Either that or this terrible impatience and frustration and I kinda have to admit, pure anger pouring out of me is the premonition of a flare. But I have to say all I do is look around at the wreckage that is my life and get really pissed off. The dust bunnies are having babies, getting my carpet cleaned has only made it dirtier, not that I ever vacuum. The laundry needs to be done, dishwasher emptied and re-loaded, dogs need a bath and I need blonde roots on my head and the dirt cleaned out from under my fingernails. And don’t get me started on the condition of the bottom of my feet! My bills need to be paid and taxes prepped. Let’s not even mention The Crusade, the new website, our next strategy to push our fight for awareness forward. People, in general, annoy me. I am so sick of advice! I know what I need to do, I am just not doing it. I think all it does is make the advice-giver feel good, useful, needed. I try to be nice but inside I am impatient and seething. It is all I can do to not snap or even yell. It is not my job to make you feel good about yourself! But these are just people that are trying to help me! And physically I feel great! Lilac pain, walked my doggies, did my yoga. I am trying so hard to remind myself that the aftermath of my strokes last summer could have been so much worse, but that does little to comfort me or soothe the raging monster inside.
I am so sick and tired of EVERYTHING is a struggle! I recall fondly, all reality aside, a carefree youth of playfulness and passion. Of not worrying about tomorrow or caring much about today except for finding the fun. The next thing to do. Of hanging out, no plans or destination in mind. Just being. Of keeping my front door unlocked and yelling Come into every knock, knowing it is another friend coming to play, have some fun. Now I get annoyed if someone calls and wants to spontaneously come over. They upset my order, my balance of what I thought my day would be, and just suck from me the energy I need to meet my basic obligations. I am an empty well with nothing to give, and it is beginning to infuriate me! I want to learn Spanish, look fabulous, take Salsa lessons with my husband. I want friends to play with, I want my social life back! I want to go on vacation! I don’t want every ping and pang I feel to send me into a PTSD tailspin of fear that something else is going to happen to me. Fibromyalgia is going to overtake me again. Pancreatitis is going to strike. When I get a headache I don’t just get a headache, I get a fat dose of paranoia that I am going to stroke again and I constantly live on the verge of fear that I am going to die. For there are NO guarantees in life and I have felt this first hand too many times.
So all of that being said…it is up to me to fix this. When there is a problem in life you can either change the problem or change your attitude about the problem. So many of my problems are not in my control. So the attitude needs adjusting. That is in my control. I can channel this force of frustration into productivity and start fixing these little nuisances in life that are overtaking my happiness, gratitude, grace, and generosity. I can take a deep breath and stop expecting Superwomanto come back. I just don’t think she ever will. I can be kind to myself and take joy in cleaning my home bits at a time, as my body will allow, making it beautiful for my family. I can revel in bath time with the puppies, for they will not be here forever. I can be grateful that even though it is by the skin of our teeth, the bills do get paid eventually. I can live a life of intention and purpose, not chaos as though every event has swept me out to sea. I can put my faith in front of my fear and persevere. And as my favorite lyricist Eminem says in his anthem of opportunity, Success is my only option, failure is not…feet fail me not cuz maybe the only opportunity that I got.
The premise of the Gupta program is that fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) are caused by abnormalities in the functioning of brain structures that process physical and emotional threats to the body. However, connections in the brain are not fixed and can be rewired. Neuroscientists call this process “neuroplasticity”. The program was created by Ashok Gupta, who suffered from ME/CFS himself, but has since recovered.
The primary region in the brain involved is called the amygdala, a small almond-shaped structure in the brain. The amygdala interprets sensory information in order to detect potential threats to the body. If the amygdala determines that there is a threat, it triggers a response from other brain regions in order to protect the body.
However, in certain people, the amygdala may overprotect the body. Many patients with CFS/FM experience a viral infection and/or a period of heightened stress at the beginning of their illness. These circumstances put the amygdala on ‘high alert. The amygdala begins to interpret sensations in the body as dangerous (like back pain or fatigue after a virus), triggering negative thoughts in the conscious mind about these symptoms, and causing a constant, unremitting stress response in the body. This stress response causes further negative symptoms (sleep disturbance, pain, digestive issues, etc.) – setting the stage for a vicious cycle in the body, which we call fibromyalgia.
I can completely relate to this hypothesis. In the year before I developed FM, I had mumps, bronchitis, gastroenteritis, as well as back pain. Then I began an intensive graduate studies program, which caused a lot of anxiety. I quickly developed a cascade of FM symptoms, including body-wide pain, fatigue, and insomnia.
At the core of the Guptaprogram is an amygdala retraining technique. This technique involves a series of steps that focus on changing your relationship to your symptoms. Retraining includes recognizing and interrupting the flow of negative thoughts about your symptoms; changing your self-talk in a compassionate and positive direction; and visualizing health and happiness in your body.
In addition to the amygdala retraining technique, the program includes a daily meditation component, as part of the larger brain retraining focus. Meditation is, essentially, a way to practice being present. According to Jon Kabat-Zinn, a pioneer in the field of meditation and medicine, meditation is a practice of learning to “pay attention, on purpose, in the present moment, non-judgmentally.” Researchers have investigated the effect of meditation programs for patients with chronic pain conditions and found overall improvements in bodily pain, quality of life, and psychological symptoms (Rosenzweig et al., 2010). I have personally benefited from regular meditation practice by learning that most anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in this moment. Learning to be more present has helped me reduce stress and anxiety by reinforcing what my grandma used to say –– worry aboutcrossing that bridge when you get there!
The goal of brain retraining is to substantially improve FM/CFS symptoms and even recover from these devastating conditions. Is it really possible? A small clinical audit found substantial improvements in 90% of patients with CFS who attended Ashok Gupta’s clinic in London. The Gupta program website is full of success stories and positive testimonials. The program is designed for patients no matter how long they have suffered from the condition.
The Gupta program consists of a DVD program and Webinar series which includes:
a fully interactive DVD programme of 14 Training Modules with clinical director Ashok Gupta;
a comprehensive manual (which is a transcript of the DVDs), as well as worksheets and handouts
2 Audio CDs with Meditative and Breathing Techniques
a large floor chart mind map to help you “retrain your amygdala”
a Follow-up 3 Month Group Coaching Webinar Series: 12 Interactive Sessions with Ashok Gupta in the form of a weekly webinar on a weekday evening, 6pm UK time, with the opportunity to ask questions and see feedback from others
The Gupta program also incorporates a free app called ‘The Meaning of Life Experiment‘ with 30 days of free meditations. This is an excellent meditation app. Ashok Gupta guides 10 or 20-minute meditations on topics like dealing with difficult emotions, gratitude, and inner peace. This app has helped me to deepen my meditation practice and I can’t recommend it highly enough.
Before I share my personal experience with the Gupta program, I should mention an important caveat. During the five months since I began the program, I have undergone surgery and experienced complications from an unrelated chronic pain condition (endometriosis). For this reason, I do not expect to see improvements in my physical fibromyalgia symptoms at this time. (As an example, my unrelated chronic pain condition often keeps me awake at night, so it’s not surprising that I experience fatigue and brain fog after a bad night’s sleep). However, I have been surprised that my fibromyalgia symptoms have not flared or worsened despite the pain and disruption of my endometriosis.
Instead, the benefits that I have experienced are primarily in mentally and emotionally coping with chronic pain and illness. The daily meditation component has helped me to be more self-aware. What I really like about the Meaning of Life Experiment app and the meditation and breathing technique CD is that the guided meditations go beyond practicing being present. The ‘soften and flow’ and ‘surrender’ meditations have provided me with invaluable techniques for handling difficult emotions, like anxiety, that can accompany life with chronic illness. On the flip side, meditations on gratitude and cultivating inner contentment have helped me to take in the positives of small moments of enjoyment throughout my day. Finally, meditations on self-compassion have helped me to better understand patterns of negative self-talk or self-judgment. In the same vein, the amygdala retraining technique has helped me to interrupt unhelpful thought patterns like hyper-vigilance over symptoms or catastrophizing negative experiences, like having to cancel plans at the last minute. Since these negative thoughts are associated with an amygdala on high alert, I’m hopeful that breaking these cycles will help improve my physical fibromyalgia symptoms over time. Overall, I can say that I feel more positive and in control since I began the Gupta program.
The Gupta program costs $299 in the US/CANADA. One aspect I like is that if you aren’t satisfied with the DVD Home Study Course, you can return it for a full refund after 6 months, and for up to a year from purchase (minus the cost of postage and packing).
For Fibromyalgia Awareness Month, I wanted to share my illness journey here on the blog. My story starts eight years ago. It wasn’t a climactic beginning. It was just achy low back pain that got worse the longer I sat writing my M.A. thesis. It seemed like a common enough problem to have, except for the fact that I was 23. The nurse told me to take ibuprofen 24/7 and stretch. Spoiler alert: it didn’t work. About a year later, my body gradually began to fall apart, limb by limb. My back pain worsened. My knee gave out. My shoulders become too painful to allow me to type. This is what the doctors call “gradual onset”.
I thought I was losing my mind.
My doctor at the time told me all she could do was suggest Robaxacet. At this point, I was starting my Ph.D. The physical demands of reading and writing 24/7 began to take their toll, exacerbating my pain. Daily functioning on my own became increasingly difficult. My fiancé (now husband), who was living 4 hours away, had to come every weekend to help me with the chores (groceries, cleaning, etc.) that I could no longer do. In retrospect, I think the stress of the program and my fear about not being able to meet expectations, as well as not being able to understand what was happening to me, pushed my body past the point of no return. After that, I developed more of the classic fibromyalgia symptoms, like insomnia, fatigue, and digestive problems.
I was fortunate to have been referred previously to a pain clinic for pelvic pain. This meant I was able to see a pain specialist for my musculoskeletal pain within the same year all my fibro symptoms exploded. In March 2012 he diagnosed me with fibromyalgia.
I was so relieved after my diagnosis that my symptoms had been validated – and given better medication than NSAIDs. I was given tramadol, which reduced my pain, and doxepin, which helped me to sleep. But I still hadn’t absorbed yet what this diagnosis would mean for my future. After my diagnosis, it became obvious that even with treatment, no amount of accommodations would allow me to continue my Ph.D. I had tried everything I could think of so I could stay – withdrawn from my TA position, put in place disability accommodations to allow me to submit work late, bought expensive adaptive devices, and installed voice recognition software.
Feeling like my life was spinning out of control, I started having panic attacks on campus. When the spring term ended, I went back home to move in with my fiancé and decided to withdraw from the Ph.D. program.
With huge relief, I went on medical leave from my studies. However, I was immediately confronted by the problem that my days were empty of activity or responsibility. I remember dragging myself out to a local cafe in the afternoons while my fiancé was at work. I wanted the anonymity of a public place, where I could feel ‘normal’ for a while. It was the only cafe I could go to because the chairs were sensible rather than funky. Still, I had to bring my backrest with me, which generated stares from other patrons. I would cover it with my coat in order to try to hide it from attention. I could no longer type or hold a book due to pain, so I was embarrassed to be sitting at a table without a laptop or reading material, like everyone else. I listened to audiobooks or free online course video lectures instead. I would set up my tablet so that it looked like I was working, rather than listening and staring around. I envied all the other people my age, surrounded by papers, purposely tapping away on their computers. The goals that I had been pursuing were on pause, indefinitely. I grieved for my old life. I pushed myself to go to the cafe, even on days I experience brain fog or fatigue because staying home felt like giving up. I spent that year in a state of shock. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.
Gradually I started trying to put the pieces back together. When I got diagnosed with my chroniccondition all the information about exercise seemed so out of touch with the reality of my life. At the time, I had trouble bending forward, which meant I needed help with basic tasks like shaving my legs. I had trouble getting up or down from sitting on the floor. I rarely took the stairs and had trouble walking or standing for longer than ten minutes. Since I was already tired, sore, and busy then I wasn’t going to be able to go to the gym. I couldn’t afford a personal trainer. With my back pain, there was no way I could participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.
I found two at-home instructional DVDs in yoga/pilates and tai chi that I was actually able to do, which helped me to improve my physical functioning. I started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without a doubt, this is the single most effective thing I tried to improve my health and well-being. My pain decreased and my quality of life increased.
I was fortunate to be referred to a Cognitive Behavioural Therapy program by my pain clinic. I found participating in the course very valuable for learning tools to manage the negative thoughts and feelings that accompanied my fibromyalgia. One of the core parts of the program was learning to identify negative thinking traps or ‘cognitive distortions. These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves.” I learned that I tend to think in “all or nothing” terms – a cognitive distortion. I would say to myself things like “if I can no longer pursue my career, I am a failure in life”. In CBT, I learned to challenge these distortions with the reality of each situation. For example, in response to the statement above, I challenged it by saying “While being in pain means I have to do less, that does not reflect on my personal worth, nor does it mean what I can do is meaningless”.
I was also referred for a Mindfulness–Based Stress Reduction course by the pain clinic. In this course, I learned to be more mindful of the present moment. I learned that worrying about the future or dwelling on the past, only makes me suffer more in the present. It’s better for my quality of life if I return my focus to the next best thing I can do for myself at this moment. Critically, the MBSR course reminded me that, even with pain and flare–ups, there are small moments of enjoyment, if I only stop and notice them – the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. One of the key lessons I learned through mindfulness is that my thoughts, feelings, and sensations, no matter how difficult, are changeable, like the weather. When I hold on to the fact that even my darkest moods will eventually lift, I feel calmer and more in control.
In 2014 I started a part-time distance program for social work and completed the first year. But it wasn’t to be. I got a cold over the 2015 holidays and suffered the worst fatigue and brain fog I’d ever known. At the time I was just starting to look for a social work practicum placement. There was no way I could commit to working 15 hours a week out of my home. For the second time, I had to withdraw from school.
I felt completely overwhelmed at the outset of my fatigue relapse last year. First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had. Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities. Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.
My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course, there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life. I spent that winter using the time to learn new things. I taught myself calligraphy, I read, and I wrote more often on my blog.
That spring, my energy began to slowly improve. I found a kind of peace in accepting that whatever I do next, needs to allow me to work with my body and not against it. I think that’s why blogging and writing have ‘clicked’ more for me now than when I first started. I have found that grieving for your old life and finding acceptance in your new life is an ongoing process, not a one-and-done kind of thing.
Being at home allows me to respond to each day as it is. I’m fortunate to be able to stay at home. I sleep in late because without ten hours I am a brain-fogged zombie. I can’t type because of shoulderpain but I can use speech recognition software. I stretch, do gentle exercise, walk, and make sure I move around during the day. I balance my activities with self-care, which is how I am able to live more fully, even with fibromyalgia.
In the summer of 2015 I felt well enough to finally plan my (fibro-friendly) wedding. On a beautiful August day, I married the man I’d fallen madly in love with eight years earlier and who has been my saving grace through this whole journey. He didn’t blink when it came to assuming caregiving responsibilities – he does the housework, the laundry, and the dishes on top of his full-time job. He is always understanding when we have to change plans or just stay at home. Most of all he is so supportive. He celebrates the small accomplishments of my life without ever making me feel ‘less than.
I’m grateful for how I’ve grown through encountering all of the challenges that come with chronic illness. Learning mindfulness meditation and focusing on the present has given me a more helpful perspective. I’m a happier person when I remember to ‘stop and smell the roses. I feel like I’ve become more patient, more adaptable, more assertive, and more accepting than I was before fibromyalgia. I’m proud of making it through every day, especially on the tough days where no amount of self-care stops your symptoms, and you just have to hold on to the knowledge that it will pass. Everyone living with chronic illness should be proud of the strength they have developed to manage daily life.
My new motto is something I read shortly after my diagnosis – “It’s not the life you imagined, but it’s a good life nonetheless.” It’s something I hope for myself and everyone who lives with fibromyalgia.
Like an ‘invisible illness, Fibromyalgia is difficult to diagnose. The symptoms of Fibromyalgia overlap with many other chronic pain conditions, which is why receiving an official diagnosis is often problematic.
If you have Fibromyalgia, you will experience widespread pain. This may be felt throughout the entire body or could be worse in certain areas, such as the back or neck. The pain is likely to be prolonged and unpredictable; there will be times when it is more severe than ever before.
The discomfort caused by Fibromyalgia has been described as an ache, a burning feeling, or as a sharp, stabbing sensation. Most sufferers feel extremely sensitive to pain, so even the slightest bump can feel excruciating, and the intensity will last far longer than it would for a non-sufferer.
It is not uncommon for sufferers to experience the debilitating symptoms of Fibromyalgia for many months, sometimes even years, before they are formally diagnosed with the disorder. Sufferers will often find themselves visiting many medical specialists and still be no closer to knowing what exactly is causing their symptoms.
The main reason for the confusion and the misunderstanding is exactly that – confusion and misunderstanding. Many members of the medical profession openly admit to being baffled by this long-term complex condition.
Fortunately, there is no shortage of knowledgeable medical experts who can help diagnose Fibromyalgia and help to treat and control the pain. A GP will play an important role in caring for a person with Fibromyalgia. He or she can help to determine the best treatment plan, depending on the severity of symptoms.
Patients with Fibromyalgia often have other ailments too, including irritable bowel syndrome (IBS), headaches, and jaw pain. A doctor will know how to deal with each of these or recommend another healthcare professional who can help.
As Fibromyalgia has numerous symptoms, no single treatment will work for all of them. This may lead to many medical professionals being involved in the care plan, including a:
Rheumatologist: This is a specialist in musculoskeletal and autoimmune diseases, such as arthritis and gout. Although Fibromyalgia is not a form of arthritis and does not cause damage or inflammation to joints, muscles or other tissue, the symptoms are very similar.
Neurologist: A neurologist treats diseases of the brain and central nervous system. Many, but not all, understand Fibromyalgia. The pain from Fibromyalgia is what typically prompts an appointment with a neurologist who can help prescribe the correct medication to control it.
Psychologist: The distressing symptoms of Fibromyalgia and the feelings of isolation it can result in often lead to patients being referred to a psychologist who can help support with mental health problems, such as depression and anxiety.
Pain Management Specialist: The pain caused by Fibromyalgia can impact heavily on a person’s life. Patients may be referred to a specialist pain clinic where a team of physical and occupational health therapists, as well as specialist nurses, can help to treat overall symptoms.
Finding the right medical specialist who understands Fibromyalgia and knows how to treat individual cases can take time. There are an increasing number of experts who can offer the right care and support to help reduce pain, so do not be disheartened if you feel like there is currently no light at the end of the tunnel.
As experienced Fibromyalgia lawyers, we act on behalf of sufferers across England and Wales. If you now suffer from chronic pain as a result of an accident or trauma that was not your fault, then we can help you to claim compensation.
We understand that no amount of money will make your pain disappear. However, it can help you to live a more comfortable life alongside it.
If you would like to speak with a member of our approachable and friendly team about bringing a Fibromyalgia compensation claim, then call us on 0161 737 9248 or fill in our online contact form. We look forward to hearing from you.
Fibromyalgia and celiac disease are two debilitating conditions that prove to be extremely difficult to live with. Some symptoms of both conditions overlap and are very similar. In this blog, we look at the connections between the two conditions and how they may be related to one another.
Fibromyalgia is a complex, long-term chronic conditionwith a multitude of different symptoms, including widespread pain all over the body, and without a single known cause. Many people with fibromyalgia have digestive disorder complaints. Most commonly they are told that these are caused by Irritable Bowel Syndrome (IBS). The symptoms of IBS include alternating diarrhea and constipation; nausea; bloating and wind; and extreme tiredness – the same symptoms of celiac disease.
Celiac disease is a serious autoimmune disorder whereby the body mistakenly attacks its own tissue seeing it as a foreign substance. When a person with celiac disease eats any food containing gluten (the protein found in wheat, rye, oats, and barley), the damage is caused in the small intestine.
It has been reported that gluten can lead to chronic pain conditions like fibromyalgia and that some of the symptoms of the celiac disease resemble the symptoms of fibromyalgia. These include major digestive disorders; stomach ailments; chronic fatigue; headaches; widespread pain; and mental fog.
So, indications would suggest you could be presented with many of the symptoms of fibromyalgia and be suffering from celiac disease. This similarity can make gaining an accurate diagnosis difficult.
There are a few key differences between the two conditions, however. First, the celiac diseaseonly flares up when you eat gluten. It is diagnosed by a blood test and biopsy of the small intestine during a gastroscopy. The simple treatment of it is a completely gluten-free diet.
Secondly, there is one aspect of fibromyalgia that makes it distinctive. Pain occurs in eighteen specific points around the body and gets worse when someone applies pressure to these same areas. This makes it possible to distinguish fibromyalgia from other chronic pain conditions. A doctor can tell if you have fibromyalgia by performing a diagnostic test based on these ‘tender points.
Research has revealed that some patients who have adopted a gluten-free diet have seen their symptoms of fibromyalgia and IBS disappear or dramatically improve but there is currently insufficient data to substantiate this.
If you are a fibromyalgia sufferer and are experiencing symptoms associated with celiac disease as mentioned above, it is advised that you visit your local GP to discuss in further detail.
“In three words I can sum up everything I’ve learned about life:it goes on”, Robert Frost
My friend has become my guru for updates on research regarding pain. I take hope because of her personal struggles with the issues surrounding living with acceptance in lieu of catastrophizing. Daily pain is exhausting, depletes our energy, and leaves us with a sense of hopelessness. Each new symptom (and there are many) can be like taking one step forward and two backward.
How do we continue? As she says in her October 18/15 blog: “After all, life doesn’t stop just because pain is a daily companion”. The same could be said of the other myriad of symptoms we experience.
Chronic pain has become one of the leading reasons for doctor’s visits, workday losses, increases in pharmaceutical approaches for controlling the symptoms, and the emergence of Pain Clinics. Health care professionals are trying many strategies to ease the suffering of millions of those of us with a less than good quality of life.
Among them is the American law professor, Toni Bernhard, who documents her journey through the maze of adapting to and living fully with chronic illness. Her newest book is a practical and honest account of the ways in which a person living with chronic illness can turn her/his life around. As I have discussed so frequently Mindfulness Meditation is integral to her work.
It would seem that among the experts of chronic pain, the advice is very similar: exercise moderately when able, meditate, learn to say “no”, avoid being around friends and family who do not support you, and always keep in mind the idea of ‘pacing’ yourself, practice self-compassion and above all learn to live, rather than to be subject to defining oneself as PAIN! Living in the past or looking into the future is counterproductive. Being in the moment is the only way to live life fully.
It has taken me a long time to stop thinking like an invalid, rather than to acknowledge that I will live with pain but it will not define me. I will continue to do things I enjoy, with limitations, rather than waiting for the pain and fatigue to overtake me. But, oftentimes I give in to hopelessness particularly when my energy is depleted. It is somewhat difficult to accept that monitoring myself is the “new normal”.
She is the author of many Blog writes: “We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue.” (October 18, 2015). She goes on to say how complicated it is to work around what is considered to be “normal” within daily living. Life never proceeds along a linear straight path without daily fluctuations.
What is normal on a snowy, blustery, isolating day differs from a lovely autumn day when getting around outside is less problematic. Some things are beyond our control; while others are of our own doing. Trying to organize a dinner party for a dozen family friends at Thanksgiving is a major undertaking. But taking a drive in the countryside to leisurely appreciate the beauty of the day can be soothing. Yet, both are what we might enjoy, and having to exclude the one that would cause stress and anxiety might produce feelings of guilt and sadness.
This time of the year when there are such things are “scarecrow festivals” that make one smile can be just the medicine one might need.
But serving and preparing a dinner for guests can result in catastrophic thinking as one tries to be the perfect host. Yes, a gorgeous pie was made for our Canadian Thanksgiving dinner in October. Granted it was made by my granddaughter, nonetheless, the work required for a dinner of twelve can be overwhelming.
Sensibly, I was able to say that I was tired (the fatigue that only those who have it can understand) and would be the only person present who would not be doing any of the work. In the past, I would have exhausted myself trying to manage the entire affair. It takes a great deal of courage to be present at an occasion and not organize and take care of others. It takes old age to recognize that I can do both. Go for a ride to see the colors; go to a Thanksgiving dinner and sit back, watching others, being thankful we can be there and not feel overwhelmed with anxiety about how we should take charge.
After my month-long participation in June at the Pain Clinic, I slowly began to realize that those of us with chronic pain fit a profile that is very similar to one another. Many of us are prone to catastrophizing about our symptoms, often give in to depression following a bout of anxiety over some new experience of pain, and generally cannot remember that life varies often from hour to hour, certainly day today.
That there are challenges for us there is little doubt, but the term chronic implies that it is permanent, without any joy left to be looking forward to, little wonder we give in to a sense of despair. Anxiety- looking to the future with a catastrophic outlook. Depression- looking back on the past wishing we could change what we have become. It is not living in the present moment.
How many of us have fearful thoughts about the future? I do often. In Mindful Meditation seminars we are taught that thoughts are not facts. Believing I cannot ever again undertake a task that gives me joy is a challenge I face daily. We often have to compromise but sometimes the brilliant ways in which we have modified our accomplishments can be very satisfying.
I have been reading how Buddhism defines destructive emotions like passion, aggression, and ignorance. I can relate this to fibromyalgia. Unless we become the expert in our own lives we will continue to suffer from ignorance about this syndrome with which we have become afflicted. It is the inability to see the truth about our relationship to this over-stimulated central nervous system.
If we continue to treat fibromyalgia with aggression rather than kindly as part of our Self then we only exacerbate the symptoms. Without self-compassion, we will continue to treat ourselves in ways that continue to cause more suffering. Then there is a passion which is the desire for a different life than what we have. I am not a Buddhist nor an expert on philosophy, but one of the basic concepts is that of suffering.
It can be translated into anxiety or stress, the mental form of which can be suffering from growing old and illness both of which are endemic to fibromyalgia as we wonder if this pain will last forever and how we will manage it in the future. We all suffer, it is part of the human condition. However, often fleetingly, there is joy.
So, on this grey November day when the leaves have almost all fallen from the trees and we wait for the first snow (at least in my part of the world), I have to practice what I preach. Stop and enjoy some of the beauty still left from the autumn colors.
I thought I knew it all: fibromyalgia is a constant hyper-arousal of the central nervous system and all the symptoms that evolve from that disorder. But recently I met with an internist who held my hand’s palms upward and told me she would have known I had fibromyalgia just by looking at my palms which are pink! I have pink palms, which is a sign of fibromyalgia and its impact on ‘my nerves. She also commented on my pink cheeks. I was stunned. This was new to me, that this is often a sign of fibromyalgia.
So back to google again to find out more about this phenomenon. My hands ache and will hurt more as the weather becomes colder, of that I have no doubt. They ached during the heat of the summer. I have to remember to keep moving and get up when my desire is to curl up on the sofa. I rub my hands constantly with cannabis cream.
I also have a carpal tunnel in both arms and hands that keeps me awake at night. Worse is that I know surgery for a carpel will reactivate my central nervous system and I will have massive flare-ups post-surgery. I don’t know why I never noticed that my palms and the back of my fingers were very pink! I did notice that my feet were unusually soft and smooth and hurt as much as my hands.
My hands and feet ache especially when there is a weather change. The skin of the hands and feet are noticeably red in many with fibromyalgia according to the researcher Dr. Frank Rice in his study published in Pain Medicinein August 2013. The source of my blog is taken from the internet- Bottomline Inc. Very basically the research team’s theory is based upon the physiology of how some blood flows directly from arteries into veins via arteriole-venule (AV) shunts.
These valves are open and close to control the passage of blood and respond to cues from the nervous systemin order to regulate body temperature. “The parts of the body where AV shunts are most plentiful are the cheeks, nose, soles of the feet and palms of the hands”. It is thought that if the shunts are unable to function well because of excessive nerve fibers the mismanaged blood flow could be the source of widespread muscle pain. In the study they found that the” AV shunts were four times larger and had roughly two to eight times as many nerve fibers as those in women without fibromyalgia”, using various technologies as measurement tools.
Dr. Rice writes: ” The AV shunts are sites where sensory nerve fibers are intermingled with nerve fibers of the sympathetic nervous system, which is activated by stress.” Aha! This feeds into my view that those of us with fibromyalgia who suffered from childhood trauma were and are highly sensitive children/adults, resulting finally in the central nervous system developing a state of constant hyper-arousal, easily activated by stress/ anxiety, even something as seemingly innocuous as weather changes. So, let me be clear. I don’t think these nerve endings – or too many nerve fibers are the CAUSE, rather they are the RESULT.
It seems to make perfect sense to me. My cheeks have always been very red and the soles of my feet so pink and tender that people who gave me pedicures, or massage therapists exclaimed they had never seen such smooth feet before. In fact, though, they are tender and I cannot wear sandals as my tender feet burn painfully upon contact with the soles of shoes.
I have watched when others have their feet “sandpapered” as they have pedicures, and winced as I could not imagine how that would affect me! There has never been a time when I didn’t have smooth feet or pink cheeks! Imagine! I learned just recently that these were signs of fibromyalgia. I can’t believe I never noticed how pink and smooth my palms are before this.
“There is a crack in everything. That’s how the light gets in”, Leonard Cohen–Anthem
Cannabinophobia has resulted in a frenzy of political, medical, social, and cultural chaos for generations in spite of the fact that this herb has been around for 38 million years. Prohibition against cannabis usage has resulted in billions of dollars spent trying to stop its usage; hundreds of lives have been destroyed because of arrests, labeling them as criminals while governments have wasted their time trying to contain its widespread recreational use. But, it is medical marihuana specifically that I am the most interested in, and as Backes has written:
“The way to approach cannabis as a medicine is to do so cautiously, despite the fact that human beings have been using medicinal cannabis for millennia”. Physicians cannot prescribe but can authorize the use of cannabis. However, some physicians will not even do that in spite of the patient’s pain, and even worse in cases like multiple sclerosis where it has been shown to help with spasms, many will not even authorize it! For those of us with fibromyalgia and other chronic pain, as well as other conditions such as multiple sclerosis, waiting for the legalities to be sorted out means that we are expected to wait until the hysteria has subsided.
In Canada where I live the Liberal government has promised to legalize cannabis, but it is a slow process. It is likely to happen in 2017, the first of the G7 nations to do so. The government’s task force will release its report momentarily. Currently, in the US, eight states have legalized marihuana for medical and recreational purposes. With the recent US election, it is possible that all this progress may be rescinded. Only time will tell. Many want to be open-minded about the topic but it is far too often that their personal biases prevent reasonable discussions. While it is often said that religion, sex, and politics are taboo subjects to be avoided in polite company, I believe cannabis should be added to that list.
While I have many books and other reading material regarding marihuana (often spelled marijuana), The Pot Book remains among my favorite. Searching through the hundreds of internet sites, published articles, and books is an ominous task leaving the confused even more in a quandary. There is so little out there about the fibromyalgia pain, fatigue, and malaise, (among a host of other symptoms) and using cannabis for treatment, that it is a little wonder those of us with this syndrome wonder what should be done. Even this extensive book does not cover the topic and although most researchers write about chronic pain, the term fibromyalgia is not specifically used.
My view has been and remains- if alcohol, cigarettes, and prescription medications are available as a panacea for stress, anxiety, depression, and pain why not cannabis? If one can easily access cigarettes or imbibe alcohol for the social, recreational, and personal pleasure of relaxation why isn’t it the same for having a toke? Why is it legal to take a prescribed chemical such as valium (Diazepam) for example, but not an herb, like marihuana?
But, wait for a minute-an herb? I have long ago given up on herbs knowing that the myths associated with them are airy-fairy, woo, and snake oil, in fact, are unproven to be helpful. I can attest to their ineffectiveness. Why is this particular herb one which I consider to be beneficial for medicinal purposes? In fact, years ago I spent much money and time boiling Chinese herbs, not even realizing the heavy metals and other toxic substances in those concoctions and all this without any positive results.
Do people like to be deceived? Although I did not derive any benefit from them I still hoped I would. It was self-deception on my part as were the so-called ‘complimentary/alternative’ concoctions I wasted even more money on before giving upon them. They are not scientifically evidence-based. The ways in which we deceive ourselves are due to inherent biases. Most of these herbs are generally in the realm of pseudoscience. So here’s the question: why do I believe cannabis is helpful for the many ailments of fibromyalgia? Is the use of marihuana scientifically evidence-based? Are anecdotes enough for us to rely on? It is difficult to be unbiased/neutral and there are indeed unsupported assertions about marihuana, a highly contested issue.
When I first wrote about cannabinoids on this site 2019 all those years ago I explained that I had never tried cannabis for pain or fibromyalgia, nor for any other reason. I have never smoked a cigarette nor do I drink alcohol, the latter because it is too stimulating for me; it is not a moral issue. I avoid caffeinated coffee for that same reason. I simply don’t like the feeling of being out of control, my central nervous system cannot tolerate stimulants.
I have never taken a psychotropic drug, and other than Gabapentin and an occasional Tylenol I suffer through this unrelenting pain. I am not a martyr but until it was suggested I try medical marihuana I believed there wasn’t any other hope for relief and the anecdotes I was reading about cannabis seemed encouraging. When I read the hundreds of comments on these many blogs I have written over the years, I am in awe about how many mood-altering drugs people are taking for their emotional wellbeing. The pain of fibromyalgia is nonending. Why not try the unknown I thought. I was eager to try! I am considered a naïve user.
I confess to worrying I feel when people smoke cigarettes knowing that the evidence is clear, even written on cigarette packages, that smoking causes lung cancer. The tobacco that tobacco pickers made themselves from leaves burned the back of their throats. Over the years many have told me and written about the same sensations they incur after smoking cannabis, particularly from unknown sources, that is, there is more phlegm and inflammation in the respiratory system like burning, coughing, and wheezing from the heat of the smoke.
Tobacco wasn’t always regulated nor were the ingredients clearly stated on packages. If cannabis was regulated and ingredients stated before use would buyers become more cautious about from whom they were buying? Would they switch to vaporized, oils, sprays, suppositories, even the new market of pills, or edible means of taking marihuana for recreational reasons?
Or, is it the ritual, of preparing, and/or sharing a smoke that is enjoyable? Even more significant, the cost may be prohibitive for many forms of cannabis, so it is likely that those who are taking cannabis for pain are smoking. Costs must always be considered as many people with fibromyalgia have had to stop working due to their pain and cannot afford an oil or vapor and certainly not the spray. For those of us with fibromyalgia and sensitive to smoke we do have alternatives, hopefully, the costs will not be prohibitive.
In an article for CBC News, November 24, 2016, Opinion, Peter Thurley writes:” Stigma of the lazy pot-smoker hurts medical marijuana users” and the ways in which “they often give a nudge wink and say, “Lucky you, getting high on weed, eh?” He writes of the extractions (such as an oil) that “take much more plant matter to produce than other methods such as smoking or vaporizing”. The process results in higher costs.
In another CBC production, on November 25, 2016, Marketplace, alarms went off at the findings when the science-based study of four participants who were given weed to smoke to determine brain wave data after they had become high. But, it is this kind of scientific–based research that is sorely needed. Technology has allowed us to view the responses of our brains using fMRI and EEGs. We have to be able to make informed decisions. However, where is the brain research after a person has consumed a prescribed psychotropic ‘medication’?
In the last four years at one hospital in Denver, it was said that there was a big increase in the number of young clients with nausea, abdominal cramps, and vomiting due to cannabis. The data has shown that the current level of THC in weed is now 6 times more powerful than it was in the 1970s…and adolescent psychosis is an even more serious problem. It is speculated that using marihuana before the age of 25 is harmful to the brain. Yet, there is anecdotal evidence that cannabis is helpful in some cases of children with such conditions as epilepsy and certainly in cancer-related situations.
I am unhappy when I see someone inebriated or completely stoned. It is obvious that regularly drinking alcohol or toking toexcess is harmful for personal and societal reasons, as are other addictions. So now where am I on this controversial issue that has the general population in such a frenzy? Well, I have just become registered as a person who is legally allowed to use cannabis oil, taken orally for medical reasons. My fibromyalgia pain has increased tremendously since my hip replacement five months ago.
I have residual pain. Central sensitization has accelerated and flare-ups are more frequent with intense back pain from many degenerations of the lumbar spine. I have a choice: increase Gabapentin (and weight gain) or take an herb in the form of an oil. I chose the latter, despite still believing that most other herbs do not serve many purposes (although at least half of prescription drugs are plant-based, with added chemicals). I conclude after many years of reflecting and reading the science and hearing anecdotal testimonies that cannabinoid usage is helpful for chronic pain, and what is more chronic than fibromyalgia? It is not a cure but a potential panacea.
There are many internet sites, articles, and books that delve into the history of the herb, this Indian hemp plant cannabis, from which marihuana and hashish are made. For the most part, the history is written about how it was used for euphoria, or hemp itself was used in clothing and other products, rather than for medicinal/medical purposes. As a hallucinogen, it is said to have been used by the Chinese Emperor Shen Nung in 2727 B.C. (2737 B.C?, dates vary. See narconon.ca and/or deamuseum.org and/or livescience.com) who reported on its therapeutic use. Books and articles are plentiful about its history. “Cannabis is one of the oldest psychotropic drugs in continuous use.
Archaeologists have discovered it in digs in Asia that date to the Neolithic period around 4000BCE”, (Groopman, 2014). More ‘recently’, in 1839, a British doctor, William O’Shaughnessy wrote about its benefits and it became widespread for medical use, even prescribed to Queen Victoria for menstrual discomfort (Groopman, 2014).
Could this physician have imagined such a device as a gel pen filled with cannabis oil to apply locally? Or that there would be vaporizers, suppositories, oils, pills and other edibles, and even patches? That there were hundreds of slang words/terms one used that have evolved over the decades of marijuana usage? The spelling of marijuana or the terms used by users seems to men to be irrelevant so I will use them in various kinds of ways that are easiest for me to make a point.
The literature often appears to be completely two-sided without a middle ground of pros and cons about using the plant for mood-altering purposes in any form. Furthermore, whether or not it is effective for medicinal purposes has not been as carefully researched as prescription drugs. Much of the data is anecdotal. It is understandable since it is illegal in most countries. Now that several American states have legalized its use it is hoped that more participants will be willing to volunteer for larger studies without fear of repercussion, that is if the ‘new’ President does not undercut those states who have legalized it.
I am certain that Canada will lead the way in research as soon as the new year legalizes this ‘weed’. There is hardly a day that passes when the national paper ‘The Globe and Mail’ does not feature an article on marihuana. Who then will fund these studies? Will fibromyalgia sufferers be participants in these studies?
To be realistic Big Pharma might be unlikely to fund the research so the problem of funding remains an issue unless it can be shown to be profitable for the pharmaceutical companies. As a point of interest the study conducted by Dr. Mark Ware and colleagues of McGill University in Montreal in 2016, writes about the pharmaceutical development of cannabis patches for diabetic nerve pain and fibromyalgia! It is a small beginning for those of us with fibromyalgia and chronic pain. ‘Illegal’ home growers and ‘legal’ growers are of course somewhat leery about this new legalization, particularly if it is taken over by Big Pharma.
Marihuana is a social, political, and medical issue that is very complex. Growing a crop in one’s yard may be subject to criminality. The pharmaceutical companies may end up having complete control over the countries where it is legal.
The difficulties persist as most people are passionate about the topic and especially about government and/or Big Pharma’s control of the industry. Daniel LeBlanc wrote “Canada’s new legal marijuana regime is expected to feature a mishmash of provincial rules and a heavily regulated production system that will initially favor existing producers of medical cannabis, sources say” (The Globe and Mail, December 1, 2016).
It is obvious that with the issue of medical marihuana the ‘prescription’ is not precise. How is a person know which product will be effective for individual clients? How much THC (tetrahydrocannabinol) and the ratio to CBD (the second most common cannabinoid produced by the cannabis plant) is appropriate for each person? Briefly stated THC will give a person a ‘buzz’ while CBD does not. CBD has medical benefits and can counteract THC lethargy and getting ‘high’. It is used for anxiety, and pain, as an anti-inflammatory, and antispasmodic. Finding the right combination is a slow process for each individual.
Neither side is willing to be open-minded to the other, no doubt myself included. An example might be a discussion about why a drug such as a valium for anxiety is socially acceptable and legally prescribed while smoking weed is considered illegal in most countries. The opposite position could be that valium has been scientifically shown to alter a mood and the dosage is tightly controlled, whereas medical marihuana without much THC may not change such conditions as anxiety, in fact, may even increase anxieties.
Those who are definitely in one camp or the other are in the majority while those who see both sides of the argument seem to be in the minority. The entire concept is mired in controversy with passion raging on both sides of the argument. Nonetheless, health care providers are left in a quandary as to whether or not medical marihuana is effective for pain or is thought to be because of the placebo effect. That is, those compounds without much THC may help with pain, for example, but may do little for underlying anxiety. Evidence-based research is not yet as abundant as it could be, and it is not black and white. When authorizing medical marihuana physicians must use caution and it is by trial and error that one finds the right script.
It is here that I confess my own bias against any kind of invasion of the mouth, throat, larynx, and lungs by smoke, having seen many cancer patients suffering as a result of inhaling cigarette smoke. (There are others who are not in favor of edibles as they have been concerned about gastric issues and the difficulties of dosage control.) In my view, the evidence supporting either position is not definitive so our own biases are not ‘provable’ (I use this word loosely).
Some suggest that cannabis can actually prevent lung cancer while others suggest it is instrumental in causing it! Those who are pro-smoking disagree with others who say that it is equally as dangerous as smoking cigarettes. In fact, it may be more deleterious as the smoke is held longer in the lungs by the inhaler.
While science-based evidence is badly needed it may or may not help the situation if one is not open to discussion about their own point of view. It is the old idea that if marihuana is legalized it will lead to addiction and the use of dangerous drugs. A casual alcohol drinker does not necessarily become an alcoholic so that issue is a moot point.
One would have thought that California, of all the perceived laid-back states, would have legalized pot but it wasn’t until November 8, 2016, with the ‘Adult Use of Marijuana Act’ that this state ended its prohibition for those over 21. They now have what they consider to be a sensible system that treats marijuana similarly to alcohol with regulations and taxing procedures. Patients with a state ID card for medical usage will not have to pay taxes. It should be fully implemented by 2018.
However, “the state would impose a 15-per-cent tax on retail sales of pot and additional taxes on growers” (Gary Mason, The Globe, and Mail, Monday, November 7, 2016 A7). “Legalization could generate more than $1-billion in tax revenue” (Mason). As marihuana becomes legalized in more and more countries, small growers will be penalized, and the greater the opportunities for Big Pharma. It follows that the underground ‘bootleggers’ will be forced to proceed illegally.
The complexity is overwhelming. I am at this point myself overwhelmed by the amount of information I have been exposed to over these many years. I could write reams of pages on the political issues involved with legalization, for example, the legalities of driving while taking medical marihuana, using it at work, or traveling to other countries as a medical user.
While there is promise regarding the patches I cannot imagine using them for the ‘pain all over’ which affects us on a daily basis! A peculiar sight indeed! I cannot yet attest to the efficacy of medical marihuana oil for fibromyalgia and specifically for myself– stay tuned.
” Trying to eradicate symptoms on the physical level can be extremely important, but there’s more to healing than that; dealing with psychological, emotional and spiritual issues involved in treating sickness is equally important”,Marianne Williamson
I have become discouraged of late with a fibromyalgia group on FaceBook. One person asks about a particular symptom and others write in that they too have the symptom. While it helps to know that others are suffering to the same extent, it leaves the person feeling helpless and a victim of the dis-ease. This is especially so when we become focused on symptoms.
To be fair, sometimes there are often good suggestions as to how to deal with a particular issue, and for the most part, it is a forum for support, that can be comforting. But fibromyalgia is more than just a list of symptoms. Not only do we have many of the same challenges among ourselves, but there are other conditions that are alike and can define us as well. We do not have a disease, but a dis-ease and fibromyalgia is one part of a family of triplets and one other sibling.
Fibromyalgia syndrome (FMS) does not stand alone and it is important first off to discuss how these symptoms are shared with others that are labeled differently but are the same syndrome. These are the triplets:
1) Chronic Fatigue Sydrome (CFS- sometimes known as Myalgic Encephalomyelitis, or ME), 2) Post TraumaticStress Disorder (PTSD) and 3) Fibromyalgia Syndrome (FMS). Yet, there are those who try to separate these three. Furthermore, we have another sibling (which may or not be part of a quadruple, rather than ‘just’ a sibling to the other three) called 4) Multiple Chemical Sensitivities(MCS).
Many SYMPTOMS of the four are the same. The personalities of them all are: highly sensitive, natural empaths, and have a heightened ability to sense the emotions and feelings of other people, which is overly emphatic. Most importantly, it is deep-seated anxiety that defines those of us with these syndromes. While those who have MCS have a history of asthma, rashes, dry or sore eyes, rhinitis, and blocked nose sometimes more so than the triplets, sleep disturbances, joint and muscle pain, bloating, and severe itching link MCS sufferers to the triad. I wish there was but one word to call these four syndromes.
The symptoms which preoccupy people with these conditions might vary from one person to another but eventually, we usually experience them all to some degree.
Last week I read a blog on the FB page about the symptom of difficulty in swallowing. It certainly can be caused by an inflammation of the throat, it could be irritated by gastroesophageal reflux (GERD), for example. But it appears to me that when there is no known cause it is more commonly brought on by extreme anxiety; it was formerly known as “Globus Hystericus”, and it is psychogenic.
Fibromyalgia, is, after all, extreme anxiety in highly sensitive persons. Difficulty in swallowing is known to be common among those who are in the midst of great stress and panic. The many symptoms of FMS/CFS/PTSD/MCS often include shortness of breath and the sensation of a lump in the throat. The common usage of the term ‘lump in the throat is one that brings forth an image of someone who feels extreme sadness/ depression/ anxiety for oneself and others.
Another recent symptomposted on the FB page is related to “insurmountable fatigue”, in other words, CFS. I have seen the film UNREST, which is about chronic fatigue, (otherwise known to the filmmaker as ME) “characterized by post-exertional malaise”. UNREST is available on Netflix. The symptoms of CFS include physical and mental fatigue, debilitating pain, sleep dysfunction, cognitive dysfunction, sensory sensitivity, and worsening of these symptoms after even minimal exercise, along with a host of other physical challenges (sound familiar to those of you diagnosed as someone with fibromyalgia?).
I found the film to be very upsetting as it appeared to be focused on having a physiological cause for that which I consider to be psychogenic. The woman portrayed in the film tried one alternative/complementary approach after another and it seemed as though when one new one helped as a placebo effect she would consider herself better. Then after being bedridden for a long period of time she would get up, walk and hike rather vigorously, finally collapsing. It was in fact, a film intended to politicize CFS, rather than one which points out that for all these conditions a focus on symptoms is counterproductive and reinforces the idea that if one can manage this particular one, life would resume as normal.
These four conditions require certain steps which the individual is responsible for, as there isn’t a magical elixir that can be taken to cure. These are the suggestions for how to improve your quality of life:
Talk therapyand reflection about childhood and the ways in which a person was set up as a child to become vulnerable to generalized anxiety is crucial initially. This anxiety is manifested in many ways- fears, addictions- to alcohol, food, drugs, compulsive shopping/buying, and so on- one size does not fit all. When this kind of reflection is in place then the person can readily understand triggers that bring on flare-ups. It is unhealthy to be constantly looking back, but in order to move forward into the moment, it is necessary to uncover how it all began.
Light exercise, even a 5-minute walk several times a day.
Practice Mindfulness throughout the day, while eating, drinking, shopping or buying to the extreme, not planning for the future, or looking back at the past and instead live in the moment. This is perhaps the most challenging and difficult practice to undertake consistently.
Movementis imperative. Taking to the sofa or bed is not a healthy habit. Light yoga, Chi-Gong, Tai Chi or another form of movement is a way to change that plastic brain to go down another pathway other than one focused on symptoms.
Avoid stimulants such as alcohol, caffeine, and sugar. Maintain a healthy diet.
Undertake a new-to-you hobby that is creative, repetitive, and will challenge your brain in new directions. Try to avoid repeating the same hobby year after year but challenge yourself to new ones.
Avoid stressful situations with people who trigger your reactions of itching, pain, fatigue and other unpleasant reactions. If it is a family member reduce your time spent to a minimum. If you are in an abusive situation, end it.
Try to lead a more quiet lifestyle away from large crowds which overstimulate your already over-stimulated central nervous system.
Meditation practice is paramount even if it is only for a few minutes each day and increased slowly to at least 20 minutes. BREATHE!
Avoid over-medicating. These conditions are not diseases, they are syndromes that require discipline on your part, and taking too many mood-altering drugs can cause more brain fog, less desire for exercise, and dependencies.
Remember: We are highly sensitive persons, with generalized anxiety and a hyper-aroused central nervous system. No one else can help us as we are the master/mistresses of our own fate. Focusing too much on symptoms is counterproductive and never-ending!
Find a loving friend/ spouse/ therapist who will give you a massage most of all stop the intense focus on symptoms but rather practice the numerous ways in which to achieve a better quality of life. For now, I must sign off and enjoy this beautiful, sunny day in cold Nova Scotia. Stay warm, be cool!
A very new book has just been published by Carolyn Thomas: A Woman’s Guide to Living with Heart Disease, Baltimore: Johns Hopkins University Press, 2017. It is one of a kind! Finally, a book that allows the woman with heart disease or those with a family history of heart disease, to pour over it and sigh with relief as questions about the leading cause of death among women is now in print as a source of expert information. Furthermore, it is written in a style everyone can understand.
I have been following Carolyn’s blog Heart Sisters for the past four and a half years since my own heart attack. Any questions I have had about my poor little damaged heart have been answered, not by a cardiologist, but through Carolyn’s blogs. She has been my salvation these many years. We have never met face-to-face even though we live in the same country. Canada is vast. I live on the east coast, and she is on the west coast of this second-largest country in the world. But though we live thousands of miles from one another we have become friends, sort of like the pen pals of yesteryear.
When the American women’s health collective Our Bodies Ourselves first decided many years ago to acknowledge 22 women in the world who had contributed to women’s health, we were the only two Canadians to be so honored. Carolyn contacted me through this website of mine and a friendship was created. I was not particularly concerned about heart disease at the time but that was about to change. I did, however, acknowledge that fibromyalgia and heart disease had many attributes in common. Both were chronic and while one was life-threatening the other was not.
One could be treated with life-saving medications and treatments, while the other was not successfully managed with medications. More research on heart disease in general, (but not specifically for women) was available, while fibromyalgia was still regarded by many to be malingering, especially since it appeared to affect mainly women.
However, what we shared in common was that both conditions are invisible and many of the symptoms are alike. Both seriously affect the quality of life. Furthermore, in terms of the commonality of these conditions, research about women living with fibromyalgia and heart disease was sadly inadequate. But, importantly, there is a very significant difference. Heart disease is an actual disease, while fibromyalgia is a dis-ease of the central nervous system.
What has it been like for me, living with both? I seem to be constantly in a state of uncertainty. I often ask myself if this is a symptom of my heart or am I having a flare-up of fibromyalgia? Should I see my family doctor? (I don’t have a cardiologist. I was told after my labeled ‘major’ heart attack and stent, that I was “good to go” and unless something new developed my family doctor could handle any concerns I had! I didn’t receive any advice from cardiologists or nurses in the hospital before discharge, although I was given a pamphlet about diet and exercise.)
But, I don’t bother my family doctor about fibromyalgia issues as there isn’t anything she can do. I am my own expert on this dis-ease. I would, however, book a visit with her if I was convinced it was a heart issue, but I am usually unsure, so I ruminate and wait it out. Many of the symptoms of the two conditions are alike. Both can cause pain and both can have debilitating fatigue, among a host of other symptoms in common.
Dizziness, shortness of breath, increased anxiety and what they mean for me can be very upsetting. The dilemma has caused considerable angst these past four and a half years. Added to which my trusted family doctor of 28 years recently retired. He was great support for me and I don’t know the new female doctor who replaced him. So, I see a physician relatively rarely.
To add more confusion to my journey through this maze, last year I had hip surgery which in hindsight seems to be less than I had some degree of arthritis but was more than the buttock muscles of that hip had torn away from the bone. Radiating pain obviously ensued. Fibromyalgia? Heart attack about to happen? My muscles are weak as with most of us with fibromyalgia.
Some of us can tolerate small or moderate amounts of exercise while many cannot. On the one hand, I should exercise every day but if it is too vigorous it causes an intense flare–up. The hip surgery, like all surgeries for those of us with fibromyalgia, was not tolerated very well, even worse for those of us with heart disease. Walking even moderate distances is compromised. Along with aging, heart disease, and fibromyalgia, I am struggling with low energy. I say this with tongue in cheek, however, as I have a relatively busy and happy life despite constant pain and fatigue.
But, I once was a runner, then I became a walker of somewhat long distances, now I can only walk for 10 minutes and am exhausted and in pain. This fibromyalgia pain is a devil. It moves around and I know not where it will strike at any time. Lately, it has been on the top of both feet. No expert has been able to tell me why. In fact, x-rays of both feet have not revealed anything amiss. I worry because with heart disease exercise is primary, and even though I can tolerate 20 minutes on my exercise bike at least five times a week, it isn’t walking that I love, and miss most. Fibromyalgia is the most challenging in my life. Heart disease is the most worrisome.
Ah, but wait. The times are a-changin‘, as Carolyn has now presented us with excellent research, support, and recognition that heart disease in women must be more seriously addressed by health professionals and, that it generally differs from men with heart disease. And now, interestingly, with Lady Gaga, a well-known entertainer, coming out acknowledging she has fibromyalgia, the public is more aware of this syndrome than ever before.
I have been approached by two self-publishing companies since then asking if I wanted a rewrite of my old book on fibromyalgia. I have not been enticed to do so yet, as living with two chronic conditions sometimes feels like the burden is too much. It is indeed hard work. As Carolyn has written on her most recent blog, writing is an exhausting undertaking and that adds to the daily struggles.
It is not only women who have fibromyalgia but often men in the military. While those suffering from PTSD are predominantly male military veterans, they have not had the label of a ‘women’s‘ dis-ease. I have written that fibromyalgia is either an identical or a fraternal twin of PTSD and that these two syndromes and their labels are significant in terms of whether or not they are credible conditions.
I have also written about the many research findings of the ways in which to ‘change the brain’ for those of us with highly sensitive personalities who live with fibromyalgia. Fortunately, there is more than can be done for women with heart disease that is more direct and evidence-based, if only women were listened to with the same amount of attention as men.
For now, this about sums up my treatise about fibromyalgia and the denigration of this chronic pain syndrome said to be a women’s ‘neurosis’. On to a heralding of this magnificent book of Carolyn’s and the questions (and answers) that are posed. Why is it that breast cancer has gained such public sympathy and financial support, while women and heart disease, the leading cause of death in women, have remained a quiet torment for those of us living with or dying from the lack of information and treatment because we are women?
Answers to these and other questions are addressed in her blogs and the book. Carolyn and I are both white, privileged women who can speak up on our own behalf about our health issues. It is the disenfranchised, suffering women whose voices we must speak for as we walk this path with our own challenges. Neither of us sees ourselves as victims but as women who have wonderful support from family and friends.
We are not poor. We live in Canada where we have universal health care. We can afford to speak out on behalf of our sisters. In the meantime, I can gaze at the beginning of the lovely foliage in our Nova Scotia autumn and although I am in the winter of my life I consider myself fortunate to have met Carolyn online and continue to be in awe of the gift she has presented to women.
