Video: Passengers on a Bus (Dealing with Chronic Illness Thoughts)

Our difficult thoughts and feelings are like disgruntled passengers on a bus that we are driving. What do we do with those passengers? Is it working? What can we do instead?

Working with our thoughts is one way to keep making the most of it!

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.

My Top 5 Relaxation Tips for Stress (and chronic pain)

So many of us struggle to relax. To actually induce feelings of relaxation in our bodies and minds (which typically go together). And yet relaxation has been found to be very helpful for chronic pain. When the nervous system is dysregulated, the immune system goes into overdrive, causing inflammation, which causes pain, which then further dysregulates the nervous system. While there are many ways to break this cycle, relaxation is one.

Social connection can help with relaxation.

Relaxation is different from mindfulness. While many people do feel relaxed after meditation or some other mindfulness practice, the goal with mindfulness is not feel present and aware (relaxation is a common byproduct). The goal of relaxation practices is literally to relax. And so, mindfulness can be done pretty much anywhere, whereas relaxation needs to be done somewhere safe and comfortable. All that said, from my experience with chronic pain, here are my top 5 relaxation tips:

  1. Deep breathing – sending the breath into the belly activates the parasympathetic nervous system (rest and digest) moving us out of the sympathetic (fight or flight response). Closely related is sending the breath to areas of the body that need help relaxing. This is quick, easy and technically overlaps with mindfulness so it can be done in more places than some of the other suggestions. Check it out.
  2. Progressive Muscle Relaxation – PMR is done when we tense and then relax different muscle groups in our body. I have been practicing PMR for years (former therapist taught it to me) and have always found it helps to relax me and often decreases pain. Check it out.
  3. Yoga Nidra – newest one on my list as I’ve only more recently started practicing it. It sends you into a deep meditative state that is extremely relaxing. There is some evidence that the use of a sankalpa (resolve) can also help to promote healing. Check it out.
  4. Exercise – believe it or not but exercise often helps with our emotions and can help us feel more relaxed. It can be more intense to less intense depending on what you need in that moment. I’ve found when I’m anxious, for example, going for a walk can ease a lot of it.
  5. Social connection – in person is better, though any type of connection with a friend, partner, family member, etc. – especially one that is regulated – can help us move back into regulation because our nervous systems like to co-regulate with each other. Sometimes when I hang out with certain people, even if I was tense or stressed or anxious before, I feel calm and chill during and after the hangout.

There are many more ways to get ourselves into more of a relaxed state. These are just some of my personal faves. I hope that helps you to keep making the most of it!

Video: Daily Activities – Journaling

Journaling has a number of benefits for health and mental health. Though I only started it recently (due to yoga teacher training), I’ve found I enjoy it more than I thought and it has been beneficial.

Here are some articles on the benefits of journaling:

https://journals.lww.com/psychosomaticmedicine/Abstract/2016/07000/Pilot_Randomized_Study_of_a_Gratitude_Journaling.5.aspx https://meridian.allenpress.com/jmhc/article-abstract/36/1/31/83462/Interactive-Journaling-as-a-Clinical-Tool https://www.tandfonline.com/doi/abs/10.1080/15401383.2011.557312

Take care and keep making the most of it!

Myths & Misconceptions about UCTD

One of my diagnoses is undifferentiated connective tissue disease (UCTD) and while according to my new rheumatologist my disease seems to be more-or-less in remissions (still some mild symptoms) I wanted to talk about some misconceptions about UCTD that many people – patients, doctors, family members, allied healthcare professionals, etc. have about it.

2016 year of diagnosis – 2022 remission
  1. It’s a diagnosis given when they don’t know what’s wrong with you.
    Not exactly, technically UCTD is its own diagnosis. It is given when someone has some symptoms of a specified connective tissue disease (like lupus/SLE or rheumatoid arthritis/RA) but doesn’t not have enough symptoms to warrant those diagnoses. Some of the confusion here might be the word “undifferentiated” which is vague at best, but isn’t meant to be that vague. There is also no diagnostic criteria for UCTD, meaning that differential diagnosis is used (the doctor doesn’t have a better explanation and uses a judgment call)
  2. It’s the same as MCTD.
    Mixed Connective Tissue Disease is different in that in MCTD there are symptoms of several different connective tissue diseases present. This doesn’t occur in UCTD, where there are some symptoms of a specific connective tissue disease present.
  3. The symptoms aren’t that bad.
    It depends on the course of the disease of course. The most common symptoms are joint pain and a positive ANA. Other common symptoms include arthritis, Raynaud’s phenomenon, rashes, alopecia, oral ulcers, etc. Again, not enough would be present to give an SLE or RA diagnosis for example. Most of these symptoms are not that fun. The good thing is that there is usually no organ involvement – the kidney, liver, lungs and brain are usually fine.
  4. It will turn into a connective tissue disease like SLE or RA.
    Actually, probably not. Only about a third of people with UCTD end up with a specified connective tissue disease.
  5. It will drastically affect quality of life.
    Controversial, but part of this is up to you. Here’s what I mean. So as in #4, only about one third of people end up with SLE/RA/etc. What about the other two thirds? Well, about one third remain with relatively mild UCTD. The last third end up in remission. The medications used are much milder than immunosuppressants (which is good!) and lifestyle changes can really affect the course of the illness moving forward. UCTD does not mean we should give up!

I hope this helps clear a few things up! I would love to hear what my fellow UCTD warriors think and if anyone has run into any other misconceptions about it!

Keep making the most of it!

Video: Wading through the Swamp of Chronic Illness

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.

Keep making the most of it!

To Stay on or Go off Birth Control… Questions, Answers, Experiences

I’ve had this conversation with friends recently. Stay on or go off birth control. We all often have concerns either way and there are a lot of factors to consider. I’m going to preface the rest of the post by saying I decided to go off birth control at the beginning of July. However, I’m not advocating that someone should. The pill is really good for a lot of reasons (mainly, you know, helps if you don’t want to get pregnant).

Individual Differences: So there are a lot of different reasons people might choose to go on the pill and to stay on the pill or go off of it. For example, I decided to go on the pill because it is supposed to help with menstrual pain and cramping. When I was younger I got really bad cramps and often had to go home sick from school or call in sick to work. The pill actually really, really helped with this. I stopped missing work due to cramps and my periods were much less bothersome. Because I was married to a woman at the time I had no concerns around pregnancy – though after I divorced and was back to dating women and men, I did appreciate that I had less worry about getting pregnant when sleeping with men. Some people will also go on the pill to help with depressive symptoms as it can improve mood in some people. It can also reduce risk of certain cancers (ovarian, endometrial) And of course, most go on to prevent pregnancy. All are valid reasons. And so, it’s the same as far as individual differences go when going off of the pill. I went off because my periods were incredibly light, I’m getting older so if I decide to have kids at some point, I want to make it easier on my body, and though I’m single and still date men and women, I’m comfortable with any male partners using other types of contraception. Many people go off of it to become pregnant, some people have side effects they don’t want, etc. Again, all valid reasons.

Concerns & Questions: There are a lot of common questions or concerns about making this change.

  • Irregular cycles – I talked to my naturopath about this, as she mentioned it can take a few months for a cycle to come back (not the case for me but common).
  • Heavy flows, lots of cramps – Another part of the conversation with my naturopath. I did notice my flow increased to normal and I certainly had cramps, though not as bad as I used to get them (ask me again a few periods from now and we’ll see)
  • PMS comes back – I didn’t know this until, again, I had a conversation with my ND. PMS often disappears or becomes milder while on the pill. So going off means you might experience again (so far, I have not but I also didn’t really have much of it before).
  • Weight loss – Some people will lose weight after they stop taking the pill, so beware of this if it’s a concern for you (I haven’t, again, may be too early to tell).
  • Acne – I think most of us have heard this one, though my ND also mentioned it. It was probably one of my bigger concerns since I had terrible acne as a child (yes, as a child, literally ages 8-16). I’ve had a bit more than normal, but mild at best.
  • Increased hair – I didn’t know this but apparently it can cause unwanted hair growth (https://www.medicalnewstoday.com/articles/stopping-birth-control#seeing-a-doctor)
  • increased libido – I asked my ND about this because I was literally laughing at myself for days about this. I feel like I’m a 18-21 year old version of myself. Which honestly, there is nothing wrong with, but also something to be aware of if you go off of it.
  • Changes in mood – this is one that seems to be everyone’s biggest concern, which is understandable. As I mentioned early, sometimes the pill can help with depression, and so, going off can mean you experience lower mood. There are many coping strategies available for low mood (self-help books/podcasts/tiktoks, therapy/counselling, etc. can help). I haven’t experienced mood changes.

According to some articles I found online there are some added benefits of going off the pill. Apparently it can cause headaches in some people, so going off will bring relief to that. And also, that cancer protection we talked about earlier, apparently that can continue (if you were on the pill long enough).

I think what’s really, really important when making these types of decisions is that you talk to your doctor and other healthcare professionals. If you’re a Spoonie, include your specialist in the conversation if necessary. If you have a naturopathic doctor, they can be helpful to provide tips for natural relief for cramps, acne, etc. And if you’re experiencing mood changes, especially if you’re already prone to low mood, seeking help for a licensed mental health professional can be beneficial.

Take care and keep making the most of 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!

My Experiences of Lifestyle Changes for Chronic Pain

I feel a little bit of unease writing this post because I don’t want to give the impression that I think it’s completely possible for everyone to do this. In fact, prior to my own personal experience, I thought this was highly unlikely if not nearly impossible even though I’ve read about others doing similar things (reducing ANA, reversing illness, stopping illness progression, etc.) through a lot of the same methods I’ve used. I only started with lifestyle changes in order to reduce symptoms and general distress so that I could do more values-based activities. All of what I did was with the guidance, help and advice of amazing holistic healthcare professionals – my naturopath, my psychotherapist, my physiotherapist(s), my chiropractor(s), and my massage therapist(s). My primary care/general practitioner/family doctor (however you want to say it) and my rheumatologist(s) supported my lifestyle changes but never advised me on them. They deal with medications, and frankly that’s fine. I also want to say, my intention has never been to go off any medications. I like an East-meets-West approach to healthcare. All that said, here’s what I did (in order of appearance):

  1. Stress Reduction – I learned a lot of coping skills to reduce my stress from my psychotherapist and have had regular acupuncture sessions with a naturopath for several years (minus 1 year where I didn’t have benefits).
  2. Tied in with the above, regular meditation and eventually yoga practice. I continued to reduce and manage stress through these means. Mindfulness in general can really help with anxiety, depression, and has been shown to reduce pain in many, many people, across many, many studies. I currently meditate 20 minutes (minimum) per day and do yoga 4-5x/week (between 20 minutes to 1 hour each day).
  3. Exercise – my exercise routine began with some work with a personal trainer who worked with autoimmune disease in the past, and then going to the gym 3x/week. When the pandemic hit, I began working out at home with some basic body-weight strength training exercises. I currently alternate strength-training with exercises given to me by my physiotherapist and chiropractor. On top of that I walk around 10,000 steps per day. I find that it works best if I pace by splitting it up with breaks and doing the same amount of activity each day. My physiotherapist and I are working on building up my strength so I can do more and longer hiking (currently I can do up to 1.5 hours, once or twice/week).
  4. Stretching – I’m giving this it’s own category because it’s not ‘exercise’ and yoga, while can be a great stretch, is much more than that. I do several stretches daily that have been given to me by personal trainers, naturopaths, physiotherapists, chiropractors, and massage therapists. I stretch every part of my from my jaw to lats to wrists to legs to back to toes. I probably spend about 15 minutes just on stretches each day.
  5. Diet/nutrition – this is something I struggled with for a very long time. I was recommended paleo diets and AIP protocols and this and that and I struggled to stick to any of them. So I made my own protocol/diet by just paying attention to how I was feeling after eating different foods. Then I eliminated what doesn’t make me feel good. I describe my current diet as “gluten-free pesca-vegan” because I mainly eat fish/seafood and then a vegan diet (no dairy) and gluten-free. (I probably should cut down sugar more and reduce alcohol a bit more but I’m getting there). I’ve been on this “diet” since last November. What’s made it easier for me to stick with is actually that I’m cognitively flexible with it. What I mean is, if I’m out and there are no (or very limited) options for this way of eating, I just eat whatever. If I’m at someone’s house and they serve meat or gluten or whatever, I eat it. This happens at most once/week and often less than that.

This is just my experience. I’ve been able to go off of one medication entirely, one medication was reduce to “as needed” (granted I supplement CBD instead daily – 10mg), and my rheumatologist reduced one medication a few weeks ago from 2000mg/week to 1400mg/week. Despite my lower ANA I do still have some symptoms – a bit of inflammation, some pain, but overall it’s a lot better than it used to be.

Have any of you found a difference with lifestyle changes?

Keep making the most of it everyone!

Always seek help from qualified healthcare professionals before making any lifestyle changes.