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 illness – also 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!

Your Repression of Emotions Can Affect Your Health

I know this is a bold statement, but honestly it’s not one that I’ve come up with. It’s one that’s been studied, and it came to my knowledge through the form of a book – When the Body Says No by Gabor Mate. Now, I have done a whole post giving my review of that book awhile back, so that might be something you want to check out before or after reading this today.

Image from: https://www.thriftbooks.com/w/when-the-body-says-no-the-cost-of-hidden-stress_gabor-mat/249909/item/4440329/?gclid=CjwKCAiAm7OMBhAQEiwArvGi3Be6FKxo_K4KAZncIWrAyof02dWHX7KniIKrUqB8qGh28YJtsz9ebxoCRaAQAvD_BwE#idiq=4440329&edition=3547012

First things first, I want to reflect on my own life. As an adult I wouldn’t say I repressed my emotions. Well, sometimes, when I was in my 20s, I would repress anger until it boiled over and spilled out like. Then I was accused of having ‘anger problems’ but really, looking back I was just not expressing it as it came about. On the other hand, sadness, joy, etc. all seemed to come out appropriately. Diving further back, I know there was a time between the ages of 8-13 that I repressed emotions – again, usually anger. Through those 5 years I had a group of friends at school, and one girl in particular was good at manipulating the others into not talking to me for periods of time. Like I mean I had no one to hang out with at school when they did this. It started as just being a day, then a few days, then a week, sometimes a month. It was honestly unpredictable of when it would happen and how long it would happen for. I never knew what ‘I was doing wrong’ and was always only told by them, “If you don’t know, then I’m not going to tell you.” I think this was actually a traumatic experience for me. Actually, my therapist told me it was. However, this post isn’t about that trauma, it’s about repressing me emotions. I think the only way I could get through 5 years of elementary and middle years schooling was to repress. Not show any emotion about it at school. I remember crying myself to sleep at night, but certainly not every night. Luckily, I was enrolled in a ton of extracurricular activities which probably helped me too.

I think I was 6 in this photo.

What does repression of emotions have to do with chronic illness? Well, in When the Body Says No, Gabor Mate explains that repression of emotions – particularly anger – has been linked to several illnesses. These include autoimmune diseases, cancer, and ALS. Now, this doesn’t necessarily mean EVERYONE fits the bill, but certainly, in my conversations with others, people readily admit they have difficulty expressing anger in an appropriate and healthy way. Very interesting.

I was first diagnosed with autoimmune in 2016.

Why does repression of anger cause chronic illness? Well, in and of itself, it does not. However, when we look at illnesses from a biopsychosocial standpoint (this is the mostly widely accepted view in the medical community – both Western and holistic), it is a contributing factor stemming from the “psycho” portion. Bio stands for biological – so any genetic or epigenetic (meaning our genes were changed by our environment) – contributions to illness. Psycho stands for psychological contributors, which can also include personality, management of emotions, how we handle stress, and so on. Social usually relates to the environment, which often includes factors like traumatic events.

Biopsychosocial model of illness (physical & mental).
Image from: https://www.physio-pedia.com/Biopsychosocial_Model

What can we do with this knowledge? For me, the best thing I’ve learned to do is appropriate and consistent expression of emotions. This means I don’t ‘boil over’ with rage but rather can notice and accept the feelings of anger, expressing them through words. This is sometimes referred to as emotional regulation, and in my practice it definitely falls under acceptance. There are many ways to learn to do this. The most effective would be going to see a therapist. There’s also the self-help section of the bookstore or library. The practice of mindfulness. Just to name a few. Will doing this help heal our illnesses? Well, not exactly, but it can help lessen the severity and impact of our symptoms on our lives. I think it is a part of the healing process we often neglect, but really shouldn’t. This week’s episode of the podcast talks about acceptance (find it here). If you have questions about it, feel free to DM me on Instagram (@chronically.living_)

Learning to express our full range of emotions – anger, sadness, joy, nervousness, etc. – is important to our overall well-being (just watch the movie Inside Out if you’re not convinced).

Keep making the most of it everyone!

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Book Review: When the Body Says No

If you haven’t heard of this book and you have a chronic illness you need to get in the know. And to be fair, and I hadn’t heard of the book until about a year ago, and I didn’t actually read it until recently. The author I had heard of. Dr. Gabor Mate. He has written several books over the years on topics ranging from chronic illness to substance abuse to ADHD, and he’s quite well-known in both the self-help and medical communities. So, now that I’m done reading this (must-read) book, let me share some thoughts and opinions, and hopefully help encourage you to also give it a read.

It’s available at all major book sellers
(I got mine from Amazon)

First, for those of you unfamiliar with Gabor Mate, he is a Canadian (now retired) doctor who spent his career in family practice, palliative care, and working with people who use substances in Vancouver’s East End. And he’s touted as being an expert in these areas. The book, When the Body Says no is about how “stress” influences chronic illness. Now, stress encompasses a lot of things here, which is why I put it in quotations. It includes life stress, attachment, coping styles, trauma, adverse early childhood experiences, adult relationships, and so on. Basically a lot of stuff, though Dr. Mate posits that it’s our early life stresses that have the greatest impact on us. The book takes a biopsychosocial approach. This means it includes biological, psychological and sociocultural influences on health and illness. This is the approach that science is backing when it comes to both physical health and mental health (literally my first class in grad school was “A Biopsychosocial Approach to Mental Health”). What’s interesting, if you go online to research most illnesses (come on, we’ve all googled our actual illnesses, as well as other potential ones) usually only biological causes are listed. And I will agree with Dr. Mate, that biological causes don’t tell the whole story (and neither to strictly psychological or sociocultural). For example, he writes (based on scientific research) that some people with biological markers for illnesses never actually develop one. Why? If it was strictly biological then everyone with the biological markers would clearly develop it. Again, there is more to the picture.

Image from: https://www.physio-pedia.com/Biopsychosocial_Model

Like I said, I agree with a lot of the content in the book. I mean, many autoimmune diseases are diagnosed after a person has gone through a stressful experiences. It makes sense that the body would take on what our minds don’t want to – such as a repression of emotions. And clearly trauma can manifest in many, many ways (illness, substance use, psychiatric disorders, etc.). Many people will read the book and find themselves very well represented for whatever illness they have (and he covers a lot of illnesses from cancer to a variety of autoimmune diseases to Alzheimers and so on). My only problem with it is that he asserts that attachment issues (to parents) are the #1 determinant of illness, and that virtually all people with illnesses have more than one of these issues. And this is where I didn’t find myself represented. My attachment style with my parents has always been healthy. My early childhood experiences were really good. In fact, the first trauma I suffered was ongoing between the ages of 8-13 (being bullied at school). At the time, yes, I did probably repress a lot of my emotions, but as I got older, and certainly by the time I was diagnosed with my illnesses, and I was not repressing emotion (at least as often) anymore. Now, that being said, maybe all it took was that experience to account for the psychosocial part of my illness. I can’t say either way, but regardless I don’t feel I perfectly represent the picture Dr. Mate paints in his book, though I can appreciate that a lot of people do.

My brother and I, circa 1988-89.

All of that said, I do highly recommend reading this book if you have a chronic illness OR if you have a loved one with a chronic illness. It gives insight into the causes, which some people find helpful. And if you’d rather live in the here-and-now, rather than try to decipher what caused your illness, the last chapter is called the “Seven A’s of Healing” and it really resonated with me, because for the most part, it is exactly what I work on with clients, and it is strongly evidence-based. So, go read When the Body Says No, it’s definitely worth it.

My podcast episode this week is on Creative Hopelessness, so if you’re finding it difficult to make changes in your life and/or you’ve been feeling hopeless, please check it out. Until next week, keep making the most of it!

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What is Well-Being?

“While it may not be possible for us to cure ourselves or to find someone who can, it is possible for us to heal ourselves – to learn to live with and work with the conditions that present themselves in the present moment. Healing implies the possibility that we can relate differently to illness, disability, even death, as we learn to see with the eyes of wholeness.” – Jon Kabat-Zinn

If you’ve been following my blog (or podcast) for awhile, you might have read (or heard) the term well-being come up quite a bit. Because, like the above quote says, we can’t cure ourselves, but that doesn’t mean everything in our lives is out of our control. The illness(es) we have aren’t directly in our control, but our experience of having them is. This is a lot to break down, certainly more than just one blog post (and to be honest I get into this way more in the new season of the podcast – check out the first episode of season 2 here for Apple and here for Spotify). What I would like to do is just be a little more specific about what well-being is and why’s it is important for Chronic Illness Warriors.

Image from: https://jcsplibraries.com/wellbeing-resources/

I would say the first year to year and a half after I was diagnosed initially (so back in from Feburary 2016-sometime midway through 2017) my well-being was low. I felt like my illness took so much out of me. Initially I had a lot of anxiety, maybe some depression, and then a bad breakup, and then even when I went out with friends as I moved on I found I would have to leave early or cancel plans. I called in sick often to work. I thought a lot about the pain I was in. But things slowly started to shift as I realized my well-being (or all of this stuff) was more in my control than I thought it was.

Despite the smile, my wellbeing was much lower in June 2016.

Wellbeing (or well-being, which way is right? Depends on who you ask!) can be defined as the state of being comfortable, healthy, or happy. Note that it doesn’t necessarily say all three at once. There is a ton of research on wellbeing and chronic illness, which is not surprising since the incidence of chronic illness is constantly growing. Wellbeing often includes physical, psychological and social aspects, and often it is a little bit of each together that gives us this. It is also related to coping. How well we can cope, how we cope, our self-efficacy (last week’s blog post). Truthfully, wellbeing is an important part of being able to exist and wanting to exist on this planet. Too often I read chronic illness warriors post how they have no wellbeing and that they feel like giving up. It’s heart breaking, because it doesn’t necessarily have to be that way.

Remember, change is slow (April 2017).

Why is well-being important for people with chronic illness. Well, for one, the research has shown that chronic illness warriors who have better wellbeing show lower disability, lower pain, less mental health problems, and overall a better quality of life. Sounds pretty good, right? And please remember that doesn’t mean they don’t have any disability, pain or mental health problems, it means that it is lower than for people who’s well-being is poor. I do want to point out that achieving greater wellbeing takes a lot of work. I’m not exaggerating here either, and I think this is often where people get stuck. Because it’s easier if someone or something else (like a doctor or medication) can just make us feel better, rather than having to make changes to our lifestyle or go on a personal growth journey. This is ultimately why I have the blog and the podcast – to help provide some options here (and again the podcast this season is really diving deep into finding ways to improve wellbeing so check it out). We are looking for ways (myself included because I certainly don’t have all the answers) to improve our wellbeing, to make our lives better.

If I hadn’t worked on my wellbeing I wouldn’t be able to go on the epic adventures that I do.

My journey has been several years in the making and is really never-ending. Change is slow. But I’ve taken many steps to improve my wellbeing and continue to do so. I’m at the point where I can say I have pretty good wellbeing, and I can personally corroborate the research and say that in general my pain is lower (still can depend on the day) and in general I have less disability (have not called in to sick at my practicum in 6 months) and in general I don’t have mental health problems (though I am willing to acknowledge them when they come up because emotions are normal!). It is a journey that I hope you are all ready for.

Wellbeing is a forever journey for a chronic illness warrior.

If you feel moved by my posts, podcast and/or meditation channel, please check out my Patreon page. I love bringing content and by supporting it you are making sure that I can cover the costs of running it all so that I can keep bringing it to you. Until next week, keep making the most of it!

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Can Acting “As If” Help Us With Chronic Illness?

No, we’re not talking about Cher from Clueless (did I date myself?). We’re talking about Alfred Adler, who was an early psychoanalyst, and whose work has contributed to the development of current psychotherapeutic techniques, including Cognitive Behavioural Therapy. CBT, it turns out, has been incredibly helpful for people living with chronic pain and illness. One of the many techniques Adler developed was acting “as if” which got me wondering, can this help with chronic illness and pain? I’m going to start off by saying, there is not a lot of research in this area, so we don’t really know, but I’m going to do a bit of theorizing today, with the research that I did manage to find on the subject.

Great movie, but not what we’re talking about today.
Image from: https://www.refinery29.com/en-us/2015/07/90743/best-clueless-quotes-movie

First, let’s maybe determine what acting “as if” means. This technique has the client make up a new story about themselves, their lives, their ability, or whatever else, for themselves and behave in the way that they would need to in order for this story to be true on a daily basis. (If you’re familiar with CBT you might recognize the cognitive and behavioural components here). Initially it was used for things like giving empathic responses, and being more assertive, or making decisions. The idea is, that by acting differently, and getting different responses from other people in your life because of it, your brain changes so that you can be more like this “new” person. I kind of thinking it as a mindset change.

Alfred Adler
Image from: http://famouspsychologists.net/alfred-adler/

Okay, I have a story before we move on. I was always a very shy person. To the point where I had some social anxiety as a child (literally would never answer questions in class, and was terrified of doing presentations, though I always had friends). That continued right into my twenties. In my twenties (and early thirties) I worked in retail, so naturally some of that social anxiety went away, but to be honest, a good portion stayed. That is, until I was in my early thirties. Then I decided I didn’t want to be so shy anymore. I set myself down a path where I would either be in situations where I couldn’t be as shy, or I would force myself to just talk more in situations I normally wouldn’t. I was essentially acting “as if” I was outgoing. Guess what? At 36, I can say that while I do get some butterflies in new situations, I definitely would not be considered “shy” or “awkward” or “socially anxious” anymore.

Little me.

But can this apply to chronic illness? And if it does, how exactly does that work? When we’re looking at chronic illness treatment, it’s always best to take a holistic, biopsychosocial approach. Typically, you’ll have a doctor (or team of doctors) that focuses on the biological aspects. Having a mental health care professional can assist with the psychosocial parts. There is a known association between self-efficacy, which is our beliefs about our ability to handle life’s challenges, and chronic illness and chronic pain disability. In other words, if we believe we can’t handle our illness or pain, then we won’t be able to and our illness and pain will actually be worse. This is where I think acting “as if” applies to us. We need to shift our mindset and starting acting “as if” we can handle the pain, we can handle the illness and the symptoms that go along with it. We replace self-pity with self-compassion. We are mindful of what we are doing and saying, and we start to take control of treatment (as holistically as possible). By doing so, our self-efficacy grows, and our pain lessens, and our illness has less control over our lives.

I would not be able to do most of what I can without self-efficacy.
2 years after diagnosis. Toronto -> Los Angeles. Solo Trip.

Okay, full stop. I know this might be a lot to take in, and you can’t even necessarily do this work on your own (though depending where you’re at with that self-efficacy thing, maybe you can). This is where having a support team, including a mental health professional might be helpful. At the very least, working on growing that mindfulness muscle and noticing what we’re doing is free to do (here’s the link to my meditation page which can help with that), until you can find (or afford) to have a professional help you. I truly believe in our abilities to live great lives, even with pain and illness. And, so, keep making the most of it.

New season of my podcast, Chronically Living and how to make the most of it, coming June 28, 2021.

Pain Scales – The Enemy of Chronic Pain Warriors

Literally my least favourite question when I go into any doctor or specialist appointment is, “what is your pain like today?” or “on a scale of 1 to 10, 10 being the worst ever, how’s your pain right now?” To someone with chronic pain, these are the most useless, arbitrary questions. Here’s the thing, I understand why doctors and other healthcare professionals ask the question. They want to get a gauge on if your pain is better or worse than it has been in the past. It totally makes sense. However, there are a few things about chronic pain (and pain in general) that aren’t taken into account with this questions.

1. My perception of what a “10” is may be higher or lower than your perception of what that is.
2. I’m not always entirely sure what number I should give. Like really, what is the difference between a “6” and a “7”?
3. Often pain changes throughout the day, so just because I give it a “4” right now, doesn’t mean that it won’t be an “8” in half an hour.

Hm… I’m smiling and happy in both pictures and yet my pain is a “0” on the left, and a “7-8” on the right.

And yet, this is always the first question asked at any appointment. Sometimes I literally just want to say “I don’t know.!” How many of you feel this way to? Plus, sometimes there is this need to want to give a higher number so that the pain is taken more seriously and not just dismissed. Here’s the thing that healthcare professionals often miss – there are better ways to describe pain than using a 1-10 scale. For example, “what type of pain are you experiencing/do you experience?” “What times of day are worst for pain?” “What activities or circumstances do you notice more pain or less pain?” “Are there any points in the day when you feel little to no pain?” And so on. These questions are easier to answer, and honestly, give a more realistic perspective of my pain than me guessing at a number to give my doctor.

Just gonna throw in the random deer visiting a retirement home across the street from me.

The main model used in medicine (and psychology) right now is the biopsychosocial model (except sometimes doctors forget to use it when talking about chronic pain it seems). For those of you not familiar with this, it is the interplay between biological and psychosocial causes (or maintenance) of a medical (or psychological condition). When applying this model to chronic pain, we look at the biological causes of an illness or injury, and how psychosocial factors maintain or increase the physical sensations of pain. It’s that mind-body connection. Here’s an example: the hypothalamic-pituitary-adrenocortical (HPA) system in your brain has been associated with several chronic pain syndromes including fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and MS. It is one of the biological causes of pain (though not necessarily the only). Psychological factors that can maintain or increase this pain include feelings of helplessness and hopelessness. Social factors and behaviours that maintain and increase pain include door diet and nutrition, lack of exercise, and substance use (including smoking). Stress is another major psychosocial factor associated with chronic pain. So, rather than asking what are pain is on a scale from 1-10, looking at these factors is likely more productive in both understanding and managing pain!

Image from: https://www.practicalpainmanagement.com/treatments/psychological/biopsychosocial-approach
The paragraph on the biopsychosocial model is cited from this article.

Let’s talk about pain management. Whether you do this on your own, or with the help of your healthcare team, here are some ways to improve your pain management (because let’s face it, chronic pain is unlikely to magically go away):

• medication compliance – taking all medication as prescribed!
• addressing psychological factors – such as anxiety – this could be through relaxation and meditative techniques or even exercise, or going to see a psychotherapist
• utilizing interdisciplinary healthcare teams – do you have a family doctor? A specialist for your illness or injury? A psychotherapist? A physical and/or occupational therapist? Anyone else who can help you with your pain? (I also have a naturopath and chiropractor for example).

Make a therapist part of your healthcare team! We’re here to help!
(just noting that I’m a therapist-in-training right now)

For anyone reading this who is not a chronic pain warrior, please remember that pain isn’t in our heads, and telling us to just deal with it isn’t helpful. In fact it can be stigmatizing, and people with chronic pain always face stigma because of a lack of understanding. We may laugh, smile and have fun, and yet be in pain at the same time. The things are not mutually exclusive. I’m going to link a few episodes of my podcast that complement this post below. For now, keep making the most of it everyone!

Mental Health and Chronic Illness

The “I Suck” Feeling

Locating Our Inner Strength

How Stress and Anxiety Manifest in the Body

Holistic Approaches to Chronic Pain