Myths & Misconceptions about Fibromyalgia

A few weeks ago I wrote about the myths and misconceptions about UCTD, one of the diagnoses I have. Another diagnosis I have is fibromyalgia. This is because some of the pain I’ve experienced is not joint related, and the best explanation that could be given for it is fibro. While there are a ton of misconceptions about UCTD, I think there may be even more about fibro, particularly from the medical/healthcare community, which is unfortunate. So I wanted to see if I can help clear some common ones up.

  1. It isn’t a real illnessalso known as “it’s all in your head” or “you’re just depressed” or “you’re just tired.” In actuality it is a real diagnosis as designed by the American College of Rheumatology. Though it can be summed up as chronic, widespread pain, there are actual diagnostic criteria for it. Part of the reason people think it isn’t real is that the cause of Fibro is mostly unknown, though there have been some fascinating studies recently about possible markers found, and there are many theories (such as those by Dr. Gabor Mate) that suggest that it is at least partially trauma-related (think biopsychosocial approach – biological causes, psychological causes, sociological causes to illness). While there are many associations between fibromyalgia and depression (fibro can lead to depression, depression can also lead to pain/fibro), there is nothing to suggest that pain isn’t real or that it’s depression or general tiredness. (It also doesn’t lead to depression in everyone, nor does everyone that is depressed have fibro).
  2. It’s a catch-all diagnosis – on a related note, many people just assume that if a symptoms can’t be explained, then it has to be fibro. While I mentioned some of my own symptoms weren’t explained by UCTD, that doesn’t automatically mean they are from fibro. There are actual diagnostic criteria such as: (1) pain and symptoms over the past week, based on the total number of panful areas out of 19 parts of the body plus level of severity of fatigue, waking unrefreshed, and cognitive problems; (2) symptoms lasting at least three months at a similar level; and (3) no other health problem that would explain the pain and other symptoms. (American College of Rheumatology) More info. Interestingly, my previous rheumatologist told me that about 1/3 of people with SLE, RA, UCTD, etc. also have fibro.
  3. Tender points are needed for diagnosis – on the final related note, this is old news. While the diagnostic criteria does state that there are 19 areas checked, and doctors may look for tenderness, that has been removed from the diagnostic criteria (see the above more info for that too).
  4. It can’t be treated (or just take some medication and you’ll be fine)also known as “alternative treatments don’t work,” “you can’t do anything about it,” and “you shouldn’t exercise.” Apparently medication for fibro only works some of the time (I’ve read between 20-40%) so while it may be helpful it isn’t the best bet. I was put on Lyrica/pregablin for fibro symptoms, and I would say it helped some. You know what helped more? All of the alternative treatments and exercise I did – massage therapy, naturopathic medicine, chiropractic adjustments, physiotherapy. In fact I managed to get off of Lyrica because of exercise. I’m not the only one either. There are tons of reports of these things being helpful. And please note, I’m saying helpful, not a cure.

Hopefully this helps you feel better about your diagnosis, and/or this is something you can show friends and family who maybe have trouble understanding what you’re going through. And most importantly, keep making the most of it!

Video: Daily Mindfulness – Acceptance of Sadness and Grief

Sadness and grief are common emotions to experience when dealing with chronic pain and illness. Illness grief consists of grief of the loss we once had. (Here’s a podcast episode about it). When sadness is particularly strong, depression can set in. Finding effective coping strategies is important for all chronic pain/illness warriors. This meditation is one that can be quite helpful.

Keep on making the most of it!

What Foods are Good for My Mental Health & Chronic Illness?

I was reading an industry magazine put out by my association (British Columbia Association of Clinical Counsellors) and this issue was heavily focused on mental health for chronic illness, which I was obviously excited about. In it there was a 1 page article/ad for a book about BRAIN Foods, or which foods are specifically good for mental health. I noticed some overlap with foods that are good for autoimmune disease as well, so I decided to do a little more research and try to figure out which foods would be good for both. While having this knowledge can definitely help my clients, it is also helpful for myself.

Vegan dark chocolate mousse was my birthday dessert in Costa Rica in May 2019.

Before I get into what I’ve found as overlap (not everything does overlap to be clear, there are a lot of foods that came up for one or the other), I want to state that a lot of this depends on what kind of diet you follow. Someone who does AIP vs. Paleo vs. Keto, etc. will all look at this list and find things they can or cannot eat. What I’ve found works for me is to just cut out foods when I notice they don’t make me feel well. So I don’t eat gluten or dairy or meat (except fish) because those are the main things that bother me. However, knowing what can have more benefits from the list of things I do eat is helpful to know. I also want to say, that I am not perfect, nor do I try to be. I went to my brother’s wedding in another city, and while I did try to eat from my go-to list as often as possible, there were times (like at the wedding itself) where I did indulge in dairy, meat and gluten (I surprisingly didn’t hurt too badly after). I personally find it easier to stick to my diet (or rather, way of eating) if I don’t put pressure on myself to be perfect all the time (when I cook for myself I really do stick to it though).

All that being said, here are the overlap mental health and autoimmune foods I found from several lists and articles:

  • Fruits, such as blueberries, strawberries, blackberries, etc. (basically all the berries) – I love berries
  • Vegetables, such as broccoli, kale, and cauliflower – broccoli is often a staple for me
  • Fish, such as salmon, mackerel, herring and sardines – all of which are high in omega-3s and salmon is my fave
  • Nuts and seeds – sunflower seeds specifically came up on a list and I was like ooh reminds me of playing softball as a kid.
  • Sweet potatoes – literally another staple for me
  • Healthy fats, such as avocados, olive oil and coconut oil – I usually cook with avocado oil and I love avocados
  • Turmeric – my former naturopath recommended turmeric tea, which I find to be a lovely way to have more of it.
  • Green tea – I go through periods where I drink a lot of green tea
  • Dark chocolate – pretty much the only “snack” food on the lists and honestly, I got used to the taste (though I still prefer milk chocolate)
  • Whole grains – again, not something I eat anymore, but it’s definitely a better option than “white bread,” etc.
  • Coffee – I was surprised by this one, and I do love me my morning coffee. I do recommend no coffee after 2pm though as it can drastically affect sleep.

So, while you don’t have to eat everything from this list, it is probably helpful to try to include some of these foods regularly to improve brain functioning, decrease depression (depression is linked to inflammation in the brain much like AI is linked to inflammation in the body), and decrease illness symptoms. It can also be really helpful to practice mindful eating – check out my guided version here.

I love food, so hopefully this also helps you to make the most of it!

Video: Your Mind Thinks It’s a Mind-Reading Machine

We tend to believe everything our minds tell us. This is completely natural. However, our minds are not actually great mind readers. Watch the video for more on that.

As always, keep making the most of it!

Why Do You Feel Shame About Your Pain?

During my last supervision session with my clinical supervisor (which is recommended for all practicing therapists/counsellors to have), she asked me to think about how I address shame in session with clients and we could discuss it next time (unless I have more pressing topics I need to talk about). Interestingly, just a few days later I stumbled upon an article about shame, and then a podcast. Both around shame and illness. Shame is a natural human emotion that we all experience. Myself included. I’m trying to remember if I felt shame around my chronic pain/illness and if I did, I would say it was near the beginning of my healing journey, which almost feels like a distant memory. Yet, I think it’s really important for us to talk about shame because it is one of (if not the) most uncomfortable emotions to experience.

Shame, like all of our emotions is important. We wouldn’t have evolved all of these emotions if they weren’t useful in some way. If we go back to that caveman mind metaphor I’ve written about before, shame helped to keep us alive. As cave people, if we got kicked out of the clan, we would die because there would be less protection. So shame helps keep us in check with the expectations of those (clan members) around us so that we don’t get “kicked out.” The problem with that is, we will probably physically survive if we do get “kicked out” in 2022. It also, maybe even more importantly at this point in our history, lets us know when we’ve done something that contradicts our values (those qualities of action that determine how we treat ourselves, others and the world). When we don’t follow our values, we often experience shame.

Shame and chronic pain can often coexist. Many people with chronic pain experience higher levels of shame than in the general population (Boring et al., 2021). Part of the reason this happens is because chronic pain, especially if the cause isn’t quite yet known, is often invalidated – by family, friends, and healthcare professionals (especially medical doctors). When our pain is constantly invalidated by others, we are more likely to question the severity of our pain, hide our pain, and disregard our pain and other feelings. The more we do this, the more internalized shame develops. There are several problems with this:

  • shame can lead to depression – there is a huge correlation between depression and chronic pain as they can amplify each other. If shame leads to depression then…
  • pain not only increases but can also stick around longer – yes chronic pain means it’s sticking around, but to what intensity, to what end? and does it have to be that bad all the time?
  • it can also change our beliefs about ourselves – this can lead to increased substance use and other behavioural problems that just increase shame and pain
  • shame also causes stress, and we know from research by people like Gabor Mate and Bessel van der Kolk, this can cause physical symptoms such as chronic pain, as well as a myriad of other illnesses

How do we deal with shame? I mean, I’m always going to say that therapy/counselling (they’re interchangeable terms) is a good route to go because many therapists can help you talk through and give you skills to deal with these feelings. Brene Brown, who has done a ton of research on shame, has said that empathy is the best cure for it. Empathy is our ability to share in the feelings of others. Based on the definition of empathy, we need that support from others. What can we do for ourselves though? Kristin Neff, who has done a ton of research on self-compassion, has unsurprisingly found that self-compassion is an effective antidote to shame. As a clinical counsellor I am able to offer empathy to my clients, while not hiding away from shame when it comes up in session, which is generally effective. And then I teach my clients to be more self-compassionate so that they can deal with those feelings when they come up when they are alone. Try any of these self-compassion practices from my Youtube channel.

I hope this helps bring you an understanding of the natural experience of shame you may be feeling with your chronic illness. Keep making the most of it.

3 Ways to Reduce Rumination, Worry, and Attachment to Self Stories

Have you ever found yourself caught up in thoughts about the past? What life was like before your chronic illness/pain? Ruminating over and over about that old life… What about thoughts about the future? Worrying about what will happen to you and how your health will affect you, maybe even getting worse? Perhaps you are also really fused with the idea that you are just a sick person now and that is all your life will be. These are all common thought processes when you have a chronic illness or chronic pain. I’ve certainly dealt with these before. The problem with this dominance of the conceptualized past or future, or the conceptualized self, is that it often takes us away from living right now. It makes life worse. It increases suffering.

Rumination and worry are like the fog. Can you come back to the present?

I remember having the thought that I don’t want to suffer any longer. This was in the fall of 2016. My very recent ex blamed me for all the things that were wrong in the relationship because of WHO I was. What I quickly came to realize was that I was ruminating and worrying and fused with having an autoimmune disease. We didn’t break up because of who I was (trust me there were a lot of other issues that didn’t stem from me at all). However, the dominance of my thought processes wasn’t helping me at all. It was taking me away from the life I wanted to live and away from the person I wanted to be.

The Conceptualized Past & Future
I don’t think that being able to reflect on our pasts or contemplate our futures is inherently problematic. Our brains have evolved to be able to do this. Initially to keep us safe and alive. We just don’t run into as many instances of life-and-death situations anymore. When we excessively focus on the past, or ruminate, we tend to feel overwhelmed and depressed. When we excessively focus on the future, or worry, we tend to feel overwhelmed and anxious. Both anxiety and sadness can increase pain and set of flares for those of us with autoimmune disease, which in turn tends to lead to more sadness and/or anxiety. It’s a vicious cycle.

The Conceptualized Self
We all have stories we tell ourselves about ourselves. Like who we are, where we came from, and why we act the ways we do, essentially why we are the way we are right now. Often being sick or in pain is a large part of this story. The problem with these stories is that while they do contains some objective facts, they are also chalk full of our own subjective interpretations. When we are really fused with these stories about ourselves, we forget that life is constantly changing, most of it is not predictable, and we can also create change for ourselves. And yep, I know this is really hard to grasp when you have a chronic illness.

Why we need to contact the present moment
We we are stuck in the past or future, and when we dwell on our stories about ourselves, we are definitely not experiencing the here-and-now. The benefits of being present are plentiful, including the ability to gain more self-knowledge and self-awareness, enjoying our experiences more, feeling less pain (emotional and physical), and being more flexible in our interpretations of ourselves and of life. I meditate daily because it helps me become more present (and it took me so long to get into a daily routine). I also notice myself being able to come back to the present much faster throughout the day, even when I notice physical pain.

How do we counteract rumination, worry, and attachment to our self stories?

  • Mindfulness – it can be meditation, but really mindfulness means contacting the present moment, being here-and-now. So it can also be yoga, or mindful walking or eating. It can be fully engaging in an activity. It can be noticing your thoughts/feelings/sensations and then coming back to the present by noticing your feet on the floor. It can be many, many things, but it is always: being curious, open and nonjudgmental about your present moment experiencing. Check this out.
  • Noticing Self – the idea that there is a part of us that can step back and notice. Like the sky and the weather. The sky always has room for the weather. Even when the weather is thunderstorms and hurricanes, the sky is not bothered by it because eventually the weather changes. We can use this same part of ourselves, to just step back and watch our experiences without being swept away. It’s a safe place that just notices. This is particularly helpful for attachment to our conceptualized self.
    Check this out.
  • Creating Distance Between Ourselves and Our Thoughts – we can’t stop our minds from thinking, but we can notice when our thoughts are unhelpful and learn to let them pass like leaves on a stream. The more distance we can create, the more psychological flexibility we can have in order to return to the present. Check this out.

I know that was a lot of information! I’m a big believer in seeking help from a mental health professional in your area if you are really struggling with your mental health. Many people with chronic illness, chronic pain, TBI, etc. find it hard to cope on their own. One of the best things I ever did was go to therapy. I learned a lot of skills to help me cope and felt I had nonjudgmental support as I continued down this path we call life. And on that note, keep making the most of it!

Video: Daily Mindfulness – Inner Child Imagery

This type of practice can be deep and quite healing when you have chronic pain and illness. I do highly recommend you only do this if you have strong grounding skills and preferably if you’ve done this type of practice before and/or are able to debrief this with a licensed mental health professional in your area. For other mindfulness practices, check out my YouTube channel.

Keep making the most of it.

How to Find Inspiration in Poetry: The Peace of the Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
-William Berry

I think this is an absolutely beautiful poem for many reasons. Two main thoughts came to mind when I first heard it as I was attending a Compassion in Therapy summit in April (yes, I know I do a lot of these types of summits, they’re terrific). The first, is that it does remind me of self-compassion practices, and second, that nature has ultimate healing powers. While I’ve blogged about these topics before, I want to write about them in the context of this poem, as a way for me (and you) to remember why they are so important, especially if you have a chronic illness.

Costa Rica, 2019

Self-Compassion

Self-compassion is comprised of 3 elements: mindfulness, common humanity, and self-kindness. In the poem, Berry describes mindfulness of his thoughts in the first part, and then just being present with full experiencing in the second part. “I come into the presence of still water” and “I rest in the grace of the world, and am free.” These are very mindful phrases and experiences. Then there is the phrase, “I come into the peace of wild things who do not tax their lives with forethought of grief.” I see this as relating to common humanity as it suggests that all human “tax their lives” with these thoughts and feelings – in contrast to wild things, which (as far as we know) don’t have the cognitive abilities to have these thoughts that can consume us. Thinking is part of being human. What I think represents self-kindness in this poem is that (a) Berry doesn’t judge himself for having these thoughts, and (b) he makes the decision to take care of himself in the moment and give himself what he needs – a reprieve into nature. Now, I’m personally left to wonder, what can I do today that is self-compassionate? Maybe lay a kind hand on my chest, maybe imagining breathing in compassion for myself and out compassion for others, or maybe it is literally going outside into nature. What do you need?

Nature

Ecotherapy and forest bathing are totally a thing. I actually talked to a client of mine about this recently because they mentioned that they feel good in the forest, literally touching the trees. Me too. So much research supports being in nature. I recently listened to a podcast that suggested even just eating outside is good for us (which I immediately told my parents about because we ate el fresco all summer long when I was growing up). Near my apartment, there is an inlet with beautiful hiking trails along it and tons of big, beautiful trees that are ever-so-present in British Columbia. The air is so refreshing, especially if it’s recently rained. Everything about this trail (and really a lot of trails in this province) makes me feel good. Both physically and mentally. I had the same experience in Costa Rica. My friend and I would touch the trees and vines, really connecting with the beauty and nature, and all of the healing properties of it. When’s the last time you spent time outside? Is there a park near you that you can go to? Can you eat outside on your patio or deck?

Sometimes we can find inspiration to improve the quality of our lives (with these easy and gentle practices) in the most interesting places, like The Peace of the Wild Things. I hope this inspires you to keep making the most of it!

Video: Ways to Understand Anger

This is a metaphor I often use when explaining anger. It has a specific purpose and function for us, but there is almost always something beneath anger. I hope this piece of psychoeducation helps you to understand yourself better. Remember, the content on this blog does not replace seeking help from a licensed mental or other healthcare professional in your area.

For a meditation on working with anger, click this link.

Keep making the most of it!

Why Are You Attached to Your Illness Identity?

How many times have you said, “I am sick” or “I am a Spoonie” or “I am in pain” or “I am depressed,” and so on? And how often do you feel that is really so? That is what you are? If your answers to one or both of those questions is “a lot,” then know you are likely not the only one answering that way. I rarely use those phrases for myself anymore because I find them unhelpful, but before you run away I want to explain why they are unhelpful. Not just from my perspective from my lived experience, but also what theories in Acceptance and Commitment Therapy (ACT) and related research suggests, particularly when it comes to chronic illness.

First I think I need to introduce you to a few terms. The first is event centrality. This can be described as the degree to which a person perceives an event (often traumatic but can also work for being diagnosed with an illness) as central to their identity. In other words, being a sick person is who you are because of your diagnosis. The second concept is the conceptualized self. This refers to who we think we are (in fancy ACT terms we call this self-as-content). The conceptualized self can take on all the identities we have such as being son or daughter, a parent, a spouse, a friend, and of course a sick person. It also includes our self-evaluations, so whether we describe ourselves as smart or dumb, happy or sad, fun or boring, and so on. What sometimes happens is that we get fused with one (or a few) of these aspects of our identity. In other words, we hold it tightly, are attached to it, and in the long-run doing so usually causes us more problems.

How do you conceptualize yourself?

Now this attachment to the conceptualized self can happen to anyone, and we often see it in depression and anxiety as well as chronic illness and chronic pain. There has been some research suggesting that our illness self-concept is a predictor of our adjustment to chronic illness. When we are attached to the identity of being ill we tend to have a lower overall quality of life. I talked about the use of language once on the podcast, and you should listen to that episode if you haven’t already. I want you to think about these pairs of phrases:

  • “I am anxious” vs. “I am experiencing the feelings of anxiety.”
  • “I am depressed” vs. “I am experiencing the feelings of sadness”
  • “I am sick” vs. “I am experiencing the symptoms of lupus” (or whatever illness you have)
  • “I am in pain” vs. “I am experiencing uncomfortable sensations”

You’ll likely notice that you attachment to that identity changes. And when we aren’t overly attached we actually can take better care of ourselves (health behaviours, self-caring, etc.) and our quality of life improves because we find we are able to do more values-based activities that we enjoy (yep, even with illness and pain). When we remove the attachment to our conceptualized self we are more willing to allow our experiences and see them as passing.

We want to have room to engage in values-based activities, because that’s what makes life meaningful.

There’s a few ways we can learn to do this. First, we can just start to notice and name are thoughts and feelings – “I notice I’m having the feeling of an uncomfortable shooting sensation in my hip” or “I notice I’m having the thought that I’m always in pain.” There are tons of ways to create some space between us and our thoughts and feelings when we are attached to them. This is just one way. The other process we can use to change this attachment to the conceptualized self is to develop self-as-context. This is what is also referred to as the noticing self. The part of us that just watches and notices all our experiences: what see, hear, smell, taste, touch, think, feel, do, etc. It’s a part of us that never changes. It’s like the sky and all of the thoughts and feelings and sensations are like the weather. The sky sees the weather but the weather cannot hurt the sky. And if you go above the clouds, the sky is still there, even when it can’t be seen. I’m going to encourage you to follow along with the video below to get an idea of what it is like to experience the noticing self.

I personally find this really helpful (and so do many of my clients) in creating a new relationship with my thoughts, feelings, and sensations, and forging out new identity, where I’m not limited by any of these things because I can notice them. They are not me. I am not chronically ill, I have the experience of having a chronic illness.

Keep making the most of it!