Dear Fibromyalgia

Tag: Fibromyalgia

An in-depth guide on Fibromyalgia, covering its symptoms, causes, treatments, and tips for managing this chronic condition effectively.

  • 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.

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

    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.

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

    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.

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

    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.

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

    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?

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

    “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

  • The Weight of Fibromyalgia on My Body and Soul

    Fibromyalgia is such a complex condition. It affects you physically, cognitively and emotionally. Sometimes, if forces us to change who we are or suffer the consequences. This is where I have a hard time because I have dreams and goals and I’m not ready to give them up. Today I woke up feeling the weight of fibromyalgia on my body and my soul.

    Getting Out Of Bed

    Most people hate getting up in the morning. I know very few people that just jump right up and seize the day. It is a process, am I right? Most days are hard to get going for me, as I’m usually stiff and hurting as soon as my eyes open. I try to do some stretches in bed to help ease it but some days are harder than others on that front. So I pull myself up from lying down and sit there for a bit, trying to gain strength to move my body. The weight of myself feels unbearable.

    On days like this deciding to take a shower or not is a major decision. I think on one hand it could help loosen my muscles and relax me. On the other hand, it could take so much of my energy I might be done for the day.  I try to get up two hours before I have to leave for work so I have time to adjust to the whole mess. Then there is the catch 22 of if I’m having a really hard day it is almost impossible to get myself up that early.

    Trying To Think Through The Weight Of The Fog

    It isn’t just the weight of my body that is causing me trouble. It is my mind as well. I can’t seem to think to make a decision as simple as taking a shower or not. It is like a weight is being put on my brain and I just can’t lift it no matter what. It is days like this that I fear driving myself to work. Will I be able to react as quickly as I need to? Will I remember where I am or where I’m going? These are valid concerns that I’m sure any fibromyalgia warrior can relate with.

    This weight continues on throughout the day making finding words difficult. Sometimes I feel like an idiot as I try to stammer through a conversation where I know I sound stupid. But I am NOT stupid and you are NOT either. This is what fibromyalgia does to us though. Being cognitively impaired is a result of the weight of fibromyalgia.

    The Weight Of Fibromyalgia On My Emotions

    The impact fibromyalgia has on my emotions is sometimes greater than all others, especially on days where I have been struggling consecutively. As I have explained in my article Fibromyalgia and Mental Health, I have been battling depression my whole life. Fibromyalgia can take that depression and increase it tenfold sometimes.  The weight of fibromyalgia on my emotions plunges me into darkness and it takes a lot of strength to pull myself out. The anxiety and worry over everything get to be too much and make me more exhausted. All the while, I have to push through and go to work each day because I have to, not necessarily because I am able to.

    In the end, the weight of fibromyalgia hurts my soul. I tend to be a pessimist however, I work really hard to stay positive or at least re-direct my thoughts. My soul captures all this pain, agony, and fatigue and I have to decide what to do with it. Do I let it drag me down further? Or do I give up? Do I call out sick and lie around and feel sorry for myself? For me personally, the answer is NO!

    Breaking Free From The Weight Of Fibromyalgia

    I know I’ve painted a pretty grim picture, but it is my truth and probably for some of you reading this as well. The above is how I feel almost every day at some point during the day. How do I get through it? Well, one foot in front of the other my friend, one foot in front of the other! I feel I have no choice but to keep fighting, keep re-directing my thoughts, and keep finding ways to take the weight off of me. Here are some steps I take to pull myself out:

    • Exercise: I know with all I said, you might wonder how. Believe me, sometimes I wonder as well. I modify my exercise to the daily ability I have. If it is a tough day, maybe I just walk in place a few times throughout the day and add in some stretches. I give some ideas on how fibromyalgia warriors can exercise in The Spoonie Exercise Challenge.
    • Healthy Eating: I have found that I overall feel much better when I put whole, real foods into my body. This may seem like a no-brainer, but when you are addicted to sugar it can really be a hard challenge. In a couple articles I have given some ideas on Healthy Breakfast Ideas and also How To Start An Elimination Diet if you want to check those out.
    • Planning: This is a tough one, because you can’t always plan for a flare or know you aren’t going to feel well. I plan my meals out each Sunday and try to prep as much as I can. I enlist the help of my family in all areas they are willing. This is also often where I have a hard time as asking for help in the right way can be a challenge for me. I use my planner and write out all my responsibilities for the week. This helps with the brain fog and just keeping myself as organized as possible.
    • Meditation: Admittedly, I don’t use this one as much as I should. But, it has helped calm and center me. I like to do breathing exercises to calm myself and take my mind off my anxiety at the moment. Sometimes, when I am at work and the weight of everything feels too much, I just close my eyes and focus on my breath for a few minutes. It doesn’t fix everything but it does help get me through the moment.
    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

  • How To Re-Create Your Life After A Fibromyalgia Diagnosis

    We talk a lot about how fibromyalgia affects women but did you know that men can have it too? I want to introduce you to Ted Hutchinson, That Gaming Dad! We had a really good conversation about everything from getting diagnosed, living with fibromyalgia as a man, and advocating for our community. He not only tells us how much harder it is to get diagnosed as a man but how to re-create your life after a fibromyalgia diagnosis.

    Ted talks about what goes on behind the scenes for someone living with a chronic illness like fibromyalgia and CFS.  

    Ted explains to us that he initially was treated for “acute injuries” and it took eight years to finally get diagnosed. His symptoms started with back pain and exhaustion.  He had to finally find a doctor who had experience with fibromyalgia to get diagnosed. This is when he realized there wasn’t a simple fix he remembers thinking, “cool….we can take care of this and I get back to my normal life, right? Unfortunately, that wasn’t the case and it has been a very long road.”

    For Ted getting off the pharmaceuticals and finding holistic ways to improve his symptoms has been key. The medicine he had been on had made his life worse than they helped. He has found cannabis and Kratom to be the most helpful for his symptoms. Ted tells me that Kratom is a cousin to the coffee tree and has different strains that have different effects. Some strains help with anxiety and depression, some are like an opiate replacement, and some are a coffee strain. It can be addictive and should be used in moderation. It comes in many forms like powder, capsules, and leaves and can be digested.

     “My pain never goes away, but I can take the edge off it to at least know that I’m not going to overexert myself.”

    “I was addicted to opiates and that was something that happened through doctor prescriptions…Cymbalta! I would rather go through opiate withdrawals than ever come off Cymbalta…that time of my life was some of the worst hell I ever felt.”

    Living With Fibromyalgia as a Man

    Ted tells us what it is like when there is a stigma around the man being the breadwinner of the house. “There is a myth that men can’t get this type of illness and it just isn’t true. He goes on to tell us how he sees the issue, “You just have to re-create your life. For me as a man, it was important to just put myself out there and share my story and just explain to people why this can affect anybody, really.”

    Ted’s Advice On Living With Fibromyalgia

    I think you will walk away from watching this video and feel inspired that you can still find a way to live a fulfilling life. I have given some quotes from the video here, but honestly, they are best heard directly from Ted in the video.

    “Everyone has a path…you’ve got your own journey to go on. For me it was my gaming, my advocacy, it was sharing my story…I can still do it in this capacity, just when I’m well enough, right to be able to share my story.”

    I had to share this quote in its entirety as I felt it was so inspiring. This is Ted’s response to being asked what advice he would give someone with fibromyalgia:

    “Have faith in yourself. Have faith that you have the capacity to be able to overcome whatever it is that you have to go on. Does that mean you are going to overcome and go right back to being the construction worker or working 50-60 hours a week? Maybe, maybe not who knows. But Have faith in yourself that you can re-create a life for yourself and create things that are positive influences not only to yourself but the people around you. So, while you may get this heavy burden that has been put upon you. You have a duty to be able to take that burden and hopefully be able to lighten that own load for yourself.  You yourself don’t’ deserve to have to carry that all by yourself. There are people out there that love you and people who do support you. You just have to be able to step outside your own self and look at the big picture and have faith that you can overcome anything. Not even in a religious aspect just faith in yourself. Believe in you!”

    Advocacy

    Ted has built a community with his video gaming on Facebook. His community talks about important issues while playing. He also uses this platform to connect with his kids and bring those in the chronic illness community closer together.

    “Even if you are sick, even if you have things going on you can still make a name for yourself and you can still put your name out there and you can still make a life. It just may be a different life than you were used to.”

    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

  • Finding The Humor In Fibromyalgia

    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://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

  • How To Power Through With A Fibromyalgia Diagnosis

    How To Power Through With A Fibromyalgia Diagnosis

    Meet Hilary Neumann! She has lived with Fibromyalgia and several other diagnoses for many years. In the video below she tells her story of how she handles living with fibromyalgia. Her strength and determination to live her best life has shown me how to power through when living with a fibromyalgia diagnosis. Listen to her story below:

    Different Fibromyalgia Treatments

    Hilary has lived with fibromyalgia for twenty years and has tried many different treatments. Today, she is trying “outside the box” treatments like aqua-therapy and massage. However, these treatments are not covered under her insurance. It is important that fibromyalgia patients have treatments that are accessible, not just available. This is why it is so important that we continue to let our legislators know how fibromyalgia affects us daily.

    How To Power Through With A Fibromyalgia Diagnosis

    Hilary’s story is one I’m sure many of you can relate to. She lived with fibromyalgia for twenty years without an actual diagnosis. She sought out treatments. Really, trying anything she could to take control over her symptoms. All the while, living her life and raising her kids. The strength I saw in her while telling her story was very inspiring.

    “I’m suffering from a silent disease. I hurt every day. I hurt from head to toe. My brain fog is actually my brain hurting.”

    Family And The Importance Of Having Support

    Hilary’s husband is supportive of her illness and just like us is also frustrated by it. It is so important that we have people around us for support. It makes me so happy that Hilary has someone in her corner to help her power through with her fibromyalgia diagnosis.

    “I don’t want to be treated differently. I just want you to understand. Don’t think that I’m lazy, that I can’t do it. I CAN when I feel good.”

    Again, I want to thank Hilary for telling us her personal story. Also, for showing us that we can still live our best life, we just have to power through! If you would like to connect with Hilary you can do so through Facebook:

    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

  • Pituitary Adenoma What is Your Fibromyalgia Hiding?

    Pituitary Adenoma What is Your Fibromyalgia Hiding?

    You never want to hear your doctor say, “your brain MRI came back abnormal.” The fear and panic that go through your body at this moment are overwhelming. My MRI revealed a pituitary adenoma. I know there are so many of you out there that have gone through this same situation and know just how I felt. For those that have never experienced this, I have written this article to spread awareness.

    What is a pituitary adenoma anyway?

    According to Cleveland Clinic “A pituitary adenoma is a growth or tumor on the pituitary. Most pituitary adenomas are slow-growing and benign.” Any adenoma bigger than 1 cm is called a macroadenoma. It is interesting that some adenomas can actually produce hormones, however, mine is not doing that. Mine was detected because the adenoma is pressing on my pituitary gland preventing it from producing the necessary hormones I need.

    In researching adenomas, I found out they are more common than I thought. According to the Pacific Pituitary Disorders Center, 10-20% of the population has a pituitary adenoma and probably doesn’t even know it. I guess so many of these are so small they don’t cause symptoms. In addition, they are the third most common of all intracranial tumors. Luckily, 90% of these are benign and slow-growing, which is most likely what I have.

    Typical symptoms of a pituitary adenoma

    The Pacific Pituitary Disorders Center says that a pituitary adenoma can cause many complications.

    What led to my diagnosis?

    My journey to an adenoma diagnosis started with a visit to an endocrinologist. This doctor did the most blood work anyone has ever done on me. He tested my hormone levels and that is where he discovered that my estrogen and progesterone were very low. At first, this was a comfort to me because it explained so many of my symptoms and why I wasn’t getting any better. I was highly emotional, severely fatigued, had extreme brain fog and several other symptoms.

    It can be tricky because many of these symptoms are also symptoms of fibromyalgia. This is why it is so important for doctors to not put all of our symptoms in one diagnosis box. Too often, they are chalking it all up to fibromyalgia. Although, these symptoms will still be present with the fibromyalgia they wouldn’t be to the extent I was experiencing them and for the amount of time. This makes me so mad, I can’t even explain how mad. We really need to overhaul the United States healthcare system and doctors need continuous education! I suffered for much longer than I needed to be suffering. Worse yet, my concern was disregarded by my doctors and I was made to feel like I was exaggerating my illness.

    Tests and More Tests

    With the abnormal hormone levels, the doctor suggested we do an MRI. He told me that the best-case scenario is that I have a tumor pressing on my pituitary gland and if so it can easily be removed. Of course, this sent me into a mild panic. However, he reassures me that it is a simple procedure where they go up through the nostril, removes the tumor and that takes care of that.

    Going into the MRI and waiting for the results, I really didn’t know what I wanted the outcome to be. I know that I was kind of scared, but also really relieved that there was something tangibly wrong with me.  Anyone that has an invisible illness can understand this feeling. Seeing doctor after doctor look at you and treat you like you are faking it, can take its toll on a person. I’ve actually had a primary care doctor turn me away because my case is too complicated!

    Treating What Can Be Treated

    To address my hormone levels the doctor gave me estradiol and progesterone that I have to take in a complicated way. Well, it sounded complicated to me. I start the estradiol on day 1 of my cycle (the first day of my period), then I start the progesterone on day 15. I take both until the 25th day of my cycle, then start all over again on day 1 of my period.

    At first, I was super intimidated by my new pill schedule since I have such a hard time remembering to take my pills. By the way, I’m on my second month now and I’m actually doing pretty well at remembering (pat me on the back). So the purpose of these pills is to replace the hormones that my pituitary gland is not producing. However, like all pills, they have side effects.

    I have been experiencing migraine headaches on a regular basis and extreme menstrual cramping. I don’t know if there was a worse word than extreme- I would use it. That being said, my symptoms are improving. My extreme mood swings are getting better and I think I’m a little more pleasant to be around. The other symptoms are hard to tell because they blend in with my fibromyalgia symptoms. For instance, I am still fatigued and forget the words for everyday items I should know the word for.

    The Waiting Game

    It was a long week waiting for my MRI results with all kinds of scenarios running through my mind. What it’s like only a person with anxiety can come up with. So, it figures that I would get a severe cold with a fever and not be able to go to my doctor’s appointment for the results. I had to wait longer. I called the doctor the next Monday and we talked over the phone. The bad part of having this conversation on the phone is that your time is more limited and you don’t think to ask the questions you should ask.

    My doctor told me that the MRI shows a 3-millimeter adenoma pressing on my pituitary gland. This is too small to operate on. Typically, an Endonasal Endoscopic Surgery is done. This is where they go in through the nostril to remove the tumor. This procedure is less invasive and has a high success rate. It figures that mine can’t be operated on. Not to mention, I forgot to ask how big it has to get to operate or how long it typically takes to grow as I should have. In the meantime, he raised the dosage on my medicine and told me we will watch it every 6 months.

    How Does it feel emotionally?

    I am stuck knowing there is something growing in my brain that should NOT be there. That sucks and is scary. I am also stuck with the side-effects of my new medicine that really, I have no choice but to take. Then there is my anxiety. I have to work hard at keeping it at bay. A person who has anxiety plays the “what if” game a lot in their head, so it takes conscious effort to not play that game.

    Advocacy

    The moral of this story is if your doctor isn’t looking for another answer and checking all the boxes, then find a doctor that will. If you know there is something else wrong with you, then don’t give up. I have no idea how long this thing has been growing in my brain, but I do know for the last year I have known deep down that something wasn’t right. If any of this makes you want to get involved, then I have the perfect organization for you. Support Fibro is an organization that is dedicated not only to awareness but education. This is so important because like I said above doctors are not educated enough on fibromyalgia! I have even had a rheumatologist tell me she shouldn’t even be treating this condition. Please click the link for Support Fibro and if you are able, make a donation or find a way you can support the cause because a Fibromyalgia Warrior you love needs answers.

    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