Why It’s Okay Not To Work When You Live with Chronic Illness

Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.

Why It's Okay Not to Work When You Live With Chronic Illness

The biggest change in my life that followed my fibromyalgia diagnosis was leaving my career because I just physically could not keep up any longer with the demands of the job. I’ve never felt more conflicted about making a decision. On the one hand I felt relief – it was incredibly stressful to constantly fail to meet expectations while working harder than ever before. On the other hand, I felt like I was losing a core part of my identity. After all, a career is not just what someone does between 9 to 5 – it’s often how a person understands and defines themselves.

Have you ever noticed that the first question someone asks you after being introduced is “so, what do you do for a living?” It’s common to answer the “what do you do for a living” question by saying “I am a ___“.   In our society, an occupation is not just what you do but who you are.

We place a moral value on being hard-working – putting in daily effort to provide for your family and contribute to your community – as long as you get paid for it. I still dread meeting new people and having to answer the what do you do question. It’s hard not to internalize the negative judgments about people who don’t work – usually variations on ‘they’re lazy, incompetent, and a burden to society.’ In Canada, where I live:

  • 14% of people with fibromyalgia reported that they were permanently unable to work (compared to 2% of the general public);
  • 43% had annual personal income less than $15,000 [poverty line] (compared to 29 per cent of the general public) (Parlor).

“Our society is largely driven by money, profit, and earning power, and this makes our professions a major part of how we identify.  So if you lose your job, you can easily lose your identity, too” (Norris, 2016). I felt so disoriented in the months after I left my job. It was hard to figure out who I was now and how I fit in.

As I began to engage online  with other people living with chronic illnesses and disabilities, I learned more about how to understand work and disability in our society, and what that meant for me as I transitioned to staying at home.

Definition of Disability:

Initially, the label of ‘disability’ did not resonate with me. I associated it with a permanent condition like vision-loss rather than a fluctuating illness like fibromyalgia. But once I learned the definition of disability, it became clear how it applied to my situation. According to the American Disability Association, a disability is a physical or mental impairment that substantially limits major life activities (Blahovec).

Fibromyalgia impairs my abilities by causing pain, fatigue and brain fog. The lack of truly flexible accommodation in campuses/workplaces, like fixed work hours, deadlines and location, combined with stigma about invisible illnesses/disability, prevents my full participation in society.

Is Disability an Individual Problem?

The most common way we look at disability in our society is through the lens of ‘normal versus abnormal’. A person with a disability is different from ‘what is normal’ because of their limitations. This understanding of disability is often called the medical model – disability is an abnormal, medical condition affecting an individual (Scope).

We often hold up ‘inspirational’ examples of individuals with disabilities who ‘overcome’ their limitations by ‘fighting through’ the challenges they face, all the while having a good attitude (Abilities). The flipside of this is if you go about your business, pacing yourself within your limitations, you may be judged for “playing the victim” by “giving in” to your disability!

Disability as a Social Issue

If we were able to create an inclusive society, which removed the barriers that restrict life choices for people with disabilities, then everyone could participate equally in our communities. “The social model of disability says that disability is caused by the way society is organized, rather than by a person’s impairment or difference” (Scope). Barriers can include attitudes (stigma, discrimination), policies (workplace accommodations) and physical design (accessible entrances, transportation). For chronic illness advocates, joining the disability movement can help to “advance not only the goals for people with similar challenges, but for the whole disability movement” (Blahovec).

After I learned about the medical model versus the social model of disability, I felt like a light bulb went on inside my head. Here’s what conversations around disability taught me about living with fibromyalgia, and I think applies to anyone who needs accommodations at work, or no longer works:

  • Having an illness like fibromyalgia is not a reflection of your character. No one works harder than someone with a chronic illness – every day is a struggle to work through symptoms and do your absolute best to be where you’re needed.
  • News flash for your inner critic – not being able to participate fully in work/school is as much about ablest barriers as it is about physical limitations, and neither of those things is your fault!
  • If your contribution to the world is not in the form of paid employment, it is no less valuable than anyone else’s. The world is a better place because you’re in it!
  • Finding your identity outside of career makes you a more well-rounded person, whether it’s in relationships (like being a parent) or passion projects (creative expression, writing/advocacy).
  • Pacing your activities within your limits is working smarter. There is no need to “overcome” or be “inspirational” – just living your life the best way you can is all you need to do.
  • Having an illness or disability is pretty commonplace. Living with fibromyalgia is not your individual problem, but just another thread in the fabric of the human experience overall (we need to normalize life with fibromyalgia rather than pathologize it!)

(This article originally appeared in the June 2018 edition of UK Fibromyalgia Magazine)

Resources

Abilities (Disability as Inspiration: Can Greater Exposure Overcome this Phenomenon?)

Sarah Blahovec (HuffPost Blog: I have a Chronic Illness. Here’s Why I Embrace the Label ‘Disabled’)

International Paralympic Committee (UN Convention on the RIghts of Persons with Disability)

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

Scope (The Social Model of Disability)

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Mind Games: How I Cope During a Chronic Illness Relapse Using Brain Exercises

relapse

Around the holidays a couple of years ago, I got a bad cold which left me exhausted. Of course, I assumed that once I got better, my (limited) energy would return. It didn’t. I spent months in a state of brain fog and fatigue. By the mid spring, the relapse gradually began to ebb, although I still didn’t return to pre-viral levels for several more months.

The next holiday season, my pelvic pain increased substantially.  As I wait for more procedures, I worry about how I will cope with this ‘new normal’, which is interfering with my sleep and sometimes restricting my movement to the length of my heating pad cord!

I felt completely overwhelmed at the outset of my fatigue relapse last year.  First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had.  Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities.  Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.

My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. Now that I’m facing a similar situation, yet again, I wanted to write them out for myself –  I hope they may help someone else out there too. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life.

1) Challenge Patterns of Negative Thinking: About a year after my diagnosis, I participated in a Cognitive Behavioural Therapy program for pain management. One of the core parts of the program was learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves”.[i]

For example, if you think in “all or nothing” terms – a cognitive distortion – you might believe “if I can no longer pursue my career, I am a failure” (click here for a list of other cognitive distortions). A common belief among the participants in the group (me included) was: “Since I don’t work during the day, all I do is sit around the house wasting time”. The facilitator asked us to challenge this belief by making a list of all our daily activities. I was surprised to have a long list that included, for example, preparing my meals, going for a walk, reading a book, writing a blog post, doing my strengthening exercises, etc. I actually do quite a few things each day, and I rarely waste my time.

Now I try to identify when a negative thought is actually just a distortion and then challenge it with the reality of the given situation. I use a great app called ‘What’s up?‘ that lets you journal your thoughts and feelings, rate your mood and then connect them to any unhelpful negative thinking patterns (not an endorsement, just an honest review). It helps to get my head right instead of jumping to the worst-case scenario, which in turn helps me to feel better!

2) Be Present: One of the most powerful tools that has helped me to cope with my illness setbacks 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.  Through mindfulness meditation, I have become better at recognizing when my mind as dwelling on the past or projecting into the future, and bringing my attention back to the present.

For example, I’m currently waiting on nerve block to treat my undiagnosed pelvic pain. I have a lot riding on whether this treatment will work – including being able to come off medications while my partner and I try to conceive. Just thinking about it makes me feel anxious and upset.  However, I won’t know anything until after the procedure, which is several weeks away.  Worrying about it now only makes me suffer more.  It’s better for my quality of life if I return my focus to the next best thing I can do for myself in this moment.

One reason I like the What’s up? app is because it includes several grounding exercises that ask you to identify things in your present moment environment, and bring you back to earth if you feel like you’re getting really caught up in a negative train of thought.  As my grandma used to say, worry about crossing that bridge when you get there!

Between spending time on your phone or binge-watching Netflix, it’s easy to become too distracted to enjoy the small moments in life. Meditation can help us relearn to stop and smell the roses. This is especially important for people living with chronic pain. Even during pain flares there are small moments of enjoyment if we stop and notice them — the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. Intentionally taking in the good moments by staying present while experiencing them is a powerful way to counterbalance the negative experience of feeling worsened symptoms during flareups or relapses.

[i] http://psychcentral.com/lib/15-common-cognitive-distortions/

Patients, Power, Participation: How Enrolling in Clinical Trials Can Help Ensure That The Future of Pain Medicine is Now

Clinical trials

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials.

“It’s a USB port for your brain, and it’s going to help you manage your fibromyalgia pain.” Imagine your doctor explaining this to you at your next appointment. She hands you the device – it looks like a headband with an electrode in the centre. “When the electrode makes contact with your forehead, it stimulates a nerve that connects directly with parts of the brain which regulate your nervous system. By wearing it twice a day for 20 minutes, your pain will be reduced and your mood will improve.” No drugs. No side effects.

Does this sound like science fiction? Amazingly, it may soon be a reality, thanks to a new clinical trial being conducted at the University of Cincinnati on an external Trigeminal Nerve Stimulation device. Research on these this device has shown positive results already for migraine, depression and PTSD.

Or how about sitting in a chair, drinking a cup of coffee, while a coil placed against the side of your head directs magnetic waves at areas deep inside your brain that are affected by fibromyalgia? This is called transcranial magnetic stimulation, and recent clinical studies have found significant pain reduction in people with fibromyalgia after twenty sessions spread over one month. These are just some of the next generation treatments for chronic pain currently being studied.

Since my diagnosis six years ago, I have tried dozens of treatments, prescribed by multiple specialists, with very limited results. I’m still unable to work full-time because of my chronic pain. The possibility that a new device, strategy or medication could reduce my pain so significantly that I could regain my activity levels seems like a dream just out of reach. I know that I’m not alone in this experience.

Given how critical it is for there to be safe and effective treatments for chronic pain, conducting new research has never been more urgent. I believe it is vitally important that people living with chronic conditions understand the research process and learn how they can advocate and participate in it, so that one day we can realize a world where chronic pain is easily treatable.

Participating in Research Trials: How to Ensure that the Future is Now

Treatment trials are necessary to get the gold stamp of approval for new medical interventions from the US Food and Drug Administration (FDA). Research proves that a new drug or approach is effective and safe. This validation is necessary for doctors to find out about new treatments and for insurance companies to cover the costs.

Ultimately, the only way that new treatments can be developed is if patients join clinical trials. Participating in medical research is the most proactive way patients can contribute to improving how fibromyalgia is understood and treated. Personally, I find the thought of channeling my frustration at the lack of treatment options and taking action by enrolling in a research study exciting and empowering.

Participants in clinical trials have the opportunity to access cutting-edge therapies before they are made widely available, often at leading medical facilities. Experimental treatments can be appealing to individuals who have failed to benefit from conventional treatments. There is no cost to participate in medical research and health insurance is not required. Additionally, some studies compensate individuals who join the clinical trial.

What Safeguards Are in Place to Protect Participants During the Research Process?

Many people are reluctant to consider enrolling in clinical trials because they worry about the safety of being a research “guinea pig”. This is a natural response when confronted with the unknowns of a new treatment. When I did my own research into the safety of clinical trials, I was reassured by the rigorous process that is in place to protect patients. It’s important to be aware that all experimental treatments come with the risk of side effects – and these can range from unpleasant to life-threatening, depending on the nature of the medical intervention being studied. You should discuss any potential treatment trials you are considering enrolling in with your healthcare provider first!

Before a study can be conducted, it has to be assessed by an Institutional Review Board, which is made up of doctors and laypersons. They evaluate the design of the study to ensure that participants have their rights protected and are not exposed to undue risk.

In order to participate in a treatment trial, you must give informed consent. This means you have had the purpose and process of the study explained to you, including any and all potential risks, and that you understand you can leave the study any time.

When you think of clinical trials, you probably think of pharmaceutical drugs. But, did you know that many clinical trials focus on alternative and complementary therapies (like massage or acupuncture), mind/body therapies (like meditation), lifestyle changes (like exercise) and medical devices? Some people may be interested in participating in research studying these non-drug pain management strategies (like these arthritis clinical trials that don’t explore new drugs).

However, research on new pharmaceutical drugs is required to follow a lengthy series of trials and evaluations – actually more so than for any other medical intervention. New medications are only tested in human participants after years of research on tissues from animals and human cells, followed by testing in animal subjects to evaluate safety. The US Food and Drug Administration (FDA) reviews this data before approving human testing of a new pharmaceutical. Clinical trials involving human participants must progress through three phases of testing before the FDA approves a new medication for widespread use. It’s no wonder that it takes years for new treatments to get approved!

Phase 1 – healthy volunteers are administered the medication in order to evaluate the safety of the medication on the liver, kidneys and other organs

Phase 2 – a group of participants who live with the targeted condition are administered the medication in order to assess its efficacy

Phase 3 – large-scale trials are conducted in order to demonstrate that the medication offers statistically significant benefits for the particular disorder, as well as assess its safety profile and adverse side effects

I hope that by having a better understanding of the research process, and the safeguards that are in place to protect participants, people living with poorly understood and undertreated conditions like fibromyalgia will consider joining clinical trials. It’s a very personal decision, and may not be right for everyone. But those who do participate will be helping others by contributing to new insights and better treatments for chronic illnesses. If you are interested in learning more about participating in clinical trials, or looking for research studies recruiting volunteers in your area check out Clara Health, https://www.clinicaltrials.gov/ or http://www.centerwatch.com/.

References

Cort Johnson. (2016). ‘Coils, Lasers and USB Ports to the Brain: the Fibromyalgia Clinical Trials Overview.’ Health Rising. Retrieved June 1 2018 https://www.healthrising.org/blog/2016/12/17/fibromyalgia-clinical-trials-overview-2017/

NFMCPA. (n.d.) What are Clinical Trials and What to Consider about Participating. Retrieved June 1 2018 https://www.fmcpaware.org/what-are-clinical-trials-and-what-to-consider-about-participating

Fibromyalgia Awareness Day: How a Fibromyalgia Diagnosis Changes Your Life Story

By Katarina Zulak at Skillfullywell.com

After Diagnosis - How Fibromyalgia Changes Your Life Story

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”.

Mindfulness Meditation for Fibromyalgia and Chronic Pain: Does It Really Work?

Meditation for Fibromyalgia & Pain: Does it Really Work?

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 on mindfulness meditation programs involving participants with 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.

 

References:

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 Medicine51(2), 199–213. http://doi.org/10.1007/s12160-016-9844-2

Pain, Pregnancy & Prescriptions: Why You Should Treat Your Pain and How to Manage Safely (While Trying to Conceive & Pregnant)

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!

How To Find Out If Your Medications Are Safe During Pregnancy

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/.

In Canada, you can contact Motherisk at 1-877-439-2744 toll free or online at http://www.motherisk.org/

Prescriptions And Pregnancy: Get Out Of Here With Your Stigma

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!

 

 

 

 

 

Hormonally Challenged: What You Need To Know About Adrenal Hormones, Fatigue, and Fibromyalgia

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.

The Critical Link Between Adrenal Hormones, and Your Sleep/Wake Cycle

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.

But cortisol also plays a vital 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. Melatonin, the ‘sleep hormone’, rises before bedtime and reduces cortisol production by the adrenal glands. However, in women with fibromyalgia, night-time melatonin has been found to be abnormally low and night-time cortisol abnormally high, probably leading to poor sleep quality.

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.

In some studies, a pattern of low daytime cortisol and high night-time cortisol is characteristic of a disordered circadian rhythm in some people with fibromyalgia.

 

Fig 1 My Cortisol levels during the day

Fig 1 My Cortisol levels during the day

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

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).

Resources

Fatima, G., Das, S. K., Mahdi, A. A., Verma, N. S., Khan, F. H., Tiwari, A. M. K., … Anjum, B. (2013). Circadian Rhythm of Serum Cortisol in Female Patients with Fibromyalgia SyndromeIndian Journal of Clinical Biochemistry28(2), 181–184. http://doi.org/10.1007/s12291-012-0258-z

Life Extension (Rhodiola)

Dr. Lam (Understanding Rhodiola Health Benefits and Adrenal Fatigue Syndrome)

Life Extension (Stress Management)

Mahdi, AA., et al. (2011). Abnormality of circadian rhythm of serum melatonin and other biochemical parameters in fibromyalgia syndrome. Indian J Biochem Biophys.  Apr;48(2):82-7.

New Life Outlook (Cortisol and Fibromyalgia)

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

VeryWell (DHEA Supplementation in Fibro)

How to Plan a Chronic Illness-Friendly Wedding

How to plan a chronic illness friendly wedding

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I was daunted about taking on the chaos that is wedding planning. Through trial and error we were able to plan a wedding that mixed tradition with our own style and my health needs. I wanted to share what I learned about how to plan a wedding that a spoonie bride (or groom!) can not only survive but enjoy.

*Spoonie: A person living with chronic illness, based on the spoon theory

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1. Be unconventional –  the standard all day, all night wedding format is not spoonie friendly. You know, getting ready, early afternoon ceremony, pictures, sit-down dinner, speeches, and dancing until late in the night. Add to that the fact that a wedding is an emotional high in itself. Most of us would lose all our spoons before the ceremony was even though! So pick the traditional elements that are most important to you but design the rest of your day within your limits.

KATIE AND GEORGE_9

In our case we picked a venue where we could have both the ceremony and reception, to limit the travel time – a historic house and gardens in Toronto called Cedar Ridge Creative Centre. We had an afternoon wedding, from 1-5, which was the length of time I thought I could handle. We had a garden ceremony followed by a cocktail style reception inside, with buffet lunch and wine. I gave up on dancing, because it’s not something my body agrees with. Finally, our photographer took mainly candid photos, except for a few posed family ones during the reception. This saved additional time.
I brought a bar chair to sit on during speeches (but still got sore from standing for too long overall). I was lucky that my best friend was an incredible maid of honour, and she did an amazing job at keeping me hydrated and fed  and reminding me to take mini-breaks. As the bride, you become very distracted by meeting and greeting all of your guests, so asking someone to help you remember your self-care plan is a key element to you enjoying your special day.

2. Be budget conscious …without too much DIY
Spoonies are often on budgets because of constraints on work and expenses on care, but  there is no need to go into debt to have a lovely wedding. We spent approximately $7000. The only additional expense was our choice to have a green wedding – organic flowers, catering and wine is slightly more expensive, but we felt it was worth it.

Here’s how we kept costs under control:

  • We rented a municipal property, which was far less expensive then private venues. Cedar Ridge Creative Centre is a historic house preserved by the city as an art gallery with public grounds.
  • We limited flowers. We only had bridal/bridesmaid bouquets during the ceremony, with the garden flowers standing in for floral arrangements. During the reception we had a few floral arrangements on serving tables – mostly single flowers in vases.
  • We only served wine rather than having an open bar.
  • Most significantly for saving on expenses, we didn’t have a sit down meal but rather a catered buffet lunch.  Everyone mingled and enjoyed chatting, which we really enjoyed.
  • Finally, we didn’t go away for our honeymoon, mostly so I could recover without the stress of travel. It also kept our costs down!

DIY can be taken to extremes and will most likely lead to flares. I would rather keep it simple than crash because I decided to do everything myself!

See if you can delegate – Our families helped by creating wall hangings (wallpaper on rectangular foam hung like paintings), and favours (seed bombs). My best friend baked a delicious gluten-free vegan cake (yes, it is possible but it took several trial runs!).
The only DIY I did was using rubber stamps on craft paper to make signs for the serving tables.

 

 

 

3. Organize brain fog away

  • Make a spreadsheet or use a planning app. When things randomly occur to you, add them immediately. Set aside time to review your lists when you feel less foggy. Most importantly, have your partner and maid of honour double check regularly. You will forget things and things will go wrong, so try to be accepting that this is part of the process.
  • I became good at delegating, and this was a surprisingly rewarding thing to do, Initially I felt guilty, but it was a warm and fuzzy feeling that  my friends and family were happy to help, showing their love and affection. Our wedding was better than we had hoped it would be and part of that was the feeling that everyone had pitched in to make it that way.
  • In order to relieve my anxiety that  would forget to tell someone something they needed for their tasks, we made checklist spreadsheets for all our ‘helpers’. It may have seemed a bit OCD but as I’ve said, stress is toxic for spoonies, and since it made me feel better, it was worth it!

4. Plan around tension and keep your boundaries
Oh family – things can sometimes get complicate. For example, I have divorced, remarried parents. A sit down dinner with seating arrangements seemed like a nightmare, so a cocktail party was my solution.

Because we planned our wedding in under 7 months, we came up with our plans for our day quickly. One bonus was this gave less time for anyone to share unwanted advice during the planning process 😉 Actually our families were mostly happy for us to plan the day how we wanted. From talking to friends planning weddings, I advise not having conversations with people whose opinion you don’t want while you are still in the planning stages.

In my opinion the advice that it’s your day so you can do what you want is unhelpful. It’s your marriage and you can do what you want… But the wedding is a celebration with your nearest and dearest. The day is really about celebrating with them. We compromised on a few things, but then we stuck to our plans. I found the phrase “oh that’s an interesting idea, I will talk to my partner about it” helped so much to show you are listening to your family members, but reserving the right for you and your partner have the final say.  Boundaries are important for spoonies as a key way to manage stress and tension in relationships –  which can be toxic to our health and well-being.

5. Practice self-care and take it one day at a time
Plan your self care! I asked my doctor for stronger sleeping pills for the days leading up to the wedding, which helped relieve my anxiety that a sleepless night would ruin my day due to fatigue. I put in appointments with my massage therapist, physiotherapist and naturopath in the days leading up to the wedding. I planned time alone and time alone with my fiance,  just to have fun. Still, I did not do this enough and started to resent the wedding for taking up all my available energy, which is limited enough as is.  In hindsight I would double the time taken for self-care and to make time NOT spent wedding planning.

My maid of honour carried an ’emergency kit’ throughout the wedding day. In addition to make-up and comb, we put in pain killers, indigestion relievers,  and scented calming oils.

Secondly, what I eventually learned was that there is only so much you can organize in one day. At some point you have to let go of what you can’t control and focus on the point of it all – celebrating this love you have found. I learned this by just getting too overwhelmed and having to give up on extra tasks. I  wish I had started by taking it one day at a time! But being a bride inevitably takes over for a little while, as any married person will agree.

KATIE AND GEORGE_18

6. Finally, don’t read bridal magazines! This is NOT “the landmark taste-making event of your life” or whatever panic inducing nonsense they write. This is about love and family and friendship and fun. It’s A day, a big day, true, but not THE day. Spoonies don’t need extra stress! Or extra work! Or hand-dyed organic cotton ribbons to tie around chair backs for a shabby chic effect… Plan this day for you, your love, and your family and friends, not for anyone else!

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Probiotics for Fibromyalgia: Help Your Gut Help You to Boost Immunity and Relieve Anxiety

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!

Probiotics for Fibromyalgia: Help Your Gut Help 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

Resources:

Asmundson, G. and Katz., J. (2009). Understanding the concurrence of chronic pain and anxiety: state-of-the-art. Depression and Anxiety (26)888-901.

Healthline (The 19 Best Prebiotic Foods You Should Eat)

Holmes, A., Christelis, N., and Arnold, C. (2012). Depression and chronic pain. MJA Open Suppl (4):17-20.

Psychology Today (Do Probiotics Help Anxiety?)

Psychology Today (The Gut-Brain Connection, Mental Illness, and Disease)

Sturgill, J. et al. (2014).Unique Cytokine Signature in the Plasma of Patients with FibromyalgiaJournal of Immunology Research.

University Health News (The Best Probiotics for Mood)

Yan, F., and D. B. Polk (2011). Probiotics and Immune Health. Current opinion in Gastroenterology 27 (6): 496-501.

 

Find other fibro blog posts on the Fibro Blogger Directory Friday Link-up

The Top 9 Things I Do To Sleep Better At Night Despite Chronic Pain & Fibromyalgia

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’.

Top 5 Things I Do to Sleep Better Despite Fibro and Pain

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:

  • pain
  • 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).