Dear Fibromyalgia

Tag: fibromyalgia symptoms

A detailed guide to understanding Fibromyalgia symptoms, early warning signs, and how they are diagnosed.

  • Fibromyalgia: the overmedicated ‘patient’

    Fibromyalgia: the overmedicated ‘patient’

    “America is one of the few advanced nations that allow direct advertising of prescription drugs, Robert Reich

    BigPharma makes huge profits from those of us suffering from chronic pain, fatigue, depression, anxiety,  itching, and digestive issues- to name a few of the common symptoms of fibromyalgia. Every day we are inundated with advertisements about prescription drugs that would alleviate these symptoms. Equally as rich is the vitamin industry which advocates specific supplements for the treatment of fibromyalgia, a few of which are science-based. Generally, we take them willy-nilly without any idea if they are helpful or not.

    There is hope with a slow movement to de-prescribe medications, which is especially relevant for those of us with several painful and chronic conditions. However, for those of us living with fibromyalgia, we are used to not being listened to by health care providers. Many would prefer to prescribe a ‘pill’  (or several pills) to help with our ailments in spite of the fact that we are often over-medicated and highly sensitive to medications.  Dr. Jaye Cohen advocates “go low, go slow”, and I am a big advocate of that philosophy. Taking medications on a daily basis when they are necessary for life-saving measures is crucial, but even then, what if the quality of life is compromised? What if, like in the case of fibromyalgia, the condition is not life-threatening? The answers to these questions are ones we have to grapple with constantly as we are the final decision-makers. Many of us have sometimes two or three serious health conditions and the medications for each conflict with one another in spite of the goodwill of pharmacists checking on their interactions. The experiences of people with fibromyalgia are unique and even more so among the community of fibro sufferers. One size does not fit all.

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    A review of the hundreds of comments I have posted over the years could be a rich source of data. I can attest to the vast amount of anecdotal accounts of medications prescribed that have resulted in what can be deemed over-prescribing and a prescribing cascade. The latter is when a new medication is prescribed to counteract the bad effects of another drug. Fibromyalgia is not a disease, but a dis-ease of the central nervous system. Medications have been found to have only limited positive results. Lyrica and Gabapentin are heralded as the medication for fibromyalgia.  The TV ads are plentiful and daily about Lyrica. I have taken both in the past, but the serious weight gain has been a side effect and I found that I needed to constantly increase the dosage for the medication to have any results, often with more side effects. But, we are a desperate and frustrated group of people. We are willing to try most anything, hoping for relief. For some the above-mentioned drugs are beneficial; for many, not many works. The above picture is what I had been taking every day, some more than once a day. I worry about the impact on my liver and kidneys. I have decided to come off Gabapentin and in fact, there is not much change to my pain level. Hopefully, it will help with my weight issue. As far as my heart medications I adhere to those prescriptions since to this point in science they are, for the most part, evidence-based. While I worry constantly about a statin, I am searching for one that does not have side effects like the one prescribed for me in the hospital. But as far as fibromyalgia medications there are none that are effective for me, even though I thought for a time that Gabapentin was doing the job! Now, in hindsight, I believe that for me it was the placebo effect. Many though have found it to be helpful and I don’t want to discount their positive experiences.

    The books warning of the dangers of polypharmacy are plentiful and many of us want to take control of the chemicals we are taking into our bodies.

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    But these cascading effects result in multiple prescriptions– one for anxiety, another for sleep, one for depression, another for pain, while still another for digestive complaints, and so on. Please read some of the older blogs’ comments ( there are 110 blogs!) and you will probably be aghast, like me, about the ways in which we have abused our bodies with these chemicals. Do not misunderstand me- many prescriptions are absolutely necessary as life-saving measures, but those for fibromyalgia are not. I am not blaming the victim. We do what we have to do to find relief.

    I have tried it all, homeopathy (which has been shown to be merely water!), acupuncture, herbs, vitamins, supplements- I believe I have partaken of all of the alternative/complementary therapies. None have worked. Much money was spent, time wasted, hopes dashed. What is to be done? We must be advocates of our own health, pay attention to science-based prescriptions, watch for side effects, and concentrate on other nonmedicinal or supplemental remedies such as light exercise, watching our diet, mindfulness meditation practice, and avoiding stress. In the end, there is not much else we can do other than train our brains (read: central nervous system) and stop thinking we have a disease, but rather a dis-ease. I have heart disease. I have fibromyalgia which is a dis-ease. There is a big difference, but both of which cause worry, pain, and multiple symptoms, oftentimes I cannot differentiate between the two, which is very frustrating. Many of you dear readers have other chronic conditions alongside fibromyalgia. It isn’t easy living with them all. But, I do have a lighthearted quote I will enjoy sharing with you:

    “I believe gelato is meant to be treated as medicine and taken daily as a prescription”, Betty Brandt.

    The following birthday card may be somewhat funny, but there is a sad element of truth in it:

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    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia and ear, dizziness and vertigo problems

    “The ear is the avenue to the heart”, Voltaire

    Just as I thought I had experienced everything unusual with regard to this annoying, frustrating, challenging dis-ease, fibromyalgia, I developed another aggravating symptom- VERTIGO! It all began one month ago,  at night, turning over in bed, the room began spinning. It was very frightening. It lasted about 30 seconds followed by nausea. I had another episode the next night as well. The morning after the second episode, leaning forward I had a very violent attack which prompted me to go to the doctor.

    This vertigo is not to be confused with dizziness that is brief and passes quickly. Rather, vertigo is experienced as spinning. It was described to me as small calcium crystals lodged in the inner ear and could be encouraged to move through by a positional maneuver. The doctor asked me if I was game to try this technique and I agreed. Lying on the table my head was hanging somewhat over the end while he held my head and rotated it for 30 seconds. This maneuver is described on the Mayo Clinic site and it is suggested that the person can actually try this at home.

    I can attest to it being one of the worst experiences I have had in many years. The doctor did this three times, on both sides, and nausea and dizziness became unbearable, resulting in the need for a nurse to administer a Gravol injection. Thinking about this nausea and dizziness actually makes me ill again. Obviously, the maneuver did not work.

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    A few weeks went by and on the advice of friends, I made an appointment with a physiotherapist who specializes in vestibular issues, among them vertigo.  An hour and a half visit, testing me, wearing a face mask with wires attached to a computer, he watched my eye movements on the computer (after he had determined which ear and wherein the ear the crystals were located- the horizontal part of this convoluted anatomy), then the treatment which was non-nausea inducing and only slight dizziness happened.

    I had been shaking beforehand fearing the worst and relaxed as I knew he knew what he was doing. Miracles of miracles- it worked! I was told to take it easy for the rest of the day and to keep my head still neither looking up nor down for the rest of the day and sleeping on my back that night. The following day I was to test for vertigo and luckily for me this one treatment worked. He had told me that there was an 85% chance it would work first visit and if a second was needed it would rise to a 95% success rate and if a third was needed it would definitely move those crystals along! I smile now remembering waking up without fear of the room spinning.

    This physio, Steve, is amazing in that he knows so much about fibro and migraines (which he believes are similar in that they are the result of people who have different ‘brain wiring’ than most others). For that reason, he handles fibro patients with great sensitivity and understanding, given our own sensitivities. I am so lucky to have found him.

    But to my other ear problems. They crackle, feel like they are submerged in water, feel full, flutter and  I have other odd sensations that come and go. My hearing is not good, particularly on certain days. What is to be done? So little is known about fibromyalgia that each and every symptom, although shared by those of us with this condition, is not properly diagnosed by specialists.

    I try heating pads for my stiff neck, meditation, and exercise, but to no successful end. My chiropractor does give me some degree of relief, but it is temporary. On 2010/01/08 I wrote about Fibromyalgia and Hearing Loss discussing tinnitus, TMJ, and the involvement of the 7th cranial nerve. Comments from others encouraged me as I realized I was not alone. It seems this central nervous system of ours invades every avenue of the body bringing about weird symptoms!

    Fibromyalgia remains a mystery to me in spite of the lonely journey I have taken to explore this strange land. I am still going up and down various paths searching for the right one. The discovery won’t come in my lifetime.

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    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia and Trauma Memory

    Fibromyalgia and Trauma Memory

    ” Most of us have unhealthy thoughts and emotions that have either developed as a result of trauma or hardships in their childhood, or the way they were raised”, Steven Seagal

    It would seem that those of us with fibromyalgia have developed the condition at an early age which may have taken a tremendous shock, accident, or crisis to bring about full-blown fibromyalgia. Some of us have had repeated crises in our sensitive lives and did not even experience a single unusual occurrence of the syndrome developing. Nonetheless, we are a group of people with specific personality traits that allow us to dwell on trauma that seems to be stuck in our minds/brains reactivating the experience more frequently than is healthy. So, how in fact can we find ways to train the brain to refocus away from past trauma? The work of Dr. Richie Davidson, neuroscientist, has presented us with the interesting option of “spending as little as 30 minutes per day training our minds to do something different” (p.52 Mindful August 214) which can result in changing the brain. To that end, I had decided that quilting was not the answer as I had previously tried that and not had much success (see blog Fibromyalgia and Multitasking, May 17, 2009). Instead, I would try my hand at writing about personal issues.

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    I have begun to write short stories about my life, exploring the reasons why I am the way I am, an anxiety-riddled person with a tendency to overreact to any kind of stimulation which then begins the vicious cycle of pain and fatigue flare-ups. Writing these 2 or 3 pages about events in my life, for example, about my first day of school, often brings about unhappy memories. So, I have been training my mind to do something different, but in fact, it is not exactly a healthy endeavor. Or is it? The two friends with whom  I shared this first day of school story had different responses to it. Each is valid. One friend suggested it was a good practice, then after I had written bad stories, I should print, tear up and discard them forever. The other friend reminded me that I have written before about reactivating the amygdala to relive a bad experience, and writing about past trauma was not a good idea.

    Ah, but back to Mindfulness– living in the moment- not the past nor the future, but the here and now. That is, after all, the idea that whether I am eating a meal, driving the car, or being with friends I am just being without judgment-  I am conscious of the actual moment, not reliving past negative events. I have to train my mind to do something different that is pleasing and not anxiety-provoking.  It should also be repetitive and creative. Hmmm, whatever shall it be?

    https://fibromyalgia-6.creator-spring.com/
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    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia and our memories, our brains

    Fibromyalgia and our memories, our brains

    ” Our memory is in large part the starting point for how we think, how our preferences form, and how we make decisions”, Maria Konnikova

    Several weeks ago on CBC radio upon hearing an interview with Dr. Konnikova regarding the science of memory, I became intrigued with the ways in which she has based an understanding of neuroscience upon the brains and memories of two fictional characters- Sherlock Holmes and Dr. Watson. Being a Holmes lover and extremely interested in how the brain works- as my readers will well know from my many blogs, I hastened to read this amazing book regarding these two distinct minds which she dubs the brain attics. This term she pilfers from Holmes who said: “I consider a man’s [sic] brain originally is like a little empty attic, and you have to stock it with such furniture as you choose” (cited in Konnikova, p. 26).

    Chapter two regarding the concept of the brain attic was one that captured my intense interest as I have often referred to my own brain as one which is tired and needs emptying. I am hooked on wanting to change my brain and it’s bad/useless memories and having it become more like that of Holmes than Dr. Watson!  The Watson attic (which in my case is constantly on high alert (the amygdala), is, in Konnikova’s words, “jumbled and largely mindless” p.29)  and needs cleaning out. I need my brain attic to be more observant and recognize the memories which precipitate continuous anxiety/fear.  More importantly, her emphasis on meditation training is in line with my own thinking about the ways in which meditation can clear out the brain’s attic memories, although as Konnikova says, it takes practice, practice, practice.

    As with all the books I suggest as important reading material for people interested in how the brain and, especially memories affect those of us with fibromyalgia, I am leery about giving away too much in-depth information regarding the content. I encourage readers to read the book in its entirety. IT IS NOT A BOOK ABOUT FIBROMYALGIA– THE READER IS WARNED! It is a book about forcing the mind to be more observant and logical. Here I am trying to join together relationships that I have not been able to read about elsewhere.

    Fibromyalgia is a mammoth puzzle and “your neck bone is connected to your head bone” ( a sentence from words to the song Dry Bones by James Weldon Johnson and J Rosamund Johnson). It is an appropriate analogy here. Let me tire you once more with the ways in which I have to this point, unraveled what for me has become some major aspects of the dis-ease. How to present it? A circle is not appropriate, nor is it linear so that visually one cannot uncover what I consider to be the gestalt, the complete picture. It seems to me I can only repeat words that are linked within a mishmash of brain/memories in a person who suffers from a Watson-type brain. What follows is my description of the fibromyalgia person.

    First, there is the highly anxious individual who may or may not have developed anxiety in utero or in childhood (the old nature-nurture issue). This person has stored long-term memories in the attic’s ‘storage space’ which both Lars Clausen (in his book Fibromyalgia Relief) and  Dr.Konnikova point out is called consolidation. It is likely that childhood trauma has been responsible for this storage. Every time a new stressful event occurs, the file (as Konnikova has coined it) is pulled out and more is added to this memory. The attic becomes more cluttered.

    Secondly, this highly anxious person is at the same time the highly sensitive person whose fight–or–flight Watson- the brain is on the lookout for even more and more anxious memories to add to the file. It does not discriminate- “What’s stored is organized according to some associative system…” ( Konnikova, p.31), called ‘associative activation’. With the Holmes- mind one can acknowledge the emotion – in the case of fibromyalgia, it is fear/anxiety-but you cannot let it get in the way of objective reasoning (p.40).

    Thirdly, we now have the body being affected by this constant hyper–vigilance of the central nervous system, from that part of the brain which is always on the lookout for new anxieties to add to the file. Other systems are affected, the muscular–skeletal seems to be the first to go!  The immune system becomes compromised. Pain and subsequent fatigue begin, followed by a myriad of other disquieting symptoms, causing more anxiety to add to the memory pile up.

    Clausen writes of memory reconsolidation which some neuroscientists are advocating. As Clausen has written: “Unless we reconsolidate the emotions we have of our past memories, we will continue reacting to the old emotion of each memory” (p.71). In other words, we must clean out the attics of our brains! Consolidation is considered to take place within the first few hours so it is necessary to stop these emotions from becoming part of the furniture of the attic! However, in spite of the controversy that surrounds the issue of reconsolidation, there are those who suggest that previous memories can be made labile through reactivation of the memory, such as Clausen’s technique of  ICE (previous blog).

    Konnikova advocates being mindful, but there is more to changing the brain and subsequently those unwelcome stored memories. The vast scientific literature that has been presented over the past few decades based upon the neuroplasticity of the brain points to other techniques as well as learning to observe diligently. Movements such as Chi-gong, yoga, dancing, taking on new tasks that are creative and repetitive, music, and art all feed into the realm of strategies that together can activate new pathways. We are seeking to develop a Holmes brain where “thoughts, properly filtered, can no longer slyly influence your behavior without your knowledge”, (.p21). But Konnikova warns: “It won’t be easy”, (p.21).

    “You know my methods, Watson”, Sherlock Holmes

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    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia: ‘Women’ and ‘Men’ Differences?

    Fibromyalgia: ‘Women’ and ‘Men’ Differences?

    “The happiest women, like the happiest nations, have no history”, George Eliot

    I have based my unproven theory about why more women than men are diagnosed with fibromyalgia upon a feminist analysis of the political and cultural roles of women in societies in general- both historically and at present. However, now that gender is currently socially constructed and is much more fluid, it has indeed become a complex issue and not as straightforward as I previously thought. I have begun to look less at statistics in regard to the ratio of women to men because I believe that fibromyalgia is a catch-all term that includes all genders who suffer from chronic pain and fatigue and it is under-reported by many who define themselves as traditionally female or male.

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    The concept of fibromyalgia developed as more and more women began to speak out about similar characteristics and symptoms which encouraged physicians to deem that it was primarily a condition that afflicted more women than men. There isn’t any way to be accurate about how much of the population of any country has fibromyalgia. In many places there isn’t even a term for the condition; more to the point many traditional men have been hesitant to report the symptoms to a health care professional for fear of being seen as less masculine. There is little doubt that for bi-sexual and trans-gendered people the issues are even more complex. But, things are changing as more military personnel are reporting post-traumatic stress syndrome, formerly known as ‘shell shock’ and then ‘Gulf War Syndrome.

    It is widely known that traditional women, more so than traditional men, are more prone to seek medical attention for both their families and themselves. Furthermore, women are generally more sensitive to bodily changes and other nuances that are often difficult to describe. An example of this is the reported “sense of impending doom” that women often experience weeks or days before a heart attack (I can attest to that!). Yet, when women mention to their health care providers symptoms that should be suspiciously attributed to heart disease, there is still a general misconception that heart disease is primarily a man’s condition.

    Conversely, when a woman discusses her chronic pain, fatigue, and other symptoms, the label of fibromyalgia is more readily applied. If a man admits to having chronic pain the affected areas are more likely to be vigorously examined and attributed to, for example- a disk, muscular strain, and so on. It is my view that emotions, in particular, anxiety, are responsible for fibromyalgia. Since emotions are culturally and socially defined, girls are perceived to be sensitive and emotional whereas boys are rewarded for being dominant. However, the differences are in how emotions are expressed rather than experienced.

    So why is it that women and men are treated so differently within the health care systems, in particular with regard to chronic pain, fatigue, anxiety, and depression? It is true that fibromyalgia is not life-threatening, and in my view is caused by lifelong anxiety issues in highly sensitive persons, but given the large numbers of people affected by the condition why is the focus still explored as primarily a woman’s condition? Even more to the point why is it that researchers are keen to explore what they perceive as problems within the woman’s body which cause fibromyalgia?

    I have written extensively about the highly sensitive person and fibromyalgia, which I believe to be the same as the highly anxious person. This, in turn, becomes a mentally unstable issue that is more likely to be primarily another woman’s problem as more women report and take mood-altering medications than men. Yet, in the last few blogs, I have written the ones who have come forward recently to write about anxiety have been  (white, privileged, self-identified) men, which, by the way, takes a great deal of courage.

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    Sociologically women’s lot in life, worldwide, is and has always been more difficult, suffering more frequently and dramatically from sexism, domestic abuse, victims of crime, ageism, racism, sexual abuse, incest, violence, poverty,  and the many inequities in economic realms. It is little wonder that women suffer more from lifelong anxiety and their spirits are often broken. The question I often ask myself is why this has become medicalized and the conditions of both anxiety and fibromyalgia are thought to be shameful when it is because of the socially constructed women’s role in life? Searching for a lack of this or that in the bodies of those with fibromyalgia seems to be the end result – the effects- of the condition rather than the cause.

    The exposed heart in this oil painting is how I interpret the ways in which most women are vulnerable. Even at this young age, without professional training, Jaden’s paintings usually reflect the open, bursting heart of women. Are our young women intuitively aware that life will be more difficult for them? Do the pressures of beauty and fashion,  sexual activity, struggles within social structures that are constraining, and the ‘glass ceiling effect’ in the workplace, perpetuate our lifelong struggles with anxiety, even in the most ‘stable’ privileged environments?

    Even more to the point what emotions are not discussed in the fibromyalgia rhetoric regarding people of color, LGBTQ communities,  in war-torn countries, street people, and other disadvantaged groups that lead to this dis-ease? Surely their pain and fatigue, among the other myriad of symptoms, areas under-reported as those of more privileged groups, such as white men, that is, those who themselves suffer from anxiety expressed as a different phenomenon, particularly those in the military who have fibromyalgia known as PTSD?

    I know more about fibromyalgia now than I did ten years ago and I am more than ever convinced that while there are strategies we can employ to work with our anxieties the idea of fibromyalgia itself is socially constructed to mask as a  disease, when in fact, it is an expression of wounds to our psyche from which all people suffer to a certain degree.

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    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia and Chronic Fatigue: Medically Unexplained Symptoms (MUS)

    Fibromyalgia and Chronic Fatigue: Medically Unexplained Symptoms (MUS)

    “Open your heart to your suffering”, Toni Bernhard

    There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’. Often thought of as malingering, hypochondriac, weak, attention-seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system that cannot sustain itself in a healthy manner any longer.

    It is as though we have overstretched the central nervous system just as a rubber band might become less elastic after constant overstretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal.

    In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue, and myriad of other symptoms with which we are faced.

    I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be cured of the pain, fatigue, intense itching,  depression, anxiety, nausea, flu-like symptoms, and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard:” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.

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    I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think about the thought I am having at that moment then I consciously drop it.

    I live with the focussed anxiety of having a flare-up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful.

    I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, as I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment, or ‘mindfulness meditation’.

    I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a life that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have it now.

    There are many of us living with medically unexplained symptoms, such as those fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness,  and post-traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many health professionals.

    As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity– directing the sublime state at yourself”.

    This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (Wherever You Go There You Are).

    There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another, or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to me and open my damaged heart to my suffering, without reproach or wishing for what cannot be!

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia: The Mark of Shame?

    Fibromyalgia: The Mark of Shame?

    “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”, Maya Angelou

    On June 3rd I heard a documentary on CBC radio talking about the mark of shame, the culture of shame, and how it makes one feel. There is so much about the visibilities of women’s bodies that cause us to hide perceived imperfections, in particular, the dyeing of our hair so as not to look old, plastic surgery to hide our wrinkles, overuse of cosmetics, whitening of our teeth, even the marketing of products to enhance the color of vaginas! 

    We can never measure up to the standards set for us by the big businesses of the multi-national corporations who prey on our insecurities. The cosmetic industry is constantly thinking up new ways to make us feel insecure and shameful if we do not keep up the appearances of a youthful women. We must always be thought of as sexually desirable dictated by our outward appearance.

    That isn’t to say that I am morally judging those who use whatever means they can to feel good about their outward appearance. Rather, it is meant to point out that we are often prone to hide the fact from ourselves that we cannot stay or look like we are in our 20s forever.

    While none of this understanding of women’s attempt to look like the Hollywood definition of beauty was any surprise or new to me, having taught in a women’s studies program for many years, nonetheless it got me thinking about conditions that are invisible and about which we have shame because we cannot measure up to standards of health, for example, with fibromyalgia.

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    Fibromyalgia is a syndrome about which people often sigh and believe we should not indulge ourselves in lamenting about our pain and fatigue, as well as a myriad of other symptoms, rather we should just smarten up, ‘suck it up in order to feel better. I believe that health professionals are among the worst as the condition cannot be diagnosed through the usual medical tests and there is no known ‘cure’.

    But, family and friends also blame the ‘victim’, even though I hesitate to use that phrase as we are not actually victims. Of course, this attitude of others makes us feel shameful about ourselves and the self-critic, ruminating voice within believes we are malingering and should become less vocal about admitting we have such a dis-ease, that we are asexual and sickly creatures.

    The disdain that many health professionals and many of the general public portray to those of us with fibromyalgia can make us feel like we are hypochondriacs. The syndrome itself is a stigmatizing label all the more so because it is invisible and we look healthy. In her April 13th blog, Carolyn Thomas (www.myheartsisers.org) writes about Healthy Privilege.

    She quotes Dr.Ann Becker-Schutte who writes: “Many physical health conditions and all mental health conditions fall into the category of “invisible illness”.   Furthermore Dr.Becker-Schutte writes about those who are healthy and do not “see or understand because they have some degree of what I am calling healthy privilege”. I have found this to be even more obvious now that I have two invisible conditions: fibromyalgia and heart disease.

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    Several years ago I decided to let my hair go grey and not blow dry it straight as I did every day. I let it dry naturally and do not blow heat on my head, letting the natural curl do as it wants. I do not use make-up and use only moisture cream that does not have any of the nasty ingredients that are so dangerous to our health and cause so many sensitivities and itching.

    Eye make-up is not an option as I am sensitive to it and to light and my eyes will burn and water if I use cosmetics on them. I have gradually let go of all the social demands to try to look younger than I am. It hasn’t been easy. As I look back on these almost 100 blogs I am always stunned by the hundreds of comments on itching. Until I gave up on most cosmetics I too found itching to be a serious problem.

    I know many cases of women with serious allergies who continue to dye their hair and wear eye makeup and other cosmetics that actually induce itching and sensitivities. In fact, I have given in to the shameful, stereotypical view of the older woman who appears to no longer care about looking younger. 

    While I can do this to my bodily appearance, I cannot hide the pain and fatigue from myself but I do often hide it from others. It can be a sign of weakness of character to admit I have a hyper-aroused central nervous system. I don’t like this label. My casual appearance these days is amazing to many who do not know me intimately. I am told over and over how well I look; how natural I appear; how healthy I look; how I do not look my age. 

    Many cannot understand that appearances are deceiving. The shame for me is that I relish these compliments. Why would I want to tell them I am suffering from post-traumatic stress syndrome five months after a heart attack, that I live with pain and fatigue from fibromyalgia, and that I am taking many medications for heart disease?

    I want to belong to the club of those with Healthy Privilege, not the clubs of those of us with an invisible disease of the cardiac sort who often induce fear in others about their own hearts, nor the dis-ease of fibromyalgia which has a stigma attached to it. These are the challenges we face living with conditions that cannot be seen; how we handle them is a sign of both our vulnerabilities and our strengths.

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia, Heart Disease and Women

    Fibromyalgia, Heart Disease and Women

    “One out of two women are going to have, live with, and/or die from heart disease and stroke,…It is amazing women are still not getting that message, and one has to ask why.” Dr. Martha Hill

    On January 19th I suffered a heart attack. For that reason, I have not written much in the past several weeks. Writing about the ‘event’ is not easy. I could not have survived emotionally without the wonderful advice, support, and assistance I received from healthizes.com.  The owner of this website, Alexa Robber is an extraordinary woman and a heart attack survivor herself.

    Women and heart disease have become a burning issue with me now. The problem as I see it with women and fibromyalgia is that we tend to think that all are related to our condition and negate symptoms that are seriously life-threatening. With me, it was shortness of breath and fatigue. I tended to think it was all due to fibromyalgia until it was too late; I had a heart attack and now must learn to survive with a damaged heart.

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    While there have been those who have written about fibromyalgia and heart valve issues, this wasn’t the case with me. I do know though that it is important to seek out information regarding the relationship between heart disease and fibromyalgia. There is so much that is unknown. My advice to you dear readers is to be very vigilant regarding your heart.

    Heart disease is the leading cause of death among women. Please in this heart month, be sure not to mistake what you perceive to be fibromyalgia when it may be something even more serious. As a whole, health professionals tend to think of heart disease as a man’s problem. It is up to us to educate them and ourselves.

    For now, I am on the road to a slow recovery with the help of family and friends.

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia and Panic Attacks: Cognitive and Somatic Sensitization

    “If you are experiencing strange symptoms that no one seems to be able to explain, they could be arising from a traumatic reaction to a past event that you may not even remember”, Peter A. Levine

    Two words that are now often coined in conjunction with fibromyalgia are cognitive sensitization and somatic sensitization. I have been exploring the research in this direction for the past couple of years and have recently had another ‘aha’ moment. I am not sure which comes first but with regard to ‘cognitive sensitization’,  because of the excessive degree of empathy for others and fear/anxiety for ourselves, there is vivid brain activity in the amygdala.

    People with fibromyalgia worry excessively and our attention to health-related information is extremely high.  The meaning that pain has for ourselves, the sufferer, or for others whom we perceive to suffer, poses increased threats which affect ‘somatic sensitization, that is, increased reactivity of the nervous system. In turn, this lowers the pain threshold and affects pain tolerance; the consequence is that the fibromyalgia syndrome develops. 

    The two are interrelated but what does that mean in simple language? One hears, in fact, seeks out, health-related information, subsequently, anxiety and fear develop (the amygdala is overreacting to perceived threat) increasing the overstimulation. Then a low tolerance for pain develops. Accompanying this pain is a myriad of other symptoms.

    But is this too simply stated? What can this cognitive sensitization actually produce within ourselves? This is a process within the brain as it receives cues that bring about arousal from a past traumatic event, which becomes an actual sensitization of the neuro system.  In what ways does this anxiety/fear invade our brains?

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    “The result, sadly, is that many of us become riddled with fear and anxiety and are never fully able to feel at home with ourselves or our world”, writes Peter A.Levine (p.21) in Waking the Tiger. With the nervous system being in a state of hyper-arousal, we become overly sensitive to light, sound, and weather conditions among other environmental factors that can cause pain, itching, tightening of the muscles, and fatigue.

    We have difficulty with sleep, stressful situations, our startle reactions and we are hyper-vigilant. Often this dis-ease with our sensitive nervous systems results in heightened anxieties that become panic attacks.

    Social neuroscience has explored the brain activity of many types of people and yet very little has been done with the over-activation of those of us with fibromyalgia. Our tendency to interpret and be in tune with verbal and nonverbal cues of others and be usually in a state of hyper-vigilance is worthy of intense research. it seems as though many of us with fibromyalgia are in caregiving roles such as nurses. We are addicted to giving care to others, too much empathy with the resultant overstimulation. 

    Central sensitization seems to be the view of the researchers on fibromyalgia, that is the central nervous system is usually on high alert and overly sensitive.  The sudden surge of extreme fearfulness, heart pounding, shortness of breath, tingling sensations, and feeling of being in danger can develop anywhere and at any time. This is how a panic attack feels. We are chronic worriers for ourselves and for others leading to catastrophic thinking and being afraid of fear itself is what leads to panic attacks. When did these symptoms first begin to take shape in our psyche?

    As Levine and Scaer have written (see other blogs on this topic) we have been subject to psychological trauma that produces bodily sensations that appear to be a bona fide disease, instead of the dis-ease of the scars from these traumas. Whether or not these lifelong traumas have developed even in utero or in childhood, it seems as though our hypersensitivity has led us down this path. 

    We can change those brain pathways if only those who were quick to medicate us or find a cause that is not psycho-social in nature were supportive in our quest to find ways to heal ourselves. Both Levine and Scaer (among others) are pioneers in this respect and their work brings hope to those of us with this central sensitization.

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Suffering From Fibromyalgia Or Fighting It: The Choice Is Yours

    Having Fibromyalgia is like a roller coaster ride. Most days I just don’t know how I am going to feel. I try to have a positive mindset and I find it helps when I’m around others with a positive mindset as well. However, I realized that not everyone wants to hear or see positivity right now. Frankly, I can understand that – I use to feel that way too. I started to realize I have a choice in either suffering from fibromyalgia or fighting it.

    My Suffering Journey

    I was not always positive about my attitude towards my illness. In fact, you can read my first article on admitting I was sick publicly, Coming Out With An Invisible Illness. In addition to not being positive, I didn’t want anyone to know I was sick. It was like my dirty secret.

    Why didn’t I want people to know?

    • If people knew, they might want to talk about it.
    • Telling people I was sick was admitting it to them and myself.
    • Admitting I was sick might mean I wasn’t able to fulfill my goals.
    • If I admitted I was sick I might have to slow down and put myself first.
    • How can I put myself first, when for so long I have put others first?
    • If I put myself over others, I would feel selfish.
    • I said a main reason was I didn’t want people to feel sorry for me. I said that because really, I felt sorry for myself and was ashamed of that feeling.
    • If people knew, they might think I was weak.
    • Staying in denial meant I didn’t need to make any changes.
    • My self-esteem was too caught up in how others viewed me (still is). If they thought differently of me, like I was less than I used to be…. maybe I was less than.

    This way of thinking only made my illness scream louder at me that I needed to stop. Fibromyalgia is hardly ever on its own. On the contrary, it has a web of other illnesses that usually come with it. So pushing my mind, body, and soul beyond its limits is something Fibromyalgia does not like. When my body finally gave out on me, I had to face my illness and myself. Doing something like this makes a person go through the stages of grief.  So, one of those stages is finally acceptance, right? That is what happened, I accepted I was sick.

    Negative Self-talk

    In doing so I became very depressed. I did what I had been dreading, I felt sorry for myself. The negative self-talk was going like crazy at this point.

    • “I don’t know how I’m going to do my job anymore”
    • “I’m a horrible mother, I can’t even take my son outside for a walk”
    • “How can I finish school? I can’t! I’m going to have to quit”
    • “Why me?”
    • “I’m not strong enough”
    • “When will this end”

    I know you can relate to some of these. Honestly, this way of thinking and living can take a person down a dark path. You might be asking, “Why are you telling me all of this?” Well, friend, I am telling you to show you how deeply negative my thinking can get. So, how do I pull myself from the negative to the positive you so often see from me?

    Path To Positivity: It Is A Choice!

    Yes, I make a choice each and every time. I choose to find some light in the darkness and so can you. It takes practice and a little effort, but I’m confident you can do it. Here are some steps to help you through.

    1. Write down all the positive qualities about yourself and save this for later.
      1. Mine would be: sense of humor, kindness, wit, intelligence, & empathy.
    2. When a negative thought appears, pull out your list (if you need to).
    3. This is where you remind yourself of the positives from your list.
    1. Yes, I have fibromyalgia and I’m in pain. However, I am also funny and can laugh at myself. I got this!
    2. Yes, I am feeling depressed right now. It seems to be pulling me farther into the darkness and all seems hopeless. However, you have pulled yourself out of darkness like this before! You are strong-willed and determined and you got this!
    3. Put this on repeat (believe me it takes practice).

    How To Make Changes

    Now you may be saying this is great, but this alone can’t change my negativity. This is true. There are more tools you can use to keep yourself positive.

    1. Mindfulness – yes, meditation can help keep you focused. There are many different types of meditation available. I encourage you to pursue one and make it a daily ritual.
    2. Gratitude – I learned in my positivity psychology class, that one of the ways to pursue happiness is to show gratitude. Give it a try by writing a letter to someone you know that did something nice for you. Simply put, let them know how much that gesture meant to you and thank them. Trust me on this- it will feel good.
    3. Goal setting – You might be thinking this is where I lose you. This one will be different for everyone. Some of us are really very sick and can barely function. I know there is a goal you can set for yourself though. I recently set a goal of walking for 5 minutes every day. To those who can easily walk longer, that might not seem like much. However, to those who can’t even walk 5 minutes you know how big that can be. Making your goal small and obtainable will leave you feeling positive when you accomplish it.

    Fighting vs. Suffering

    So, are you fighting your chronic illness? Or, are you suffering from your chronic illness? This is a choice only you can make. It is personal and individual and there really isn’t a right or wrong answer. You can even do both sometimes I know I do.

    Fighting your chronic illness means that every day you choose to keep going, even when you think you can’t anymore. It means that you consciously turn your negative thoughts about yourself and your illness into something positive. Lastly, fighting your chronic illness means that you will not be its victim.

    Suffering from your chronic illness means that you let your illness control you. Don’t get me wrong, our illness always controls us in some aspect whether we like it or not. However, when we suffer, we have no choices, we are the victim.

    As you can see, in both these scenarios we have the same illness. In one we feel more in control than we do in the other. As I said before, there are days I am fighting fibromyalgia and days I am suffering from it. The difference is the way I choose to look at it, with positivity or negativity. We can’t control that we have a chronic illness, but we can control how we handle it from here.

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store