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 – Your 100th Birthday

This short guided meditation can be a useful way to help clarify your values. Having chronic pain and illness sometimes interferes with us living by our values, or even remembering what they are. I find it useful to re-clarify what they are for me so that I can keep making the most of it, and I hope you can too!

Also, I just launched a side-business as a meditation teacher. If you’re interested in 1:1 classes online and self-paced programs online, check out my website – Aligning Mindfully. I also started a second YouTube channel for Aligning Mindfully with 5 minute meditations on it.

Video: Daily Mindfulness – Long Body Scans

One of the most effective practices I do in order to better cope with physical pain and other sensations of chronic illness is the body scan. The research also supports it being helpful. Interestingly it’s also been used as a meditative practice for hundreds of years (possibly longer) to help cope with physical sensations. While it can be a bit scary for chronic pain/illness warriors to go inside, the benefits can be well worth it. This practice is also great because you can totally do it lying down (as long as you’re not at risk of falling asleep). This versions is half an hour long, so if you’re not quite up to doing it that long yet, check out my meditation channel for the shorter version.

Keep making the most of it!

How to Improve Your Health through Sleep

So I write a lot of blog posts for my clinics that are really relevant to all of you as well. As a counsellor I specialize in working with people with chronic pain and chronic illness and concussion. As someone who has chronic pain and illness I know how difficult having these conditions can be. I also know how difficult it can be to get a good sleep… but also how important a good sleep is to improving our health. Quite a conundrum. Check out this post I wrote about sleep hygiene and its benefits for our overall health, as well as some sleep hygiene tips that are totally applicable to spoonies (I use them myself!):

Ways to Recognize Anxiety When You Have Chronic Pain

I wrote a blog post for my therapy blog on recognizing the physical symptoms of anxiety. The information is also relevant for recognizing the physical symptoms when you have chronic pain or illness because some of these issues are overlapping, which makes it hard for us to figure out if it’s our illness or anxiety, and then what to do about it. Also, remember the mind and body are deeply connected, which means anxiety = more pain/illness symptoms and more pain/illness symptoms = more anxiety. Vicious cycle. Check out the post:

https://www.kelseylharriscounselling.com/post/how-to-recognize-the-physical-symptoms-of-anxiety

If the smokey image is anxiety, this is me trying to hide from it.

Why Music Might Increase Your Resilience to Chronic Pain

I’m a musician. Not professionally of course, but it is definitely part of my identity. I began playing the piano at age 5. I took lessons until I graduated from high school. I took practical and theory exams with Conservatory Canada (formerly the Western Board of Music) to the point that I have Grade 8 practical and Grade 4 theory. In junior high and high school I played the alto sax in band and jazz band. In high school I sang in the choir, played they keyboard for one of our vocal jazz groups, sang in another vocal jazz group, and always had a role in the school musicals. To this day, I still play my piano daily and sing along with songs as they come on the radio. I can play about 3 chords on the guitar, and I swear I’m going to take lessons one day! As a mental health professional I have also learned a lot about music and resilience.

Check out this podcast episode with singer-songwriter Sarah Luby who has T1D and UCTD.

Resilience can be defined as the ability to adjust to change or difficulties in life. Resilience utilizes our emotional strengths and our awareness of and ability to use our coping mechanisms to overcome adversity (Merriam-Webster, 2021). Resilience is also key to dealing effectively with chronic illness and chronic pain. Why? Because things are constantly changing and adapting. We have strong emotions and thoughts about our situations and these can often lead to depression and anxiety as well. We need to and want to be able to cope with what is happening. Yet many of us struggle with resilience for several different reasons, from childhood experiences to the pain itself and a lot in between. The good thing is we can learn to develop more resilience.

There is a ton of research on the benefits of music, such as increasing self-awareness, being more socially connected to others, and it helps to regulate mood (Schafer et al, 2013). It also enhances self-regulation, initiative and helps to strengthen relationships with others, not just connect us with them. Resilience skills in general do the same with our self-regulation, awareness, mood, initiative and relationships. There is a lot of overlap, so it makes sense that music would be helpful for this. In terms of how music builds resilience specifically, there is the idea of ‘musicking’ or our musical life in terms of an I-Thou relationship (this is an interesting existential idea that allows us to engage in perspective-taking, which in itself increases resilience as I’ve seen first-hand with my clients). The relationships of sounds, bodies, and psyches as presented in musical compositions/song builds this perspective-taking ability (Malloch & Trevarthen, 2018). Beyond this, musician can communicate musicality in order to enliven both themselves and listeners. (Malloch & Trevarthen, 2018). Therefore, listening to music, not just playing it, can build reslience.

In a clinical setting, music can be used in two different way. Music Therapists use specific music interventions to help individuals with their specific goals, mood regulation, resilience, etc. in an individual or group therapy setting. There is specific training to be able to do this. The other is “music for wellness” which is having musical experiences – listening, playing, etc. – for the purpose of wellbeing and general functioning. As I’m not a music therapist, I encourage my clients to engage in the latter, which is also how I engage with music.

I have since had my actual upright grand piano shipped to me. So much better to play on!

Music for chronic pain has also been studied. For example, in a palliative care setting, music was found to actually decrease chronic pain in patients, which I found super interesting. This really ties into the resiliency. Typically when we are more resilient our pain either actually decreases or just doesn’t bother us as much. Honestly, I’m fine with either scenario. The last few days my knee has been hurting a lot. I’m not sure if it’s related to my UCTD or my hyper-mobile knee joints (my physio thinks they’re related to each other). I do notice that when I play the piano, or even just listen to music while I’m on a walk, my pain is less noticeable. Perhaps because of distraction or perhaps because the music is building my ability to be resilient, not just in those moments but throughout life. Take a listen to this podcast episode with musician and music teacher Melissa, who has multiple chronic illnesses.

Pick a song to listen to, play, or sing along with today and see if that helps you to keep making 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!

How to Use Your Body’s Natural Pain Killers More Effectively.

The other day I was walking into work and there was an older gentleman, probably in his late 70s, looking for the hearing clinic. Honestly, I don’t pay attention to the dozens of businesses in the building, so when he asked I said I wasn’t sure where it was. He ended up not following me into the building. When I went in, I quickly looked at the directory, and then ran back outside and down the street to get him. I went with him to the hearing clinic, before going down to my office. He was very grateful, and I felt good. I also had been in a lot of pain that day (my hip) and I noticed (awhile later) that the pain had drastically reduced. Why did this happen? Because my body released endorphins when I performed an act of kindness.

Endorphins are literally our bodies natural pain killers. We produced around 20 or so different types of endorphins, and they are all released by two parts of our brain – the hypothalamus and the pituitary gland – when we are stressed or in pain. Endorphins bind to our body’s opioid receptors which then gives us some pain relief. Opioid medications basically imitate endorphins when they enter our bodies, also clinging to the opioid receptors. And actually, when we take opioid medications, our body produces few endorphins because it doesn’t think it has to produce as many anymore (part of the reason it is easy to become addicted to opioid medications). Now, you might be saying, if these endorphins are so good, why am I in so much pain? Why would I need pain medications, including opioids, if these endorphins actually worked?

Here’s the thing, endorphins do work pretty well. There is a reason our bodies evolved to have them. Chronic pain is weird though and can affect many areas of our lives, which can increase pain (biopsychosocial approach) that make it more difficult for endorphins to work. Also, when we have chronic pain, we end up doing a lot of things that are the opposite of what would be helpful. We lie in bed all day, we withdraw from others, we become depressed making it hard to laugh for example, we stay inside, etc. Doing a lot of the opposite actually helps to produce more endorphins. Here are some examples of activities and practices that cause our bodies to produce more endorphins naturally:

  • exercise – particularly moderate exercise. I find I always feel good when I work out. There is an uphill walk called the Coquitlam Crunch when I live and I swear it is an endorphin boosting activity (probably why a lot of locals do it). However, if you struggle to exercise, any activity to start will likely get some endorphins going.
  • acupuncture – I get acupuncture at least once a month because it reduces my stress, so it makes sense that it produces endorphins (a lot of people find it helps to reduce pain as well)
  • meditation – I’m a big meditator, if you follow this blog you know that. This is another activity that I always feel good after.
  • Sex – I mean it’s physical activity and an enjoyable activity so it totally makes sense this would produce endorphins.
  • Music – singing, dancing or playing an instrument gets the endorphins going. So, if you’re in the kitchen, blast some tunes and take a few moments to dance! (I love kitchen dancing). Every time I play the piano I feel really good.
  • Laughter – as I mentioned, if you have a low mood this can be difficult, but perhaps turning on a funny movie or calling a friend who always makes you laugh might be helpful. As a therapist, I try to utilize laughter in client sessions as much as possible (and appropriate).
  • Sunshine – yep, getting outside, even if it’s just to sit on your deck or balcony, or sit in a park for awhile. In the winter, investing in a UV light. All of this can boost our natural pain killers.
  • Aromatherapy – particularly scents of lavender and vanilla. I often use lavender in my diffuser, which I always have on when I do telehealth counselling sessions at home. It’s a scent that is meant to help you feel more relaxed, and understanding how this work (endorphins!) is helpful for me at least.
  • Altruism – so my opening story is one about doing a kind act for a stranger. Likewise volunteering (I used to volunteer at a children’s hospital, and then at a crisis lines for kids and teens) also produces endorphins. Honestly, while I love volunteering, I find that even holding the door open for someone feels good. And this is why!
  • Chocolate -it actually contains a type of endorphin within it, which is why it helps to produce more. While I’m not saying you should eat a chocolate bar every day, the occasional chocolatey treat might be a good idea!

Okay, so I’m not saying that doing all of these things will mean you don’t have to take any pain medications anymore. What I am saying is that it can (a) reduce your need for some meds (I went off one from honestly exercising and meditating), or (b) can make you feel even better, while you still take medication. And look, none of this is a guarantee, everyone is different, and there are a lot of factors that affect our pain levels, but I’m always looking for what can help. That way we can all keep making the most of it!

Video: Values-Based Activities – Colouring

What are values-based activities? They are actions, activities, hobbies, practices, etc. that align with our values (how we want to treat ourselves, others, and the world/what is important to us). Colouring may seem like a silly one, but here me out! You can also check out this podcast episode I did on values-based living.

Try out a values-based activity for yourself so that you can keep making the most of it!