Your Mindful Guide to Surviving The Holiday Season With a Chronic Illness

Celebrating the holiday season presents many challenges for people with chronic illness, which can be very stressful. I’d like to share three easy mindfulness practices that have helped me to not only survive the holiday season, but get the most out of it. Mindfulness  is a practice of “paying attention, on purpose, in the present moment, non-judgmentally.”

Your Mindful Guide to Surviving the Holidays

It’s early December and that means we’re about to crash straight into the holiday season. As the shortest days of the year approach, many of us are anticipating gluttonous feasting, exchanging gifts, enjoying the company of family and friends and celebrating everything we have to be grateful for this year. Others are also anxious about the hectic schedule, financial strain or encountering certain crazy relatives (most families have at least one).

Chronic illness can complicate the holiday season further. Some people with chronic conditions feel like their family members don’t fully understand their limitations. Even the pressure to “just stay a little bit longer” or “pop by for a short visit” can cause us to push through when we really need to pull back – often resulting in a flare later on. If there are underlying conflicts with family members or friends, then spending a lot of time together attempting forced cheerfulness can also add stress. Constant fatigue, brain fog, food intolerances and pain can make frequent, large get-togethers focused around eating quite challenging, to say the least! Somehow we’re supposed to do it all without crashing from fatigue, badly flaring or getting a virus.

How To Get the Most Out of the Holidays By Using Mindfulness to  Manage the Stress

The consequence of having too much to do and too little time to do it in is stress. The symptoms of emotional and cognitive overload that accompany stress worsens chronic illness and  is a real challenge to manage this time of year. Emotional stress symptoms include irritability, anxiety, and low mood. Cognitive overload results in having trouble remembering things, difficulty concentrating, indecisiveness and constantly ruminating on what’s bothering you. If you find yourself feeling this way during the month of December, you’re not alone! My question this time of year is: how do I get through all of the challenges in order to be able to enjoy the holiday season?

I’ve come across many helpful posts challenges written by bloggers with chronic illnesses explaining how we can pace ourselves through the holidays, delegate responsibilities, adjust expectations and mitigate potential challenges. I’d like to contribute one more strategy for surviving the holiday season with a chronic illness – mindfulness.

I’m not talking about anything new-agey, religious or fringe. Mindfulness is a practical, evidenced-based approach to managing stress and reducing the symptoms of chronic illness. According to Jon Kabat-Zinn, a pioneer in the field of mind-body medicine, mindfulness means “paying attention, on purpose, in the present moment, non-judgmentally.”

Meditation is a way to practice being mindfully present. During meditation, the aim is to focus our attention by concentrating on a particular object, like breathing,  scanning the body, or repeating a mantra. Inevitably, we lose focus and become distracted by thoughts, worries, plans or emotions. When we realize this has happened, we gently bring our awareness back to the present moment – this breath, this moment.

“That sounds great,” you might say, “but the last thing I have time for is learning mindfulness meditation right now.” Do you have five minutes a day to watch television? Then you have five minutes to sit and listen to a guided mindfulness practice. Just sit. Just breathe. Just listen. That’s it. Here are three easy mindfulness practices that have helped me to not only survive the holiday season, but get the most out of it.

1) Take A Mindful Pause

One of the first casualties of a hectic schedule is time to process your experiences. The brain needs rest so that it can effectively take in information, process emotions and make good decisions. Otherwise we can become mentally and emotionally overloaded by trying to push through the stress and get on to the next thing. Mindfulness is a switch from the ‘doing mode’ (thinking, planning, worrying, shopping, baking, visiting… you get the idea) to the ‘being mode’ (think watching a sunset or savouring the taste of a great meal). Taking a few mindful breaks throughout the day gives us the mental rest we need to prevent becoming overwhelmed.

A mindful break can be as little as 1 minute but is usually 3 to 5 minutes. It involves intentionally shifting your attention to just sitting and breathing in the present moment. This year I’m planning on incorporating these pauses into my day. If I’m visiting, I might take a few extra minutes in the washroom just to breathe. Even if there’s nothing I need to do on a particular day, mindful breaks can still help reduce anxiety about future tasks and plans I’m worried about, by bringing me back to the present. The Free Mindfulness Project offers a number of excellent guided mindful pause meditations to download (as well as longer mindfulness meditations).

One of my favourite meditation teachers finishes his guided mindful break meditation by asking “what’s the next best thing you can do for myself right now?” Sometimes you can’t solve all your future worries but you can do something to improve things right now, such as making a cup of tea or delegating a task.

2) Put Love & Kindness at the Centre of Your Holiday Celebration This Year

Every year I face a battle with my own expectations about what the holidays should be like. It’s very easy to internalize expectations about what you ought to be able to do and feel guilty if you can’t live up to those self-imposed standards. Maybe you wish you could give your kids the perfect Christmas morning, go to every holiday party you’re invited to or cook the perfect traditional meal for your entire extended family. When you have to cut back on your activities, it can be hard to feel like you’re letting down some of the people you care about most in order to look after your health.

Unrealistic expectations, whether internalized or externalized, only cause unnecessary stress. Instead of trying to have a holiday worthy of a Lifetime movie, what if we refocus our energy on putting love, kindness, gratitude and giving at the centre of our celebrations? These practices can be incorporated into traditional family celebrations – like this idea of having each family member dedicating an ornament to something they are grateful for before hanging it on the tree.

But how do you stay in the spirit of the season despite the pressure of expectations? The ‘loving-kindness meditation’ can help you deepen compassion, and increase your feeling of connectedness to the people around you. In the guided meditation, we are invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their health, happiness and well-being (“May they be happy, may they be healthy, may they be free from suffering, may they be peaceful”). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to ourselves – a powerful and important component of the practice, especially if we are feeling guilt over our limitations. Here is an additional guided practice, along with the script, from Mindful Magazine.

3) Take in the Good

Are you more likely to remember compliments or criticism?  If you’re like most people, you pick the latter.  That is because the human brain has a built in “negativity bias”, which allows us to learn from and protect ourselves from bad experiences. Unfortunately, it can also make us stressed and anxious. During December, I often spend most of my time worrying about how I will make it through all my plans . Once it’s over, I sometimes feel like I’ve missed out on enjoying the best moments because I was worried about the next thing. One way to rewire your brain so that it takes positive experiences into account, along with the negative, is to be intentional about what Rick Hanson calls “taking in the good”. This is akin to the old saying to “stop and smell the roses”. But exactly how do you go about making this a habit?

The first step is to be mindful of positive moments (to notice the roses) – the warmth of a good fire, sharing a laugh with loved ones, the taste of turkey and mashed potatoes. Practicing mindfulness meditation can help with this part, but you can also just start with the intention to take in the good today. Second, pause for 20-30 seconds and focus your attention on savouring the experience, instead of moving on to the next thing. Then, let the positive experience sink into you.  You can do this by visualizing a warm feeling spreading through your torso or by mentally recognizing that by doing this exercise you’re rewiring your brain to tilt towards positive experiences.

If you do this several times a day, you can change the neural pathways in your brain so that positive experiences are ‘registered’ more in your overall outlook on the day.  This practice has been really helpful for my mental and emotional health while I deal of the challenges of chronic illness. Sometimes symptoms get in the way no matter how much pacing or stress management we practice. This can be disappointing. But I have found that taking in the good and enjoying the small moments really helps me to balance out the disappointments. One year I was too sick to leave home and had to miss Christmas Day with my family, but eating homemade cookies at home, with the tree lit up, while watching a Christmas movie was still a nice, cozy evening.

 

 

Fibromyalgia Fatigue: The Top 8 Supplements I Take to Improve My Energy

Fatigue is a disabling symptom of fibromyalgia – but I have benefited from several supplements which improve my energy. This article explains the difference between adrenal and mitochondrial energy supplements, how they work and what the research says.

This post contains affiliate links, which help support this blog. I only link to products that I use and like – my opinion has been in no way influenced by the makers of the products I recommend.

Tart Cherry

My Christmas present one year was an evil cold. I had been lucky the past several years not to encounter any viruses. After reading about the  negative experiences of other bloggers with FM or CFS who have caught a flu or a cold, I was nervous about the potential consequences. My worries were realized when, after my other cold symptoms cleared up, the extra fatigue didn’t disappear too. My fibro fog and afternoon fatigue were the worst I had ever experienced!  I spent the months after trying to figure out how to recover my energy to my baseline level.

Prior to this cold, my ‘energy envelope’ consisted of:

  •  required 10 hours of sleep
  • most energetic in the late a.m. and evening, lowest in the afternoon
  • able to do 3-4 hrs of blogging per day
  • able to spend one evening per week out

Now, even 11 hours of sleep was unrefreshing. I had to drop my classes because of afternoon crashing. The strangest symptom was visual over-stimulation – for example, difficulty making sense of store displays during an energy crash. My acupuncturist explained my post-viral fatigue as a failure of my body to turn off the sickness response. In other words, your body makes you feel tired and achey when you get sick to induce rest, so energy can be redirected to your immune system. Usually that response stops when you get better, but sometimes your body fails to ‘flip the switch’ from sick mode to healthy mode.

In the last few years I have discovered that my energy is impacted by two primary factors – adrenal function and mitochondrial function. The challenge is to figure out how to best support energy production in your body, both at the cellular level (mitochondrial) and organ system level (circadian rhythm and/or adrenal fatigue).

Adrenal Glands and Energy Production stop scrolling down

In a previous post, I wrote about the results of my adrenal function test. The adrenal gland regulates the production of several critical hormones, including cortisol and DHEA. Cortisol, also known as the ‘stress hormone’ is produced by the adrenal glands (glands that sit on top of the kidneys). Cortisol regulates many of the body’s responses to stress, including blood sugar levels, metabolism, immune responses, blood pressure, and central nervous system activation. Although high levels of cortisol are released, alongside adrenaline, to initiate the ‘fight or flight’ response to stressful situations, it also plays a role in day-to -day functioning. Cortisol is released in the morning to help you become alert and focused. It is supposed to decline gradually during the day so that by evening you feel sleepy and ready for bed. Proponents of the theory of ‘adrenal fatigue’ argue that initially, in stressful circumstances,  adrenal glands overproduce cortisol. But if a high-stress situation persists over time, the fatigued glands begin to under-produce cortisol, resulting in low daytime levels and worsening daytime fatigue (Life Extension: Stress Management).

The results from an adrenal function test show that my cortisol curve is all off. I start the morning at the low end of the normal range, but then my cortisol slumps significantly by mid-afternoon, and finally increases to the high end of the normal range by bedtime. These results explain my mid-afternoon crash and energetic evenings (not to mention insomnia). According to my naturopath, this pattern of low daytime cortisol and high nighttime cortisol is characteristic of a disordered circadian rhythm in some people with fibromyalgia.

So how can you improve your overall energy by supporting your adrenal function?

  • Vitamin C and B5 (Pantothenic Acid): Both of these vitamins help promote adrenal function. They are inexpensive and provide a good foundation for re-balancing cortisol production. Vitamin B5 is a lesser known but still important member of the B vitamin family and it is used for energy production in the body. According to Dr. Teitelbaum, “your body’s highest levels of vitamin C are found in the adrenal glands and brain tissues, and the urinary excretion of vitamin C is increased during stress” (From Fatigued to Fantastic p. 90). Vit C formulations can be more or less potent and come with or without added antioxidants. I like Natural Factors Extra C + Bioflavonoids.
  • Licorice Root Extract:  In order to try to sustain cortisol throughout the afternoon to prevent the usual crash, I added licorice tincture on really tired days. It helps slow the breakdown of cortisol in the body, so whatever you do produce stays around longer (Life Extension: Stress Management). (Licorice is not for people with high blood pressure, so please check with a health care provider to see if it is appropriate for you and do your research first). I prefer to use a liquid extracts/tincture because I can tailor the dose – I found the average capsule dose made me jittery but with a liquid I can take just a few drops. Dr. Teitelbaum recommends the equivalent of 100 to 150 mg daily.
  • Time Release Melatonin: In order to improve my circadian rhythm, I added 5mg of sustained / time release melatonin at night.  Melatonin reduces cortisol, so it helps me with my elevated night-time levels (Life Extension: Stress Management). This stuff is quite effective! I have been sleeping through the night more regularly since I added this to my night time pill regimen. (I found regular melatonin did not have this effect).
  • Rhodiola: finally, I am also taking Rhodiola to support my nerve and endocrine system functions. Rhodiola is considered to be an adaptogen, and studies demonstrate that taking this supplement improves stress tolerance by “influencing key brain chemicals, such as serotonin and norepinephrine, and natural feel-good opioids such as beta-endorphins” (Life Extension Magazine: Rhodiola).  Rhodiola helps to promote mental focus and energy – key for those of us with fibro fog!

Fibromyalgia and Mitochondrial Function: Improving Energy One Cell at a Time 

Secondly, mitochondrial function is a critical part of increasing energy in fibromyalgia. Mitochondria are the power plants of our cells.

Studies suggest the energy factories may be running a bit low in FM. Muscle biopsies have found patterns of mitochondrial dysfunction (abnormal mitochondria, mitochondrial defects and muscle fiber abnormalities) similar to those typically found in mitochondrial disorders. Some skin biopsies have shown patterns of neurogenic inflammation and oxidative stress – two factors that negatively impact the mitochondria. Peripheral blood cells have demonstrated CoQ10 deficiency, mitochondrial dysfunction, oxidative stress and mitochondrial degradation (Health Rising: Is FM a Mitohondrial Disorder?).

I’m trying to take a combination of supplements that are factors used by mitochondria in the production of energy.

  • D-ribose:  D-ribose is a sugar produced in the body and taken to alleviate fatigue and pain in fibromyalgia and chronic fatigue syndrome. Dr. Teitelbaum contends that CFS/FMS is caused by “energy crisis” in the body, leading to a cascade of different symptoms like fatigue, pain, sleep disturbance, among others. One root cause of the energy problem, he argues, is that the ability of the mitochondria in your cells to generate energy is suppressed. Mitochondria produce the energy, called ATP, used by your cells to carry out all their functions. D-ribose is essential to the production of ATP. Therefore, taking additional D-ribose should help to support mitochondrial function and improve energy output in fatigued patients.  Dr. Teitelbaum has authored a few pilot studies that have demonstrated some promising results. The most recent study was an open-label study published in 2012. Significant improvements were found; specifically a 61.3% increase in energy, 37% increase in general well-being, 29% improvement in sleep, 30% improvement in mental clarity, 15.6% decrease in pain (Teitelbaum: From Fatigued to Fantastic).
  • CoQ10, a powerful antioxidant, is the catalyst that enables mitochondria to produce 95% of all cellular energy (in the form of the compound ATP). A Spanish research team has conducted several studies that demonstrate a CoQ10 deficiency in people with fibromyalgia, leading to mitochondrial dysfunction and increased oxidative stress. These researchers have also found that supplementing with CoQ10 improves clinical symptoms of fibromyalgia like pain, depression and fatigue (Phoenix Rising: CoQ10).
  • Acetyl-L-Carnitine, is an amino acid produced in the body from l-carnitine which is used to manufacture fuel for energy via mitochondria. This nutrient is also used in bodily processes that regulate muscle movement, as well as heart and brain function. People with fibromyalgia have been found to have low levels of carnitine. Supplementing with acetyl l-carnitine has been found in a double-blind placebo-controlled study to improve pain levels, depression and quality of life among people living with fibromyalgia (Prohealth: L-Carnitine).

Since starting this combination of adrenal and mitochondrial support, my afternoon crashing has evened out. My fatigue does not bottom out in the afternoon (less brain fog and no visual over-stimulation). I finally regained my pre-viral energy envelope. I am sharing all of this in the hope it gives some direction to others finding themselves in a similar situation! Take care of yourselves, dear readers!

 

Life Extension (Rhodiola)

Life Extension (Stress Management)

Health Rising (Is FMS a Mitochondrial Disorder?)

Phoenix Rising: (CoQ10)

Prohealth (L-Carnitine: Typically low in fibromyalgia and ME/CFS; Promotes healthy mood and energy)

Teitelbaum, J. (2007). From Fatigued to Fantastic. Penguin Books: NY.

Why Your Diet Isn’t Working & What You Need to Know About the Power of Personalized Nutrition

Weight loss is a challenge, especially when you have a chronic illness. Here’s how learning about the importance of personalized nutrition helped me and my family reach healthy weight goals.WHY YOUR DIET ISN'T WORKING

After a gluttonous Christmas one year, my husband and I looked at ourselves and decided we had to go on a diet. Things had been spiraling downward for a while. The primary factor was that I had been diagnosed with a chronic condition the year before (fibromyalgia). Pain and fatigue made cooking healthy or moving more just seem too difficult. In my husband’s case, catered meetings at work meant one too many many muffins. So we went on a plant-based, nutrient dense diet. I lost weight, about 20 lbs., and kept it off. My husband did not – even though he swore he only looked at the muffins. How does that work?

The answer lies in the fact we each have a unique physical and genetic makeup. A 2015 study investigated post-meal glucose levels in 800 individuals over the course of a week. They found significant individual variation among the participants in the blood glucose levels caused by different foods, even when they ate the exact same, standardized meals. For example, in one participant sushi caused their blood sugar to rise higher than ice cream, while another found that healthy tomatoes spiked her blood sugar.

Researchers attributed this variability to a combination of physical makeup (weight, blood pressure, etc.), lifestyle and gut microbiome (the unique gut bacteria in our digestive tract). In fact, an algorithm based on these factors was able to accurately predict personalized post-meal glucose reactions to specific foods. Using this information, researchers designed individual nutritional recommendations that eliminated the foods that caused high glycemic reactions, which led to overall lower blood sugar levels among study participants.  It is this individual variability that explains why one of your friends is trying to convince you to eat like a carnivorous caveman to lose weight (hello, Paleo), while another swears that rabbit-food veganism is a game-changer. Essenially, different people respond differently to different diets. My husband found a high protein, low(er) carb vegetarian diet worked for him. He needs high protein dairy options like greek yogurt and cottage cheese, while I don’t.

Another example of individual variability in nutrition is sensitivity to dietary cholesterol. For most of us, the liver produces 85% of our cholesterol and the rest is acquired from our dietary intake. If we eat a cholesterol-rich meal, our body responds by manufacturing less cholesterol to maintain healthy blood levels. However for about 30% of people, their sensitivity to blood cholesterol is blunted, leading to problems regulating healthy levels. For these individuals, if they eat cholesterol-high foods, their blood cholesterol goes up because their body fails to sufficiently reduce how much cholesterol is manufactured in the liver. These people are at an increased risk of having high cholesterol.

As you might expect, research into the relationship between our individual genetic makeup and our nutrition, called nutritional genomics, is a rapidly expanding field. Lactose intolerance is one example of how genes can affect your reaction to food – certain variations of specific genes confer lactose tolerance, while other variations cause intolerance. Many researchers argue that personalized diets are the future of nutrition, rather than broad dietary recommendations or one-size-fits-all diets. However, the application of these research insights are not yet widely available to enable people to develop an individual diet based on factors like genetics, physical makeup, and gut microbiome.

One step everyone can take to personalize their diet is to try an elimination diet, which will helps to identify food intolerances and sensitivities. A food intolerance is a nonallergic reaction that causes negative bodily symptoms like digestive problems, skin irritation and fatigue. Food intolerances can cause inflammation of the digestive lining. If one diet plan is not helpful, then consider trying another, until you find what works best for your body. Here is a list of the three best diets for fibromyalgia, according to science (vegetarian/vegan, gluten-free and FODMAP free), as well as helpful resources to get started.

The good news is that there is one diet plan that is always good for you. What is that diet? Eating whole foods. Not necessarily raw, organic, GMO-free or local foods (although there are lots of good reasons to choose some of those options too). Whole foods mean food as close to their natural state as possible – carrots in the earth, grapes on the vine, or fish in the sea. Real foods are not processed, refined, added to, fortified, or otherwise messed about with by a food chemist. This is the one diet you can’t go wrong following.

References:

Dr. William Sears. Prime-Time Health (2010): http://www.amazon.com/Prime-Time-Health-Scientifically-Proven-Feeling/dp/0316035394?ie=UTF8&*Version*=1&*entries*=0#

Nutritional Genomics and Lactose Intolerance http://nutrigenomics.ucdavis.edu/?page=information/Concepts_in_Nutrigenomics/Lactose_Intolerance

Zeevi, D. et al. (2015). Personalized Nutrition by Prediction of Glycemic Reactions.  Cell. 163(5), p. 1079-1094.

Chronic Illness and Money Pain: The Honest Truth About Coping with Lost Jobs, Less Income and a Tight Budget

 

Chronic Illness and Money Pain: The Honest Truth About Coping with a Lost Job, Low Income and a Tight Budget

Chronic illness hurts all over, and that can extend to your budget. It’s not polite to talk about money, and that can lead to a cone of silence around this difficult subject. When I developed fibromyalgia five years ago, I was forced to leave my graduate program because I could no longer keep up. In the process, I lost my scholarship and my teaching assistant position. Now my husband and I live on a single income. I think it’s important to be open about how illness and disability impact income. First, it is vital to break down the stigma that ‘people who live on a reduced income are lazy.’ Second, I think it can be helpful for people living with long-term health problems to share their experiences and support each other with advice on how they cope with the challenges of life with illness.

Unfortunately, my inability to work is far from being an exception.  According to a Community Health Survey, 14% of people with fibromyalgia report being permanently unable to work (Parlor, 2007). That rate is 25% for working-age people with arthritis (Arthritis Society, n.d.). In Canada, only 51% of working-age people living with a disability are employed, compared with 75% of non-disabled working-age people (CCD, 2013). In addition, people living with a disability are two times more likely to work part-time than non-disabled people (CCD, 2013).

Not surprisingly, the reductions in employment levels among people with illness and disability lead to reductions in income. For example, 43% of people living with fibromyalgia reported their annual personal income to be below $15 000, compared with only 29% of the general population (Parlor, 2007). Overall, 20.5% of Canadians living with disabilities live below the poverty line  (CCD, 2013).

In addition, there are out of pocket medical expenses. This is bad enough in Canada, my home country, where many people may not have extended health insurance for medical drugs or treatments like physiotherapy or massage. In the U.S., there is no public medicare (national health insurance), so the medical expense of just seeinge a doctor can be prohibitive. The CDA (2013) reports that, in the U.S., medical problems are behind 62% of personal bankruptcies and almost 50% of home foreclosures.

Finally, for those who qualify for social assistance, income support is severely limited. In Ontario, Canada, the maximum financial support for a person living with a disability is $1151/month, for all expenses (Community Living Ontario, n.d.). In the U.S., the average monthly benefit for a family paid by Social Security Disability Insurance is $1,130 (CDA, 2013). Since this amount would barely cover rent and food, it is hard to imagine how anyone could even begin to pay for vital medical expenses or enjoy any quality of life.

Those numbers can look pretty bleak and do not capture the strength and resiliency shown by so many living with chronic illness!  It is important for those who do not live with chronic illness to understand that we work harder than anyone you know, everyday, to manage debilitating symptoms, earn a living if we can, participate in our family and social lives, and advocate for ourselves and others.

If your politics tells you that social assistance should provide only survival support for medical and living expenses in order to “incentivize” recipients to work harder, then you are condemning to poverty people whose only ‘crime’ has been to develop a chronic illness. Working harder is not a cure fore a chronic disease or permanent disability. I believe a compassionate and farsighted society should provide adequate medical and income support to people living with illness and disability, because inequality wastes human ability and restricts the freedom of people to participate fully in society. Appropriate accommodations can be put in place so that we can work, including flex hours, remote work opportunities, and many others. We all have something to contribute, and many of us would be able to do more if adequate social supports were put in place.

I’ll get off my soap box now. It’s time to get practical. Since we are where we are in terms of reduced income for people with chronic illness, what can we to do?

  • Build a budget. No matter how limited, every dollar will stretch further if we spend it on what we need. For a simple and practical approach, I like using Gail Vaz Oxlade’s budget builder http://www.gailvazoxlade.com/resources/interactive_budget_worksheet.html
  • For your weekly expenses, use cash! If you also suffer from brain fog, then you will sympathize with how hard it can be to remember how often you swiped your plastic this week. If getting out to the bank is a hassle, then get cash back at the grocery store, so you can do two chores in one.
  • Put your cash in labeled jars or envelopes, keep your receipts, and record your expenses. Clear glass jars work best for me. My budget jars are labeled: groceries, entertainment, drugstore, pet, clothes, transportation and allowance:  http://www.gailvazoxlade.com/articles/budgeting/magic_jars.html.
  • Don’t be too proud to get the help you need. Whether asking for financial advice, applying for social assistance, buying second hand, or going to a food bank if the fridge is bare, remember this isn’t your fault and you deserve the best quality of life possible.
  • Coping with debt and bankruptcy when you have a chronic illness, by Lene Andersen https://www.healthcentral.com/article/when-the-money-runs-out-chronic-illness-and-bankruptcy
  • Here is some advice on winning your fibromyalgia social security case, by Donna Burch: http://nationalpainreport.com/winning-your-fibromyalgia-social-security-disability-case-8831202.html
  • If you are interested in extra ways of making money from home, here are a few resources from Being Fibro Mom:     http://www.beingfibromom.com/category/financial/make-money/

References:

 CDA (2013) Disability Statistics

CCD (2013) Low Household Income and Disability

Parlor (2007). Canadian Women’s Health Network: Understanding Fibromyalgia

Community Living (n.d.) ODSP

Arthritis Foundation (n.d.) Arthritis Facts

Arthritis Society (n.d.) Facts and Statistics

 

Optimism and Chronic Health Conditions: Is ‘Think Positive’ A Cure, A Daily Boost, Or A False Promise?

Having a positive attitude will not cure you. Saying otherwise to people living with chronic conditions invalidates their experiences. But cultivating optimism can improve your quality of life, and help you to live better with a long-term illness.

Optimism and Chronic Illness

Are There Negatives to ‘Think Positive’ Advice for People with Chronic Conditions?

I was in my physiotherapist’s office when she probed an unexpectedly painful spot. This was the year my body began to fall apart and I had gone to see her in a desperate attempt to relieve the pain in my neck, shoulders, back and pelvis. When she found an agonizing point on my leg, I burst out in frustration: “Stupid body!” The problem, my physiotherapist informed me, was not physical, it was mental. My bad attitude about my body was the source of my pain. If I could learn to let go of my negativity, then my chronic pain would be resolved. Basically, positivity was the cure. I left her office both angry with her for dismissing my very real, body-wide pain, and riddled with self-doubt over whether my outlook on life was in fact the source of my illness. I wasn’t alone in my experience:

The idea that optimism is all you need to achieve anything you want, even recovery from illness, is now conventional wisdom. In her article Smile! You’ve Got Cancer, author Barbara Ehrenreich writes about her experience with breast cancer. Ehrenreich (2010) describes that, when she went online to learn from the experience of other survivors: “The first thing I discovered as I waded out into the relevant sites is that not everyone views the disease with horror and dread. Instead, the appropriate attitude is upbeat and even eagerly acquisitive.” She recounts examples of this kind of thinking, including quotes like this one from Jane Brody: “breast cancer has given me a new life. Breast cancer was something I needed to experience to open my eyes to the joy of living.” Ehrenreich calls this message “the tyranny of positive thinking.”

But, Can a Positive Attitude Actually Improve Chronic Illness?

Is Ehrenreich too fast in dismissing the potential benefits of optimism? Research consistently supports the idea that having a positive outlook can lead to positive health outcomes. In fact, a number of studies have:

…shown that a high level of optimism is linked to both enhanced physiological recovery and psychosocial adjustment to coronary artery bypass surgery, bone marrow transplant, postpartum depression, traumatic brain injury, Alzheimer’s disease, lung cancer, breast cancer, and failed in vitro fertilization (Goodin and Bulls, 2013, p. 329).

Before we go any further, I think it is helpful to define what it means to have a “positive attitude.” Researchers commonly equate positive thinking with optimism. Optimists are defined as “people who expect positive outcomes to occur in their future” and who are “likely to persist in their goal-directed efforts, where as those low in optimism are more likely to withdraw effort, become passive and potentially give up on achieving their goals” (Goodin and Bulls, 2013, p. 329).

The rationale for urging patients to develop a positive attitude is, essentially, that it will enable them to recover from their condition, and improve their quality of life along the way. I think there is a crucial difference between these two claims. The first claim is that a positive attitude will actually change the course of your disease, while the second claim has to do with an improved quality of life while living with illness.

Stop Blaming the Victim: Chronic Conditions Are Not Cured by Positivity

When it comes to the first claim, Ehrenreich (2010) shares her frustration that  “it remains almost axiomatic, within the breast cancer culture, that survival hinges on ‘attitude’.” This message also happens to be wrong – researchers have found that optimism does not increase survival rates for cancer (Medical News Today, 2004).

The positivity dogma shifts the cause of disease from being a physical malfunction to a character flaw – if only you were positive enough you wouldn’t have developed fibromyalgia or your cancer wouldn’t have metastasized. It is the worst kind of blame-the-victim thinking.

And while it might seem easy for people living with illness to dismiss comments suggesting they developed their condition because of their bad attitude, the problem is that illness makes people prone to feelings of guilt. Not only are our own lives changed, but so are the lives of family, friends and colleagues who depend on us. We feel guilty for the burden that our illness places on others, and that makes us vulnerable to self-blame. As the American Cancer Society explains, positivity-as-cure can be a deeply destructive message because it makes the patient culpable for getting sick in the first case and places the burden of recovery on their ability to be cheerful about it along the way (Edmonson, 2017).

The pressure to be optimistic invalidates the normal and natural feelings of grief that accompany illness. To suggest that grieving itself worsens illness, that these feelings should be repressed in favour of positivity, actually makes learning to live with the condition more difficult. If you are a friend or family member of someone living with a chronic illness you should know that attempting help by saying “you should be more positive” dismisses the very real feelings of the person you care about. In fact,

“A study published in the New England Journal of Medicine that analyzed the effects of expressing authentic emotions among breast cancer patients. And guess what? The researchers found that women who were able to reveal honest feelings showed overall mental-health improvements and reported less physical pain than the women who kept things bottled up” (Edmonson, 2017).

If you are a person with a chronic condition, let me be clear – your illness is not your fault, your feelings of grief and anger are natural, and recovering or managing your illness does not hinge on being happy all the time.

But Cultivating Optimism Can Improve Quality of Life for People with Chronic Conditions

The second claim about the benefit of positivity is that your perspective will influence your experience of illness – that being optimistic will help you cope better with your symptoms.  Since symptoms like pain and fatigue are ultimately subjective (based on personal feelings), it seems intuitive that your mental outlook might colour your experience of symptoms. This is not to say anyone should try to be positive all the time, or at the expense of expressing authentic emotions, but that working towards optimism, hope and acceptance can reduce suffering and pain.

It turns out that there is a large body of evidence which supports this notion. Greater optimism has been linked to reduced pain levels in people with different types of cancer, as well as arthritis (Goodin and Bulls, 2013). Interestingly, optimism has also been associated with adjusting better to life with a pain condition because of factors like paying less attention to pain symptoms, better daily mood, and less catastrophizing (thinking the worst; assuming every negative event will be an overwhelming disaster).

The idea that a positive attitude could improve my quality of life with chronic illness feels less blaming and dismissive to me than the dogma “survival hinges on attitude” which Ehrenreich describes . First of all, it doesn’t suggest that developing fibromyalgia was my fault because it makes no claims about cure or recovery. Secondly, it makes positive thinking more of a goal to work towards, if I choose. Grief and acceptance come in waves and learning optimism is not about repressing sad or angry feelings.

The idea that a positive outlook might improve everyday life doesn’t dismiss the reality of grief or other negative feelings, but it does provide an option for cultivating a better relationship with my pain and illness, if I decide that my current state of mind is not helpful to me anymore.

Is a possible to cultivate optimism, hope and acceptance? It appears that optimism, and its related traits of hopefulness and acceptance, can be learned. Our brains have the ability to change by forming new neural connections with repeated practice, a phenomenon called neuroplasticity. I have listed a few resources below if you are interested in science-backed strategies for learning greater optimism.

  • An app called Bliss has a number of proven exercises that can increase optimism, such as expressing daily gratitude, visualizing your best possible future and purposefully savouring the good things that happen each day.
  • One of the most powerful tools that has helped me to cope with my illness is practicing mindfulness, usually defined as “non-judgemental, present moment awareness”. I attended a Mindfulness-Based Stress Reduction course at my pain clinic that introduced me to how cultivating presence could help me manage my pain.  Much of our anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in front of us at this moment in time. You Are Not Your Pain is an excellent book on learning mindfulness for people living with pain and illness.
  • Buddha’s Brain by Rick Hanson is a wonderful book with practical advice on how to retrain your brain to strengthen positive brain states like calm, joy and compassion.

So, How Does Positive Thinking Affect Chronic Illness?

  • Having a negative perspective does not cause illness.
  • Having a positive attitude will not cure you.
  • Saying otherwise to people living with chronic conditions invalidates their experiences and feelings.
  • It is natural to feel grief and anger over the onset of illness and healthy to express these emotions.
  • Working towards greater acceptance and cultivating optimism can improve your quality of life, and help you to live better despite the challenges of having a long-term illness.

References:

Edmonson, J. (2017, Sept 3). A positive outlook not always in your best interest. The Star.

Ehrenreich, B. (2010, January 2). Smile! You’ve Got Cancer. The Guardian.

Goodin, B. and Bulls, H. (2013). Optimism and the experience of pain: benefits of seeing the glass as half full. Curr Pain Headache Rep, 17(5): 329. doi:10.1007/s11916-013-0329-8.

Medical News Today.(2004, Feb 9). A positive attitude does not help cancer outcome.

 

Bottoms up: Tart Cherry Juice is a Potent Natural Treatment for Chronic Pain and Insomnia

BOTTOMS UP: TART CHERRY JUICE IS A POTENT NATURAL TREATMENT FOR CHRONIC PAIN & INSOMNIA

Interested in natural treatments for fibromyalgia or chronic pain?Learn about how tart cherries, one of the top antioxidant and anti-inflammatory foods, can reduce pain and alleviate insomnia.

Many people with fibromyalgia and other chronic pain conditions are interested in effective natural treatments to relieve their pain. I am always on the lookout for promising supplements to try. Pharmaceutical drugs can absolutely provide pain relief and I don’t think there should be any stigma about taking prescription medications. I take pain killers and they improve my quality of life. However, drugs are often only partially effective and they can cause unwanted side effects. To me, it only makes sense to integrate helpful natural treatments with mainstream medical approaches. Supplements can reduce pain and often have fewer side effects than pharmaceuticals.

One promising natural treatment for relieving pain is tart cherry juice. Tart cherries are incredibly rich in in antioxidants – greater even than dark chocolate or red wine – and tart cherries can significantly reduce inflammation. Antioxidants are important for overall health, and specifically benefit people with chronic conditions associated with high rates of oxidation (damage caused to cells by oxidants). Antioxidants neutralize oxidants (also called free radicals),  preventing tissue damage and providing a host of other benefits including reduced inflammation.

Research shows that tart cherry juice is particularly effective for reducing muscle pain caused by overexertion. Tart cherry juice works to “protect muscles, lower pain, and accelerate muscle repair” (Life Extension). Not surprisingly, post-exercise pain is caused in part by oxidation and inflammation, which is where tart cherries come in. Studies on the impact of tart cherry juice on post-exercise recovery found that it accelerated muscle repair, reduced inflammation, and reduced pain compared to control groups (Life Extension). Tart cherry juice might therefore be helpful for people with illnesses that cause muscle pain like fibromyalgia and myofascial pain syndrome. I have found that it help to drink it on days that I go for longer walks or do my physical therapy strengthening exercise, to reduce the soreness and ward off a flare.

The anti-inflammatory effect of tart cherry juice has potentially widespread benefits for many chronic conditions. I get pain relief from my endometriosis symptoms and fibromyalgia symptoms using pharmaceutical anti-inflammatories like ibuprofen, but I often worry about taking too much, because of the damage non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen can cause to your stomach lining. There is dispute about the extent of inflammation in fibromyalgia, but one study found inflammation of the fascia (the connective tissue sheath that covers muscles).  “In 2012, a double-blind, randomized, placebo-controlled trial found that…among those patients consuming tart cherry juice, there was a statistically significant decrease in inflammation, indicated by reduced levels of C-reactive protein (CRP)” (Life Extension). Tart cherries also inhibit the same inflammatory compounds, called COX enzymes, that NSAIDs do: “Tart cherries contain high levels of flavonoids and anthocyanins that have anti-inflammatory properties that also work through the inhibition of COX enzymes” (Runners Connect).

Amazingly, that’s not all tart cherries can do for us. Insomnia is a significant problem for people with fibromyalgia. Tart cherries contain melatonin, the hormone that tells your body it’s time to go to sleep. A randomized, double-blind, placebo-controlled trial showed that drinking tart cherry juice in the morning and before bed helps improve sleep time and overall time in bed.  Maybe tart cherry juice will help with your insomnia too!

So how much should you drink? Studies of effective tart cherry juice action had participants drink 8-12 oz (236-354 mL) of juice twice daily (remember one cup is 8 oz or 236 mL).  I’m going to head out and get me some more tart cherry juice.  Bottoms up!

Reference:

‘Report – Anti-Inflammatory Properties of Tart Cherry’ Life Extension Magazine June 2013

‘Can Tart Cherry Juice Replace NSAIDs to Relieve Pain and Reduce Inflammation for Runners?’ Runners Connect 

fIG. 1 FROM lIFEeXTENSION.cOM
Guard Against Degenerative Disease and Inflammation with Tart Cherries

Guard Against Degenerative Disease and Inflammation with Tart Cherries

  • Physical exercise can induce muscle damage that generates inflammation and with it, burning, stiffness, and pain. The effect worsens with age.
  • Standard treatment with nonsteroidal anti-inflammatory drugs such as ibuprofen (Advil®) involves potentially deadly adverse effects, such as stroke.
  • Evidence shows that the weave of complex anthocyanins and phenols in tart cherries provides superior protection against muscle injury—by safely inhibiting the pain and inflammatory effects.
  • The potent components in tart cherries have been demonstrated to deliver high-level protection against inflammatory and degenerative diseases, including cardiovascular disease, metabolic syndrome, and neurodegenerative diseases such as Alzheimer’s.

Tune In: How Listening to Music Improves Fibromyalgia

Listening to music can reduce pain, improve functional mobility, increase sleep quality, and reduce depression in people with fibromyalgia.

How Listening to music improves fibromyalgia

It is a truth universally acknowledged that we may not all like the same music, but we all like music. Our favourite artists help us celebrate the good times, express our emotions in the difficult times, and while away the time in between.

I’ve seen many article headlines, written by authors with chronic illnesses, acknowledging the role that music has played in helping them get through flare-ups, and other health problems. I’m not going to lie though, around the time that I was diagnosed, I mostly stopped listening to music on my own. You know how a song can carry you back to a moment in your past, like a soundtrack to your memories? Well, I didn’t want to be transported back to a time when I was healthy and free, by listening now to the music I played then. I also didn’t feel like finding new music. I’m not sure why, except that I didn’t feel that certain joie de vivre it takes to explore new things in life.

Research on the Impact of Music on Fibromyalgia

Then, I came across a study that made me rethink this choice: Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter.[1] Researchers found that when people with chronic pain listen to music for an hour a day, they experienced up to a 21% reduction in pain and a 25% reduction in depression. Another important finding was that listening to music made participants feel less disabled by their condition and more in control of their pain. It did not appear to matter whether individuals listened to their favourite music or relaxing music selected by the researchers.

I decided to do some further research to find out whether these findings applied to fibromyalgia. It seems that I wasn’t alone in asking that question. Several studies have investigated the impact of music on fibromyalgia.

A recent study looked at whether listening to a relaxing water and wave sound CD could reduce pain in individuals with fibromyalgia. There was a significant reduction in pain levels among participants who listened to the CD over a two week period, compared to a control group who did not listen to music at all. The study concluded by recommending music therapy for pain management in patients with fibromyalgia.[2] That’s an exciting finding, but since I don’t have access to the exact CD used in the study, how can I take advantage of these findings? I decided to delve a little bit deeper.

A second study investigated whether listening to your favourite music can reduce your pain levels if you live with fibromyalgia. One caveat of this study is that the self-chosen music was relaxing and pleasant. The study found that pain did indeed decrease after listening to music, becoming less intense and less unpleasant.[3] In addition, participants who listened to music also experienced improvements in their functional mobility, measured by the ease of getting out of a chair and walking. This effect lasted even after the music stopped. This suggests that music might be able to help individuals with fibromyalgia perform everyday activities more easily because of its pain relieving effects! Patients in the control group, who listened to “pink noise” (the sound of static) did not experience pain reduction.

But pain isn’t the only unwelcome fibromyalgia symptom. What about sleep? Listening to music designed specifically to improve sleep was found to be effective in a small study of patients with fibromyalgia. After four weeks of listening to the music at bedtime, individuals reported significant improvements in sleep quality.[4] The sleep music was embedded with delta sound waves, which pulsate within specific frequencies of brain wave activity that are associated with deep sleep (0.25-4 hz). Delta brain waves, which are the slowest type of brain wave, are associated with deep sleep. Listening to delta sound waves is thought to stimulate the production of delta waves in your brain. While this may sound like high tech science, unavailable to the average patient, finding this music is as simple as searching for “sleep music delta waves” in YouTube. Personally I have found this really valuable for falling asleep, getting back to sleep and resting during the day.

Why Music Improves Fibromyalgia Symptoms

The nerd in me wanted to know why music seems to have this pain relieving effect.[5] One possibility is that music is an effective distraction from pain (research has found that distraction activities, like memory tests, can help reduce pain). Listening to music is associated with the release of dopamine, a neurotransmitter that is known to have a role in the body’s natural pain relieving mechanisms. Music also produces relaxation, which in turn can help reduce pain levels.

Researchers of this last study believe it is important to listen to music you know and enjoy, because familiarity is helpful for sustaining attention. When we pay attention, where more likely to experience the benefits of listening to music. In another case of science proving the obvious, studies have shown that music has a powerful effect on emotions and mood, and that emotions and mood can affect pain. If you enjoy the music you are listening to, it may be more likely to improve your pain levels.

Needless to say, I’ve decided to put my headphones back on.

How Listening to Music Improves Fibromyalgia Symptoms

References:

[1] Blackwell Publishing. (2006, May 24). Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter ” ScienceDaily. <www.sciencedaily.com/releases/2006/05/060524123803.htm>

[2] Balcı, Güler & Babadağ, Burcu & Ozkaraman, Ayse & Yildiz, Pinar & Musmul, Ahmet & Korkmaz, C. (2015). Effects of music on pain in patients with fibromyalgia. Clinical Rheumatology. 35. DOI 10.1007/s10067-015-3046-3.

[3] Garza-Villarreal EA, Wilson AD, Vase L, Brattico E, Barrios FA, Jensen TS, Romero-Romo JI and Vuust P (2014) Music reduces pain and increases functional mobility in fibromyalgiaFront. Psychol5:90. doi: 10.3389/fpsyg.2014.00090

[4][4] Picard, L. M., Bartel, L. R., Gordon, A. S., Cepo, D., Wu, Q., & Pink, L. R. (2014). Music as a sleep aid in fibromyalgia. Pain Research & Management : The Journal of the Canadian Pain Society19(2), 97–101.

[5] Garza-Villarreal EA et al. (2014)

Book Review: ‘Memory of Health’ by Edie Summers

book review_memory of health

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I was recently given the opportunity to review a new book by Edie Summers called Memory of Health. Edie Summers is both a wellness coach and chronic illness patient expert, with 20 years of experience in the alternative health field.

 

If I had to sum up Memory of Health in a sentence, I would say that it is essentially a manual of self-care for people living with chronic illness. The approach that Edie Summers takes to health and healing is truly holistic, which I think is perfectly summed up by a quote she includes: “Health, wholeness and holiness … all three share the same root word and all three share the same state of harmony or disharmony (Deepak Chopra).”

So what can you expect to find in this book? First, Summers shares her personal journey living with chronic illness, including how she recovered. She emphasizes the power of storytelling for well-being. Many of us with chronic illness can feel very alone in our experiences living with these conditions. Connecting with each other over our shared experiences is empowering. From making us feel less isolated in our experiences, to learning from each other, storytelling is very impactful. And there is much to learn from Summers’ story. One thing that really resonated with me was her relentless detective work to find what helped her to heal. The other was how Summers identified mental, physical and spiritual causes that contributed to her illness, and then made changes to effect her recovery.

Secondly, this book covers a wide range of factors that may contribute to chronic illness, and how to address each in turn, including:

  • identifying and removing environmental toxins that may exacerbate your condition
  • causes of chronic fatigue, including changes to the thyroid, anemia, microbiome, immune health, inflammation, depression, etc.
  • improving nutrition, restorative movement, relaxation, mindfulness, improving sleep etc.

In covering all these topics, Edie Summers keeps her focus on the systems that keep the body in balance. In her own words: “This is why I’m fascinated with systems biology which notices patterns, watches for the surfacing of self-organizing models, and observes healing from a holistic point of view. The thing is, nature is a dynamic system, which learns, evolves, and grows (p.120).”

In the final sections of Memory of Health, Summers provides a roadmap to self-care in order to help readers improve their well-being. The book includes detailed summaries of tips to improve physical health including diet modifications, supplements, super foods, relaxation, de-stressing, sleep support, yoga and many other important topics.

I think the most powerful section of the book is dedicated to mental, emotional and spiritual healing. Summers writes “The problem is, you cannot heal if you are not present in your body. This is your first step: get back into your body and stay there. It bears repeating: health resides in your body (p. 336).” Summers believes the road to greater presence is founded in self-love. Finally, she emphasizes connection– to loved ones, to activities that give us joy and to a sense of purpose.

Ultimately Summers sees all these different threads of wellbeing being woven together to effect synergy. She explains: “Synergy, then, is how health occurs, when the total is greater than the sum of “its” parts. A great example of synergy is the experience of listening to a symphony orchestra vs. hearing each individual instrument played on its own (p.280).”

At times I found reading this book challenging because the way it is written is very dense. Some sections interweave scientific explanations, personal observations and spiritual reflections in a way I sometimes found hard to digest all at once. I think the best way to read this book is to focus in on the sections you think are most applicable to your situation, rather than trying to read the entire thing in one go. There is a very detailed Table of Contents to help you identify the sections that you feel are most relevant to you, which is very helpful.

The other caveat is that all of these suggestions are based on Edie Summers’ personal experiences and should not be taken as medical advice. Make sure you consult with a healthcare practitioner before trying to implement any of these tips.

So, ultimately, who is this book for? I think it is ideally suited to anyone living with a chronic illness who feels like they have tried everything and nothing has worked. Memory of Health opens up many new avenues to pursue and can provide hope to people who feel stuck. It is also an inspirational read. If you are feeling in need of guidance on how to live with more purpose, joy or connection, even if you have a chronic illness, then I think this is the book for you.

Click here to see more reviews on Amazon

Click here for a 40% discount on Memory of Health from Lulu.com

Click here to visit Edie Summers’ website

The 3 Best Diets for Fibromyalgia, According to Science

Learn about 3 diets that improve fibromyalgia symptoms: plant-based, low FODMAP and gluten-free –including an explanation, the science and resources for each diet.

The 3 Best Diets for Fibromyalgia, According to Science

Is Food Really Medicine?

Is there such a thing as a diet to treat fibromyalgia?  While there is no consensus on a single diet to treat FMS, research does point us in a few intriguing directions– specifically, symptoms improvements from plant-based vegetarian diet, a low-FODMAP diet and a gluten-free diet.

Fibromyalgia is difficult to treat. Presently, there are only three prescriptions that are approved by the FDA for fibromyalgia (pregabalin, duloxetine and milnacipran). Unfortunately, although these medications can provide partial relief for some people, none are a magic bullet for treating fibromyalgia. That’s why specialists recommend a multidisciplinary approach to FMS treatment. We know that diet plays an important role in preventing and managing many diseases, such as diabetes and autoimmune diseases, so why not fibromyalgia as well?

In this article, I want to lay out the scientific evidence for three different diet approaches to improving fibromyalgia: plant-based, FODMAP and gluten-free. My hope is that this article can serve as a starting point for you to explore how to use food as medicine to improve your symptoms.

Nutrition can be empowering. That might sound overblown. But, unlike prescriptions or appointments with doctors and physical therapists, there is no intermediary between you and what you choose to eat. Food is personal and what you decide to eat is ultimately up to you. For a person living with fibromyalgia, having the ability to make decisions over something as important as nutrition really is empowering. However, changing daily habits can be a challenge, which is why I have included several free and affordable resources for each diet if you are interested in making any changes.

Fibromyalgia and Plant-Based Vegetarian/Vegan Eating

At least three studies have shown that people with fibromyalgia benefit from a plant- based vegetarian or vegan diet.[1] It’s important to stress the plant-based focus of this dietary therapy. It is possible to eat a diet that is vegetarian, but primarily made up of processed, nutrient-poor, junk food. This won’t improve your general health or your fibromyalgia symptoms. Plant-based foods, including fruits, veggies, whole grains, beans and nuts, contain vitamins, minerals and antioxidants that provide crucial nutritional benefits. It’s quite possible to also obtain balanced macronutrients (carbs, protein and fats) from these plant sources. While vegans and vegetarians both eat plant-based foods, vegetarians also consume dairy, eggs, honey (and sometimes, fish). Vegans do not eat any animal-sourced foods.

Studies have shown that fibromyalgia is linked to high rates of oxidation (damage to tissues caused by particles known as oxidants). Antioxidants neutralize oxidants and serve an important protective function in the body. Researchers hypothesize that consuming a diet rich in antioxidants might help to improve fibromyalgia symptoms.[2]  One study showed that fibromyalgia patients on a vegetarian diet had an improved antioxidant status; 70% of participants also reported lower pain levels and increased well-being.[3]

Another benefit of eating vegetarian is weight loss. Carrying extra weight worsens pain, sleep, depression, and other fibromyalgia symptoms.[4] However, it can be very difficult to lose weight when you have a condition that makes moderate exercise painful. If you have struggled unsuccessfully to lose weight, could it be time to consider going vegetarian or vegan?

A recent study of diabetic patients found that, compared to a conventional low-calorie diet, a vegetarian diet was almost twice as effective in reducing body weight.[5] In a separate investigation into the effects of eating vegan on fibromyalgia symptoms, research participants who were overweight had a significant reduction in body mass index, as well as cholesterol levels.[6] This 3-month study found that eating vegan resulted in significant improvements in FMS symtoms: reduced pain levels, and joint stiffness and improved quality of sleep and quality of life.

After my diagnosis, I ate a lot of processed, packaged food because of the convenience. But it cost me a lot in terms of my symptoms getting worse and gaining weight. After I switched to eating plant-based vegetarian, I lost about 20 pounds and found that some of my symptoms improved, including more sustained energy, no low blood sugar crashes and greater ease of movement.

If you are interested in going vegetarian/vegan, or just incorporating more meatless main dishes into your diet, here are a few resources to get started:

Fibromyalgia and the Low FODMAP Diet

This is a weird sounding diet, right? FODMAP stands for several types of short chain carbohydrate and sugar alcohols. Research has shown that a diet low in FODMAPs is the most effective diet plan for managing Irritable Bowel Syndrome (which includes symptoms like bloating, nausea and changes in bowel movements). In addition, a low FODMAP diet (LFD) can reduce fatigue, lethargy and poor concentration.[7]

Based on these findings, a new study investigated whether reducing FODMAPs in your diet could improve your fibromyalgia symptoms.[8]  The results were positive – a statistically significant reduction in body pain and gastrointestinal symptoms, as well as an improvement in quality of life. I find it interesting that these results indicated improvements beyond only G.I. symptoms . Research into probiotics and dietary interventions has been pointing to a gut-brain connection. Since fibromyalgia involves a sensitized nervous system, perhaps one way to dial down the sensitivity could be via the gut? It’s important to note that this was a pilot study, with a small sample size, and further research needs to be done. However, if you have IBS or significant G.I. issues along with fibromyalgia, a low FODMAP diet might help you manage digestive symptoms and reduce your pain!

How Does a Low-FODMAP Diet Work?

For some people, FODMAPS are poorly absorbed in the small intestine. When they pass into the large intestine, they are quickly fermented, which contributes to gas, abdominal bloating and pain. They also attract water into the large intestines through osmosis, which can alter bowel movements. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. These can be further divided into five groups called fructans, galacto-oligosaccharides, lactose, excess fructose and polyols.

Foods that contain FODMAPS include:  onions, garlic, mushrooms, apples, lentils, wheat, rye and milk. Importantly, not everyone is triggered by all types of FODMAPs. Instead, the FODMAP diet takes an elimination approach. Initially, all FODMAPs are removed from your diet. Gradually, they are re-introduced one by one so you can determine which ones cause you a negative reaction. Only your FODMAP triggers are permanently removed from your meals.

If you are interested in learning more, you can check out these resources:

Fibromyalgia and the Gluten-Free Diet

It’s impossible to have escaped the gluten-free diet fad that has swept the mainstream in recent years. The evidence is seemingly in every grocery store and on every menu. While it may seem like only a fad, there is a scientific rationale behind why some people may benefit from a gluten-free diet, even if they don’t have celiac disease (CD): “Non-celiac gluten sensitivity is increasingly recognized as a frequent clinical condition with symptoms similar to CD in the absence of the diagnostic features of CD.”[9]

Without getting too deep in the weeds on this topic, gluten is a protein found in wheat, rye, barley and similar grains. In some people with a weakened intestinal barrier, consuming gluten triggers an inflammatory immune response. Some of the symptoms of a gluten sensitivity include gastrointestinal problems like bloating, constipation, diarrhea, abdominal pain, and vomiting, as well as muscle and joint pain, brain fog and chronic fatigue. Although the clinical markers of gluten sensitivity are different from celiac disease, scientists have uncovered markers of intestinal cell damage and increased immune activity, which normalized after eliminating gluten for six months.[10]

A small pilot study investigated whether fibromyalgia patients with gluten sensitivity improved after beginning a gluten-free diet. Patients with confirmed gluten sensitivity experienced an improvement in pain, fatigue, neurological and gastrointestinal symptoms after beginning a gluten-free diet. Of the 20 participants in the study, fifteen experienced a significant reduction in body wide pain – some shortly after beginning the diet and others after a few months. The authors conclude that this pilot study suggests non-celiac sensitivity may be a treatable cause of fibromyalgia, but that further research needs to be done.

If you are curious whether gluten might be worsening your symptoms, it’s best to begin with a trial elimination diet. This means eliminating all sources of gluten from your diet for several weeks. During this period, keep a food log of what you eat and what your symptoms are each day. Then reintroduce gluten into your diet, and observe whether your symptoms change or worsen. Since more than half of FM/CFS patients see their symptoms improve when they eliminate certain foods, including corn, wheat, dairy, citrus and sugar, you may want to add other foods to your elimination diet.

If you suspect that gluten may be impacting your fibromyalgia, it’s good to rule out celiac disease first. Start by making an appointment with your doctor (and bringing your food log). In order to rule out non-celiac gluten sensitivity, you may want to consider working with an integrative medical doctor, naturopathic doctor, or nutritionist. Although research supports the existence of gluten sensitivity, the mainstream medical profession lags behind when it comes to accepting this condition, so alternative and complementary health professionals may be better to work with during this process.

Here are a few resources to check out if you are interested in going gluten-free:

 

References

[1] https://vegetarianprescription.org/2016/11/01/the-treatment-of-fibromyalgia-with-a-plant-based-diet/

[2] https://vegetarianprescription.org/2016/11/01/the-treatment-of-fibromyalgia-with-a-plant-based-diet/

[3] Høstmark A, Lystad E, Vellar O, et.al. Reduced plasma fibrinogen, serum peroxides, lipids, and apolipoproteins after a 3-week vegetarian diet. Plant Foods for Human Nutrition. Jan 1993;43(1):55-61.

[4] http://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/obesity-fibromyalgia.php

[5] https://www.sciencedaily.com/releases/2017/06/170612094458.htm

[6][6] Kaartinen K, Lammi K, Hypen M. Vegan diet alleviates fibromyalgia symptoms. Scandinavian Journal of Rheumatology. 2000; 29(5): 308-13.

[7] http://fodmapfriendly.com/what-are-fodmaps/

[8] Marum, A.P. et al. (2016). A low fermentable oligo-di-mono saccharides and polyols (FODMAP) diet reduced pain and improved daily life in fibromyalgia patients. Scandinavian Journal of Pain 13:166-72. http://www.scandinavianjournalpain.com/article/S1877-8860(16)30084-2/fulltext?mobileUi=1

[9]Isasi, C. et al. (2014). Fibromyalgia and non–celiac sensitivity: a description with remission of fibromyalgia. Rheumatology International , 34 (11), 1607-16.

[10] http://www.medicalnewstoday.com/articles/312001.php

Massage for Fibromyalgia: A Complete Guide to Getting the Most Out of this Healing Therapy

Massage for Fibromyalgia_A Complete Guide

If you have fibromyalgia, could massage be the effective, natural and drug-free treatment you have been looking for to treat your muscle pain?

If there is one hallmark symptom of fibromyalgia, it has to be sore, aching muscles. Chronic body-wide pain is one of the most limiting features of this chronic illness, because it reduces our ability to participate in the activities we love. Unfortunately, muscle pain is also one of the more difficult symptoms to treat. Medications for fibromyalgia offer only partial relief from pain. So with no magic bullet available, many patients consider alternative treatments. I don’t know about you, but painful muscles often lead me to think about massage. But is massage therapy an effective treatment for fibromyalgia?

For someone who doesn’t have fibromyalgia, that might seem like an odd question. The reason people with fibromyalgia are cautious about massage is because of another common symptom called ‘allodynia’ – painful sensitivity to pressure or touch on the skin. If putting on a blanket hurts you or wearing clothing feels like sandpaper on your skin, then you probably experience  allodynia. In cases where this is severe, massage is probably not the best treatment option.

However, a common misconception is that when it comes to massage, the attitude should be ‘no pain, no gain’. This is untrue. It is entirely possible to have a therapeutic massage that is also gentle. In fact, research shows that “Manual therapy, and any exercises prescribed as part of it, should … take into account the fact that our bodies react strongly to sensation. Basically, they should be gentle and appropriate to what we can handle without increased symptoms.”[i] If you can tolerate light pressure, then massage might well be the effective, natural and drug-free treatment you have been looking for to treat your muscle pain.

Personally, once I found the right therapist, massage became one of my go-to treatments for muscle pain. It’s crucial that you find a practitioner who has the right training and experience. In this article, I’m going to share the different types of massage and the essential questions you need to ask in order to get the most out of your treatment session.

Infographic on massage for fibromyalgia

What are the Different Types of Massage Therapy for Fibromyalgia?

 Swedish massage: is the most common type of massage therapy. It is based on Western medical concepts of anatomy (compared to the focus on energy therapy in Asian forms of massage). Swedish massage uses techniques like ‘effleurage’ (long smooth strokes), as well as kneading, rolling, circular and rocking motions.

Shiatsu massage: this Japanese form of massage incorporates acupressure points from traditional Chinese medicine.[ii] Essential life energy, called ‘qi’ (chee) is believed to flow along channels in the body called meridians. Acu points are mapped along meridians. Stimulating acupressure points restores the flow of qi along the meridians, improving the health of the individual.

Deep tissue massage: this type of massage focuses on knots, or adhesions,  in the deeper layers of muscles, which are associated with chronic pain or injury. Techniques include deliberate strokes or friction across the grain of the muscle. As the name implies, this form of massage uses a greater degree of pressure, so fibromyalgia patients should communicate closely with their therapist to ensure that the massage is not painful.

Myofascial release massage: focuses on muscles and fascia – the connective tissue membrane that encompasses your muscles like a sheath. When the therapist feels that myofascial tissue is tight and constricted, including finding trigger points (painful contractions of muscle tissue), they use techniques to lengthen and restore elasticity using stretching and manual pressure.[iii] In my personal experience, this kind of therapy can be intensely painful if the practitioner applies direct pressure to trigger points. However, finding a practitioner experienced in treating fibromyalgia makes all the difference – in my case, the therapist used gentler, more indirect techniques, making the massage much less painful.

What are the Benefits of Massage for Fibromyalgia?

In general, massage increases blood circulation, encourages cell oxygenation and nutrition, relieves muscle tension, and releases natural painkillers like serotonin.[iv]

Massage has been found to improve pain levels, sleep and mood in people living with fibromyalgia.[v] One study found that levels of a neurotransmitter, called substance P, which stimulates pain receptors in the body, were reduced after twice-weekly massage therapy sessions over five weeks. As a result, the “patients’ physicians assigned lower disease and pain ratings and rated fewer tender points in the massage therapy group.”[vi]

Another study investigated the effects of shiatsu massage for managing fibromyalgia symptoms. It found that participants who received a twice-weekly 40 minute shiatsu massage for eight weeks had reduced pain intensity and decreased sensitivity to pressure, as well as improved sleep, compared to a control group .[vii]

Researchers have also investigated whether myofascial release massage improves fibromyalgia symptoms. A randomized, placebo-controlled study found that the experimental group (who received massage) had improved anxiety levels, quality of sleep, pain levels and quality of life, as compared to the control group (who did not have myofascial massage). However, six months after the study concluded, only sleep quality remained significantly better for the experimental group than the control group. This suggests that massage needs to be continued on an ongoing basis to see the full benefits of the treatment.[viii]

 How Do I Find a Qualified and Experienced Massage Therapist?

Finding the right massage therapist is the key to getting the most benefit from this treatment for fibromyalgia. I have had healing, therapeutic massages and painful, flare-inducing massages. Through trial and error I learned that the primary difference was the training and experience of the massage therapist. Training matters because regulations for massage therapy vary across states in the US and provinces in Canada. Unfortunately, some massage practitioners have very little training or clinical experience and could do more harm than good if they treat you.

However, in order to increase standards and build consumer confidence, a number of professional massage therapy organizations have created certifications with a higher standard of training and clinical experience. In order to receive this certification, therapists voluntarily meet these standards. Before seeing a potential massage therapist, make sure you ask:

  • (In the US) Are you board certified by the National Certification Board for Therapeutic Massage and Bodywork?  The NCBTMB is the regulatory authority for massage therapy professionals in the USA, and responsible for ensuring that massage therapists follow best practices and uphold the codes of ethics, quality and legality. A helpful website is NCBTMB.com, where you can locate a Nationally Certified Massage Therapist in your zip code.
  • (In Canada) are you a member in good standing of your provincial massage therapy professional organization? Massage therapy Association self-regulate standards of practice in six Canadian provinces, while four have established massage therapy as a regulated health profession. You can utilize provincial massage therapy association websites to find a therapist near you.

Broadly speaking, I have found that massage therapists often focus on either relaxation, sports medicine or injury rehabilitation/chronic pain. Spas often employ a ‘masseuse’ for relaxation massage, who are typically poorly trained in therapeutic massage techniques. Sports or athletic focused massage therapists often use more aggressive techniques. This makes sense, given that athletes are anxious to get back on the field, but it is not appropriate for fibromyalgia patients who have a high sensitivity to pressure or touch and a low threshold for pain. This makes massage therapists who have experience in rehabilitation and treating chronic pain the best choice for people living with fibromyalgia. Always ask:

  • What is your experience treating clients with fibromyalgia?
  • What type of massage do you practice?
  • Inform them that you are looking for a gentle therapeutic massage, not a painful or intense massage

As we have discussed throughout this article, each individual with fibromyalgia has a different level of sensitivity to touch. It is critical that your massage therapist asks for your continual feedback to ensure that they use the right intensity and amount of pressure for you. Once you’ve selected a therapist,

  • Ask that they use light pressure during your first appointment
  • Tell them that it is important that you have an ongoing dialogue about whether the pressure or technique is comfortable for you
  • Don’t be afraid to speak up if something feels painful or uncomfortable!

References:

[i] https://www.verywell.com/fibromyalgia-chiropractors-massage-therapists-715646

[ii] http://www.prevention.com/health/health-concerns/fight-fibromyalgia-shiatsu

[iii] http://www.mayoclinic.org/diseases-conditions/back-pain/expert-answers/myofascial-release/faq-20058136

[iv] http://www.prevention.com/health/health-concerns/fight-fibromyalgia-shiatsu

[v]http://journals.lww.com/jclinrheum/Fulltext/2002/04000/Fibromyalgia_Pain_and_Substance_P_Decrease_and.2.aspx

[vi] http://journals.lww.com/jclinrheum/Fulltext/2002/04000/Fibromyalgia_Pain_and_Substance_P_Decrease_and.2.aspx

[vii] https://www.massagemag.com/shiatsu-improves-fibromyalgia-symptoms-2-13210/

[viii] https://www.hindawi.com/journals/ecam/2011/561753/abs/