Often when we refer to new eating habits we refer to it as our “diet” or that we’ve made “dietary changes.” The problem with this language (and I’ll admit that it’s language I’ve often used myself) is that it equates these changes as “going on a diet” such as for weight loss. While some people with chronic pain or illness may want to lose weight, for many others that is not the goal. So I think calling these changes a diet is a big problematic. It’s also problematic for anyone who is struggling with body image or has (or has had) an eating disorder. Basically the word diet is the worst. Instead it can be way better to think of these as lifestyle changes. Maybe specifically nutritional lifestyle changes (since lifestyle changes can also include exercise, meditation, etc.).
I did not need to “diet” nor is it something I wanted to do. I struggled with body image when I was younger and honestly have not owned a scale in over 10 years. I don’t need it or want it. And yet, I wanted to make some nutritional lifestyle changes because I had heard from many people – healthcare professionals and just other Spoonies – that it can help with pain, inflammation, gut issues, etc. I struggled in the past to go on a “paleo diet” or really anything with the word diet in it. When I was hosting my podcast I talked to a few people who looked at lifestyle changes in regards to what we eat instead of diets (link to the podcast – there’s a number of episodes on this subject). I began to think, what if I tried some of these lifestyle changes, implementing them at a pace that feels comfortable and non-restrictive? That’s how I figured out what makes me feel good when I eat it, versus what makes me feel bad.
Lifestyle changes with food/nutrition can totally vary from person to person. I was listening to a podcast that I like this morning and they were also talking about chronic pain and diet, and how one person will advocate for this diet and another will advocate for that diet, and the whole wellness industry is silly. I would say that it really comes down to individual differences. No one person is the same (body or mind) and there are a lot of factors that influence health. Keeping that in mind, lifestyle changes that you make are best done if they are ones that work for you. There’s no guarantee that all of your symptoms will go away, or that you’ll go into remission. That was never my goal personally. I just wanted to see what might help. Taking that attitude and approach (and being flexible with “cheat days” when I need them) makes it much, much easier. At the end of the day, these lifestyle changes are just one way we can keep making the most of it!
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.
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.
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:
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.
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.
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.
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.
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!
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:
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.
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)
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.
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.
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.
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!
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.