Dear Fibromyalgia

Tag: chronic illness

Raise awareness about chronic illnesses by understanding their impact, symptoms, and the importance of support and education.

AFFLICTED…Netflix documentary reviewed

“Courage is resistance to fear, mastery of fear, not absence of fear”, Mark Twain

I have watched all episodes of the documentary Afflicted on Netflix. My mind is reeling and disturbed. I am hoping that by writing this blog I can begin to piece together my thoughts which to this point are rambling and disjointed. I have heard from one reader who has said there is a group who is writing to ask Netflix to remove it. At this point, I am neither for nor against this strategy.

For those of you who have not seen the documentary, there are seven people portrayed with four alleged conditions: Multiple Chemical Sensitivities(MCS), in one case, predominately mold, Chronic Fatigue Syndrome (CFS, otherwise known as myalgic encephalomyelitis, ME), electrical sensitivity and Chronic Lyme Disease. The term fibromyalgia has not been mentioned but the symptoms and life experiences are somewhat the same for many people.

What is prompting me to write this blog and acknowledge the distress I feel watching these seven people? What have I to say that is fair-minded, will not cause more angst for the women and men in the documentary, and will ease my own mind as I am invited into lives that are clearly filled with emotional and physical pain?

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There are those who will be angry at the physician (MD), Dr. Friedman, who suggests the difficulty with these unexplained syndromes is that they are psychosomatic in nature. The filming crew does not spend much time with him allowing his view to be aired more frequently, but paraphrasing him somewhat, he suggests the persons experiencing this trauma and taking on the sick role have become more entrenched in their symptoms without identifying that it is a psychological issue. I can’t quote him verbatim and to rerun this program is not something I am keen to do, especially since his voice is somewhat low and I could not catch most of his views. But, I believe I just reported the gist of what he meant.

I do find it very upsetting, but understandable, the myriad of treatments, including supplements that are taken by all of the seven persons. One woman is quoted as taking 55 supplements daily. The travel and treatment costs are extremely high. None of them are evidence-based, while most appear outlandish. There is a considerable strain on caregivers and the desperation and constant searching for specialists (the majority of whom are from the ‘alternative medicine’ realm) is distressing.

The self-imposed emotional and physical isolation is difficult to watch, although with one notable exception the people do go outside and seem to be mobile. I was astounded that these people were not encouraged to exercise, at least moderately, although one woman at the end was doing yoga which was very encouraging. Since most were able to walk and did not seem to be experiencing pain with walking I was filled with envy at their abilities.

Before the reader is convinced that I am not sympathetic to the endless searches of the sufferers for a cure to these invisible ‘diseases’, let me assure all that I have been there, wishing I could find a cure for fibromyalgia (FM) and chronic fatigue (CFS). Furthermore, I do not want to sound morally superior because I no longer advocate nor use any treatments that are not integral to scientific, evidence-based medicine.

I too have indulged in multiple alternative treatment modalities that were very expensive, and while at first would feel some relief from the pain and chronic fatigue, it was all due to the placebo effect and did not last. Ah, the power of the mind! All these therapists would tell me the same story, that is, that my liver was ‘stuck’ and I had to detoxify, that is, to do liver flushes.

In my view, this is a scientifically inaccurate claim. The language is similar to most of the alternative practitioners. They are paid handsomely for strategies that are part of what I believe to be voodoo science. Some in this documentary entice them to be hopeful that their treatments will work but at least in one instance the therapist suggests the woman will die if she does not comply.

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Most of the people in the film seemed to drink much water from plastic bottles, and plastic is a well-documented allergen. Water, particularly in plastic, especially if left in the heat, like the desert, cannot help but aggravate the immune system. Pets that are notorious for causing allergies were still a part of some of their lives. Therein lie many of the contraindications of our lives, sadly, mine included, if truth to be known.

People deal with their own trauma in their own ways and it is understandable that for many it is to focus on a cause that can be cured. I too have been there and it has taken me a long time to realize that the cure rests within me. Not so much an actual cure, but an understanding of the trauma of my earlier life that has affected my central nervous system to such an extent that I want to take the responsibility away from myself.

I wish so often and so fervently that a new place, a new therapist, and a new treatment could alleviate my pain, fatigue, and myriad other symptoms. Alas, it is up to me to get up from the urge to lie in bed, give up, and let others take total care of me. I make this statement on a day when I feel like I can barely move. I know the answers: meditate, do light stretches, indulge in a new activity, and most importantly, get up and walkabout. Vegetating, moving to a new town, country, or space, adopting a self-imposed diet of fewer and fewer food types, and always searching for the magic treatment is not the answer. What lies within me and yet I too struggle.

I understand the seven persons in the documentary. My advice is to not give up or give in to the false hope of being permanently ‘fixed’ by someone else. An experienced therapist who understands extreme anxiety and panic disorders can work with us to help us understand how we got to this stage, how to deal with triggers, and how to live a better quality of life in spite of the state of our amygdala.

We need to understand the neurobiology of fear. Note what Dr. Christine Blasey Ford spoke of regarding the hippocampus, which is closely connected with the amygdala and how we process fear. She too experiences anxiety and panic, yet she mastered all this by standing firm against adversity. She is my heroine. I will get up from the sofa and face the day and all its challenges.

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References:

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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06/02/2022
A pandemic and fibromyalgia

” Learn from yesterday, live for today, hope for tomorrow” Albert Einstein

I apologize to my dear ‘old’ readers of the past for not writing blogs for many, many months. I do hope that some of you are still around thinking about this site and will join me once more. I have not had much energy this past year and most of you can understand the lapse. When one sometimes cannot bear to even open the computer because of crushing fatigue all fibromyalgia sufferers can relate. Such is my only excuse.

But this worldwide crisis has inspired me to write about not only my own feelings but those who also have the ‘pre-existing ‘ condition of chronic fatigue and its twin fibromyalgia which increases our anxiety, pain, frustration, loneliness, and fear. The questions are many but the most common: is this symptom(s) fibromyalgia or CoVid19?

It is ironic that the main symptoms of this plague are exactly those of fibromyalgia. Other than a fever I frequently have all the others that are listed. How to differentiate between what is ‘normal’ for me and what is the virus? Sore throat, runny nose, headache, muscle pain- all of us experience these on a frequent basis. The onset of a flare-up is similar to flu-like symptoms.

What is to be done? More mindfulness, frequent calming videos, exercising as much as possible in the house, going out for short walks, and if possible speaking with a therapist via phone, zoom, face time, or other means. Taking up a new hobby is encouraged but if in constant pain or fatigue this often isn’t an appealing option. It is a struggle not to succumb to inertia and hopelessness.

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On the more upbeat side (if that is possible!), staying home and avoiding crowds is something our bodies yearn for in ‘ordinary’ times, so it is perhaps not as difficult for us as it is for people who enjoy a more social life. But, even then if our families living with us are not calm, quiet, and helpful during this crisis we may be overwhelmed by their constant presence.

I am one of the more fortunate ones. I live with a husband who is a caregiver. He is steady, comforting, and not prone to catastrophic thinking. In fact, my days have been more serene. Children and friends food shopped for us in the early days. Old friends have reconnected through social media and I have felt comfort away from the somewhat rushing days that I did before this self–isolation.

Its been said by so many that the world needed this rest from all the destruction caused by human consumption, air, and car travel, and consumerism. So too can our central nervous system appreciates the calm.

I am also fortunate that I am retired and I don’t have to worry about finances. My heart goes out to those who are in a dire financial state, or who live alone and are unable to find resources to help make their days easier.

I was born in the polio era with children dying every day in Canada. As a teenager, I trained as a nurse and we students were required to work for 2 months in a tuberculosis sanatorium, wearing masks, gloves, and protective gowns, always fearful we would catch Tb. Now in my old age with heart disease and fibromyalgia which compromises my mobility I have time for reflection. It is a peculiar time of life.

May 12th, the birthday of Florence Nightingale, what would she think of this pandemic? I salute my comrades as I recall the fear I had every day working with tuberculosis patients. Have we come so far from polio, tuberculosis, and other epidemics? It is time for reflection as we wait out these days, wondering what will be done by future generations? If, as I have claimed, fibromyalgia is a form of PTSD (extreme anxiety) will, even more, join us in this club of ours? It is widely thought that Florence Nightingale herself suffered from fibromyalgia.

“There is no part of my life, upon which I can look back without pain“, Florence Nightingale.

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References:

Fibromyalgia Contact Us Directly

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Official Fibromyalgia Blogs

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Fibromyalgia Stores

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05/31/2022
Fibromyalgia is a malfunctioning of the central nervous system

“Do something every day that scares you”, Eleanor Roosevelt

I have had a difficult year, even being admitted to the hospital for several days with extremely high blood pressure. Now that I’ve settled down somewhat I am beginning to slowly write about my experiences, most of which were caused by extreme anxiety. I am trying to separate myself from what happened as a result of “post-hospitalization syndrome” and rephrase my negative thoughts about myself, thoughts that become almost an obsession and cause my blood pressure to rise as the anxiety escalates.

From winter blood pressure concerns to summer I have now had hand surgery for the carpal tunnel which has necessitated less typing and more sitting still. This helps with dealing with the heat of summer, and as I sit and read I often automatically begin the meditation process in a much more disciplined way. But, those thoughts that arise usually dwell on the past and future rather than the present moment.

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The main thoughts I am trying to reformulate are the ones filled with disgust at myself for hating my body for the way it exposes my fears and anxieties, for not being brave enough to overcome panic attacks as I relive not only recent events but those of my childhood and younger years and frightfully wonder about my future. But, as usual, I go back to my oft-repeated definition of fibromyalgia– it is a malfunctioning of the central nervous system and what to do for it. At this stage of the summer, I can ride my stationary bike and just sit (mindfulness meditation) and read, letting my hands heal and my CNS experience quiet.

Just yesterday I noticed once again the new trend on the covers of at least two magazines: National Geographic and Time that featured Mindfulness. It seems to be everywhere these days and of course, it is usually advised by professionals for those with fibromyalgia. The process is discussed in so many venues and seems simple and easy enough. It isn’t. Especially because of our heightened rambling and fearful thoughts.

The three Rs within the process of mindfulness are: Recognize, Refrain and Relax. Another way of saying this is to recognize one’s thoughts, refrain from indulging in them, and finally LETTING GO and relax, the latter being the most important-not an easy process. Our minds will never be free from thinking but with meditation, we can change our thoughts. Needing to escape from the constant preoccupation with our physical and emotional pain as we sit quietly and practice we would be reflecting on the breathing aspect of our practice in order to bring peace into our lives.

REMEMBER: THE MOST IMPORTANT ASPECT OF MINDFULNESS IS LETTING GO.

I hope my old readers will remember me and are not suffering too much from the summer heat or ‘down under’ from the misery of winter.

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

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Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

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05/30/2022
Fibromyalgia and Other Pains: Living with Anxiety and Apprehension

“It’s not the load that breaks you down, it’s the way you carry it”, Lena Horne

HAPPY THANKSGIVING WEEKEND!

We Canadians are always so happy our Thanksgiving falls in mid-October when it’s harvest time; the leaves are gorgeous and in full color and if we cook a turkey it is still a long way till Christmas and we can enjoy another one before the year ends without being tired of it! What we also love is that it is close to Halloween and those sweet children with their little outfits! Autumn is so wonderful where I live!

But enough about lovely food and celebrations and more about less happy thoughts which are often self-imposed and can defeat us so rapidly.

It is easy for someone suffering from the chronic pain of fibro to catastrophize about pains that seem more unusual than the ones we live with every day. In November 2007 I began to have sore hips and after a while, the pain settled in my left hip only. It was and remains extremely painful. The saga of that hip is told here as the journey to date has been a long one. The resulting anxiety and apprehension are a struggle I have to contend with, in spite of serious attempts to be mindful of how counterproductive they are to my well-being.

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But, I let my ‘sore left hip’ overcome me until I finally had an MRI last week and found out what has been going on. Although I had seen an ortho specialist in Arizona in February and had an x-ray, in spite of persistent pain I did not have any further imaging, much to my chagrin now. I was told then that it was bursitis. Months of physiotherapy did not help the pain over the spring and summer, in fact, most movements made the pain worse.

I will tell you the end of the story now and then go back to the middle of it, because these days I don’t think in a linear fashion anyway. These words may not mean anything to many of you and they certainly did not to me. Findings: Extensive tearing of the gluteus minimus tendinous insertion on the greater trochanter. There is associated severe minimus muscle atrophy. Tendon tearing likely extends into the gluteus medius insertion on the greater trochanter.

So there you have it. Clear as mud? In short, I have a broken left butt and the pain is where the muscles insert around the hip! The pain is extensive and I am having a difficult time walking and sleeping. My family and friends are very sympathetic but they have many butt jokes to share with me. So, in spite of the pain, I do think they are clever and it is better to laugh than to cry. They aren’t being unkind. I don’t know how I injured myself and the process of recovery is going to be very slow and I am worried it will never completely recede. It is likely I did too much physical exertion moving my 90-year-old parents to an assisted living facility and tore (actually shredded) those buttocks muscles.

The point of sharing all this with you is not to delve into the actual physiology of those muscles but to share what it is like living with anxiety when something else goes awry in an already overly sensitive body. Stress, anxiety, worry, sometimes panic, and apprehensiveness can all lead to catastrophic thinking when a person is chronically fatigued. When a body is challenged by something unusual, that is very painful, the mind/brain activates the autonomic nervous system and stimulates the output of cortisol and adrenalin (see other blogs on this site about that).

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The result is that the nerve cells become ‘over excited’. While I realize that I have simplified what happens when there is a chronic stress response I do so not to dumb down the physiology of an over-stimulated nervous system, but rather to point out the vulnerability of the person with fibromyalgia when unusual stress occurs. John Sarno writes: “Pain, anxiety, and depression are not symptomatic of illness or disease. They are all part of the normal reaction to frightening unconscious phenomena”,

Those of us with this hyper-aroused nervous system of fibromyalgia realize how little it takes to activate the autonomic nervous system (ANS) and disrupt the body’s internal balance and become stuck in an over-aroused state. Needless to say, the result is unclear thinking and catastrophic thinking. So, this is what this year has been like for me. Now that I know what the ‘new’ pain is about the level of anxiety has subsided considerably. But, I fear it is, as usual, a temporary state until the next jolt to the ANS! That remains my challenge: learning to work within a world that is filled with change, often unpleasant (called ‘life’), while trying to maintain balance and avoid apprehension.

So far, the only thing that has helped me in this regard has been “mindfulness meditation”, which I have discussed in another blog. Remembering to take deep breaths would help considerably but in times of anxiety, I usually forget to do so. This all takes discipline and that isn’t easy when days are disrupted with chronic pain and fatigue, particularly when new stress circumstances arise. Still, like all of us with fibromyalgia, we keep on trying in spite of those who challenge us with their beliefs that we are ‘hysterics’ (mostly many health care professionals and insurance companies).

We have sensitive bodies, not by choice but by circumstances, maybe genetic, maybe early socialization, nonetheless we are braver than the doubters think we are. We just have to learn more about our brains and how they affect our nervous systems with those stored memories of pain! Sandra and Matthew Blakeslee write: “And being at war with yourself, even when it is all happening beneath the level of your conscious awareness, is a miserable experience”.

https://www.teepublic.com/stores/fibromyalgia-store

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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

05/24/2022
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://www.teepublic.com/stores/fibromyalgia-store

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

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Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

04/21/2022
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://www.teepublic.com/stores/fibromyalgia-store

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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

04/18/2022
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://www.teepublic.com/stores/fibromyalgia-store

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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

04/16/2022
Finding The Humor In Fibromyalgia
Meet Jessica Hooten, she is a fibromyalgia warrior who chooses to find the silver lining about her diagnosis. In this video, she tells us all about how she was diagnosed with fibromyalgia, treatments she has tried, and how she handles getting through each day. Secret: She does it by finding the humor in fibromyalgia.

Search For A Fibromyalgia Doctor

Jessica, like many of us, has had sleep issues. She has been to a rheumatologist and a sleep doctor to try to ease her symptoms. Finding treatment and answers can be difficult and Jessica shares her journey with us.

“You don’t want to have something….but can they just find something, so we know what to do.”

Finding a good primary care doctor has been what helps Jessica. She is lucky to have a doctor that is trying to understand her condition.

Fibromyalgia And Going To Work

Jessica works and tells us how hard it can be sometimes. Some days she struggles to get to work. Many of us can understand this feeling. How does she get through it? She just goes, because once she gets there she knows she will be ok. She is also fortunate to have understanding co-workers.

Day To Day Living With Fibromyalgia

Fibromyalgia has become so normal for Jessica that she often forgets that things that are going on with her are because of fibromyalgia. She states it takes her longer to heal from surgery than someone that doesn’t have it. She gives a lot of advice on what helps her day-to-day pain (so make sure to watch the video).

They tell me it is not progressive, that it doesn’t get worse, but I feel like it has.”

Staying Positive When Living WIth Fibromyalgia

How does Jessica stay positive? One way is that she and her husband joke about it with each other. She keeps in perspective that although she may be hurting, there are people worse off than her. She gives some advice:
- “You have to just accept it.
- “It’s going to be ok. You are going to have another good day…when it comes you will appreciate it.”
- “Knowing what makes you feel better and doing those things.”
- “You have to fight it!”
She has support around her and they keep it light-hearted and help her find the humor in the day-to-day struggles. She is thankful but also does get depressed. The challenge of keeping fibromyalgia in perspective is a day-to-day fight. A fight that she is willing to do with a smile on her face.

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
04/11/2022
Fibromyalgia Symptoms & Mental Health
Have you ever looked at a list of Fibromyalgia symptoms? Looking at these two websites you will see both anxiety and depression listed as symptoms. Here are two reputable websites as proof: Chronic Illness and Chronic Woman

In fact, it seems that fibromyalgia symptoms and mental health are very much linked together. One could say that fibromyalgia is like a spider web, with so many facets (co-morbid conditions) moving out from the center.

Our Mission: Connection Between Fibromyalgia Symptoms & Mental Health

Part of Our mission is to ask questions about fibromyalgia symptoms and mental health. This series is to showcase the connection between fibromyalgia symptoms and mental health. Is mental illness, in part, a cause of fibromyalgia? I wonder.

In part 1 of Fibromyalgia & Mental Health, I told you my story read that here. Now, I would like to introduce you to Cathy. She is 20 years old and is fibromyalgia and mental health warrior. I think you will be able to relate to her story and find comfort in her advice.

Tell us about getting diagnosed with Fibromyalgia.

I was diagnosed with Fibromyalgia in June 2018.

I had been back and forth to my doctor’s practice with various different symptoms for many years prior to my diagnosis. As a young teenager, I never knew why I was struggling so much and why I had so many different health issues. High school education, college education, and my social life have been affected due to my health since I was 13 years old.

It was when my mum, who has Fibromyalgia, had mentioned to me that the problems I was having were similar to her symptoms. Then I started to think that the illness had been passed onto me.

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Fibromyalgia Symptoms & Mental Health ~ General Physician

The first time I spoke about FM at a doctor’s appointment, I was told ‘Oh no, you don’t want that. There was not much more was said about it. I had a blood test and the results came back ok. I was told that it would show up there if I had FM. (later on in life, I found out this was not true).

It took me around 5 years give or take, to be diagnosed. At this point I was telling people I already had FM because I knew as my health worsened, that is what I have.

Seeking Answers

So at the start of 2018, I made a doctor’s appointment again with my GP, solely to ask him to refer me to a rheumatologist. (As a friend with FM said that is who had diagnosed her). At the appointment, I had to keep reminding the doctor that I was there to be referred to see a rheumatologist and I felt I had to pretty much beg to him agreeing to refer me to see one. He wanted me to just go back on anti-depressants and go back to counseling’.

Advocating

I kept telling him that I am struggling with the pain and had to be off sick from work and after so many years of struggling, I want to know if I do have FM, so I would like to see a rheumatologist.

He kept coming back to the ‘it’s all in your head’ comments and ‘why would you want to be diagnosed with something like that and I ended up being prescribed Fluoxetine in return for being able to see a Rheumatologist.

Not the right doctor

I never went back to see the same doctor as I didn’t feel comfortable talking to him again. After telling my mum she told me that she saw the same doctor about 30 years before and he was pretty much the same as her.

Fibromyalgia Symptoms & Mental Health~Rheumatologist

I got a letter in the post with my rheumatology appointment which was 5 months away.

The rheumatologist asked me questions about my symptoms and my history. He said that since my mum also has been diagnosed, it had been passed on to me.

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Validation

After about 15 minutes, he did some physical examinations and turned to me and said ‘Well, you definitely have Fibromyalgia’.

He spoke to me about treatment and he told me that most medication will only reduce pain by about 50 percent if it does at all. I told him I understand that there is not a lot that can be done and he also told me that I do not need to take Fluoxetine anymore as I said it had only negatively impacted my mental health and not eased any other symptom. He assured me that if I don’t feel comfortable taking medication, I don’t have to.

The rheumatologist was very informative and understanding, even though I had come out of the hospital with a diagnosis of a horrible illness, I felt I finally understood why I was different and why I had been so ill for so long.

How old were you when diagnosed with a mental illness?

Most of my time at the doctor through age 14 until about 18 was due to my mental health. I wasn’t going into high school or barely leaving the house and saw multiple counselors who told me I had depression and social anxiety.

Medication Journey

I was given antidepressants at a young age. They only ever gave me Fluoxetine tablets which made me feel numb and did not help with my symptoms. I didn’t feel I had any emotion, each time I took them and didn’t feel that specific medication benefitted me. For some reason, I was never offered anything different other than that same medication and to see a counselor. Even at times when I had said I want to try something different. It made me feel like I was just going down the same path, over and over.

The doctor who had referred me to the rheumatologist had also told me I could only be given SSRI antidepressants which I later also found out wasn’t true as I was given tricyclic ones.

Fibromyalgia Symptoms & Mental Health ~ Therapy

At the age of 18, I had seen a counselor again but as I was now an adult, I could only have 6 sessions and that would be it for the time being. I spent most of my time explaining childhood trauma to her, how I had been abused, and constantly talking to her about how I am not being taken seriously about FM. We spoke about my mental health and my emotions. I told her that every time I tried to talk to somebody about suspecting I have Fibromyalgia, whether with a health professional or not, I was dismissed.

Mental Illness Diagnosis

After the 6 sessions, she mentioned that my symptoms with my mental health sound like Borderline Personality Disorder and that she thinks I should push on being diagnosed for FM as she thinks it would help me feel better knowing.

I didn’t know much about BPD at this point, but when I researched the disorder, it felt like everything I had been battling mentally.

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How has Fibromyalgia changed your daily life?

Fibromyalgia has changed my daily life drastically.

Most hobby’s I had are now a rarity for me to partake in and feel more of a task than something fun.

I have lost many friends who were either completely rude about my situation or just unsupportive.

My Old Life

In addition, I was never able to have a career in the line of work I had studied for or wanted because it would hurt me and make me ill and flare–up. I have worked in many different types of jobs trying to find something to suit me and recently had to leave an office job due to not feeling well enough to continue.

Keeping active has always been important to me, even if it is just a little bit of exercise but when I flare up, it becomes a vicious cycle of struggling to move and even just leave the house and having to wait until I feel I am capable of trying again.

Many aspects of my life have had to be changed. Trying new options is definitely something to consider though.
- I felt better mentally after cutting the ties with people who didn’t support me
- A real friend would not question if my illness existed.
- Quality is better than quantity and if friends cannot support you no matter what then they aren’t really your friends.
I have personally come to the conclusion that this is just who I am and I try my best and do as much as I can and that is all that matters. Little positive thoughts like that can make a huge change.

Is there anything you do that helps you from going into a flare? Are you able to know what will bring a flare on? If so, please explain.

Trying not to push me into doing too much is definitely something helpful when it comes to flare-ups. In the past, I have forced myself to go out and do things that fit people could do, because I felt pressured or I wanted to feel ‘normal’. That is definitely something that made me unwell and gave me flares. I have worked in jobs before where I have pushed my body and mental health to dangerous lengths instead of just giving myself the rest I needed.

Advice

It won’t get better instantly but pacing yourself and knowing when to stop or chill makes a massive difference.

I have struggled with my weight being up and down for years but I do notice that when I am at a healthy weight, I feel I can do more and it takes away a bit of that struggle.

Reducing stress and just taking the time to have a deep breath and release the tension can make me feel a little more positive even if just for a short time.

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How has your exercise or diet changed since being diagnosed with Fibromyalgia, if at all? Have you noticed certain foods having an affect on your symptoms? If so, which ones?

I try to exercise as much as I can and keep active when I am feeling comfortable and well enough to do so. Eating well can definitely change the way you feel mentally or physically but I understand that it can be a challenge and when I get stuck in a cycle of not exercising or eating well it is very hard for me to get out of it.

Most of the time if I am not eating well it is when I have a flare–up and can’t manage to feed myself a proper meal.

How has your mental illness changed your daily life?

My mental illness affects me daily also.

Struggling with anxiety and depression affects me just as much as FM.

Constantly feeling exhausted mentally and not having any motivation can make even simple tasks seem so daunting.

Symptoms of BPD affect me also, like not reacting to most things in a manner that would seem ‘normal’ and feeling emotions so intense really messes me up sometimes.

Is there anything that you do when your mental illness flares up to help yourself? Do you feel exercise and diet helps with your mental illness, if so how and in what way?

There isn’t much I specifically do to help when I am feeling mentally unwell. I tend to take lots of rest though as if I am feeling mentally unwell, my FM symptoms tend to be heightened. I do notice that talking to somebody who has felt similar or somebody who will listen even if they don’t understand really helps me feel less isolated.

Do you feel that your Fibromyalgia symptoms and mental health are connected? (example: do you feel your depression increases with your pain or vise versa?)

I do believe that if I am battling physical symptoms, my mental symptoms worsen and vice versa. If I have a meltdown and get stressed then the physical pain can get pretty bad. And causes an FM flare-up.

A lot of the time I feel as though I can be feeling low or anxious because of my fibromyalgia. Living every day with an illness can definitely affect you mentally. I have found that many people with FM may also be diagnosed with a form of mental illness also.

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Are you on medication for Fibromyalgia? If so what and how long? Has it helped? What other medicines have you tried and with what result, including supplements?

I am currently on Gabapentin and I take Oxybutynin for hyperhidrosis.

Past Medication

I have tried Amitryptline also for fibromyalgia. The tablets I have for sweating work very well but if they aren’t taken at the same time every day can upset my stomach. Other than that, they have worked amazingly and made me feel so much better about myself. I sometimes do worry about the side effects of medication though.

The meds I have had for fibromyalgia have only been started in the past 6 months and have been low doses. I am waiting for another appointment with my doctor to discuss other treatments as I don’t feel they have made much difference to me.

Supplements

I have tried CBD oils and vaping CBD which had helped me a lot but unfortunately can be too expensive in the UK to rely on. Also, THC is currently illegal in the UK. So even though consuming cannabis has helped me more than I thought, It isn’t available as medication.

Are you on medication for your mental illness specifically or in combination with Fibro? If so what medication and for how long? Do you feel this has helped? Any past medicines you have tried and what was the result?

Currently only on medication for Fibromyalgia.

The tablets I take are ‘old school’ anti-depressants and aren’t actually prescribed for depression or anxiety anymore.

Previously mentioned I have taken Fluoxetine but it wasn’t right for me.

Have you ever been hospitalized for Fibromyalgia symptoms or mental health or both together? Please explain your experience in as much detail as you desire.

I have not been hospitalized due to Fibromyalgia.

I was in the hospital a few times when I was younger. This was due to mental health and trying to take my own life. As it was years ago, I struggle to remember full details.

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Have you or are you being treated by a psychiatrist or psychologist? Please specify the credentials of the person providing the therapy. Does your therapy include CBT (cognitive behavior therapy) if so please tell us the benefits you experience.

I am currently waiting for an appointment to start CBT.

If you are not in therapy, do you wish you were or are thinking of finding therapy? Why do you think it will help you?

I think maybe speaking to a counseller again would benefit me as I like to talk about my issues to somebody but I am not sure how CBT is going to be for me.

I don’t feel as though I will find a method of coping with my health. At the moment, I feel I am just waiting for something to come along that will help me and in the meantime, I am just floating through life.

Some days are better than others.

Do you feel your Fibromyalgia symptoms and mental health are separate from each other or connected? Why or why not?

I believe they are connected.

Mainly due to the fact that the majority of people I have spoken to with FM also struggle with their mental health. Anxiety and depression are a symptom of the illness.

Though I do also believe that my mental health would be better if I didn’t have FM and my physical health would be better if I didn’t have mental health problems.

They both affect my life but I feel coping with one illness would be easier if I didn’t have the other.

Have you ever had an MRI done that shows a difference in your brain makeup due to your diagnoses?

I have not had an MRI scan on my brain before but that would be interesting to see.

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Is there anything else you would like to add that was not already asked about fibromyalgia symptoms and mental health or that you feel would help others?

Support yourself.

Your health comes first, remember to not push yourself beyond your limits and look after your body.

If somebody is not understanding then educate them. If they don’t want to listen then they aren’t worth your time.

Where to find support

I think spreading awareness is a great tool also and social media gives you a platform to do that. You will meet some great people who you can talk to who are going through the same. They can give you tips and suggest things that helped them. Keep yourself open to new ideas.

Remind yourself that it is ok to rest!

Feel free to reach out to Cathy and leave a comment below to show your support.

https://www.teepublic.com/stores/fibromyalgia-store

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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
04/06/2022
What happens if Fibromyalgia is left Untreated?

Although fibromyalgia symptoms are often written off as being sleepy, it’s really a much more serious disorder than it seems. With over 5 million Americans over the age of 18 diagnosed with Fibromyalgia, fibromyalgia requires more treatment than just taking a nap. Finding the right treatment depends on the individual, but the risks of not treating Fibromyalgia at all can be devastating and more dangerous.

Worsening Symptoms

A major risk of leaving fibromyalgia untreated is that symptoms such as chronic pain, fatigue, headaches, and depression can worsen over time. Anxiety and mood disorders can also worsen if you don’t treat fibromyalgia. The chances of all or any of these symptoms disappearing or improving on their own, with no treatment or medication, are very slim. In fact, these symptoms can also lead to permanent changes in your body.

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Disruption of Pain Signaling

It isn’t just the symptoms themselves that can worsen. If left untreated, the chronic pain associated with fibromyalgia can lead to permanent changes in the way your body perceives pain resulting in increased sensitivity to stimuli and abnormal pain sensitivity. To prevent further disruptions in the way your body’s pain-signaling system works, it’s crucial that you seek treatment for fibromyalgia immediately.

Difficulty getting relief

The longer you wait to treat your fibromyalgia, the harder it will be to get relief from the symptoms. Research has shown that those who treat pain associated with fibromyalgia earlier react the best to certain drugs and treatments. In fact, waiting too long to treat fibromyalgia can make it more difficult to heal or experience any relief from the pain, no matter which treatments or medications you try. Alone, it’s best to develop a plan for treating and managing the symptoms you are experiencing as soon as possible.

Permanent Lifestyle Changes

Because the symptoms of fibromyalgia can become debilitating and worsen over time, especially if left untreated, you risk permanent lifestyle changes. The pain, headaches, and depression likely won’t allow you to stay used or take part in day-to-day activities. These types of changes also affect your family members and relationships. When dealing with fibromyalgia, the worst thing you can do is ignore it and hope it goes away.

Fibromyalgia is a difficult and complicated disorder to live with and is even harder to explain to friends and family, or those without fibromyalgia. It’s important that you remember you aren’t alone and are diligent in taking every step possible to treat the symptoms the best way you can. Waiting and leaving it untreated can only lead to negative results.

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

03/01/2022