of the patients reported subjective cognitive complaints. Depression scores, everyday physical functioning, and working memory performance were most strongly associated with subjective cognitive complaints. These three variables were significant predictors for subjective cognitive complaints with a final model explaining 32% of the variance. Study
In conclusions “Cognitive complaints are very frequent in patients with fibromyalgia, and these are related to functional and cognitive impairment as well as to depressive symptoms.” Study
In other words, even if the patient has depression, all the cognitive issues are not related to it.
There are times with Fibromyalgia that I exceed my walking limits. It is actually difficult sometimes because the limit changes. It can be a short distance one day and a decent distance the next.
There was a time when I had to run all over campus to get professors to sign my thesis to get it processed. I ran around everywhere looking for everything. Too much. I was in immense pain. I would sit down for a break but it was difficult to get up from that break. I could only walk with a slow shuffling pace because I had gone so far beyond my limit. I got honked at crossing the street, going as fast as I literally could. Made me feel horrible. I get I looked healthy. But I sure wasn’t feeling like it then. I ended up having to get back to my department because I couldn’t handle more. One prof on my team had to help me out, something I had never asked for before-help. Glad he did, though. There was no way I was getting anywhere at all.
This has happened before. Many times actually. Once my spouse and I went to go see the fireworks a few blocks from our house was one time it was a short duration flare. Maybe a 20-minute walk. I made it there. But it was a lot of standing to watch the show. So on the way back, my pain increased exponentially and my pace slowed to a crawl. I think it embarrassed my spouse since we were getting a lot of looks. What is wrong with her? She looks fine? It was an agonizing, and long, walk home for me.
Then there was the time I spontaneously developed a foot problem. It is possible it was plantar fasciitis or something else but caused by FM I have no doubt. It hurt to lift my foot to walk. To press it down with weight. The tendon itself in the bottom of my foot hurt. So I shuffled little shuffling steps for more than a year. I think it lasted 2 years before it went away. Flares up when I wear sandals. Or shoes I shouldn’t. Got a lot of comments on that as well. I couldn’t really walk fast because every step hurt.
Fact is, pain with FM can make us more visible. But when it does it just garners attention. This sort of What is That About? Attention. Because they see no injury. They can’t tell what is wrong. They just look at you funny. Or think you are moving slow on purpose to get in their way or slow traffic.
We, on the other hand, are stuck. Literally stuck wherever we happen to be. With the sole purpose in our minds of a) find a place to stop and rest b) get home as soon as humanly possible. We know we will make it there by inches if we must but it will be painful. And we will ignore the looks. And focus on every single step. Step by step, towards that goal.
Stare all you want. Our mind is on the finish line or at least a bench somewhere where we can rest the pain a bit. I am pretty single-minded when in that much pain. Just get to the car. Just get to the house. Just get to that bench. But I notice the looks. Hard to miss.
There has been a study published in the Journal of Pain from Australia that might suggest opiates may cause increased sensitivity in some types of pain. The study had the patients who have chronic pain and hyperalgesia, which is that intense response to pain, we also see in fibromyalgia. They were taking methadone and morphine for the study.
Hyperalgesia is an increased pain response such that more pain is felt than dictated by the stimulus or injury would suggest. It can be specific to an area of the body or widespread. It can be seen with some inflammatory conditions, with some nerve damage situations and it is also a main feature of fibromyalgia. It is quite commonly associated with long-term use of opiate medications so it is not surprising this study likewise had similar results.
“A second finding showed that similar nociceptive profiles are found in chronic pain patients treated with methadone. Third, the study showed that pain sensitivity associated with methadone administration also is found in morphine-treated patients. According to the authors, the study demonstrated that hyperalgesia but not allodynia is associated with the long-term administration of opioids.”
In many cases, opiate based medications, such as Percocet (oxycodone) are not as effective for people with fibromyalgia and a more effective treatment are the medications acting on the brain neurotransmitters themselves. Lyrica and Gabapentin are anticonvulsants which by affecting certain neurotransmitters try to dampen the pain signals and decrease pain where it is in fact starting. Fibromyalgia is brain pain and medications that focus on the brain have a better chance of treating that pain. Other medications that aim specifically at FM are Cymbalta and Savella which are antidepressants used to affect the serotonin neurotransmitter, often found to be lower in FM patients. However, some people do take them for pain management so this will be a concern if it, in fact, increases their sensitivity to pain over time. In the cases, where pain medications are used it might be something to be used in moderation and careful consideration.
It should be noted this risk factor occurs with all chronic pain and is a low risk. When it occurs the patient is switched to another opiate. It should also be noted Tramadol is in the guidelines for treatment as it is one that has been studied as effective for fibromyalgia pain.
This is a reprint of the study I had published on a site that is gone, so putting it up again. As I said, this is a risk factor for all people using opiates. It does run the risk of causing hyperalgesia and this study doesn’t indicate if the risk is greater with FM. However, my previous research into this effect suggests it isn’t a common reaction at all. Typically the patient is simply switched medication. There have been little studies on FM and opiates and the studies Minimal to make any conclusions about. Mostly on Tramadol, which is seen as acceptable and is in the guidelines for treatment.
Here’s the problem with this type of blanket statements: these recommendations are based on the results of only a few small studies showing they were ineffective for fibromyalgia pain. Since no large trials have been done, the recommendations against opiate use for fibromyalgia are based on data from less than 100 subjects! Also, these small studies only looked at patients taking opiates every day for pain, and we know that daily, long term use of opiates does result in negative side effects and diminishing medication benefit over time. None of these small studies assessed the most successful use of pain medications, which is when they are taken just as needed for flares.
So take it with a grain of salt. But know doctors will resist the idea based on these very little studies.
This is of concern to me due to my low blood pressure issues and dizziness. And it makes me wonder. Especially since my doc mentioned I may have POTS.
So the study is looking at the Baroreflex response. Without it we would stand up and get dizzy and could faint. It is mechanism in the body that tries to regulate our blood pressure.
The response involves nerves in the blood vessels near, in and around the heart. Receptors called baroreceptors found on these nerves constantly (fractions of a second) monitor your blood pressure. When your blood pressure gets too high, baroreceptors inhibit the heart rate by turning down sympathetic nervous system activity. When it dips too low, they send a message to the brain to increase the heart rate.
Studies have suggested this baroreceptor problem could explain the pain in FM. “A 2010 study asserted that the role baroreceptors play in pain inhibition has been “well-documented.” It concluded that problems with cardiovascular control likely played a role in producing the pain problems FM patients face. Reduced baroreceptor activation in a 2015 study was associated with increased pain intensity in FM as well.”
So are dizziness, rapid heartbeats, increased pain and such known to be common symptoms of FM? They are of M.E/CFS. And they are with me. Even chest pains, and palpitations. People with FM do get palpitations, that I know.
“Baroreflex dysfunction has been observed in women with FMS. However, it is unknown whether the limited involvement of the baroreflex control during an orthostatic stimulus has some impact on the quality of life of the FMS patient. Therefore, the aim of the study is evaluate the relationship between the quality of life of the FMS patient and indexes of the cardiovascular autonomic control as estimated from spontaneous fluctuations of heart period (HP) and systolic arterial pressure (SAP). ”
They enrolled 35 women (age: 48.8±8.9 years; body mass index: 29.3±4.3 Kg/m2). respiratory activity, blood pressure and electrocardiogram were consistently recorded during a 15 period of rest laying down. (REST). And in Orthostatic position during active standing. (STAND).
Traditional cardiovascular autonomic control markers were assessed along with a Granger causality index assessing the strength of the causal relation from SAP to HP (CRSAP→HP) and measuring the degree of involvement of the cardiac baroreflex. The impact of FMS on quality of life was quantified by the fibromyalgia impact questionnaire (FIQ) and visual analog score for pain (VAS pain). No significant linear association was found between FIQ scores and the traditional cardiovascular indexes both at REST and during STAND (p>0.05). However, a negative relationship between CRSAP→HP during STAND and FIQ score was found (r = -0.56, p<0.01). Similar results were found with VAS pain.
They concluded that the lower degree of cardiac baroreflex involvement during STAND in the subjects the higher the impact of the FMquality of life. In other words, we might have problems doing things while standing.
Worthy to note other studies previously:
Evidence of orthostatic problems, however, showed up early in a 1997 study finding that 60% of FM patients (but no healthy controls) exhibited a significant drop in blood pressure during a tilt-table test. Martinez-Lavin followed that up with a 1998 study highlighting the autonomic nervous system problems that popped up when FM patients stood.
A 2005 study found a high rate of fainting (44%) during a step-wise TILT test. I was unable to find any studies evaluating the incidence of postural orthostatic tachycardia syndrome (POTS: >30 heart rate increase upon standing), but Staud, in a 2008 review, claimed that POTS commonly showed up in tilt table tests in FM.
I’m taking a disability studies class this term as part of my social work program. I study part-time, online. I thought I would post some of my reflections on reading articles for the class. People living with FM and CFS/ME don’t always think of themselves as ‘disabled’, but the way the world is organized and the way these conditions affect our bodies certainly mean we do live with a disability.
Reflections on Eli Clare’s (2001) Stolen bodies, reclaimed bodies:
I found that this poetic article illuminated the physicality of the experience of living with a disability in a way that I had never encountered before. Weaving the author’s personal experiences along with disability theory was incredibly effective in making the central point of the article. Clare argues that the disability rights movement identifies the social and material conditions that oppress disabled people as the locus of change, rather than the individual’s impairments of the body. However, in so doing, the body and somatic experience often gets lost in progressive disability discourse. Clare makes the point that our bodies are a key part of our identities, and mediate our engagement with the external world.
I have never thought about the social model of disability in these terms before. It makes sense to me, though, both intellectually and viscerally. I identify as a person living with a disability, and one component of my experience is chronic pain. Chronic pain, from my perspective, never fits neatly with the assertion by the social model of disability that the only location of problem and change in society. My relationship with my body, the pain that I feel every day, is also a site of struggle, and a challenge in my life, alongside the social oppression that I face as a disabled person. Disability, then, for me, is about both a relationship with myself and the external world. This article provided me with new ways to understand the internal and external realities of disability. Clare connects one with the other, as part of the disability rights movement; “without our bodies, without the lived bodily experience of identity and oppression, we will not truly be able to reconfigure the world”
You’re sitting in the doctor’s office, being told you have an incurable illness. Maybe you have to leave your career, or pull back on your workload, with set accommodations. You can’t live up to being the involved wife, parent, sister, or daughter you planned on being. Travel becomes difficult, athletic ability falls off, and favorite hobbies or pastimes become more challenging. But mostly you just don’t feel like you. A period of grief ensues over your previous life, and it crashes over you in waves.
Eventually, you start asking the big questions. Can you live a good life despite pain? How do you find meaning again amidst all the change?
I don’t have THE answer, but I did find some answers. I had to understand what I’d found meaningful in life Before Fibro (B.F.). And then I had to find the meaning behind the meaning- why is something sustaining, nourishing, enjoyable? Finding meaning is epitomized by the quote “A life well lived is a life fully experienced.”
I was a very career-focused B.F., finding satisfaction in the field of global health (HIV/AIDS prevention and treatment). Once all that stopped, I felt stuck and lost. The one thing I had been certain of, my “calling”, was gone. Making a difference through my career had given me a sense of purpose.
Travelling was my favorite activity. I came to realize that experiencing different cultures and ways of life was important to me because it had made my own worldview expand. Broadening my horizons made me feel vital and alive.
How to replicate that feeling from my couch at home? An answer came surprisingly from the podcasts and audiobooks I listened to during my enforced rests. I found I enjoyed learning about history, as a way to travel from my armchair. (I’m a ). Learning feels like time well spent, whether it’s listening to a historical mystery or an episode of a podcast on ancient Egypt. After all, curiosity keeps your brain healthy and young. What do you geek out about? It can be anything, from an academic subject to a hobby, to DIY project techniques. Intentionally find ways to learn about things you find interesting, from online classes, podcasts, audiobooks, or just connecting with interesting people online and asking them questions. The time that feels spent on rewarding things makes meaning.
Over time I came to see that there is a lot of life to live here, in ordinary life, without globetrotting or being career-driven. I never appreciated that B.F., assuming everyday life was boring and humdrum. But in learning to be mindful and still, I’ve found how much I missed before, and how much being present enriches my life. Being on autopilot, or always looking ahead, meant I whizzed past sunsets, birdsong, long hugs, savored meals, belly laughs and so many other moments. Connecting to the beauty and wonder all around us via our senses is possible, even while in pain, even at home. Finding ways to feel that makes life more worthwhile. Mindfulness as a practice, or just realizing the need to be present, means showing up for moments big, and small. Choose to stay with an experience instead of reaching for a distraction.
And the difficult experiences of chronic pain, surviving the limitations, still mean that you are living fully. I’ve grown in strength, resilience, compassion, self-confidence, and patience in ways I never would have before my illness. After all, what else really is the point of life other than to become a better, wiser version of ourselves on this journey? This is another way to have a purpose in life. I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self-worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one.
I’ve written before about the critical importance to our happiness of self-expression and contributing to something greater than ourselves. We are often taught that the only way to do this is to work and be a “productive citizen.” However, there are so many other ways to find connections, such as sharing your story and finding online relationships, to learn from and support others. Writing on my blog and now writing as a freelancer, has transformed my life. Volunteering, supporting others online, teaching, mentoring, and sharing your experience are all ways to contribute, big and small.
Fiction writing has engaged me again in a new way through imagination. (I’m writing a historical mystery set in Niagara Falls during the American civil war when the area was a hotbed of spies and intrigue). Creativity can be a form of salvation, as a craft, art, music, interior decoration, in the kitchen, the garden, on the page, or anywhere else. We shift into an active mode, not passenger mode when creating. Yet we also refrain from intellectualizing, analyzing, number crunching, or any other left-brain thinking. Creativity is about engaging intuitively, emotionally, and symbolically with the world, through self-expression, using the right brain. It’s good for your heart; it’s good for your soul. Don’t disparage it as “unproductive” or unimportant, because it is a meaningful source of intrinsic pleasure. It’s meaningful because it’s a way of being open and engaging with the world around you (sensing a theme yet?), via your senses and interpretations, from your own unique perspective.
We find meaning in our relationships, in our faith, and in our philosophies. But we have to be present, open, and engaged to really benefit from these resources. That doesn’t happen overnight! But tuning in to our senses, our inner strengths, our creativity, our intrinsic interests and sources of pleasure allows us to connect to the world in ways that create and cultivate meaning in our lives. This is a form of strengths-based healing – leveraging your inner resources to create a life fully experienced, and well lived – in spite of adversity.
Last week I found myself in the worst flare of my life. After a month of mounting stress, marital grumblings, and the sheer psychosis of living chronicallyill I hit bottom. Bottom when you have Fibromyalgia really hurts. So I proceeded to walk around stooped over like a little old lady holding my lower back, wailing and crying and gnashing my teeth over how absolutely awful everything was. Then the anger I try so hard to keep tucked tightly under cover flew up and gave me waves of new aggressors to aggravate my rapidly crumbling illusion of reality.
Oh, I was a mess. And Fibromyalgia saw this weakness and POUNCED, took her claim back over my body. Elephants ballet danced with thunderous weight across my upper back, the pain from my lower back radiated all the way down my legs, into my feet for crying out loud! My hips forgot they were made to swivel and when I walked my body weight threatened to crush my internal organs. It was as if somebody pushed the rewind button and took me back to 2006 when I was disabled from Fibromyalgia and Chronic Fatigue Syndrome/ME.No wonder I was such a mess, I thought to myself. This is horrible! I became convinced I was never going to run again and immediately crumpled into a Jello-ing heap at the thought of gaining back the 30 lbs. I just found out I have lost this year. How was I going to write a blog with a positive spin on how to survive Fibromyalgia? How was I going to write the book I am working on to raise awareness? How on earth could I keep the burning embers of The Fibromyalgia Crusade stoked and roasting? How, how, how? For there was just so much pain.
The life I know and have been working so hard to rebuild ceased to be a reality as the evil fingers of cranial destruction pushed on damaged neurotransmitters and overactive pain receptors. I experienced agony beyond a medicate-able amount, sending me not only through the roof but darn near jumping off it when I got there. Am I going to get my life back, or is this just the way it is now? I seriously wondered. Then I recalled with acute clarity the first time I asked myself that question and how many years and how much work lay between then and now. I am just not up to it, I can’t do it again, I reassured myself as I slept and watched mindless reality television, looking for any escape. But something strange happened as I took leave of my stress and took care of myself. I started to feel better. Slowly but surely I started to feel better until one day I woke up and had to remember the flare, for it had passed. But I have renewed in my efforts folks, shouting from the rooftops as loud as my little lungs will carry how absolutely horrible Fibromyalgia is and how living in that unbearable pain is perhaps the worst thing in the world. God bless all of us who suffer from this illness.
There is a book whose title I will not tell, written by an author that will remain unnamed, that everyone in the whole wide world made such a giganticfuss about. Hollywood even made it into a movie! And all I heard from everyone I knew was to read this book. It is great! Empowered womanhood! You will love it! They all assured me. So I broke down and bought the darn thing in paperback at Target. Immediately I was turned off, for this woman had been portrayed as a hero, a goddess of unprecedented proportions for overcoming unspeakable pain and triumphing over all her wrongdoers with a transcendent peacefulness.
But all I could see was a woman with an endless bank account and oodles of time on her hands void of any responsibility cavorting around and indulging herself. And I got mad. Actually, I was really really jealous. Because I wanted her life. And I wanted her problems. And most of all I wanted her solution, irresponsible and generously funded self-indulgence! I put the book down after my 6th or so attempt to get into it, fuming and angry as I had been the 5 times I had previously ventured into her world. Did anybody even edit this book? It reads like she turned a tape recorder on and recorded her stream of consciousness, whatever came to mind and published it hot off the transcriber’s desk. Finally, I decided this is not the right time in my life to be reading this book and it went back on the shelf for another place, another journey, a whole other attitude adjustment.
Then irony smacked me upside the head a few times to catch my attention. My complete lack of compassion became glaringly obvious. I judged this woman because her trauma was not worthy of my respect. It was not big enough, grand enough, destructive enough. But it was still her trauma. She had every right to feel what she felt, for if that was as bad as her life had gotten she was a very lucky girl and must not have much to compare it to. She had every right to make millions of dollars off this venture if she is writing what her customers want. Just because this woman had not befallen to a multitude of health problems or natural disasters or an abusive past or anything equally traumatic I judged her. Yet I would not ever in a million years with what I have been through on even my worst enemy. This found me in a particular set of reasoning that made no rational sense. My heart softened and I found empathy and even a little joy in being reminded not everyone suffers so horribly in this thing called life. So go for it girl! Live your life and keep loving and laughing and doing what makes you happy, I begrudge you nothing. I hope she never has to find out about the devastation that comes when life really betrays you and leaves you stripped naked and beaten lying on the floor wanting to die. I can only pray.
