Hello Readers, Warriors, Spoonies! I appreciate your support on this blog which I’ve been running (and writing) for several years. I’m going to take a small pause on new content (other than a few Sunday videos which were prescheduled) as I worked on a few other projects (new podcast) and focus on work, which is starting to pick up again. I also find these breaks really important for my mental health.
If you have ideas for content you’d like to read about on here (or see videos for) comment on this post as I’d love to hear from you. The podcast I’m starting with my friend and colleague is on personal growth, and I’ll definitely give more details in the near future. You can always follow Chronically Living on YouTube and follow me on TikTok @kelseyleighharris for coping skills. I hope to be back soon.
If you haven’t heard of Spoon theory, it’s definitely a great metaphor for chronic pain and illness. It can help you understand yourself better, and prepare to do helpful things like pacing. It can also serve as a great way to educate your friends and family on what it’s like to have a chronic illness or pain so that they can understand and support you better.
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.
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).
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.
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).
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!
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.
This metaphor works for any thoughts, feelings and sensations, but I personally find it effective when think about chronic pain and illness. Of course, we don’t want to injure ourselves or forget about pacing. That doesn’t mean we can’t engage in any values-based activities. I hope this helps bring some perspective and hope.
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.
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:
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!
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!