I love baking and cookies and rarely every do it. However, when I do I’ve found that it’s easier and easier for me to learn to modify recipes so that they more-or-less fit into the lifestyle changes I’ve made when it comes to food and nutrition (trying to be as anti-inflammatory as possible). While it does take some extra effort, I’ve found it’s worth it.
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!
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!
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):
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).
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).
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).
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.
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.
This video has 2 main themes: first, why shopping at farmer’s markets and eating organic food is beneficial to our health, especially as Chronic Illness Warriors; and second, how to deal with choice overload so that it isn’t stress (because that causes flares) whether it be shopping, or really anything else.
Are you feeling hopeless when it comes to making lifestyle changes to improve your chronic illness? Check out this week’s podcast episode on Creative Hopelessness, to help find ways to overcome that feeling.
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