Hi there! I am a health writer, health advocate and all-around health nerd. Free lance writer, ePatient Blogger and Certified Health Coach Five years ago I was diagnosed with a chronic pain condition. On my health journey, I've learned the power of self-care skills to improve my health and well-being.
An illness like fibromyalgia permeates every aspect of your life – it forever alters the trajectory of your story. For this year’s Fibromyalgia Awareness Day, I wanted to reflect how my diagnosis changed my path, both in negative and positive ways.
I have written about my story before, but here I want to talk about the impact my diagnosis had. Initially, all I could see afterwards was loss in every direction, as if a tornado had ripped through my life, reducing everything I had dreamt, all my castles-in-the-air, to rubble. There would be no graduation from my PhD, no career in international development, no travelling around the world, no more outdoor adventures, no parties, no financial independence, and no buying a house, among many other no’s.
Fibromyalgia changed most of my relationships. I now depend on my husband for many daily tasks, household chores, and finances – I am a dependent and he is my caregiver. I have lost friendships, and I see the friends I still have less frequently then I would like.
Grieving over the losses caused by chronic illness is a different process than the usual stages of grief people experience. When I wrote a post on grief after diagnosis, I found the concept of infinite losses very helpful for illuminating this:
Most often, grief is a reaction to a single, time-limited event… Grief associated with chronic illness, however, is more complex for many individuals. For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses (Jackson, 2014).
But my story doesn’t end there. In the trials I’ve experienced on my illness journey, I have forged a stronger, wiser and more patient personality. Fibromyalgia stripped me down to my most basic self and forced me to find my identity independent of career, relationships and external activities.
The positive gains that I’ve experienced after diagnosis cannot be measured in dollars, or posted as pretty pictures on social media. Instead of outward experiences, chronic illness has directed my journey inward. For the first time, I have cultivated a relationship with myself.
Mindfulness meditation was the turning point for me. As I came to know the content of my own heart and mind, and began to tend to my inner self like a gardener cultivating a flower bed, I learned that growing in wisdom was a worthwhile goal to pursue. People on the outside may not appreciate my efforts, and I might not have material worth to show for it, but my inner peace is a higher reward than any external validation.
Taking in the simple pleasures of an ordinary day has enriched my life – tuning into sensory experiences like the warmth of sunshine on your skin, the aroma of coffee brewing in the morning, or the sound of bird song. Learning to savour the little moments of closeness with people I love on a daily basis is one of the most important lessons I’ve learned.
Difficult moments happen daily, triggered by pain, difficult emotions, and frustrating appointments, among other things. I’ve come to see these like thunderstorms, that eventually pass, just like the weather. It helps me to read less into those thoughts and feelings, to stop over-analyzing or ruminating on them, and eventually to let them go.
Beginning to accept myself, despite my mistakes and missteps, and feel compassion for my body, even when it lets me down, has probably made me a stronger, more patient and compassionate person. I know I treat those around me better because of it.
Being a better person is kind of the point of living your life, after all. I’m not trying to say that developing fibromyalgia was worth it, because I don’t buy into that “think positive” prescription. But what I aim for is a quote I read somewhere along the way:
“it might not be the life you planned, but it’s a good life nonetheless”.
Meditation is 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 cultivating mindfulness, which means “paying attention, on purpose, in the present moment, non-judgmentally.”
For this post, I wanted to look at some recent research done on patients who have participated in mindfulness meditation programs for chronic pain. The purpose of these studies was to assess whether mindfulness can lower pain, reduce depression, and improve quality of life.
The Mindfulness Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness meditation to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression. I personally have found that this approach has helped me to reduce my anxiety, improve my quality of life, and manage my pain. The MBSR intervention is structured so that participants attend weekly sessions where they learn “different types of formal mindfulness practice, mindful awareness during yoga postures, and mindfulness during stressful situations and social interactions” (p. 227, Grossman et al., 2007).
Researchers investigated the effect of MBSR programs for participants with mixed chronic pain conditions and the significance of at-home practice for pain management. The study measured results in terms of bodily pain, quality of life and psychological symptoms for each chronic pain condition (neck/back pain, arthritis, fibromyalgia, chronic headache, and two or more coexisting conditions). The researchers discovered that the degree of benefit of participating in mindfulness programs varied depending on the chronic pain condition, but that overall improvements were seen in almost every category (Rosenzweig et al., 2010).
Rosenzweig (2010) suggests different possible causes for how meditation practice can improve chronic pain conditions:
First of all, nervous system pathways to parts of the brain associated with stress can be inhibited through mindfulness practice.
Secondly, reducing psychological symptoms like anxiety and depression can help because those symptoms can amplify the perception of pain.
Third, mindfulness practice can help improve emotional regulation and coping skills in stressful situations.
Fourth, mindfulness contributes physical self-awareness which could help lead to better self-care.
Finally, mindfulness can help activate nervous system function associated with rest and calm (parasympathetic nervous system), which in turn can lead to deep muscle relaxation that may reduce pain.
Similar results were found in a study of the effects of participating in an MBSR course for people with fibromyalgia (Grossman, et al., 2007). Significantly, the researchers interviewed about half of the original participants from the mindfulness training group 3 years later, and found sustained long-term benefits among those who continued their mindfulness practice (Grossman et al., 2007).
One research review compared 38 studies involving a total of 3500 participants. It examined previously published studies which investigated the effectiveness of mindfulness meditation as a treatment for chronic pain. They found that “mindfulness meditation was associated with a statistically significant improvement in depression, physical health-related quality of life, and mental health-related quality of life” (Hilton et al., 2017). In this review, participants showed promising outcomes on pain symptoms, but the degree of improvement was limited.
Research reviews like this are limited in their ability to compare and contrast different studies. Different meditation techniques were used in the different studies, such as Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. In addition, the studies investigated outcomes in patients with different conditions, like fibromyalgia and migraine – which is like comparing apples to oranges. This highlights the need for more high-quality studies that include a greater number of participants with the same condition, using the same type of meditation program.
When it comes to trying mindfulness meditation, for people with chronic pain, there is nothing to lose and everything to gain. Prescriptions rarely offer total relief, and come with unpleasant side effects. The only cost to meditation is a little bit of time. while the potential benefits are less pain, better mood, and a greater quality of life.
Paul Grossman, Ulrike Gilmer, Annette Raysz and Ulrike Kesper. 2007. Mindfulness Training as an Intervention for Fibromyalgia: Evidence of Postintervention and 3-Year Follow-up Benefits in Well-being. Psychology and Psychosomatics 76: 226-233.
Steven Rosenzweig, Jeffrey Greeson, Diane Reibel, Joshua Green, Samar Jasser and Denise Beasley. 2010. MIndfulness-based stress reduction for chronic pain conditions: Variation in treatment outcomes and role of home meditation practice. Journal of Psychosomatic Research 68: 29-36.
Hilton, L., Hempel, S., Ewing, B. A., Apaydin, E., Xenakis, L., Newberry, S., Maglione, M. A. (2017). Mindfulness Meditation for Chronic Pain: Systematic Review and Meta-analysis. Annals of Behavioral Medicine, 51(2), 199–213. http://doi.org/10.1007/s12160-016-9844-2
The first question I had after we decided to start TTC was about how to safely manage my medications during pregnancy. It’s vital not to under-treat your pain! Here’s where to find the info you need. And to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!
During my 20s, I spent a lot of time and effort trying not to get pregnant. I used pills, patches and IUDs, coped with side effects, sat for hours in waiting rooms just to get prescription renewals, had a couple of scares thanks to late periods, and experienced all the other joys of being a woman using birth control.
It’s a surreal moment when you and your partner make the terrifying and exciting decision to you flip the switch, and start trying to conceive. Suddenly it’s all basal body temperature, ovulation predictor kits, and cervical fluid checks (and acronym hell – TTC, BBT, OPK, CF, TWW and BFP – it’s like a secret code!). Learning and tracking all of the ovulation signs is hard enough, never mind the challenges of pregnancy and parenthood, But for those of us with chronic illness, we face the additional hurdle of managing pain and other symptoms along the way. It’s vital to have a pain management plan while trying to conceive and pregnant:
“Because of fear about use of drugs during pregnancy, some pregnant women would rather suffer than treat their pain. Consequently, it is possible that such women are at risk of undertreatment, or no treatment, for painful conditions. Chronic, severe pain that is ineffectively treated is associated with hypertension, anxiety, and depression—none of which is conducive to a healthy pregnancy” (Motherisk).
The first hurdle you will most likely face, like I am right now, is how to safely manage your pain and other symptoms while you and your partner are trying to conceive?
How To Find Out If Your Medications Are Safe During Pregnancy
The first question I had after my husband and I decided we wanted to start trying was about the safety of my medications during pregnancy. At the time, I didn’t realize how complex this issue would turn out to be. It seems simple enough – a medication is either safe or unsafe, right?
Not so fast. In fact, a whopping “91% of the medications approved for use in adults lack sufficient data to determine the risk of birth defects due to use of medications during pregnancy” (CDC – Treating for Two).
The problem is that there are no double-blind, placebo-controlled research trials involving pregnant women. Why? Because it’s unethical to test the safety of a medication on a pregnant woman and her growing fetus – the potential consequence of causing a birth defect is too great a risk (CDC – Treating for Two).
Instead, the information doctors have about the safety of medications and pregnancy usually comes from observational studies of women who have chosen to take a medication during their pregnancy.
“Registries enroll pregnant women who have taken a certain medicine. Then, after these women give birth, the health of their babies is compared with the health of the babies of women who did not take the medicine” (CDC – Treating for Two).
The best you and your doctor can do is learn what information there is about the safety of the medications you take, weigh the potential health benefits and risks, and make a judgment call. But don’t fear prescriptions while TTC or pregnant. In fact, “Medications used in therapeutic doses for acute and chronic pain appear to be relatively safe in pregnancy” (Motherisk – click for a general overview of medications and supporting studies).
So where can you find the information that has been collected about prescription medication use before and during pregnancy?
In the United States, you can contact an organization called Mother to Baby, a nonprofit run by experts in birth defects. You can call toll free at 1-866-626-6847, text 855-999-3525, or visit the website at https://mothertobaby.org/.
Prescriptions And Pregnancy: Get Out Of Here With Your Stigma
I take medications to manage my pain, including nortriptyline, tramadol and pregabalin. When I first went online to research this issue, I faced a wall of stigma and guilt-tripping over women taking prescriptions while trying to conceive or while pregnant. I felt a lot of stress and guilt about my “choice” to continue taking medications – as if I was somehow failing as a mother before I even became one.
I want to push back against any notion that taking medications to manage your pain while TTC or pregnant is in any way selfish. Yes, some medications are dangerous during pregnancy and the information we have about them is sometimes limited. You have to do your research and perhaps switch medications and emphasize non-pharmaceutical strategies to manage your pain (like massage, acupuncture, gentle exercise, yoga and meditation). But we also know that being in pain, stressed, and unable to sleep while pregnant is harmful to a growing fetus. Reducing those illness symptoms is actually a responsible act, something that a caring mother would do. So to those of you who criticize women in pain who are taking prescriptions while trying to conceive, my message is: get out of here with your stigma!
If you have fibromyalgia and want to reduce your fatigue, this is what you need to know about the critical link between your sleep/wake cycle and adrenal hormones. Your adrenal glands play a vital role in determining your daily energy/fatigue cycle because they produce the important hormones cortisol and DHEA.
When I got the results of my adrenal function test, I found the explanation for my daily energy and fatigue cycle. This test measures the functioning of your adrenal glands, which are responsible for regulating the production of several critical hormones, including cortisol and DHEA. It can help you figure out your daily energy/fatigue cycle so you can modify your treatment and pacing decisions to best effect.
To be clear, I am not suggesting that the diagnosis of adrenal fatigue, a controversial condition among medical doctors, is the same as fibromyalgia fatigue. Instead, I believe that research has demonstrated the important role hormones, like cortisol, melatonin and DHEA, play in your daily circadian rhythm (sleep/wake cycle).
Abnormality in circadian rhythm of hormonal profiles has been observed in [fibromyalgia]. Moreover, there are reports of deficiency of serotonin, melatonin, cortisol and cytokines in FMS patients, which are fully regulated by circadian rhythm (Mahdi, et al., 2011).
These hormones are often deficient in people with fibromyalgia. Since cortisol and DHEA are produced by the adrenal glands, I think it is correct to say that ‘adrenal hormones’ are part of the fibromyalgia fatigue puzzle.
What is an Adrenal Function Test?
The test involves taking saliva samples four times during one day (before breakfast, lunch and dinner and at bedtime). My naturopath gave me a kit with four test tubes to spit into, and a plastic envelope to mail the samples across the country to Rocky Mountain Analytical labs (weird, right?). They tested my saliva for the cortisol level from each sample and graphed how it fluctuated during the day. I also had my overall DHEA level tested.
What is Cortisol and Why Should You Care?
Cortisol, also known as the ‘stress hormone’s is produced by the adrenal glands (endocrine glands that sit on top of the kidneys). You may have heard of cortisol and its role in the ‘fight or flight’ response to stressful situation – when the body releases high levels of cortisol , alongside adrenaline, to initiate that heart-pounding mode, pumped up feeling you get in a crisis.
The green shading on the graph in Fig. 1 shows the ideal downward curve from morning to night. There is a normal range in the population, with people on the upper end going from 7.0 to 1.3 ng/mL from a.m. to p.m. and people on the low end of the range going from 1.0 to 0.2 ng/mL.
My results: Mid-afternoon Slump and Energetic Evenings
You can see that my results are all off (above, the dark line connecting dots): high in the morning, low in the afternoon and back up again in the evening. I start the morning at 2.8 ng/ml, decrease to 1.4 by mid-afternoon, then increase back up to 2.6, and finally taper off at 1.0 ng/mL at bedtime. This explains my mid-afternoon slump and energetic evenings. Dr. Love also pointed out that I go from being in the bottom 50% of the normal cortisol range in the morning and afternoon, but by evening I am in the upper 50%, and trying to fall asleep with a relatively high level (l.0 ng/mL cortisol). This is probably contributing to my night time insomnia.
Yes, my results are in the normal range, but fibromyalgia involves increased central nervous system sensitization. My pattern of cortisol production is abnormal and I believe that a sensitized nervous system can interpret sub-optimal levels as intense fatigue.
How To Balance Your Cortisol Levels to Improve Energy
Be wary of many adrenal supplements that lower cortisol – if you have FMS your problem might be cortisol levels that are already too low. I need to boost my cortisol levels in the afternoon and reduce them in the evening. You can read about my favorite adrenal boosting supplements here. They include Vitamin C, B5, licorice and rhodiola. For night-time cortisol lowering, I like to use time-release melatonin to improve my sleep.
There are also important lifestyle changes you can make to balance your cortisol levels and improve your fibromyalgia symptoms (New Life Outlook). For example:
Relaxing music. Enya is still putting out the tunes, guys. Play it all day or take a break and get lost in it. At a nice low volume, of course.
Meditate. Grab your heating pad and a timer. Even just five minutes a day can keep major stress away.
Acupuncture. Once a week or once a month, for body and mind relief, I swear by those magic needles!
Exercise. Nothing too intense for me. I work with light weights and a slow pace.
Eat clean. The more you do it the better you’ll feel. Your body will thank you for not having to work so hard.
Consistent sleep schedule. Your body has a natural rhythm, just like Enya. Listen to it… Just like Enya (New Life Outlook).
What is DHEA and Why Should You Care?
Fig. 2 The numbers
DHEA is produced in the adrenal glands, and is a precursor hormone for estrogens and androgens (male and female sex hormones). This hormone helps to counter the stress effects of cortisol in some tissues, such as the brain and heart, and supports a healthy immune system. It is an important factor in balancing your cortisol levels. Studies have demonstrated that DHEA supplementation can help improve mood and sexual interest in women with adrenal fatigue. It’s role in fibromyalgia is unclear:
A small study published in 2012 suggested that DHEA levels may be low in post-menopausal women with fibromyalgia and that lower levels were linked with reduced pain threshold and tolerance and several measures of illness severity. However, studies have been inconsistent as to whether FMS involves low DHEA levels (VeryWell).
My naturopath recommended 1 start with 5 mg per day (a fairly low dose). I found that my energy is more sustained, even on days where I slept poorly. Processed wild yam and maca root can also increase DHEA.
Update: because I have endometriosis, boosting my estrogen by taking DHEA was worsening my pain levels, so I don’t recommend it for women with endometriosis, fibroids or breast/ovarian cancer.
Instead, I now take rhodiola when my fatigue is high. 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).
A Word of Caution About Balancing Hormones
One final note: “In advanced stages of adrenal fatigue, when the body is already exhausted of nutritional reserves, it is inadvisable to take supplements that may stimulate the adrenal glands. Doing so, would be like stepping on the gas pedal in a car that has no gasoline in it. Not only will you not get anywhere, it can actually hurt the car” (Dr. Lam). It’s best to consult with your healthcare provider and to educate yourself about improving your energy by supporting your adrenal glands rather than pumping them up with a bunch of supplements.
I was made aware of a great new book about Adrenal Fatigue called The Adrenal Fatigue Solution by Dr. Eric Wood and Fawne Hansen. I had previously read a book on adrenal fatigue several years ago, but a lot of research has been done since. This book presents the research in an accessible, easy to read way, along with naturopathic treatments. They also have a helpful website http://adrenalfatiguesolution.com/ with a lot of information there on adrenal insufficiency and treatments. (For full disclosure, the authors contacted me to review the book and provided me with a free copy. I genuinely feel it is a helpful resource on the topic, and have not been compensated for saying so).
Can probiotics help treat fibromyalgia? According to science, probiotics can strengthen the immune system, which is compromised in people with fibromyalgia. Probiotics may help relieve stress, anxiety and depression– which are common symptoms in fibromyalgia. In other words, take care of you gut, and it will take care of you!
Can probiotics help treat fibromyalgia? Despite all the research being done on friendly gut bacteria, there are actually no studies to date that directly answer that question. But when you dig into the science a little deeper, you can find a wealth of studies that support the use of probiotics to treat fibromyalgia symptoms. In other words, take care of your microbiome (the ecosystem of gut bacteria), and it will take care of you!
Probiotics Can Get Your Immune System into Fighting Shape
Ever since I developed fibromyalgia, I dread getting sick. Infections trigger flare-ups at best and relapses at worst. Many people with chronic illnesses report getting sick more frequently than when they were healthy, and believe that their immune systems are compromised.
This is supported by the science. In the case of fibromyalgia, researchers were able to develop a test for diagnosing the illness by examining cellular immunity. The study proved that people with fibromyalgia have disregulated immune function at the cellular scale. Participants with fibromyalgia were found to have increased chemical messengers called cytokines, which are involved in activating inflammation in the body (Sturgill, et al. 2014).
Strengthening the immune system using different means, including by taking probiotics, seems like a really good idea in the face of this kind of evidence. Up to 70% of the immune system’s activities occur in the digestive tract. There are more than 400 species of bacteria in the gut, which altogether add up to more than 100 trillion bacterial cells. So how do probiotics help keep your immune system in fighting shape?
Probiotics protect the lining of your intestines from harmful germs and toxins (Yan et al., 2011). They promote the health and integrity of the cells that line the barrier wall of the gut, keeping germs and toxins from being absorbed into the bloodstream. In the intestines, friendly bacteria compete with harmful bacteria, preventing them from growing out of control. Some probiotics even produce substances to kill harmful bacteria – this is a take no prisoners kind of fight!
Probiotics communicate with the immune system to strengthen its response to infections and enhance its repair of intestinal damage. (If the nerd in you wants to know, probiotics interact with intestinal wall cells in complicated ways, such as by releasing signalling proteins that stimulate the immune system). Friendly bacteria can act like guards calling for backup, priming the immune system to prevent and treat diseases, like allergy, eczema and viral infections.
Probiotics May Help Relieve Anxiety and Depression
As people living with fibromyalgia and know all too well, the challenge of living with chronic pain on a daily basis is very stressful and raises difficult emotions. Depression commonly occurs alongside chronic pain (Holmes, 2012). Research has demonstrated that anxiety disorders are more common in patients with chronic pain conditions like arthritis, fibromyalgia migraine and chronic back pain (Asmundson, 2009).
What does this have to do with friendly bacteria? Scientists are beginning to uncover a fascinating gut-brain connection. There is exciting preliminary research on the potential benefits of probiotics for mental health. Researchers call these types of friendly bacteria “psychobiotics.” One study looked at the effect of consuming probiotics on depression versus a placebo. After eight weeks, participants who took the probiotic had significantly lower scores a depression inventory test, as well as lower levels of inflammation (University Health News). If you’re interested in knowing which strains were used so you can pick a similar supplement for yourself –this study used 2 billion CFUs each of Lactobacillus acidophilus, Lactobacillus casei and Bifidobacterium bifidum.
How can probiotics act like “chill pills”?
Some probiotics are able to produce the same kind of compounds that the nervous system uses as chemical messengers. For example, gut bacteria can produce serotonin, which is a feel-good neurotransmitter released in the brain and nervous system when we are happy.
Probiotics can help regulate inflammation in the body. As you may know, excessive inflammation is linked to many chronic diseases, including depressive disorders.
Friendly gut bacteria interact with our hormones, and may help to turn off the response of the stress hormones cortisol and adrenaline.
Take Care of Your Microbiome And It Will Take Care of You
It’s important to remember that research has only studied a few strains of probiotics, among the many thousands that make up the human microbiome. It’s clear that each type of bacteria causes different effects in the body. Some of these effects are contradictory – some probiotics turn up the activity level of the immune system, while others turn it down. The sheer complexity of it all makes it difficult to draw any hard and fast conclusions. What is clear, however, is that having a diverse and replenished microbiome improves overall health.
The best way to take care of your microbiome is to regularly consume fermented foods rich in probiotics, and to take a probiotic supplement. It’s also vital to consume foods that help to “feed” the probiotics in your gut. After all, friendly bacteria need to eat too. Some foods help to nourish probiotics more than others, and these foods are called prebiotics. Some of the best prebiotics to regularly include in your diet are: dandelion greens, garlic, onions, leeks, asparagus, unripe bananas, barley, oats, apples, flax seeds, wheat bran, seaweed and cocoa. Prebiotics are often better consumed raw and cooked.
The best fermented foods to incorporate into your diet are:
yogurt: preferably a natural yogurt without the high sugar content of flavoured yogurt
kefir: a fermented milk product like drinkable yogurt
kombucha: tastes like a fruit flavoured ice tea, and is a fermented black tea and sugar drink
sauerkraut or kimchee: both are types of fermented cabbage
miso: a savoury fermented soybean product, usually used to make soup
tempeh: a fermented soybean product with a nutty flavour
Asmundson, G. and Katz., J. (2009). Understanding the concurrence of chronic pain and anxiety: state-of-the-art. Depression and Anxiety (26)888-901.
Do you feel like ‘the Princess and the Pea’ when you try to get a restful sleep? Here are my top 9 recommendations for improving your quality of sleep if you live with fibromyalgia, chronic pain or chronic illness.After being my own guinea pig, I wanted to share the most effective non-drug, natural solutions I’ve found to beating ‘painsomnia’.
The never ending search for a good night’s sleep… if you have fibromyalgia, chronic pain, or chronic illness, you know what I’m talking about. Getting a good night’s sleep is one of my biggest challenges day-to-day. Almost everyone living with FM (or CFS, chronic pain or another chronic illness) can relate to this struggle. There seem to be so many obstacles to getting a full night of restful sleep:
changes in how the brain regulates sleep/wake cycles (researchers have found that Fibromyalgia patients have disordered deep sleep – intrusions of ‘alpha waves’ associated with light sleep during deep sleep ‘delta waves’)
hormonal changes, such as reduced production of growth hormone, responsible for night time tissue repair
increased environmental sensitivity, such as to light or sound
Like a lot of other people with fibromyalgia, getting enough sleep is probably the single most important factor that determines my quality of life. In my case, I need to get about 9 hours of sleep to be able to function the next day. If I don’t, I am miserably exhausted and everything seems to go wrong – pain goes up, mood goes down and brain fog sets in.
A few years ago I did a sleep study. Before we move on, I would like to just say, for the record, that sleep studies really should be classified as a modern form of torture – what else can you call being forcibly held in place by many restraining wires, while watched through a Big Brother camera by the night guard, err, nurse?
Anyway, moving on… My sleep study showed that I woke up 66 times during the night, or about 14.3 times per hour. In addition, it found that my sleep efficiency was very low, at 64.5% (total time I was actually sleep divided by the time I lay in the bed). Basically, like many other people with chronic pain or illness, I’m just not getting a very restful sleep.
Over the years, I have tried countless supplements, medications, lifestyle changes, products and strategies to help me get a better night’s sleep. While most of these turned out to be ineffective, a number of them have significantly improved the quality of my sleep. I thought it might be helpful to share the results of being my own experimental guinea pig with you!
Quiet Down: Reducing Noise Distractions for Better Sleep
I think I might have actually become the world’s lightest sleeper since I developed fibromyalgia. I get woken up by trucks going by, my husband’s snoring, early commuters closing their car doors, my cat cleaning herself, my husband’s snoring, snowplough machines, dripping faucets, my husband’s snoring… You get the picture. Sudden noises are the bane of any insomniac’ s existence. Even if you don’t actually get woken up by a disruptive sound, it can disturb your sleep by shifting you from deep, restorative sleep into a lighter stage of sleep (Prevention). This is especially problematic for people with fibromyalgia, who already get less restorative sleep than the average person because of their illness.
1) Silicone earplugs: The first thing I tried to block out sound was, of course, earplugs. I tried all different kinds, and eventually settled on silicone earplugs. You might recognize these as a type of earplug used by some people when they go swimming to prevent swimmer’s ear infections. Instead of putting these plugs into the ear canal, the silicone molds to cover and seal the entrance to the ear canal. Personally, I find them more comfortable and effective than regular foam earplugs. For regular use, I think silicone earplugs are safer because there is less worry about damage from impacted earwax (caused by frequently pushing something into the ear canal).
2) White noise: But what if earplugs aren’t enough? This is where white noise enters the picture. White noise is a sound that contains many frequencies at the same intensity, like the sound of a fan, rainfall, or static on the radio (Prevention). By providing a constant, soothing background sound, white noise can blanket or drown out disruptive sounds that wake light sleepers. It works by reducing the noise differential between background noise and the disruptive sound – if the background sound is just silence, then a disruptive noise is very jarring, but if the background sound is white noise, then a disruptive sound is, well, less disruptive.
At first I wasn’t sure how adding noise would help me sleep better, when noise is what frequently wakes me up. But I found that I quickly adapted to the constant sound of the white noise. Best of all, I stopped being woken up by sudden noises!
Initially, I tried a number of free apps to play white noise on my phone. This is a good option to find out if white noise works for you. Over time, I found that my phone wasn’t able to play white noise loud enough to mask sounds like the neighbour’s leaf blower. Additionally, the app would sometimes cut out in the middle of the night and wake me up (yes, even sudden silence is enough to wake me). That’s when I found my new best friend, the LectroFan white noise machine. It is a small white machine that plays 10 types of white noises and 10 fan sounds. I really appreciated that it has a precise volume control so you can incrementally increase it to the right sound volume for you, and it can play a surprisingly loud sound for such a small machine. The best part is that it has an option to play continuously, instead of having an automatic shut off after a set period of time, like many other machines. Now, I’m never anxious that sudden sounds will wake me up because I know I can mask them with the white noise machine.
Lights Off: Why Darkness is Better for Sleep
Your body’s sleep-wake cycle is governed by light and dark. Darkness cues production of the sleep-inducing hormone melatonin to get you ready for a good night’s sleep. Unfortunately, artificial light can suppress the production of melatonin, which makes it hard to fall asleep and stay asleep (National Sleep Foundation). One of the simplest and most effective things you can do to improve your sleep is to reduce exposure to artificial light at night and early sunrise in the morning (unless you prefer to get up at the crack of dawn). Absolute darkness is an insomniac’s best friend. Here are the tips I have found most effective reduce light exposure:
3) Black-out Blinds: if you aren’t familiar with them, blackout blinds are made of specially treated material prevents light passing through them. In my experience, they’re one of the most effective ways to keep my room dark enough for a better night’s sleep. Whether streetlights, headlights or sunlight keep you up, blackout blinds are one of the best solutions. You can even buy portable black-out blinds for home or travel. Heavy drapes or curtains can also keep your room dark. Since I usually need to sleep in relatively late in the morning in order to get enough sleep to last through the day, blackout blinds have been a saving grace because they keep the sunlight out. However, it’s important to open all your drapes and curtains and blinds when you to get up, because sunlight in the morning helps to maintain a healthy sleep-wake cycle.
4) Sleep mask: in addition to blackout blinds, I often also use a sleep mask. That might seem like overkill, but indoor artificial light is another sleep disruptor for me. The lights from digital clocks, nightlights, computers/TVs, someone else making a midnight trip to the washroom, and many other sources can wake me up.
5) Blue Light Filter: Different wavelengths of light affect your brain differently. Researchers have found that blue light, which has a short wavelength, suppresses the release of melatonin to a greater extent than other wavelengths of light (National Sleep Foundation). Blue light is given off by electronics like computers and cell phones, as well as energy-efficient light bulbs. If you use one of these devices shortly before going to bed, you will probably find it more difficult to fall asleep or stay asleep. The best option is to simply turn off all of these electronics a couple of hours before going to sleep. The next best option is to install a blue light filter on your phone/tablet. By reducing the emission of blue light, you can reduce the negative impact of using the device on your sleep. Some phones come preinstalled with a blue light filter, like the Samsung Galaxy, but there are blue light filter apps for every type of phone or tablet. Often you can preset the filter to turn on automatically at a certain time in the evening, so you don’t even have to think about it.
Strange Bedfellows: Coping with ‘Painsomnia’
If you live with chronic pain, you have probably endured countless sleepless nights. Because insomnia often accompanies pain, the term ‘painsomnia’ was coined to describe this struggle. When my pain flares up, I sometimes see my bedroom as a torture chamber rather than on oasis of rest! After much experimentation, here are my recommendations for making your bed more comfortable so you can sleep better at night:
6) Neck Pillow: Personally, without a supportive neck pillow, I develop serious neck pain and migraines. Orthopedic or ergonomic neck pillows are often designed in a contoured wave-like form, and support the natural alignment of the head, neck and spine. If you sleep on your side, there are specially designed contour pillows for you (usually advertized in the product description). Materials like memory foam, latex or bamboo fibre help provide consistent, durable support. Orthopedic neck pillows are more costly than regular pillows,. In my experience, though, buying one is totally worth it! Pillows should be replaced every 1-2 years.
7) Customize Your Mattress: I’m pretty sure the ‘Princess and the Pea’ fairytale was written about a girl with fibromyalgia. A bed can feel like some sort of torture device to someone trying to sleep with chronic pain. I recently had to buy a new mattress because my nighttime back pain was too much to bear. In the process, I learned that there are many decently affordable online mattress vendors. Once you’ve selected a mattress, they ship it to you in a surprisingly small box, and give you a three month trial. If you decide to return it, you get your money back and the pickup service to retrieve the mattress is free. It was such a relief to know that I had enough time to test out my new mattress and, if I decided to return it, I didn’t need to worry about the cost.
8) Heated Mattress Pad: Unfortunately sometimes even the best mattress can feel uncomfortable to someone with chronic pain. My muscles become very tense at night while I sleep, and I often wake up quite stiff or with a muscle spasm. One of the best things I have discovered for improving my sleep quality is the existence of heated mattress pads. A mattress pad looks like a regular fitted sheet but it has small wires woven into the material that release a gentle heat. You can’t feel the wires at all, at least not sleeping on the heated mattress pad that I bought. There is a bedside dial that you use to adjust the heat level, and if you buy a queen-size one or larger, each side of the mattress pad has a separate dial for you and your partner. Sleeping on the gentle heat of the mattress pad all night has definitely reduced the number of muscles pain flare-ups I experience. I am less stiff and less sore when I get up in the morning, and I sleep better overall.
9) Mattress Topper: Another option to make your mattress more comfortable is to use a mattress topper – an extra layer to provide additional support while you sleep. I previously used a memory foam mattress topper on my old mattress, which I found helped to relieve pressure points by contouring to my specific shape. Another mattress topper option is the CuddleEwe, which uses specialty wool, and is designed to relieve pressure on your body contact points when lying down (ex. shoulders and hips) by diffusing weight better than a mattress can.
(This post contains affiliate links, but recommendations are based on my own opinions and have been in no way influenced by third parties. Anything you purchase through the affiliate links helps to support this blog, so if you are planning on doing some retail therapy anyway, consider clicking on the in-text links).
Chronic illness complicates holiday celebrations. Trying to prioritize self-care while also participating in the holiday season is, at best, a tricky balancing act. Recently I wrote about how I use mindfulness meditation to get the most of this time of the year – to stay present, savour the good moments and manage stress. I often turn to the collective wisdom of the blogosphere to learn how others approach the challenges of life with a chronic illness. I wanted to share a few of the insightful posts that I’ve read written by chronic illness bloggers. Some of them share helpful strategies and important ways to manage expectations so you can enjoy this time of the year. Others provide valuable insights that validated my own thoughts and feelings about what the holiday season is really like for people with chronic health conditions. I hope you get as much out of reading them as I did!
More than just practical tips for getting through the holiday season, this post suggests great ideas for changing your expectations about how to celebrate. For example, it asks whether you’re wearing yourself out trying to re-create past Christmas memories. I definitely fall into this trap every year! The suggestion to create new traditions that fit that are workable for someone with a chronic illness is really great advice.
This lovely little post describes how a snowflake is the perfect holiday symbol for life with chronic illness. The experience we each have with chronic illness is as unique and individual as a snowflake. There are several important lessons this symbol can teach us, including that comparing ourselves with other people is an unproductive exercise.
This post talks about the non-material gifts that people with chronic illness wish they could receive – like having their boundaries respected or not being criminalized for taking opioids to manage chronic pain. Raising awareness about the social changes that need to be made to really accommodate people with invisible illnesses is important because, really – that would be the best gift of all.
I thought this post really captured the ambivalence that people with chronic illness may feel about the holidays – we hope we’ll be able to enjoy the plans that we’ve made, but we feel anxious that our symptoms will get in the way. Many people with chronic illness will be having a quiet Christmas or other holiday celebration. And while this can be truly enjoyable, we can miss the get-togethers and festive preparations going on around us.
If you care about someone with a chronic illness, this post describes the best way you can give your love and understanding to them this holiday season. For example, how to connect with them when a traditional holiday event just isn’t possible. This post really puts into words what I want to communicate to family members and friends this time of the year in a clear and thoughtful way.
This post is a very thorough guide to getting the most out of your celebrations this holiday season. It shares a mix of practical tips and important realizations for balancing rest and purposeful activities. This post is written from a Christian perspective on celebrating Christmas, yet I think the realization that intentionally focusing the activities you do choose on what is most meaningful to you can be helpful to anyone with a chronic illness celebrating a holiday. Prioritizing self-care and rest can take several forms and this post describes several useful strategies.
May your days be merry and bright this holiday season and may you be surrounded by the people you care about most! xx
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.”
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’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.
Did you know that spending time around pets can reduce pain and improve mood? But more than that – through their affection and antics – they give us a sense of optimism and hope for the day ahead. The slow-paced life that comes with chronic illness means we can give them companionship and endless cuddles. It’s a perfect match!
Two days ago this cutie came to live with us and we couldn’t be more excited. Her name is Sarah and she’s an affectionate, but shy, two-year-old grey tabby. Her arrival felt like a ray of sunshine on a grey day.
Pets enrich our lives and the benefits can be measured in health improvements: “According to the Centers for Disease Control and Prevention, pets… can help lower blood pressure, cholesterol levels, triglyceride levels, and feelings of loneliness. They can also increase opportunities for getting exercise and engaging in outdoor activities, as well as provide more opportunities for socializing with others” (Confronting Chronic Pain). In particular, contact with animals been found to benefit people living with chronic pain. For example, visits with therapy dogs at a pain management clinic was found to reduce pain and emotional distress in patients, as well as improve the emotional well-being of friends and family members who were there with them (Confronting Chronic Pain). Pets help reduce pain and stress, as well as giving their humans companionship, and a sense of purpose.
Four months ago we had to put our lovely 18-year-old cat Lily to sleep. She was originally my husband’s cat and we all moved in together about five years ago. Lily with fiercely loyal and affectionate. Initially she didn’t think much of me because I took up too much of my husband’s attention. Her modus operandi was nonviolent resistance – she never scratched a human being in her life. Instead, Lily showed her opinion of me by scratching my chair and attempting to get my husband’s attention if she felt he had not paid her due deference. But since I was her daytime companion, the giver of treats and nearest available warm lap, we became friends and, eventually, family . Lily’s favourite time was when the gang was all together in the evening, sitting together – and preferably paying attention to her. She was always there for me on the hardest days when I felt unwell, and it meant a lot to me that I was able to be there for her in her golden years. Saying goodbye to her has been a big loss and has made getting through my health challenges that much harder.
We knew that if we waited to ‘get over’ losing Lily to adopt another, we would probably wait forever. Enough time has passed that we felt ready to welcome a new, and different feline into our lives. Sarah has had a difficult two years of life. She was a stray who comes from a high-kill shelter and didn’t have much contact with people, until a foster family took her in. They provided her with a good home, but apparently the presence of multiple cats and kids was a little overwhelming for this skittish girl.
They think she will thrive in a peaceful and quiet environment. That pretty much describes life at home with me and my husband. Living with a chronic illness necessitates a slow pace of life. Sleep in; breakfast, coffee and the news; stretch and meditate; spend the afternoon writing and on the computer, nap breaks in between; go for a walk when my husband comes from work; and spend the evening together catching up on our favourite shows. Sarah will have lots of company, plenty of time for play sessions, and no one will interrupt her cat naps. I will gain companionship, the endless amusement that cats can provide (like watching an endless playlist of cat videos) and the enjoyment of taking care of another (something other than my health).
As a person with chronic illness, living in a society obsessed with productivity, I often feel like a round peg in a square hole. My goals include learning to savour the small moments, staying present more of the time, and learning to take more time off and push myself less. The goals of my friends include career success, home-ownership and completing their first triathlon next year. For them life is busy busy busy and for me it’s the opposite. There’s something wonderful about the fact that Sarah will fit into my slow-paced lifestyle like a round peg in a round hole. Once she gets used to us, my hope is that living here will be safe and healing for her. I hope she will be sleeping on our clean laundry, getting into trouble and generally bossing us around in no time.
Hope. It’s a powerful force. When you live with a health condition that’s lifelong, the chronic part can blunt the hope part. It’s easy to become habitually cautious about anything new – after losing many of my abilities, I have a lot of self-doubt about what I’m capable of. When we saw Sarah’s picture and read her story online, I was torn between hoping we could provide her with the right home and the creeping doubt of trying anything new that people who live with chronic illness develop over time. I worried about the differences between looking after a geriatric cat you know well and an energetic two-year-old cat you’ve just met. Writing the animal rescue coordinator to start the adoption process was a spontaneous act of hope. Of course, there are things that I reasonably should not attempt to do because they will leave me feeling awful, such as working full time or attempting a triathlon. But that there are other things that I reasonably could attempt to do, but a lack of spontaneity – of joie de vivre – and, yes, of hope –held me back. I’m glad I didn’t listen to the voice of doubt.
For the moment, Sarah has primarily taken up residence living under the futon. Last night she came out for the first time while we were awake, walked around, and lay down to survey us. It was an exciting moment, and the first step she took in trusting us. Eventually she will be part of our family and, besides all of the health benefits of adopting her, I think it’s the healing power of hope that pets like Sarah offer us most.
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