A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

A Compassionate Chronic Christmas: How to Extend the Holiday Spirit Towards Yourself This Year

When I think of the holiday season, two competing feelings immediately come up – nostalgic happiness at the thought of celebrating with loved ones (as well as the Christmas cookies), and impending panic at the logistical nightmare of shopping, decorating, baking and visiting. Chronic illness has tilted the balance towards anxiety outweighing anticipation because  my symptoms through so many obstacles in the way of getting ready for everything the holidays entail. Last year I shared mindfulness tips for managing the stress that can accompany the month of December – through staying present, being self-aware and treating yourself with kindness.

This year I’m reflecting on the true spirit of the holidays and what I really want to celebrate. The thing is – for most people, shopping till you drop, cooking up a storm, decking the halls, party hopping, and getting up early with the kids to open presents from Santa – is the essence of the Christmas celebration. Ideally, bonding with your loved ones over good food and the fun of exchanging presents puts family and togetherness at the heart of the holiday season.

A common criticism about how Christmas and other holidays are celebrated is that perfectionism over decorating and party planning, as well as greed in the form of materialistic gift-giving, take over the true purpose of the season. The expectations that we internalize and put on ourselves can really ruin the holiday spirit. What I’ve come to learn is that, If you live with chronic illness, you will inevitably fail to do all the things you’re supposed to do this time of the year. It sucks! But I’ve also learned that we don’t really have to live with the stress, disappointment and sense of failure that result from setting unrealistic holiday goals.

By returning to the core values underlying Christmas, Hanukkah, and other celebrations – generosity, compassion, hope, gratitude and love – I think we can find a new ways to meaningfully celebrate this time of the year. I’m trying something radical this year – extending some of those holiday feelings towards myself. So often I read tweet and blogs about how those of us who live with chronic illness are overachievers or perfectionists. Most likely the person you showed the least compassion and kindness to last December was yourself – am I right?

So what does the holiday season look like if I am compassionate to myself? Making more realistic plans and setting gentle boundaries is the first step. We have three families to celebrate with – my in-laws and my Mom’s and Dad’s families. This year we told everyone that back-to-back celebrations would not be possible. The end result  is that we have Christmas Eve plans, and Boxing Day Plans, but  we are staying home alone on Christmas day. Initially I felt quite guilty about this because I know everyone would love to see us on that day, but if I’m not gentle with myself I will ultimately end up having to cancel. And that would be worse! Compassion is like the oxygen mask analogy – you have to put yours on first before you can help the people beside you.

Another way that I am treating myself with more kindness is to use a softer and gentler tone in my own mind towards myself. When I start to feel stressed about not getting perfect gifts for everyone, or whatever problem that my inner gets judgmental about, I’m trying to take a deep breath and responding instead with more compassion and understanding. A good question to ask yourself is “what would I tell my best friend if she was facing this issue?”

I recently read a book called The Mindful Path to Self-Compassion which gave me the insight that, while we can’t change the challenging experiences or difficult emotions we face, we can change how we treat ourselves as we go along. Much of our suffering comes from resisting what is unfolding – worrying, ruminating, regretting, dreading, clinging, judging – rather than from direct experience of a painful circumstance. But if we can befriend ourselves, and compassionately hold ourselves while we go through a tough time, a lot of the unnecessary suffering can be short-circuited. It’s an ongoing practice, of course!

So far, I’m already finding it helpful to use the ‘loving-kindness phrases’ from compassion meditation to wish: “May I be safe, may I be peaceful,  may I be joyful, may I live with ease and wellbeing”. I repeat these phrases both when I’m sitting in meditation or feeling anxious during the day. This is a secular practice I feel comfortable with, but many people send a prayer rather than a wish. In the Christian tradition, you are asked to ‘love you neighbour as yourself’, meaning cultivating love for yourself and caring for others. This can be done as a blessing exercise: “May I experience God’s love”, repeated for peace, safety and wellbeing.

In the guided meditation, we are then invited to focus on our feelings of love and compassion for people we are close to by repeating wishes for their happiness and well-being (May he/she be safe…peaceful…joyful…live with ease and wellbeing). Then, we extend those feelings to strangers and people we may have difficult relationships with. Finally, we practice extending love and kindness to all beings in the world. Here is an additional guided practice, along with the script, from Mindful Magazine.

If you are in conversation with someone at a holiday gathering, you can silently repeat the phrases to yourself as a wish or a blessing for them. Staying present is one of the best gifts you can give those you care about, rather than getting distracted by ticking items of your ‘perfect holiday to-do list’. Loving kindness phrases can re-anchor you in the moment to the values you are trying to put at the heart of the holidays.

This Christmas, as I try to direct the spirit of the holidays towards myself, I hope that, in turn, I can pass it on by treating my loved ones with more gratitude and loving kindness! By emphasizing these values, I think  how we choose to spend our time will change. What form of togetherness actually gives you a sense of meaning and connection?  Since pacing limits what I can do, I’m going to prioritize the things that really matter and hopefully have a heartfelt holiday season!

3 Fibro Technology Hacks For Getting Things Done

3 Fibro Technology Hacks For Getting Things Done

Fibromyalgia makes it hard to get things done. Pain, fatigue, and brain fog conspire to slow your progress no matter how determined you are to accomplish your goals. I want to share the three most helpful technology hacks that I use for getting around the challenges of living with chronic illness. (All of my suggestions are based on my own preferences, and are not sponsored or affiliated with any companies or apps).

Voice Dictation Software: The last time I was able to type a single page on my computer was the year before my fibro diagnosis. Shoulder pain, neck pain, carpal tunnel, pinched radial nerve – I developed any and every pain related to computer-work. No amount of ergonomic-anything was able to make it comfortable for me to type. Like many people with fibro, home is where I’ve spent most of my time since my diagnosis. Being unable to use my computer was very demoralizing because the internet was my gateway to the wide world beyond my home.

In the past few years voice dictation software has become significantly more accurate. In fact, voice dictation is 2-3× faster than touch typing! Most importantly, it’s significantly easier on your body. Once I realized how much pain I could save myself, I began exclusively using voice dictation on all of my devices. On my phone and tablet, I use Google Voice typing to dictate text messages and emails. This is more gentle on my wrists than texting, but editing  any mistakes has to be done manually. On flare days, I have to stay away from doing too much on my phone.

My favourite voice dictation software is Dragon Naturally Speaking by Nuance, which is for desktop and laptop computers, both PC and Mac. Not only can you dictate and edit by voice, but you can also command your computer and mouse by voice! It takes a while to get up to speed on how to use Dragon (eventually I got the book Dragon Naturally Speaking For Dummies). However, with a little bit of patience, I’ve been able to use my computer again, and reconnect with the great big world out there. Most importantly, I have been able to spare myself a lot of upper back, neck and wrist pain. One unexpected benefit is being able to work on the computer while standing, sitting or even lying down via my headset. That’s about as fibro-friendly as it gets!

Pomodoro Pacing Apps: So you’re feeling pretty well, better than you have for a few days, and you decide it’s finally time to get some things done. You dive into doing the laundry, clearing your email inbox, or getting the groceries. But in your rush to finish the task, you blow past your limit and end up crashing. The next day you wake up with a flare. Sound familiar?

Theoretically, I know I will be more productive if I do things in small chunks, rather than trying to get it done all at once. I know that I should take small breaks. Closing my eyes and resting for a few moments helps to prevent brain fog. Shifting position, stretching or walking around really helps to banish back pain. But in the moment I find it really hard to remember to take those breaks. In frustration, figuring that ‘there must be an app for that’, I decided to research productivity apps. That’s when I learned about the Pomodoro technique.

The Pomodoro technique is based on the principle that the most productive way to work is in short focused bursts, with mini breaks in between. Typically, this means 25 minutes of work followed by five minutes rest, with a longer 15 minute rest after several work sessions. For people without fibromyalgia, this technique has been shown to increase productivity. And, of course, there are lots of apps for that!

I use one called Good Time, which lets me customize how long I want my work/break sessions to be. On a particularly brain foggy, achy day, I sometimes make my work-break sessions equivalent (15 minutes on, 15 minutes off). On a good day, I stick to the 25/5 minute Pomodoro technique. It’s particularly useful because I can customize taking a longer rest break – usually about half an hour – after two or three cycles of work/mini break bursts.

The problem with simply using the timer on my phone’s clock is that I forget to reset it once a single session has elapsed. You can set the timer on a Pomodoro technique app  to work continuously, so it automatically pings when a new session of work or break begins. It’s brain fog proof! No matter how many times I resolve to pace my activities, I always end up pushing past my limits. The notification bell reminding me that it’s time to take a break is the only solution I have found that actually works.

Voice Activated Virtual Assistant: The bane of my fibromyalgia existence is being unable to remember when I need to do things – deadlines, appointments, responding to emails or texts, or anything of that nature. The answer seems simple – add things to my to-do list when I remember them, and that way I’ll be able to keep track of all my tasks. Except, in order for that to work, I need to remember to check my to-do list! For the life of me, I can’t seem to do that. Brain fog is one of the most frustrating fibromyalgia symptoms, but virtual assistants can do some of the planning for you.

One day, when I was explaining my frustration about forgetting my to-do’s, a friend said to me “all you have to do is enable the Google assistant on your phone, and then verbally ask it to remind you about task X whenever you need to address it.” This was really a eureka moment for me. I can press the home button on my phone to activate the assistant, and say “remind me tomorrow morning at 10 a.m. to call Dr. Smith and book an appointment.” Then, the next morning at 10 a.m. I will get a reminder on my phone to call Dr. Smith. The reminder stays on my notification drop down menu until I clear it. You can even set reminders that will be sent to based on your geographical location. For example, when you get to the grocery store, you will receive the pre-set reminder telling you to “pick up cereal.”

Many of us don’t use the full functionality of assistants like Siri, Cortana, Google Assistant, Alexa, Bixby or Dragon Mobile. You can save notes to yourself if you want to jot something down before you forget it. If you want to compile multiple notes, like ideas for a project, you can send an email to yourself with of a complete list of your ideas at the end of the day. Additionally, you can add general reminders you might want to access at any time, like the license plate of a rental car. If you ask “what’s on my calendar tomorrow?” your assistant will tell you what you have scheduled the next day.

Virtual assistants can send texts, make calls, read aloud your messages, find emails and more by voice, which I find helpful when I have eye strain or sore wrists. Assistants can do calculations, so if brain fog is preventing you from figuring out how much to tip, you can ask for a little help.

Why You Should Use Social Media More If You Live With Chronic Illness

Why You Should Use Social Media More If You Live With Fibromyalgia (1)

Social media has a bad reputation. It’s full of trolls trying to inflict pain on other people anonymously through their computer screen. It’s a false representation of living the perfect life, stoking envy and despondency in others. It’s the ultimate vanity project, epitomized by the selfie.

And I would agree, it is all of those things. So how do I get from there to advocating that you use it more?

Over in our corner of the Internet, the way those of us living with chronic illness use social media is very different. Our trolls are benevolent, lending support through random acts of kindness, like messaging responses to others who are having a bad day. Validation, support, humour and advice are far more common than Twitter feuds. No one is pretending to have a better day than they actually are – we keep things very real. Since few of us know other people living with fibromyalgia in real life, social media offers a way to connect with other people who can actually understand what you’re going through. Being able to interact with other people when you’re stuck at home is a blessing, rather than a curse.

What Science Says About the Therapeutic Benefits of Social Media

Researchers have investigated the therapeutic benefits that people who live with chronic pain derive from using social media. One study (Merolli et al., 2014) found three common themes in the reported benefits from a global survey of chronic pain social media users:

  • exploration: finding information about self-managing the condition, because social media can “filter and guide people to useful information” that they are actually able to use
  • connection: interacting with other people who understand what you are going through and feeling less alone in your experiences
  • narration: sharing your story, expressing yourself, emotional catharsis, and learning from others’ experiences

Other studies have found that patients with chronic pain who use social media report positive health outcomes. Merolli et al. (2015) found that a positive impact on the ’emotional burden’ of living with chronic pain was the most reported health outcome of using social media, as well as cultivating ‘relationships with other people” and a greater ‘enjoyment of life’. Interestingly, chronic pain social media users also reported cognitive benefits, including an ‘ability to take in new information’. An improvement in knowledge of the disease and self-management has also been found.

Which Social Media Platform Is Right For You?

When it comes to choosing which social media platform to try, it’s helpful to think about what your purpose for joining is, and which sites you’re already familiar with. If you are looking for emotional support, then a closed Facebook group is the way to go. If you are hoping to raise awareness, then a large, public forum like Instagram or Twitter is more suitable. If you are looking for information, then Pinterest is a surprisingly useful source for articles and blogs. There are too many social media sites to cover them all, but here is a primer on the three biggest:

  • Twitter has a large chronic illness community, and I have personally found it easier to connect with other people through words rather than through pictures. For me, there’s a greater sense of going through the ups and downs of life with others on Twitter, which is helped by the fact that Twitter puts the posts of people you interact with most at the top of your feed. The best place to find other people is through Twitter chats, which occur at a set time. Look up #SpoonieSpeaks or #SpoonieChat if you are interested in finding out more. Or search for all of the most recent posts that use relevant hashtags like #fibromyalgia, #fibro, #spoonie, #chroniclife.
  • Instagram is another popular platform, where users post pictures, memes or inspirational quotes, and conversations occur in the comments section. You can also find posts clustered by hashtags, just like Twitter.
  • One of the biggest sites is, of course, Facebook. I have found that Facebook groups are the best part of this platform for providing chronic illness support. Larger groups tend to focus on answering questions and sharing information while smaller groups tend to focus on emotional support. If you’re concerned about privacy, or are looking for a support group, then a members-only group is the way to go – this is a feature that none of the other social media platforms have.

 

Too  Much Of A Good Thing: Common Pitfalls of Social Media Use

Even with the many benefits that social media use can provide, there are some drawbacks to consider. If you are feeling overwhelmed, sometimes scrolling through a feed of other people who are also struggling can make you feel like it’s all too much. Occasionally you may see someone turning symptoms into a competition (“mine are worse than yours”).

Keeping track of how many “likes” your post gets versus someone else’s post will feel about as good as any popularity contest does – it’s better just not to pay attention. Outside of the chronic pain community, many people use social media to present the false image of having a perfect life. Does anyone really feel better after half an hour of scrolling past all the happy pictures of high school friends going on exotic vacations, buying their first homes or having adorable babies? You might feel happy for them in principle, but seeing it all in one place is usually the opposite of uplifting. Research has found that scrolling through these types of social media posts can cause individuals to make negative self-comparisons to others, which in turn can worsen anxiety and self-esteem. In order to avoid this problem, you may find it helpful to create a profile dedicated only to connecting with the chronic pain community online.

Finally, it’s important to disconnect and make time every day to be present! Too much time on social media can be negative for your wellbeing. Even though we live with difficult symptoms, there are many simple pleasures to enjoy every day, like the taste of a good meal, noticing a pretty view, or sharing a hug with a loved one. Your virtual life shouldn’t get in the way of your real life. But connecting with social media is a blessing for those of us with chronic illness, as long as we practice ‘everything in moderation’.

 

References

Merolli, M., Gray, K.,Martin-Sanchez, F., & Lopez-Campos, G. (2015). Patient-Reported Outcomes and Therapeutic Affordances of Social Media. Journal of Medical Internet Research 17(1).

Merolli, M., Gray, K., & Martin-Sanchez, F. (2014). Therapeutic Affordances of Social Media. Journal of Medical Internet Research 16(12).

 

Why Hard Work Doesn’t Pay Off: Listening to Your Fatigue Instead of Fighting Through It

Why Hard Work Doesn't Pay Off: Listening to Your Fatigue Instead of Fighting Through It

I’ve never been a big fan of napping. I was that overexcited kid, running around, yelling “No! I am not tired!” Moving on to the next thing I want to do has always seemed more interesting to me than stopping and sleeping. You can imagine how well that impulse has (not) translated into living with fibromyalgia. The metaphor I like to use is putting a racing car engine in a beat-up old car – my mind always wants to go faster than my body can keep up with. But it’s not just curiosity that pulls me forward. I also put a lot of pressure myself to push through, to keep working until it’s all done.

I’ve learned that always pushing forwards is toxic for my body. I’ve also learned that the impulse to soldier on isn’t a personal failing. Believing that “hard work pays off” is a social value, something we are all taught growing up.  We attribute positive character traits to people who spend long hours at work, without ever making time for themselves. We describe them as being committed, determined, effective, ambitious, responsible, and upstanding, rather than just calling them workaholics. The flipside – laziness – is a cardinal sin in our productivity-obsessed culture. But encouraging this imbalance between activity and relaxation serves to support unhealthy attitudes and behaviour around work.

I’m far from the first person to point this out. In recent years there’s been a movement to prioritize emotional wellbeing. You hear a lot about self-care, emotional balance, burnout, stress management, mindfulness, and disconnecting from social media, among other things. Psychologist Guy Winch, in his TED talk How to Practice Emotional First Aid, explains our favouritism towards physical well-being over emotional well-being. He points out that, while we learn from a young age to put a Band-Aid on physical injury, we don’t learn how to treat our psychological injuries, like sadness, loneliness, or anxiety. Psychological pain has a significant impact on the body’s state of health, and increases the risk of chronic disease. The mind and the body are interconnected, and what affects one has an impact on the other.

I think chronic illness magnifies the mind-body connection. Living in a state of constant physical fatigue has significant cognitive and psychological consequences. Brain fog, frustration, anxiety, a sense of helplessness, and many other responses are common among people living with illnesses involving chronic fatigue. Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center in Baltimore, says that “The emotional impact of a diagnosis of chronic fatigue syndrome is different for each person, but it relates to the loss of the ability to do the things you were good at before” (quoted in Everyday Health).

Put another way, fatigue causes people living with conditions like fibromyalgia, to experience multiple and complicated losses. These losses occur in areas that affect our sense of self-identity, like career, friendships, hobbies, parenting, and daily functioning. Kate Jackson (2014) calls them ‘infinite losses’ because they are not time-limited – instead they are unending, which makes them harder to resolve.

So, you might be asking, what does this have to do with taking a nap? For people who don’t live with chronic illness, resting might be a straightforward solution to fatigue. A physical solution to a physical problem. Even for healthy people, however, I doubt that’s always true. Call it stress, emotional overload, or burnout, the impulse to push through when you actually should stop and recover can result in significant psychological and physical problems. Our general preoccupation with work and productivity encourages unhelpful mindsets like perfectionism, shame, anxiety, guilt, and low self-esteem. In turn, these feelings and beliefs can cause us to double down and work even harder in order to measure up (Psychology Today). It’s very difficult to stop and listen to what your mind or body need when you’ve learned to routinely override those signals.

I’ve read countless tweets and blogs from people living with chronic illness who are frustrated with themselves for overdoing it on a good day and causing a flare-up. I’ve wondered why it seems so hard for me to pace myself, to proactively rest, to achieve balance between activity and relaxation. Over time I’ve realized these problems occur because resting is not just a habit. When the fatigue settles in it can often feel like a gate slamming shut.

Fatigue, along with pain, are the primary restrictions that have been placed on my abilities. The resulting frustration or sense of helplessness is a manifestation of the sadness and anger over the ‘infinite losses’ caused by chronic illness. Coping with these feelings is difficult. In this context, it’s a lot easier to say “just go and lie down” than it is to actually do it.

Behind the decision to stop and nap is a whole set of thoughts, feelings and beliefs about how you relate to work and productivity. If I’m writing an article and I feel brain fog and fatigue setting in, my first reaction is to feel frustrated with my body and tell myself to “tough it out.” Even when I take the reasonable step of stopping and lying down for awhile, there is a part of me that feels a creeping sense of guilt or self-blame. In a world where people with disabilities are applauded for “overcoming their limitations,” as if disability is a failure to move past, it’s hard not to worry if taking breaks is some kind of character flaw. I believe that it’s this mindset, this negative self-talk, that sabotages our attempts at pacing.

Becoming aware of our thoughts and feelings is a powerful way to take better care of ourselves – many people find that regularly practicing mindfulness meditation, journaling, or cognitive behavioural therapy techniques very helpful for developing greater self-awareness. Maybe I’m making a mountain out of a mole hill, but I think it’s important that we talk openly about the social and emotional impacts of valuing work and productivity over balance and acceptance. We need to prioritize healing the psychological as well as the physical. Because, ultimately, resting is an act of self-awareness, self-compassion, and self-acceptance, not just a solution for being tired.

References:

Jackson, Kate. (2014). ‘Grieving Chronic Illness and Injury: Infinite Losses. Social Work. http://www.socialworktoday.com/archive/070714p18.shtml

Kromberg, Jen. (2015). ‘4 Difficulties of Being a Perfectionist.’ Psychology Today. https://www.psychologytoday.com/ca/blog/inside-out/201311/4-difficulties-being-perfectionist

Orenstein, Beth.(2010). ‘The Emotional Side of Chronic Fatigue.’ Everyday Health. https://www.everydayhealth.com/authors/beth-orenstein/

Winch, Guy. (2014). https://www.ted.com/talks/guy_winch_the_case_for_emotional_hygiene

 

Becoming the Author of Your Own Story: How Sharing Your Health Journey Can Improve Your Emotional Wellbeing & Increase Resilience

Connecting with others by sharing your story online is a powerful way to begin meeting your needs for emotional well-being. In this piece, I want to share how blogging and social media have helped me to find a sense of purpose, belonging and connectedness.

Becoming the Author of Your Own Story

The onset of my fibromyalgia came on gradually, as my symptoms snowballed over an 18 month period. I tried everything to accommodate my pain and fatigue so that I could continue my graduate school program, but I just couldn’t keep up. After I received my diagnosis, I finished up the term, and officially withdrew from school. I woke up the first day after submitting my final term paper, and felt like I was standing on the edge of a cliff – I was 26 and my career was over before it had begun.

But my immediate problem wasn’t that my future remained uncertain – it was that I had no idea how to fill my days. I had no routine, no tasks to accomplish, and no friends or colleagues to share my experiences with. I was alone all day, until my husband came home from work. Anyone that I wanted to socialize with (when I was up for going out) could only meet me in the evenings, after the work day.

I struggled to fill all these hours on my own. I remember waking up late one morning and thinking “good, now there’s less time to wait until my husband comes home.” In retrospect, I think that says a lot about how I saw my day: as time wasted.

I became painfully aware of what I was missing in life. You need to make connections with people beyond yourself. You need to feel like you’re contributing to the world around you. All of those things felt impossible when I was stuck at home by myself. Psychologists refer to this as self-determination theory –  that all people have three basic psychological needs for emotional well-being (Very Well Mind):

  • autonomy: being the author of your own story, making your own choices
  • competence: having a sense of accomplishment, learning new skills
  • relatedness: feeling connection and attachment to other people

Fibromyalgia can obstruct our ability to meet these needs. We lose our ability to work as hard as we did before, which limits professional accomplishment and a sense of competency. Unpredictable symptoms dictate daily life and can take away any feeling of control over your life, which is necessary for autonomy. Being stuck at home alone and/or less able to socialize can lead to isolation and a loss of connectedness.

But it doesn’t have to stay that way. Over time, I learned that connecting with others by sharing my story online is a powerful way to begin meeting these needs for emotional well-being. In fact, research demonstrates that “autobiographical storytelling” can have “substantial impacts on psychological and physical health even months after” (Hamby, 2013). In this piece, I want to share how blogging and social media have helped me to find a sense of purpose, belonging and connectedness.

Connection: When Social Media is a Blessing and not a Curse

One day shortly after my diagnosis, as I was googling strange fibromyalgia symptoms (which should be listed as a hobby for people with chronic illness), I stumbled on a list of top fibromyalgia blogs. Clicking through them, I felt a sense of connection with other people who understood what I was going through. It was validating to hear about other people who shared my experiences.

By following these blogs, I learned about tips and tricks for everyday life with fibro, caught up with research into the condition, and most importantly benefited from the wisdom of other people who were open and vulnerable enough to talk about their journey through grief, acceptance, identity, self-care, faith and all the other challenges of living with fibromyalgia.

Eventually, I decided to start my own blog. I didn’t have a lot of followers, but that wasn’t really the point. I interacted with other bloggers, and it was in those reciprocal relationships of reading and sharing that I found a sense of connection.

Social media gets a bad rap because of trolling, scheming Russian bots, and creating the false image of a perfect life. But your faith in humanity can be restored by the kindness and support chronic illness worriers show each other on social media – in Twitter chats like #SpoonieSpeak and #SpoonieChat, on closed Facebook support groups and on fibromyalgia forums (for a detailed list: https://goo.gl/EJLvZT). Social media can help people with fibromyalgia meet their psychological need for connection and relatedness.

Of course, spending too much time on social media can be overwhelming. If you are going through a difficult time, the online community can provide a lot of support, but reading about other people’s problems can be too much sometimes. It’s important to be kind to yourself and unplug when you need to!

Reflecting and Expressing: The Inner Journey of Writing Your Story

Putting your health journey into words, whether on a blog, on Twitter or in a private community, is a powerful act of self-care. I find that putting my story into words helps me to identify the key lessons I’ve learned, to reflect on what’s most important to me and to find my truth. Getting it out there is cathartic and reading back my own words gives me a new perspective on what I’ve gone through. Even in writing this piece I see how far I’ve come since my diagnosis, and I feel proud of that.

When I first started my blog, I didn’t know what to share. I wasn’t sure that I had anything important to say! I wrote about everything from book reviews, new recipes, research on fibromyalgia and bad doctor’s appointments. Even though I was all over the place, it gave me a sense of accomplishment to publish a post.

Over time I narrowed down my writing interests and decided my blog’s focus would be about navigating the challenges of fibromyalgia using self-care skills. I became more comfortable being open about my feelings and experiences. This can apply to vlogging, tweeting and other forms of social media too. In other words, I found my voice. This process was an inner journey, and it deepened my relationship with myself. I feel much more like the author of my own story, and am closer to meeting the psychological need for autonomy then in the early days of living with fibro.

The Power of Words: When Your Story Helps Others, It Helps You

Finally, I learned that sharing my story and the insights I’ve gained from my experiences can help others. Nothing brightens my day more than a comment from a reader that something I’ve written has resonated with them, validated their own experiences, or given them a new idea or approach for tackling a problem. Hamby (2013) explains that your “resilience is strengthened by recognizing that we are all experts in our own lives and we all something to share with others.”

One of things I enjoy most about Twitter are the random acts of kindness from users sending positive thoughts, gentle hugs, and spoons to a member of the fibromyalgia community who is having a bad day. This was an unexpected and lovely benefit that began with sharing my story online. Being able to provide connection and support to others can give you a sense of contributing to the world beyond yourself. It’s an important sense of purpose that many of us find missing developing this difficult condition. In this way, blogging and social media can help people living with fibromyalgia meet their psychological need for competency – a feeling of accomplishment and contribution beyond ourselves. While sharing your story doesn’t take your pain or fatigue away, in my experience it can start you on the road to improving your emotional well-being despite the challenges of living with fibromyalgia.

This article originally appeared in the July issue of UK Fibromyalgia Magazine.

References

Hamby, Sherry. (2013). ‘Resilience and… 4 Benefits to Sharing Your Story.’ Psychology Today. Retrieved 21 May 2018 from https://goo.gl/f5eiRm

Very Well Mind. (2017). ‘What is Self-Determination Theory?’ Retrieved 21 May 2018 from https://goo.gl/cQ8mzy

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)

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