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If you’re curious why I’ve been MIA, the short answer is I had some major autoimmune flare-ups that left me unable to work and barely able to function. The last 45 days have been somewhat of a roller-coaster ride, one I wouldn’t have willingly jumped on.
The good news is I’m now managing my autoimmune flare-ups and feeling healthy again. Boy does it feel good to be alive, to breathe, to walk, to use my hands, to form complete sentences. Sometimes, it’s the simple things that matter most.
If you’re thinking about transitioning into #RVlife, let this be a reality check that life follows you on the road, and you still have to learn how to manage the ups and downs that come with being a human.
With that said, if you’re practicing healthy habits now, it will be easier to implement them on the road.
Taking care of yourself is important for everyone, not just those with an autoimmune disease, and I hope the information below can be a reminder to make yourself and your health a priority, especially during these challenging times. And if you are struggling with an autoimmune disease, I hope my experience can be a jumping-off point for you to research other areas you may not have considered.
I’m not a doctor or a nutritionist, so the information I’m sharing below is based on my personal experience and beliefs. If you’re suffering from an autoimmune disease (or more than one), be sure to speak with your doctor to see if there are lifestyle changes you can implement, or if the Auto-Immune Protocol may be right for you.
Managing Auto-Immune Flareups through lifestyle changes
I may go into detail on these topics in the future, but here are the basic steps I’ve taken to manage the pain caused by CRPS and increase my gut health:
- Meditate daily
- Exercise daily, even if just a walk or stretching
- Practice Mindfulness
- Change diet by temporarily implementing the Auto-Immune Protocol
- Drink lots of water
- Take supplements to help relieve joint pain and restore gut health
- Spend time outside – even if just sitting outside or going for a short walk (gotta get that Vitamin D!)
- Get good, quality sleep (sleep meditations and Yoga Nidra helped me with this)
- Incorporated the daily mantra, “Stong, Healthy, Healed”
- Manage Stress/Anxiety more effectively (Becoming consistent with the items above helped improve this tremendously!)
In case you didn’t know, I was diagnosed with CRPS back in 2012, a rare disease that affects the peripheral and central nervous systems, which left me unable to use my right hand for some time. Thankfully, back when I was diagnosed, I was able to go into remission within a matter of weeks, where it stayed for several years (and led to the creation of this website).
In 2017, the flare-ups started up again, but I’ve always been able to manage them quickly and without medication.
Last year was the worst, with flare-ups happening more frequently. They would subside within days, but the fingers and knuckles on my right hand would remain swollen a bit longer. The pain was manageable, so I didn’t think too much of it, but I also knew I wasn’t taking care of myself. As a result of CRPS, my right hand is often cold-to the touch compared to my left, but we were dealing with colder temperatures, which didn’t help.
I was overwhelmed, cooking less, which meant eating more processed, convenient food, and not getting enough exercise. Ya know, life happened, and I wasn’t making the best choices.
Every bite you take is either fighting disease or feeding it
I’m one of those vegetarians with an on-again-off-again affair with cheese.
I don’t eat eggs, fish, or drink milk, but cheese is my weakness. Over the last few years, I’ve attempted to give it up, but last year I became more flexible when we were in locations without my favorite Miyoko’s vegan cheese nearby. So when the cravings came, and I was too lazy to make my own, I’d grab some organic, rennet-free cheese instead.
I mention this because cheese started to creep back into my meals last year, especially during the holidays, and up until the end of January. I was using it for baked macaroni and cheese, lasagna, and adding it to our broccoli and potato soup. And when I was trying to save time by not making dinner, grilled cheese, vegan hot dogs, and plant-based hamburgers were also becoming the norm. Not to mention all the bread associated with said sandwiches, hot dogs, and burgers. And let’s not forget those batches of blueberry muffins….
Okay, I need to stop because I’m making myself hungry.
While these meals typically weren’t the norm for us, they had become in those 2-3 months leading up to my flare-ups.
Looking back, and knowing what I know now, it’s not surprising my flare-ups started back up with a vengeance. I was practically eating a diet filled with gluten, dairy, additives, emulsifiers, soy, and sugar. And it was happening daily.
I never used to consider myself someone who eats tons of processed food, but my viewpoint changed upon further review of my fridge and pantry staples. It may sound silly, but I never even really thought of tofu as being processed. We always buy organic when possible, but the more aware I was while I cooked, the more I became aware of the gluten, emulsifiers, and additives in my sauces or cooking staples. They were in the sauces I used for stir fry recipes, the vegan stock I’d use in soups, our organic salad dressings, vegan butter, and oat milk. Not to mention all those meatless “meat” products we’d use for easy meals. And despite Beyond Beef products being delicious, soy-free, and better than other alternatives… they’re still processed. (Although I’d be lying if I didn’t say I can’t wait to try and reintroduce them into my diet someday, even if sparingly.)
If you have an autoimmune disease, you may already be aware of how these foods, amongst others, can create flare-ups, especially if your gut health isn’t up to par.
CRPS isn’t technically labeled as an autoimmune disease, so I never thought to focus on my gut health. It wasn’t until recently that I began researching it further and discovered autoimmune disease could be a component of CRPS. To be honest, I’ve mostly stayed away from researching CRPS in the past, including other people’s experiences, because reading about the pain would trigger flare-ups. (This is why it’s so important to strengthen the nervous system, something I’m currently working on.)
A lot has changed in the last few years, and more information is becoming available to back up just how important the connection food has with health. And not only with autoimmune diseases.
In 2018 I had my first bad flare-up in years and began to experience other symptoms. This led me to learn more about Ayurveda and how certain foods and beverages can stimulate our nerves, and others can calm them.
This is also when I first heard about the Auto Immune Protocol, a process that eliminates inflammation-causing primal foods to restore the gut to optimal health. I thought it was intriguing but honestly didn’t think too much of it at the time, or understand just how much it could benefit me.
I attempted to eat based on my Ayurvedic “dosha” and gave up coffee, hoping that would help ease my pain. It did help my hand, but my withdrawals (aka migraines and moodiness) were so intense I felt like a drug addict that would do anything for a freaking cup of coffee. If that’s not a sign I should drink less, I don’t know what is, ha!
I still remember how I felt after eating that way for a week because it was the first time I started to feel healthy and calm in a looooong time.
Unfortunately, my cravings were stronger than the pain, and I eventually fell back into old patterns. It’s crazy to see I had so many answers in front of me at that time but was too stubborn to see them or continue down that path. I knew food was making an impact on my health but didn’t realize how much. At least it did lead us to purchase our juicer, which I know has helped a ton.
I think most of us become comfortable with our baseline of health, even when that means being uncomfortable to a certain degree. It’s easy to blame how we feel on external sources without digging much deeper. And unless it shifts dramatically in the wrong way, it’s hard to get or stay motivated to make changes. The good news is we don’t have to wait for pain and suffering to make better choices. But the choice is ours to make.
My body was trying to communicate with me, but I wasn’t listening. So it eventually had to start shouting.
Let the Flare-Ups Begin
To be honest, 2020 was off to a great start! Then February 1st rolled around…
It was a Saturday afternoon, and I grabbed the vacuum to battle the pet fur on the sofa. This is a task Eric usually takes on because the weight of the vacuum (while being handheld) and the repetitive movement of vacuuming all the cushions can cause my joint pain to flare up. At that moment, however, I thought, “I’m good because my hand is healed!”. I hadn’t had a flare-up in over a month and felt good about the path I was on, especially since I was consistently meditating and making time for family and fun projects.
After vacuuming the sofa, I proceeded to vacuum the rest of the RV, and pretty soon the joints in my hand were aching. The RV may be small, but those piles of fur sure aren’t! We love our pets, but not their fur tumbleweeds, which is why we try to vacuum every day.
The next day I was editing photos when my CRPS flare-ups started to get worse. I wanted to finish what I was working on, so I kept pushing through, telling myself I’d rest afterward.
By the end of the day, it was hard to put my hand into a fist, and my entire arm, wrist, and hand were in pain. I was so annoyed and somewhat embarrassed that I thought I was healed the day before, and instead, I was in worse pain than I’d felt in months.
That first week of February, I kept trying to work only to end up frustrated or in tears because the pain had gotten worse. I’m not good at sitting still and wanted to dive back into work.
At first, I tried to fight the pain or release it through meditation, deep breathing, and positive thoughts as I had in the past, but it wasn’t working, at least not entirely.
I wasn’t able to type on my computer or use my phone unless I only typed with my left finger, which just cramped up my left hand. Even so, I’m stubborn, so I kept trying. Kept trying to control the situation, but that only made it worse.
This made me feel like a failure. It worked before, so why wasn’t it working now? Was I not trying hard enough? The guilt, shame, and anger were slowly creeping up. And I knew none of those emotions could linger as they would only help feed the pain rather than fight it.
I also know this is a process that takes time. Not that it made it any easier.
With pain comes stress, and with stress comes pain. It’s a vicious cycle that can quickly lead to depression, which is why I needed to create a healthy environment to encourage healing.
To be honest, I thought this would be a week-long break. I’d dealt with this before, no biggy as long as I could get past the guilt I felt from not working or finishing projects, which has always been my biggest obstacle. But before long, the days turned into weeks which turned into nearly 2 months, yet they all meshed together. I’ll admit there were some decent days sprinkled in, but my optimism led me to overdo it or to eat the wrong foods, and I’d wake up the next day back at square one.
The pain seemed to be getting worse, and on top of that, I learned I was sensitive to gluten and had leaky gut (fun), which left me with additional food sensitivities and symptoms. The fatigue and brain fog were so bad that it was hard for me to be out of bed for more than a couple hours at a time. I couldn’t watch tv, read a book, or stare at my phone because it was too much work.
Naps became an all-day occurrence.
It was scary, but Eric has been my rock, crazy supportive, and I don’t know what I’d do without him. (I LOVE that man so much!!!!!)
I wanted to do research, but I didn’t want to do research. I wanted to go to the doctor, but I was scared to go to the doctor.
Note: At the time, I didn’t want to deal with bouncing from doctor to doctor while being prescribed numerous medications and creams, which is what happened last time. Even so, I now see it may have been helpful to have scheduled an appointment with a naturopath doctor earlier on. I didn’t have to be so stubborn and try to figure this all out on my own. Plus it could have helped take away some of the guesswork. So keep that in mind if you’re going through something similar.
Plus, I didn’t want to rattle off symptoms only to be prescribed a bunch of medication. Nope, I was determined to get to the root cause and take a holistic approach instead. My curiosity is what led me to really dig deep and to start learning anything and everything I could about autoimmune diseases, gluten, and leaky gut. I had to evaluate everything so that I could bring myself back into alignment, but also had to surrender the control I was holding onto and stop trying to avoid the pain.
Reading articles was challenging and wore me out. It felt like I took some drowsy, cold medicine, so my attention span was limited, as was my focus. Thankfully, we subscribe to Gaia, which now also includes the Food Matters network, so I was able to watch a lot of different documentaries and absorb what I could.
The good news is I’ve found ways to manage the symptoms and feel more like myself today than I have in a very, very, long time. This is the me I’ve been searching for, the one I thought was lost.
Is “leaky gut” the cause of your auto-immune disease?
If you’re unfamiliar with intestinal permeability, otherwise known as “leaky gut,” here’s the basics of how I understand it after watching a video from Dr. Tom O’Bryan in a Gaia documentary about gut health:
Over time, molecules can tear through the intestinal lining, aka gut lining, and some researchers believe this happens every single time we eat gluten. For the most part, and most people, this lining automatically repairs itself, but over time it may stop healing.
The problem is when the lining is torn and doesn’t heal, undigested food particles, bacteria, and toxins can break through the lining and end up in the bloodstream. Then the immune system senses a problem and attacks those particles and bacteria, knowing they shouldn’t be there. This can create triggers that show up in the form of headaches, bloating, brain fog, fatigue, cravings, constipation, stomach pain, joint pain, inflammation, etc., and symptoms can be mild or severe. This is what’s considered “leaky gut”.
So regardless if you eat an orange or Cheetos if the food particles get into the bloodstream due to “leaky gut”, then every time you eat that specific food, your immune system could react and create inflammation. And when the lining is torn, more food particles, bacteria, and toxins will continue to get into the bloodstream creating more inflammation and potentially disease.
This is also why some people will take a food sensitivity test when they first discover they have “leaky gut” and will see they are sensitive to over 20 foods. However, once they repair their gut they may only be sensitive to a few. At least this is my understanding from the research I’ve done so far, and specifically from the abovementioned documentary.
I haven’t taken one of these food sensitivity tests yet because I figured I would try an elimination phase before taking it. For some, it’s an excellent place to start, so that’s up to you. Especially because it can take out a lot of the guesswork, and may even show you’re sensitive to something you would never have thought, including foods on AIP.
Note: It’s often recommended to get tested for certain diseases before beginning an elimination diet, so be sure to speak with your doctor. For example, Celiac disease can only be tested while you’re eating gluten, otherwise, the results can be inaccurate. I didn’t realize this until after I stopped eating it, and after accidentally consuming a small amount there’s no way in hell I’m going to eat it for weeks just so I can take a test telling me to avoid it. Those with Celiac or thyroid issues have to be even more strict to avoid gluten, so if you’re worried about gluten or want to get tested, keep this in mind before changing up your diet.
I was also intrigued to learn that leaky gut can lead to nutrition deficiencies, so if you have any, this may be worth researching further.
I was probably most fascinated to learn that leaky gut is generally what causes autoimmune disease. Whaaaaat?
So it’s possible I’ve had gut issues for a long time and just never realized it. This is because we can have a “leaky gut” but not feel sick for several years despite the damage occurring on the inside. (This is where speaking with your doctor and doing bloodwork can help catch it).
However, “leaky gut” can be reversed, meaning so can the symptoms!
This means if you’re experiencing auto-immune flare-ups as a result of leaky gut, then it’s possible to bring some (or all!) of those symptoms into remission.
This isn’t necessarily a quick and easy fix. In fact, for some, it could take years and may require long-term lifestyle changes. The key to healing the gut is to remove food sensitivities from your diet altogether, eat healthy foods, and take nutrients or supplements known to improve the gut lining such as probiotics, glutamine, turmeric, enzymes, and omega 3 fatty acids. It’s also beneficial to eat cultured/fermented foods and prebiotic foods that feed the good bacteria.
If this is something you want to try, I encourage you to do more research and to speak to your doctor for help along the way.
After better understanding leaky gut and how my flare-ups were food-related, I decided to try out the Auto-Immune Protocol. I figured there was nothing to lose (well, except for my sanity on days when I had bad cravings), so why not?
The Auto-Immune Protocol is a holistic approach to reducing or eliminating autoimmune disease by removing inflammation-causing foods until symptoms subside. This can help determine food sensitivities and restore the gut to optimal health. This includes removing foods such as dairy, eggs, soy, grains, refined sugar, legumes, seeds, nuts, nightshade vegetables, emulsifiers, and other food additives. You can learn more about it here.
This can also be referred to as the Paleo Autoimmune Protocol or Autoimmune Paleo because it’s a more strict version of the Paleo diet, which focuses on eating nutrient-dense food (basically eating the way our ancestors ate).
I’d be lying if I said this was an easy process. Instead, it’s taken a lot of trial and error.
I’ve been on the AIP (autoimmune protocol) for a month now and am also taking supplements to help heal my gut and relieve joint pain. I now feel more in control of my autoimmune flare-ups and my health.
If you decide to go on AIP, I recommend diving right in, if possible. Otherwise, if you only do it half-ass, as I did, you may end up with half-ass results, or the trial and error period may take longer.
With that said, I don’t know if I would have fully embraced AIP if I thought I had to give up so much right away (especially since I don’t eat meat).
The fact that I eased myself into it made it feel more manageable. And as the days passed, I began to feel more empowered, which made it easier to eventually eliminate coffee and certain foods, like potatoes and rice. Then as I began to feel better, I could instantly tell when I had a reaction to food, which made it easier to commit to the AIP-compliant food list. (Reactions can happen within minutes, or it could take up to 48 hours.)
This isn’t to say I didn’t have tantrums because I was craving unhealthy foods or something I didn’t have to cook (just ask Eric). And anytime I spoke to someone on the phone I asked what they were planning to eat that day, just so I could daydream about it. Yup that happened quite a bit, especially in the beginning, but as I pushed forward, those cravings faded, and the process became easier.
Moral of the story? Don’t let the overwhelm of what you can’t eat stop you from giving this a try if you think it may help you. Instead, focus on all the nutrient-dense food you can eat and allow yourself a couple of other options in the beginning if needed.
Another option is to start on the Paleo diet, and then consider doing the AIP later on if necessary.
I’ve been keeping track of everything I’ve eaten for more than a month now, along with what I was going through emotionally or pain-wise. In the beginning, I had to make quick notes on my phone’s notepad since writing in an actual notebook was too painful. It’s been incredibly helpful to go back through those notes because it’s easier to pinpoint food triggers or improvements that have occurred.
And again, incorporating supplements took it to a new level, since they were speeding up the process of healing my gut and helping me absorb nutrients.
The good news is that AIP is temporary. The goal is to remove trigger foods for an extended amount of time so that when you slowly add items back, you can easily see what foods create flare-ups. You’re technically supposed to do the AIP for 30 days before introducing any new foods, but some people need to stay on it several months, or even years, depending on how severe their symptoms are.
Vegan + AIP
I decided to add walnuts early on because I don’t eat meat, had some on hand, and had a freakout moment thinking I needed more protein. To be honest, I was feeling pretty wiped out that day and was willing to try anything to help me get out of bed. Looking back, I don’t think it was necessary, but at least I haven’t had a reaction to them. Plus, as long as you’re eating a wide variety of veggies, you should be able to get enough protein. (Nutritional yeast also has a lot of protein.)
If you’re a vegan or vegetarian and worried about getting enough protein, be sure to speak with your doctor, nutritionist, or AIP consultant to see if there are any foods or protein supplements you can try to include. Researching or speaking to other vegans that are on or have done the AIP can also be helpful. There are Vegan AIP FB groups and forums available, something I wish I would have looked into earlier.
The only other advice I have if you choose to follow the Auto-Immune Protocol is to create a Pinterest board with AIP recipes and start trying to make some – especially sauces since they are what can really flavor up the food. Stock your pantry with the right foods (I know that may be challenging right now), and get rid of or move foods you want to avoid during this phase. The first couple of weeks all I did was think about food – mainly food I couldn’t eat, haha. Then I started making some of the recipes and felt more excited. There’s a learning curve, for sure, but it’s doable! I see it as a fun experiment and now have recipes I plan to continue even after I reintroduce foods back in.
I’ve been wanting to make my own sauces, dressings, and stock for a long time but never did out of convenience. Now the universe is making me, and I’m totally okay with it.
Despite how difficult these past couple months have been, they have also been transforming in the best way possible.
I did end up going to the doctor, one that studies functional medicine. However, by the time my appointment rolled around I was already feeling better and my symptoms were in remission so all I could do was tell her what had been going on. She basically told me to keep doing what I’m doing. Afterward, I decided I’d still like to get some bloodwork done, but now with this whole social-distancing thing going on, I’ve decided to hold off until this craziness passes. I’m not in a rush, and it’s not an emergency, but it will be interesting to see the results. I’m excited to continue on this path because I know my health can only continue to get better from here.
A Holistic Approach to Healing
While I know there is a time and place for modern medicine (and thank God for it!), I’ve always preferred to take a more holistic approach to health when possible.
While I don’t take medication, I understand it’s necessary in some cases. Some people have pain far more excruciating than mine and rely on medicine to get them through the day. Trust me, there were many times I wished I had some sort of pain medication during my flare-ups. If that’s you, I still encourage you to speak with a doctor that specializes in autoimmune disease to see if there are any lifestyle changes you can implement to bring even more relief.
It’s all about finding a balance between the mind, body, and spirit. So managing stress, being mindful of our thoughts, slowing down, nourishing ourselves, getting exercise, and making time for whatever brings us joy are all essential components to incorporate into our daily lives.
This doesn’t mean I’ve always done a great job at it, obviously, but I’m definitely a work in progress.
It seems doing only one of these things can bring relief, but I believe all are needed for results that last.
While I’ve witnessed first hand the link between food and my autoimmune flare-ups, I also know the results wouldn’t be the same without practicing mindfulness and self-care.
The good news is when you eat better, you feel better, which means you generally think better thoughts and want to take better care of your body. So it has a domino effect. Everyone is different, so remember to listen to your body and be aware of what you need. You can become your own health advocate.
For me, this is more than just changing the way I eat or making temporary changes for short term relief. Instead, it’s a lifestyle about finding balance and learning through trial and error. I still have to be mindful of repetitive tasks or placing too much weight on my wrists, but I can already see I’m getting stronger.
I’m thankful for all of the pain and craziness that happened last month because otherwise, I probably would have done what I’ve always done – rest up, work through it, then move on, and never have gotten to the root cause. This time I was forced to stop, pay attention, and make changes.
This process hasn’t been easy, far from it, and I’m still learning every day, but feel empowered knowing I am now better equipped to manage my autoimmune flare-ups.
Ultimately, I think it’s important to create an environment that nurtures our mental and physical health and makes it easy to maintain healthy habits. We need to stay aware of our thoughts and remain curious about the messages our bodies are telling us. At first, it may show up as a whisper, but if you don’t pay attention, pretty soon it will be shouting.
Try to catch those whispers.
There are tons of incredible resources available when it comes to auto-immune diseases, AIP, “leaky gut” and holistic health, but here are a few you may find helpful.
- Living with CRPS
- The Dangers of a B12 Deficiency
- Dr. Tom – Focuses on Functional Medicine and info for those with gluten sensitivity or auto-immune disease
- AIP – The Paleo Mom
- AIP – Thriving on Paleo
- Autoimmune Podcast – Phoenix Helix –
- AIP History – Autoimmune Wellness
- AIP – The Paleo Way
- AIP – Vegan Health
- Gaia/Food Matters / Prime Add-on Option (affiliate link) this is a video subscription with tons of great documentaries)
- Eating Mindfully – why it’s important to eat in a parasympathetic state
- The 10 best vegetables for protein
- Vegan AIP Facebook Group
- The truth about protein podcast
And if you’re looking for more guidance on how to relieve stress and become more mindful, be sure to check out Eric’s ebook, the Beginner’s Guide to a Happier Life!
If you have other tips for managing auto-immune flare-ups, have been on the Auto Immune Protocol, or are currently on it, I’d love to hear your thoughts or fave resources!