I’m sure you’ve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?!
There’s a lot of different ways this phrase is interpreted, most of us associate it with rest. When your body is sending you cues to slow down or some time for self care. That’s all true, but what about all the other important aspects of it?
There’s a lot more to it than you’d think. Most of us with chronic disease are in tune with what’s normal and what’s alarming.
“Your body will let you know”
Most people when recalling a diagnosis story, they’ll tell you that golden advice. They will say “your body will let you know, you just have to listen to it” so what does that really mean? What are we listening to or looking for? Do we run to the doctor each time we have a funny pain?
Well that depends, first, you need to get to know your body.
“no one knows your body better than you”
Not all of us are in tune with our bodies, especially if you’ve never had a major health condition. We can brush off a lot of symptoms because we’re unsure of their importance. So I’m going to give you some tips and explain a bit more of what to be looking for
In order to get to know your body, you have to start listening to it. If you have a normal every day pain level of 2, take note of that. If you’re someone who has no pain at all, take note of that too. If you’re a woman, take note of what your breasts feel like, on and off your period. Get to know your smells, if you normally don’t have a perspiration smell or do. Do you often get headaches or is it unusual for you? Do your eyes twitch when you’re tired, or all the time? Is your skin very dry? Always or just sometimes? How’s your mental state? Are you a very anxious person or very calm? Always tired or full of energy?
These are just random examples, but you get the idea. We have to get a baseline idea of what our bodies normally do in order to know when it’s giving us cues. Or in some cases, alarm bells.
It’s pretty normal for most people to have the odd symptom here and there, it’s typically nothing to be alarmed about.
When I start to become more alert is when I experience a new symptom that I’ve never had before or haven’t had for a very long time. I take note, and I follow it to see if it’s getting worse or becoming consistent.
I break down the urgency by persistent or consistent. If you’re experiencing the same symptom over and over again, that’s when your body is really trying to tell you something.
If I’m experiencing a symptom that’s worsening, that’s when I’m making a trip to the doctor.
Why is it important to listen to your body?
If not you, then who will?
Going back to when people are diagnosed, later when they recount their story, they remember certain cues or things that were off. They recall things their body was doing that perhaps didn’t seem like such a big deal at the time. I can’t tell you when something is urgent, because everyone is different. I can tell you to listen and try to judge with the best of your knowledge.
I can also tell you that if something impairs your daily life or capabilities, it’s not to be ignored.
I’ll give you some examples of things I personally take note of and how I deal with them.
If my headaches become more frequent, I start to take note. It’s not for nothing, but it can be due to lack of sleep, or stress. If they become more frequent and severe, that’s when I’ll bring it up at my appointment.
Energy levels and fatigue: if I’m sleeping well, and doing all the right things – yet I’m still exhausted… I’ll take note of it.
Perspiration: if it changes or has a different smell, I take note of it. Hormones can change the way your body smells, so it’s good to know the differences.
Abdominal pain: There can be so many different types of pain, I for one experience pain on a daily basis for numerous reasons. So I take note of the level, the location, and the frequency. Is it linked to an activity? A food? Is it the same pain? How would I label it?
Skin changes: I used to think this wasn’t a big deal. “My skin is just dry because of winter”, or “I just have dry skin”. That may sometimes be the case, yes, but I’ve also had major skin changes to alert me of my thyroid changing, and my cortisol levels depleting. Many issues in our body lead to a hormone imbalance, so it’s important to be aware of the trends.
Hair loss: it’s normal to lose a few strands of hair in your brush, and in the shower. However when you’re losing clumps, getting bald spots, and it just falls out without brushing or washing, it’s a cause for concern.
Brain fog: some of us can get a bit foggy when we’re overwhelmed or not sleeping enough. However, brain fog is also a major symptom of many illnesses. It can also be caused by medications. For me personally, I take note and try to link it to a specific cause so I can deal with it IF possible.
Bloating: this can be a major issue for some of us, it can be something that needs to modified in your diet. That’s the first thing I try to take note of by trying to link it to a food intolerance. Next I will make note of the severity, does it happen after eating? Does it happen out of no where? Is it painful? Does anything help it?
Mood changes: first thing I ask myself is if it falls under my normal reaction or trends. I label the feeling, try to link it to something, and if not I ask myself if it’s related to lack of self care. If it’s really an irrational random reaction, I take note because it’s typically linked to something more important.
I could probably go on for a while with the types of symptoms I feel, but you get the picture. First take note of what it is, then try to keep an eye on the trends. Frequency, severity, and description. If you’re someone with a lot of different symptoms, it’s best to take note of the ones that stick around or are particularly painful.
Once you have your baseline of what’s ‘normal’ to you, you can then start listening for the alarm bells and cues.
Remember, often it IS a gentle reminder to take it easy, slow down, get some rest. However the only way to know is to be in tune with your body, that’s when you can begin to really listen to what it’s trying to tell you.
When I make note of all of these things, I generally try to make changes in my control to see if anything helps. If nothing changes or it becomes worse, I will talk to my doctor, get some labs done, and see what kind of plan we can come up with based on the results.
You can read how to best prepare for a doctor’s appointment here.
Sending love, unicorn magic, and a whole lot of fabulous your way 🤍✨
In this post I’m going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention.
I’ve dealt with my fair share of pain, I remember living day to day at a pain scale of 12+ and couldn’t quite get it under control. I truly suffered for years and pain was my primary issue.
I remember not being able to stand because my feet were so sore, I couldn’t sit because my tailbone hurt so much, and I couldn’t comfortably lay down because my skin literally hurt to the touch. I was miserable. But there were things that we learned along the way that helped significantly, so I’m going to share them. But not before I explain WHY 👇🏼
Please always consult your team before making any changes. Integrating new techniques into your daily routine is okay, but removing something without your doctor’s knowledge can be dangerous.
If you didn’t already know, we heavily advocated for a diagnosis of mast cell disease this year. There was a lot of symptoms not adding up with my primary illness… and a lot of red flags over the years for MCAS.
Part of having mast cell disease is a chemical and medicationintolerance. Your body doesn’t like a lot of stuff. So the regular pain management approach that was being used for me at that time, was unknowingly making me worse. Much worse
When you have pheochromocytoma or metastatic disease, pain relief can already be tricky since there’s medications that can make the same hormone expression in our bodies as the tumors. Sometimes making us more symptomatic and in more pain.
If you mix mast cell disease into the equation, it’s a recipe for disaster.
So what did I do? Well first, we had to evaluate if I was on the right medications… or on the wrong ones!
This is a quick emergency reference guide of medications to avoid and that are better tolerated in most cases of mast cell disease. This is from the mast cell society.
So once I fully detoxed from the bad medications on the list, and began life saving treatment for MCAS, I could now begin my healing journey. It saved me, I could now begin to manage my pain.
All that being said, let’s get to pain management!
With such a restriction of traditional pain management, we had to start learning different forms from of relief. I was kind of forced to do so, and I’m actually thankful for that. I don’t think I would have believed how well integrative relief worked if I hadn’t tried it myself. I think that this is something every chronic pain sufferer should know either way.
Mind body connection:
I’m not going to get too scientific, but I was told when I had my very first surgery that the brain will imprint pain.
If the brain gets used to pain, it’s difficult to find relief. Which is why it’s important to understand the link between the mind body connection.
You can’t just say “okay I’ll be really positive and believe I’m not in pain and it’ll go away!” No, it’s much deeper than that.
The more pain we endure, it can make the brain can experience anxiety and depression. Which makes pain worse.
Which is what led me to managing pain in a way where I don’t just throw a pill at it.
I know, it was hard for me to wrap my mind around this too. We are made to believe that medications are the only way of pain relief. Especially in palliative care. But please don’t get me wrong, I’m NOT saying medications are bad, I’m just saying that it takes MORE to truly control pain. Also in my specific circumstances, I didn’t have a choice. With the restrictions on the list above, pain management isn’t easy.
Let’s talk about that sudden, unexpected, all encompassing type pain that makes you feel panic and pushes your body into overdrive. My list may seem extreme, but I promise the more prepared you are…. Quality of life improves significantly.
Through panic tears, squeezing headache, nausea and sharp belly jabs, it’s difficult to give the body the oxygen it needs to calm down. So there’s a few steps to a flare that I follow. Especially if chest pain is involved.
*if you’re alone, you will want to put aside an emergency pain flare setup. So things can be easily grabbed and accessed. If you’re with someone, they need to know how to respond and what measures to take. Either way, perhaps print the following information and keep it handy. I will also include a list of supplies at the end.
1. First, get to your safe place. For me, this is my bed. My bed offers me the most relief, and I can adjust to how I need to position myself.
2. Elevate your legs, I have an adjustable base, which allows me to put myself in zero gravity with 1 touch. This has been a life saver for me for many reasons, but not everyone has this. Keep some firm pillows or preferably a wedge nearby to quickly access if your bed is not adjustable. Putting your legs into what they call ‘zero gravity’ position means your legs are higher than your heart.
120° angle bend at the hips puts your body in the “zero stress zone”
Spinal vertebrae are decompressed and muscles are relaxed
Airway and nasal passages are opened up
Elevated legs reduce stress on the heart
Heart and stomach are slightly below the head and knees
I can literally go on and on about the benefits of zero gravity, which is why I have an adjustable bed. In a flare, it will open your airways, reduce the stress on your heart, and put you into a reduced stress zone for pain relief. This is scientifically proven.
3. Once you’re in your safe zone, your legs are elevated, you will begin to feel just a tiny bit more calm. I promise. Reducing the feeling of stress and panic to your body will already alter your pain receptors, allowing your body to be less tense, and begin to think more clearly.
4. Heat and Cold Therapy: In a flare state, most likely you will experience sweating, flushing, and added discomforts. Which brings me to my next point: heat and cold therapy.
Having a cooling band for your head will help relieve the inevitable headache you will experience, and it will also cool your body temperature. Cool therapy also can help with nerve pain. So having more than 1 cooking band is a good idea. You can even use a cold wash cloth. Whatever works for you.
Heat therapy is typically a heating pad, or some sort of heat relief. So again having it ready and easily accessible is important. I always have my heating pad rigged and ready to go inmy bed.Always plugged in! The more prepared you are, the smoother these flares become.
5. Massage: most of you are probably reading this and going “well I don’t have a personal masseuse!” 😂 and I get that. I promise, I got you!
IF you do have someone able to gently rub your body to relieve the tension the pain is creating, then do so. Not all types of pain allow us to be touched, but if it’s not the yucky skin pain, then go ahead with light massage.
If you’re a caregiver reading this, the power of a light touch is incredible. Even if it’s just to say “I’m here” without words. This is dependant on your partner or loved one, but I find it very helpful to have my head rubbed lightly during this event. It’s helpful for the body to go into a relaxed state, loosens the muscles, and can alleviate some of the tremors.
So what do you do if you’re by yourself? Well you guys KNOW how much I love Amazon. (Hehehe)
Introducing the massage mat: it can even be heated! Which eliminates the use of a heating pad. So many of you have asked me if I know about a heating pad that hits all areas of the body, so I did my research, V 😉
6. Guided Meditation or sound therapy: okay, I’ll ask you to keep an open mind here. I know a lot of us hear the word meditate and think something entirely different than what it is. Meditation simply means your mind is focusing on a particular thought. Learning how to meditate is incredibly important because if we circle back to the first step, you’re much more likely to achieve a state of reduced panic if you’re able to practice mindfulness. And that’s what meditation is, practicing mindfulness. I had NO idea how to meditate, and honestly? I like to take the guess work out of it. Which is why I use a guided meditation practice. I’m sounding all fancy, but literally just search on YouTube ‘guided meditations’. For this specific circumstance, I will link the one that helps me in a pain flare. It’s short, it’s specific to pain, and it’s very good at calming me down and putting me to sleep. Sleep is the primary end goal in a flare. I will talk more about the benefits of meditation later.
*Once you are able to achieve this mindfulness, you can use this focusing technique during painful procedures, scans, and any situation where you need to disconnect.
Sound therapy means that if you’re unable to listen to someone speak like in a guided meditation, you can use sound healing instead. It operates on a frequency that can offer different forms of relief for your body. Here’s an example of a pain frequency:
7. This may seem obvious but keeping your flare up emergencymedications close to you in different parts of the house can make all the difference. I keep a mini medication kit beside my bed since that’s my safe place. If I’m experiencing ‘that type’ of headache, or anything flare related that can be calmed with medication treatment, I take it before doing anything else. That way it has time to sink in while I’m trying to calm my body.
If you haven’t already noticed, the primary goal of pain management during a flare is to calm the nerves, the nervous system, the mind, it’s all about the calm!
8. At this point we should have achieved a state of exhaustion, the pain should be dying down, but we have nothing left in our tank. So it’s time to sleep … sleep is the number 1 restorative factor in our overall health and actually helps with daily pain control. If you get a restorative night’s sleep, your body and cells regenerate and heal. If we reframe our brains and pretend like you’re going to pay 120$ for some special exclusive healing therapy, we might be more motivated to get our money’s worth!
So what we just went over was mainly considered pain relief type practices, because they’re meant to reduce pain NOW. But what I’ve learned I’m trying to manage my pain? It’s a full time job!
Daily healing takes time, dedication, education, it can be expensive, and can seem daunting to do on our own. But the way I’ve explained it, I’ve used a lot of selfhealing methods to try and remove some of that burden.
Pain management is the practice of constant self care and prevention techniques, it’s treating your body like the precious vessel that it is. It’s self care, it’s nutrition, it’s movement, it’s mindfulness, it’s everything we discussed above and much much more.
If you rolled your eyes at any one of those things, I get it. I really do. I am NOT saying “get some fresh air and do some yoga” and you’ll feel all better.
I am not minimizing pain nor am I saying it’s a one size fits all, I’ve been exposed to chronic pain all of my life in various forms. I’ve grown up witnessing my father suffer in chronic pain from a work accident. My sister having been hit by a car and in an extended coma when I was 12… I’ve seen pain. I am a 30 year old palliative woman, I GET PAIN. I promise I have the life credentials.
But what I am saying is that… the thing they don’t teach us in the pain clinics or when people are prescribed heavy narcotics, is that our brains play a powerful role in how we feel. The mind body connection is so important, and once understood and used correctly… can be life changing.
I’ve gotten angry at people for telling me to take a walk or get fresh air. Especially when I was physically unable to do those things a lot of the time. It won’t cure you, it won’t make it go away, but in combination with other daily habits can really help us toward managing our mental AND physical well being.
My husband showed me that no matter what your circumstances, you have to continue to do the things you love. The things that bring you enjoyment and calm. So hopefully I can be that person for you.
If I couldn’t leave bed, I’d get outside in my wheelchair. Feel the vitamin d in your face for a moment, breathe the fresh air. It’s just an important note to change your surroundings and not fall victim to your illness.
My daily management road map:
You’re going to see a trend here, the main goal for management is to manage your stress, your mood, your mental well being, your body’s inflammation levels, physical activity… but overall, the mind plays a major role in pain management strategies. Let me show you:
1. Nutrition: If your condition has any link to food triggers or intolerance, get to know them. Study them inside and out and start eliminating. Don’t wait, I’m telling you! I wish I had done this sooner. Start writing down what you eat and how you felt afterwards. I knew with pheo I couldn’t have foods high in tyramine, but I didn’t really understand the impact. I knew with MCAS I couldn’t have foods high in histamine. If you’re unsure of your condition, an elimination diet could be helpful. Then once you reintroduce the foods one by one, you will see what you react to.
Understanding the role of nutrition is probably… one of the things that impacted my overall health the most.
Weight related pain caused me extreme joint pain, weakness, skin sores, inflammation, clothing discomfort. My conditions kept me gaining and incredibly inflamed, swollen, sore. Until we finally figured out what diet worked best. For me and my angry tumors, my broken mast cells, and my AI, the best lifestyle I can follow is: low carb, sugar free, low histamine and low tyramine life.
Anyone can benefit from eliminating processed foods and sugar, but it’s a personal choice and can be difficult when trying to manage everything else. Believe me, food is a great source of comfort for us. Hello, doctor CUPCAKES. But when I saw the difference in my pain and even my mood? I wish I had known sooner
If you don’t know where to begin, just stay in the fresh part of the grocery. Whole foods are vegetables, eggs, meats, and anything that isn’t processed or canned. I know this sucks, but eliminating alcohol completely is so important with this disease. There’s really no good alcohol and it will cause an immediate reaction.
2. We talked about meditation, so if you can, incorporate it into your daily lifestyle. Like I said, start slow, and easy. Open YouTube, type ‘guided meditations’ and choose one that speaks to your mood at the moment. Anxiety, stress, grounding, chakra balance, pain, overactive mind, sleep, self love, there’s a meditation for just about anything. Tips to incorporate it into your day: wake up and do a quick 5-10 gratitude session. Mid day when taking a nap, choose one that’s a little longer to rest to. Then when you go to bed, put one on for sleep. That’s 3 right there!
3. Daily mindfulness: because I’m often asked what my daily habits are and what is self healing… I use an app called aura, it curates coaching sessions, CBT therapy, breath work exercises, meditations, all specific to your needs. It’s a quick and beginner way to learn how to connect with yourself.
Try exploring some self healing books, some topics I recommend are: PTSD recovery, gratitude practice, mindset, anxiety control, and self care. If you’d like me to share my reading list let me know in the comments and I will dedicate a post to it.
If you’re new to practicing gratitude, order a 6-10$ gratitude journal on Amazon. This would be a good place to start. Acknowledging what we’re grateful for helps dig us out of a rut, it improves our way of thinking, and it allows us to see the good even when things are very bad. Law of attraction is real y’all!
If you’re asking yourself… what does this all have to do with pain? You’re not wrong for asking, most people connect pain relief with traditional practices and physical actions. But for management it’s important to be managing your mindset, mood, outlook, and coping strategies. It’s all linked in one way or another, but I can’t do more than offer you the guidance and assurance that it works for me. It’s up to you to make the decision to include what works for you.
Another way to practice mindfulness is to listen to music, get in a habit of putting on some headphones when doing any task. Listen to whatever speaks to your mood, anything to boost your happy hormones, am I right?!
4. Movement: okay this is a big one. It’s also hard when you’re unable to move much at all. I’ve been there as well. But movement is important for circulation, for inflammation, and pain relief!
Some things you can do if you’re sedentary: physio, physio, physio.
Think of when you just get surgery, the first thing they have you do is walk and sit. Think of it like that.
You can do physio in bed, you can do physio from a chair, and it doesn’t always have to be formal. I did my own physio for months with exercise sheets provided to me by the hospital. Ask your physician for some physio exercises, or look for your own and ask if it’s okay for you.
I also used to lift one pound weights in bed, just to move my arms around and not completely lose my muscle mass. We would do leg exercises while I was laying down, and I began slowly walking more and more.
Laughing, smiling, and bed dancing helps too.
If you’re moderate, you can incorporate movement by walking. What I like to do is give myself a daily steps goal, no I am not running a marathon so I won’t achieve 10,000 daily steps like most people, but I cried the day I hit 1000. Some days I would only get to 68 steps, so even if you increase that goal to 100, it ALL COUNTS! Now sometimes I can even get to 5000!
YouTube has a ton of free light impact workouts, physio routines, and light strength training. I love body by Amy, and I also really enjoy beach body on demand, they always include a modified version which I appreciate. I always do the super modified version!
If I’m walking – I’m dancing. I may look ridiculous, and I love it! I dance in the kitchen, I dance brushing my teeth, I dance doing my skincare. Any way to get some movement in and my blood flowing! Also, being silly helps you smile and helps others around you smile. And happy hormones offset angry hormones, well that’s what I tell myself anyway.
This may sound taboo for some but … sex! Sex is not only movement, but it’s a way for the brain to create natural endorphins. Making your body less stressed, happier, and reduces pain. Cool, right?! And remember, you don’t always need a partner for sex! Hint hint. I’ll leave you with that thought. In all seriousness, I know when we’re feeling blah and in pain the last thing you want to do is have sex. Sex can be painful for a lot of us, but it is good to keep pleasure in mind because it’s a natural way of creating pain relief and improved mood. Swearsies!
Good old walking, but make it enjoyable. Go somewhere nice, go to the water, the beach, the woods. Switch it up, let it be good for the mind and the body at the same time.
Last but not least, I try as much as I can to incorporate movement by doing everyday house tasks. I’m not able to do a lot, but unloading the dishwasher or preparing a meal can really change the way you feel about yourself. It makes me feel accomplished and it reduces my stress levels. And if you dance while you’re doing it, it’s a double movement bonus!
5. Sleep: we talked about sleep, but we have to make it a habit in order for it to be helpful and restorative. We don’t just want to pass out from a flare or when we’re delirious. (This was me for many years) once I got the proper treatment for all of my illnesses, my sleep improved. The night terrors went away, and the adrenaline panic jumps stopped.
Some things we can do to improve our sleep habits are…
-Clean sheets and comfortable bedding (you can’t beat that ‘hotel’ feeling’!) make every day like you’re on vacation in your own home
-Going to bed 1 hour earlier per night. (I have a sleep alarm on my phone that tells me when to wind down)
-meditate to go to sleep, or listen to a sleep story, or even just put on some calming sounds, I promise it works!
-if you experience sleep apnea or breathing issues, it’s important to participate in a sleep study and be treated
-zero gravity position. Yes! You can sleep this way. It’s not just for flares. Having a slight elevation opens your air ways, increases circulation, and takes pressure points off your back. It also helps with acid reflux sufferers. All of which wake us up frequently. Try it, thank me later!
Please keep in mind that sleep includes rest, so although we will be meditating daily, and doing mindful practices… it’s not sleeping. Our bodies need A LOT of rest, my nap time is 3pm sharp! Don’t ever feel guilt for sleeping, for resting, but I recommend really resting and not just watching tv or scrolling on your phone. Our bodies need time to restore, and yes nightly sleep is vital for this. But so is daily rest!
Especially if you’re feeling down or a depression creeping in, your body may require more resting time than normal. You will know when, just listen to the cues your body gives you.
6. Daily tracking: get used to writing things down. Download a diary app (orange diary, or diarium) or get yourself a notebook. The more you write down your symptoms, your triggers, your moods, your patterns, your activities, the more you will see what’s helping or hurting. It’s also helpful for your medical team and YOU! Think back to your last appt, Were you struggling to describe the type of pain when you were reliving it to the doctor? This is why tracking it is important, in real time. It gets to be a habit and it can be what literally saves your life.
7. What brings you joy? You guys, I can’t stress this question enough, I saved it for last for a reason. Not because it’s the least important, but because it’s the MOST important. Living with life altering illnesses can be all encompassing, most of us only go out when we see our doctors. Or for treatment, and if we’re really lucky, the grocery store. So I can’t stress this enough, what do you LOVE doing? What makes you happy?
I understand you may not be able to zip line or bunjee jump, but there’s always a way to adapt to your previous passions. And also find new purpose! We don’t lose who we are because we become sick.
Remember when I said my husband taught me it’s possible to do the things you enjoy when you’re sick? Well, it’s sometimes difficult, and comes with extra planning and help… but it’s do-able.
I’ve also found that the simplicity in life has brought me great joy compared to before, I can appreciate just about any moment or see something beautiful.
It’s all of the above daily healing practices that’s helped me with this. But we all hold the ability to see things in this way.
However we HAVE to do things that bring us happiness, it’s what gets us from one day to the next, and it’s what helps us release our minds temporarily from the pain.
Self care is a huge part of my happiness, all of the above is self care. Self care is dedicating time to YOU and your healing. So I am prescribing a big fat dose of SELF CARE to you! That’s why I share so much of my routines, my love for taking care of myself, because it brings me joy. And guess what? When we’re happy, we’re often experiencing a momentary release from the pain!
I personally love this, sharing. I love staying fabulous, and I love helping others. That’s what brings me joy.
I also love unicorns, Starbucks, writing, SHOPPING, Christmas, birthdays, chalet getaways, sunsets, selfies, massages, movie nights with friends, cooking, pedicures, manicures, skincare, makeup, my husband’s smirk, his smile, my dogs, pink things, soft blankets, my bed, fresh flowers, things that sparkle, planners, journals, writing lists, being organized, and … well, just about anything else. Not in that particular order
I’m not hard to please. My point is, think of what makes you happy. Do at least one thing per day that gives you that feeling.
So that’s all folks, that’s my pain relief guide and management plan. You have aced the course! Now you just have to live it. I bet you weren’t expecting what you just read, but living it is the best part!
I always say the best feeling in the world is having something to look forward to. Well I hope I’ve created that feeling for you, planning all the ways you will incorporate these into your life to successfully manage pain!