When Things Don’t Go as Planned

If you’re anything like me, you’re a planner. You like to know what’s going to happen and when. Some (including myself sometimes) may call me a control freak. But really, I just like to be prepared. I thrive on routine, on knowing, at least generally, what a day, or even week, have in store for me. It allows me to budget my brain power, my energy, my time, and my money. I can have everything I need when I need it, and look forward to all the good things heading my way.

I think I’ve always been a planner. But when I started experiencing symptoms of Interstitial Cystitis (IC), and then of Fibromyalgia more recently, I really had to start planning. With the IC, I began using the restroom religiously before I left the house. I searched for all the bathrooms everywhere I went and planned out excuses for why I had to leave the room that had nothing to do with my IC. If I was going out with friends, I’d want to know at least three days ahead of time, so I could prep my body and and avoid all trigger foods. This helped me with my plan to have a good time.

When Things Don't Go as Planned

The same kind of things started happening when I my fibromyalgia symptoms kicked in. I began planning my days around my pain and fatigue. If I had something big coming up on a Monday, I’d spend the whole weekend in bed or on the couch, resting so I had the energy to do what I needed. I’d make sure not to plan anything for the days following, knowing I’d need the recovery time. Even now, when my symptoms are relatively under control, I find myself leaving my weekends open so I have time to just rest.

While all of this is well and good, sometimes plans don’t work out. Life has a way of being rather unpredictable. We can try our darned best to plan out every single day in a way that helps us manage our symptoms, and really just our lives, better, but the thing is, we can’t control it all. Life happens. So what do you do when you can’t follow through on your plans? What do you do when life has other plans?

When Things Don't Go as Planned

What do you do when things don’t go as planned?

The first thing I do is breathe. I have a tendency, as I’m sure a lot of you do too, to get super anxious when things don’t go as planned. So when this happens, I take a moment to just breathe. Breathing allows me to regroup, process what’s happening, and make a new game plan to make it through.

Next thing I do is reassure myself that everything is going to work out. Because, you know what? About 99% of the time, things work out, regardless of your plans. I find that incredibly reassuring. Even though I still like to have my control and have a plan, I can reassure myself that everything will work out simply because I have faith that it will. This step is a little easier said than done, because the anxiety can sometimes be overwhelming, but I find it immensely important. Even if you don’t believe yourself as first, keep telling yourself that everything will be okay. Because it will.

When Things Don't Go as Planned

A lot of times, my plans are thwarted by my illnesses. And this can be the most frustrating thing, because then it feels like it’s all my fault. Especially when it’s illness related.

Those of us with fibromyalgia completely understand how this goes. We often make plans when we’re feeling well, or when we think we’ll be able to prepare. But then something happens. Usually, it’s a flare of sorts, leaving us in extreme pain, fatigued out of our minds, and stuck in bed. Doing anything in this state is pretty much out of the question, no matter how bad we want to.

The guilt associated with cancelling or changing plans, or even just changing your own plans, can be debilitating in itself. It can make you feel like a failure and a disappointment, to yourself and your loved ones. That’s why the next thing I make sure to do is reassure myself that my illness is not my fault. And that I should never ever feel guilty for prioritizing my health, care, and sanity over other plans.

So whether things aren’t going as planned due to your illness, or for other reasons, do these three things: breathe, tell yourself that everything will work out the way it’s supposed to, and remind yourself that you have nothing to feel guilty for.

Why I’m So Open About My Fibromyalgia

I want to get personal with you guys today for a few reasons. First off, if you’re reading this blog, you’re looking for information. Or someone to relate to. Or for some hope. Because Fibromyalgia sucks and the journey can be incredibly trying. I also want to be personal with you because I want to make sure you know where I’m coming from with these blog posts. I want to make sure you trust me, because this community means the absolute world to me, and none of my words mean anything unless you get to know me and trust me.

So here we go!

Why I'm So Open About My Fibromyalgia

It All Started with Interstitial Cystitis

I want to preface this post a bit, as I usually do, by saying that being open about my illness is simply what works for me. I’m not saying it’s the right way to live life with fibromyalgia, and it certainly isn’t the only way. However, this openness has been the right choice for me, and I want to share with you exactly why that is.

I’ve always been the type to wear my heart on my sleeve. I was taught at a young age that communication is important, and that speaking my mind is not a bad thing (usually haha). I grew up in an environment where I was able to figure things out for myself, while still having the love and support of my family. My thoughts and feelings were (rarely) downplayed and I always felt like they were valid. So when I first started experiencing my Interstitial Cystitis symptoms at 16 years old, I was pretty quick to discuss it with my parents. While I was initially embarrassed by these bladder issues, and was uncomfortable talking about them, my family helped me feel a more comfortable talking about it, even if it was just with them.

I haven’t always been super comfortable sharing my illnesses, though. Especially since I developed Interstitial Cystitis as a teenager, and life is hard enough when you’re 16. I was embarrassed. I was frustrated. Why did something have to be wrong with me? Why couldn’t I just be healthy and normal? Why I'm So Open About My Fibromyalgia

Then, I went to college. And I started to stress about it even more. What if my professor asks me why I’m always running to the bathroom? What if that cute guy at the party sees me heading to the restroom for the fifth time this hour? But luckily, even then, I still had people I could trust to talk to. My friends, roommates, and family were all incredibly understanding and supportive. Even if they’d never experienced anything like it, they tried their darned best to be there for me, and for that, I am forever grateful.

Because of my support system, I slowly gained the confidence to embrace my illness and not worry about other people finding out. I got to the point with my Interstitial Cystitis where it was just easier to tell people that I have “health problems” or “bladder issues” before they ever had the chance to ask “you have to go to the bathroom again?” It was less stressful to provide the warning, so that I could relax and not worry about someone’s reaction if my symptoms hit. Which, in turn, eased my symptoms a bit.

Thanks to all of these experiences, all of the anxiety, grief, and relief I felt with my Interstitial Cystitis, I was better equipped to handle life with Fibromyalgia.

Why I’m So Open About My Fibromyalgia

So that’s a little background, a little more info on how I became so open with my illnesses. I went through the shame, the frustration, and the dread. I went through it all. But with the right support system, I was able to gain the confidence and acceptance to talk about my illnesses. However, that’s not why I talk about them.

Why I'm So Open About My Fibromyalgia

I talk about my Fibromyalgia and my Interstitial Cystitis because it’s my coping mechanism. It’s how I handle my day-to-day. I’m not exactly running up to everyone saying “Hi! I have Fibromyalgia!”. But if someone is involved in my day-to-day, is relatively close to me, or even just reads my blog, they know I have these illnesses. That’s because Fibromyalgia and Interstitial Cystitis affect me every single day. They’ve both changed my lifestyle immensely and shaped who I am at this moment. How could I not talk about things that play such a big role in my life, even if it’s one I don’t necessarily love?

Another reason I am open about my illnesses is because I know others can’t be. I know there are people who don’t have the support system of family and friends that I do. I know there are people who work in places where they can’t even hint about being sick without fear of consequences. And I know there are people who just aren’t comfortable with it. The thing is, I’m going to continue being open about my illnesses, my experiences, and my chronic illness journey because I want those feeling hopeless or alone to know there are others out there like them.

A year ago, I had just started medical leave from graduate school, I was depressed, and I was essentially bedridden. Today, I’ve graduated with my Master’s, I’m working full time, and my symptoms are under control. Had you asked me last November if I would ever get to this point in my life, I would honestly have told you I didn’t think I would. I was hopeless. And I felt utterly alone, even with a good support system.

Why I'm So Open About My Fibromyalgia

Then, I decided to start writing. And my illnesses became a part of my blog, just like they were and are a part of my life. I got the right diagnosis and medical help I needed. I even found FibroAid! What I’m trying to say is, you can be in an incredibly dark place, but life does get better.

And that’s why I’m so open about my fibromyalgia. I want to make sure everyone knows that this is some people’s’ reality. But I also want to make sure those of you living that reality know that there is still happiness to be found and hope to be had. And if you’ve been wanting to start being more open about your illness(es), but have been afraid to, let this be your sign to slowly start sharing. And if you don’t want to be open about your illnesses, know that if you ever need anyone, this community will always have your back.

Simple Self Care for Fibro Warriors

Simple Self Care for Fibro Warriors

Okay you guys. I’m not going to lie to you. As I’m writing this, I’m laying on the couch watching football and drinking a smoothie because my back is in so much pain it hurts to do anything else. Honestly, my symptoms have been pretty darn under control lately, thanks to my meds and my FibroAid, but I guess I overdid it this week!

That’s why I want to talk about self care. Not the face masks and spa days kind of self care (although those are nice too). But I want to talk about the self care that keeps your pain manageable, your brain relatively clear of fog, and your energy levels high enough to do more than function. I want to talk about the kind of self care than allows you to live your best, happiest life, despite this annoying, sometimes debilitating illness.

Simple Self Care for Fibro Warriors

Simple Self Care for Fibro Warriors

Prioritize Yourself

I know this inherently sounds selfish, but here’s the thing: it’s not! When you live with fibromyalgia, or any other chronic illness, putting your health and your needs first is sometimes essential. You know that saying “you can’t pour from an empty cup”? It’s one of my favorites, because it’s so true and so applicable. If you are run down, flaring, or just emotionally exhausted, you aren’t any good to anyone, including yourself. So in order to be a good friend, family member, employee, etc., you have to prioritize yourself and make sure you’re well taken care of.

Simple Self Care for Fibro Warriors

Go Outside

I don’t necessarily mean go on some big hike or kayaking or skiing or anything, though if that’s what you enjoy, by all means, do it. But in order to keep it attainable and reasonable for all us fibro warriors, I’m just talking about getting some fresh air. Go sit on your back porch or lay in the grass. Walk around the block with your dog or take a stroll on the beach. Do something that gets you outside, looking at the beauty of nature, and breathing fresh air. It will help your mood and your overall wellbeing. I promise.

Simple Self Care for Fibro Warriors

Take a Bath or a Shower

Bathing can sometimes seem like a daunting task when you’re in flare and fatigue mode. It can be a lot of work. But there’s something incredibly refreshing and rejuvenating about bathing. If a shower is too much for you (with the standing and such), try a nice hot bath. Throw in some epsom salts, maybe light a candle or two, and turn on a podcast or your favorite music. It’ll help relax your muscles and your brain, and you’ll feel like a new person. If showers are more your jam, get some fancy soap and shampoo to make it feel more luxurious. And I still recommend listening to podcasts. They just make everything better.

Simple Self Care for Fibro Warriors

Cut Out the Toxic

I’m referring to people, things, responsibilities, all of it. Anything that doesn’t serve you, your loved ones, or your interests, cut it out of your life. Or, at the very least, don’t extoll too much energy on it. Because absolutely nothing is worth your peace of mind OR your physical health. I’m speaking from experience here too. I had to leave graduate school three months before graduation because of my health. My physical and mental health were deteriorating so quickly (I got diagnosed with fibromyalgia a few months later), that I just could no longer continue the way I was going. So I went on medical leave and finished my degree this spring, when everything was much more manageable

Simple Self Care for Fibro Warriors

Do Something You Love

For me, it’s horseback riding, much to my body’s dismay sometimes. But in all honesty, it’s worth it for me. It’s my escape and it’s something I’ve loved and will continue to love for years. Even just spending time with my horse and giving him love, much like you would a dog, can be therapeutic. I think part of it is being outside, but there’s something about doing something you love that is incredibly revitalizing. That’s also why I blog. Blogging is my creative outlet and a way for me to articulate my thoughts. It’s a way for me to feel like I’m doing something (because I am), even when I’m in so much pain I can’t move. Blogging and my horse are what got me through the worst months of my health so far, and I’m not sure how I would have made it through otherwise. So find something that gives you a reason to wake up, a reason to get up (if you can), a reason to function. Because having a feeling of purpose and something to look forward to is the ultimate form of self care.

Simple Self Care for Fibro Warriors

Working while Living with Fibromyalgia

Working while Living with Fibromyalgia

Working while chronically ill is tricky. And it’s tricky to talk about too. Which is exactly why I want to write about it. The thing is, when you have a chronic illness life fibromyalgia, working can be a necessary evil, incredibly empowering, or utterly unattainable. Or anything in between those options. It really is a case-by-case and can be dependent on your meds, you lifestyle, the severity of your illness, the type of work, etc. I mean, there are just so many factors involved! It can be kind of overwhelming to talk about. But here we go!

Working while Living with Fibromyalgia

Deciding to Work

Okay, I know this sounds weird. Does anyone really choose to work? Don’t people work out of necessity? Well, yes and no. There are some people, including some with fibromyalgia, who honestly can’t work. Heck yes they would work if they could, but their symptoms are so severe that even minimally active or demanding jobs are too much.

Other people with fibromyalgia have the option to work from home. Honestly, if you ask me, this is pretty ideal. It allows you some flexibility to work around your symptoms while still making an income for yourself and/or your family. Plus, there is less energy exerted in interacting with coworkers and getting ready for work.

If you’re like me, you’re well enough to work an office job. Thanks to my medication, supplements, lifestyle changes, and alternative treatments, I (finally) have my symptoms under control enough to work in an office. This has been about a year in the making, so trust me when I say I’m incredibly grateful. But also trust me when I say that not every day is easy or symptom free. In fact, no days are symptom free. It’s just a matter of being manageable, and that’s where my symptoms are probably 95% of the time these days.

Working while Living with Fibromyalgia

I am always incredibly impressed and inspired by those with fibromyalgia that hold more physically demanding jobs. I know that movement tends to help fibromyalgia symptoms, but for me and my body, a physically demanding job just won’t work. But for others, it works great. Or it’s a necessity. Either way, it’s downright impressive.

But here’s the thing. As with most things, it’s all about listening to your body and understanding what works best for you. Of course, there are other factors involved in deciding to work. It’s about understanding your needs (financially and otherwise), your values, and your abilities.

Decisions to Make Once You Start Work

If you’re able to work, then you know that every single day is about making decisions. And that all starts with making the decision to get out of bed, which to be honest, is sometimes the hardest decision you can make all day. Not only are beds super comfortable and cozy, but when you’re in constant pain, your meds are still making you drowsy, or the fibro fatigue is just way too real, sometimes it may seem impossible to actually get up. So the first thing I do each morning is take account of how I’m actually feeling, instead of letting my meds or mood dictate my actions.

I try to set myself up for early morning success by getting to bed at a reasonable hour. I’m definitely one of those people that needs at least 8 hours of sleep, if not more. If I don’t get enough sleep, I tend to flare and be completely worthless, so I really try to focus on catching those z’s.

Working while Living with Fibromyalgia

Another big part of making sure I feel good enough to work is making decisions based on how I feel or how I know something will make me feel. For example, this evening, my parents invited me to go to dinner with them and a family friend. As nice as that may be, I also know I’m utterly exhausted after working a full day, and the food served at the restaurant would most likely make me feel horrible either tonight or tomorrow. So I made the decision to stay home.

When you start a new job, you also need to consider how you spend your days off. For me, it’s all about recooperation. I try to prioritize rest, not only for my body, but for my brain too. I need to recharge so I can be at my best when I’m working. I’m an introvert, so this often involved quiet time alone, or doing something that brings me some joy. You have to figure out what helps you be your best at work while also letting you live a life you actually enjoy.

One of the biggest decisions anyone with a chronic illness has to make when starting a new job is deciding if/when to tell someone at work about their illness. This is SO dependent on what you’re comfortable with and what the people at your work are like. I tend to be pretty open about my condition, as spreading awareness is incredibly important to me. But not everyone is comfortable sharing their illness with the people in their workplace. Unfortunately, there are some people in this world who do not believe in what they cannot see. They question our motives and our realities. There are some that just can’t understand, or refuse to try. And as wrong as that is, it’s still something we all have to be aware of in our workplaces. So this is a decision that is not only dependent on your openness, but also on the open-mindedness of others. Regardless of what others do, just make sure to do what’s right for you.

Working while Living with Fibromyalgia

Work can be exhausting. Working while living with fibromyalgia can seem impossible. But just like with everything else, it’s all about finding your balance, and figuring out what works best for you. There are a lot of decisions to be made and remade on your journey of working while living with fibromyalgia. But I promise you, you will figure it out. Don’t forget, if you need some help or support, reach out to your friends and loved ones. And you always have a support system here.

 

Pacing with Fibromyalgia

Pacing with Fibromyalgia

I had a few ideas in mind for this week’s blog post. I’ve been thinking about topics like “Travel and Fibro” or “Fibro and Relationships” And don’t get me wrong, I definitely still want to do write posts about those topics. They’re both important when it comes to living your best life with fibromyalgia. But this week, I’m going a little more off-the-cuff and writing about a topic that’s super relevant for me at the moment (and really all the time), and I’m sure for many, if not all, of you. This week I’m talking all about pacing!

So why is it particularly relevant for me right now? Well, I got a new full-time job! Luckily, it’s a desk job with a relatively flexible schedule, but it’s a huge adjustment for me. I went from unemployed, when I was just focusing on taking care of my health and finishing the last couple things to get my Master’s, to 40-50 hour weeks in an office. And that’s a HUGE shift in energy allotment. It’s required me to fully rethink my weekly routine, my activities, my relationships, all of it. It’s required me to start pacing every single day, every single week. And that’s totally fine with me because it’s helped me find balance and feel good most of the time.

Pacing with Fibromyalgia

What is Pacing?

What is pacing anyway? It’s a term I think we’re all familiar with, but maybe not in the context of living with fibromyalgia. I think Donna over at February Stars puts it really well by saying pacing is “doing a little at a time and breaking down tasks so they are simpler”. She’s also right in saying that, while that may seem simple and intuitive, it can be a lot harder than it seems.

I think this is because, before life with fibromyalgia, we’re so used to doing things a certain way, or doing a certain amount in a day, and when we reduce what we do in a day because of fibromyalgia, it may seem like a lot. It may seem like we’re not doing enough or not keeping up. But sometimes, we may still crash and end up in a flare.

I also think this is because we often compare ourselves to the “healthy” world. We hold our standards of productivity at the same level of people who aren’t living with fibromyalgia or other chronic diseases. And as much as we’d like to be normal and like to be treated like we’re healthy, the fact is, we sometimes have to adjust the way we do things to address our physical (and sometimes mental) limitations.

Pacing with Fibromyalgia

The First Steps

For me, and for many others out there, the first steps of figuring out your pace is giving yourself grace. Give yourself permission to do less, to let go. It’s okay to not be as productive as you once were. Your worth is NOT dependent on how much you get done or what you can do. You are worthy simply because you are you. Repeating this notion to yourself over and over again if your struggling with the idea of doing less, or feeling guilty for doing less, can be very helpful. And remember, if you work yourself into a flare, you’re going to be able to do a whole lot less while you recover.

While making sure you’re kind to yourself, allow yourself to listen to your body and mind. Mindfulness is a very powerful and important tool of pacing. It’s resting before getting too tired. It’s knowing when you can keep going. Mindfulness is key to making sure you don’t take it too far, or learning from it if you do. Listening to your body, and honouring what it tells you, is a key part of pacing.

A Few Tips

So that’s really the gist of pacing. It really does seem like a super simple concept, right? But the thing is, it’s SO individual, and every day is going to be different. Overall, however, there are a few ways you can definitely find some success with pacing.

Pacing with Fibromyalgia

  1. Get rid of the word “should”. It’s basically the worst, most guilt-laden word in the English language. It is literally motivation to do things based on the guilt you’d feel if you didn’t. But the thing is, most of those things you “should” be doing aren’t that important. So figure out what is essential and important to you, and prioritize those things. If you feel you’re able to do more once you’ve addressed those things without using all of your energy, prioritize what else serves you and use your energy accordingly. But don’t think you have to get every single thing on your “to-do list” done today, tomorrow, or even this week. Because I guarantee most of it can wait.
  2. Cut out the toxic people/activities. I know, I know. A lot easier said than done, right? Especially when those people are family members, coworkers, or people you have to deal with every day, or those activities are vital for living a functional life. I’m not saying just drop everyone and everything from your life. That would be ridiculous. What I am saying is be aware of how much energy you give to those people/activities. Don’t allow them to take up more than they deserve, because your energy is much too valuable for that. And if you do have to deal with these people/activities, try to prepare so that you can make sure they only take what you give them.
  3. Be patient. This is much easier said than done too, I know. But it’s something else that’s incredibly important. Be patient with the fact that things aren’t getting done as quickly as they used to or you’d like them to. Be patient with yourself when you do end up overdoing it and throw yourself into a flare. It will happen, especially as you start to figure out what works for you. When that does happen, give yourself the time to recover, then try again. Us fibro spoonies are nothing if not resilient, so keep trying and learn from your experiences. You will figure it out and it will get easier! And once you figure it out, you’ll be able to slowly build up to doing more and more without throwing yourself into a flare. So please, be patient. Pacing is worth it. I promise.

Do you have any experience with pacing? Let us know below!

Pacing with Fibromyalgia

Doctors and Fibromyalgia

Doctors and Fibromyalgia

When you have fibromyalgia, doctors can be your best friend or your biggest foe. Having any chronic illness changes your relationship with your doctors. Heck, it makes you meet new ones, ones you never even really wanted to meet in the first place. But alas, we need them. To get our diagnoses, our meds, etc.

So for today’s blog post, I want to talk about this complicated relationship. I want to talk about the fact that for some fibromyalgia patients, this relationship is a blessing. And how for others, it’s a necessary evil. Some fibromyalgia warriors might even feel both ways about their doctors. And that’s just what makes this such a complicated topic.

The Good

I want to start by keeping it positive. I’m big on positivity, as I think it’s an important and empowering coping mechanism. But I also think it’s important to note that there ARE good doctors out there. Loads of them.

Doctors and Fibromyalgia

But what makes a doctor “good”? For me, first and foremost, it’s about listening. Really listening. I want a doctor that is going to actually let me tell them what’s going on with me, with my body, and with my life. A good doctor will allow you to explain your symptoms the best you can, and ask you for clarification if needed.

I think a good doctor runs all the tests he or she can to try to find out what’s going on. They ask questions about your lifestyle, stress level, diet, activity, etc. They do these things to find ways that can potentially help you feel better. If they can’t cure you (like with fibromyalgia), they want to help you find all the methods that help alleviate your pain, discomfort, and other symptoms.

A good doctor doesn’t solely try to accomplish this through prescription medication. They help you find methods that work for you. Whether it’s dietary changes, stress reduction, changes in activity levels,  supplementation, or other alternative treatments, a good doctor will be open to finding symptom management methods that align with you, your symptoms, and your life. Sometimes, this may involve prescription meds. And there’s absolutely nothing wrong with that. But a good doctor will help you find a combination of management strategies and listen to what you need.

The Bad

Unfortunately, a lot of fibromyalgia (and other chronic illness) patients experience some not-so-great doctors. This can be incredibly frustrating, emotional, and disheartening. So now that we’ve covered what you’ll find in a good doctor, I want to cover the bad.

And honestly, I feel weird saying “bad” when referring to doctors. I personally don’t think 99% of “bad” doctors are trying to be bad. I think their intentions are good. But something gets in the way of fulfilling those intentions.

Sometimes, it’s as simple as ignorance. They simply don’t know a lot about our illnesses. Wide acceptance of the validity of a fibromyalgia diagnosis is still a relatively new concept. Annoyingly new. To the point that there are still doctors out there who don’t believe fibromyalgia is real. There are some doctors out there who chalk it up to depression or anxiety. There are others who don’t believe patients when they express how bad the symptoms are.

Doctors and Fibromyalgia

It’s usually not that they’re trying to be bad doctors, it’s just that they aren’t quite there yet. They’ve been rejecting such a disease’s validity for so long, they don’t know how to change. And unfortunately, that makes for a poor patient experience and makes it incredibly difficult to get any help managing the illness and symptoms.

There are other “bad” doctors out there who have a stake in the pharmaceuticals game. They are receiving a kickback for certain medications they prescribe. Now I want to be very clear here. I don’t believe the majority of doctors are this way. I believe the majority of doctors have good intentions, as I mentioned above. Some doctors repeatedly prescribe medications without suggesting other management methods because that’s simply how they were trained.

But I do think there are doctors out there whose judgement has been clouded by the money coming in from prescribing medications. And while medications can be extremely helpful, if you don’t believe they are helping you, and your doctor just keeps prescribing different meds to no avail, you might have a not-so-great doctor.

Other signs of a “bad” doctor are if they make you extremely uncomfortable, are blatantly dismissive or mean, or they make you feel “crazy”. No patient should ever have to deal with a physician that’s anything less than caring, receptive, supportive, and determined.

Doctors and Fibromyalgia

The Challenge

Although the majority of doctors have good intentions and are genuinely good, it an be a challenge to find them! A big part of that is there is truly a shortage of physicians that specialize in treating fibromyalgia. Another reason is that it’s hard to even know where to start. You have to find a general practitioner that you trust to then refer you to a rheumatologist or specialist. And depending on where you live, your closest option may be hours away. Then there’s the stress of long waitlists and limited availability. And finally, when you do actually get to see a doctor, you have to make sure they are someone you can work with.

It can all seem like a bit much. The process can be daunting and ridiculous, even emotional at times. But have faith. Have faith in yourself and your ability to advocate for your needs. Have faith that there ARE good doctors out there. And if yours just happens not to be one of those, have faith in your ability to work through the process of finding a new one, and knowing that you are doing your best for yourself. You got this.

Doctors and Fibromyalgia

7 Things That Can Trigger a Fibromyalgia Flare

7 Things That Can Trigger a Fibromyalgia Flare

We all know that fibromyalgia flares are rough. Heck, I wrote a whole post last week about How to Deal with a Fibromyalgia flare. Because let’s face it, they’re basically the worst.

So this week’s post isn’t going to be how to make flares shorter or easier. Instead, I want to talk about things that actually cause fibro flares. Because if we know what causes them, we can be better equipped to avoid them. There is a bit of a caveat with this post, as there have been with my last few.

I want to make sure we’re all on the same page before I dive into the bulk of this post. This is by no means an exhaustive list of things that trigger fibromyalgia flares. We are all bioindividuals. While some people with fibro have similar triggers, everyone has their unique triggers. If you feel so inclined, I would love if you share what triggers your fibro flares by commenting below. If something in particular on this list is a major trigger for you, or if you just want to share your experiences, please leave a comment! Let’s have a conversation and help each other!

7 Things that Can Trigger a Fibromyalgia Flare

7 Things That Can Trigger a Fibromyalgia Flare

Stress

Honestly, stress is one of my main symptom triggers. Now stress comes in a couple different forms: physical and mental. And obviously there are a variety of ways these can manifest, so I’m going to focus on mental stress here. Busy day? Overwhelmed? People get stressed for a lot of reasons and way too frequently. It’s basically ingrained in our culture. Unfortunately, it seems stress has some pretty intense physical consequences as well.

High stress levels are a pretty common trigger for many fibromyalgia patients. Not only does it cause fatigue and fibro fog, but many patients (including myself) experience increased pain levels after a particularly stressful day or week. Sometimes, it can even leave patients bedridden for a bit. And while stress can’t be avoided, it can be minimized. Try to avoid unnecessary stressful situations and be sure to provide time for rest when you can.

7 Things that Can Trigger a Fibromyalgia Flare

Weather Changes

This was a something I honestly didn’t believe until I experienced it myself. How can changes in the weather affect how someone feels physically? Well there are a lot of ways the weather can cause a flare. First and foremost is temperature changes. Some fibromyalgia patients have difficulty regulating body temperature, so rapidly changing environmental temperatures can wreak havoc. Same goes with temperatures that are too hot or too cold. Even changes in pressure and humidity can affect how your body functions and trigger a flare.

7 Things that Can Trigger a Fibromyalgia Flare

Sensory Overload

Have you ever been at a party or another event and all of a sudden you feel a flare coming on for what seems like no reason? You’re not sure why but all of a sudden you’re hyper-aware of every single sound, smell, light, taste, and feeling. THAT is sensory overload. And because fibromyalgia is technically a central nervous system disease, it can cause your symptoms to flare. Many fibromyalgia patients have experienced increased headaches or migraines, dizzy spells, and other painful symptoms as a result of sensory overload.

7 Things that Can Trigger a Fibromyalgia Flare

Sickness or Injury

I know I can’t be the only one who feels my fibromyalgia symptoms flare any time I get a cold (actually recovering from one right now). As if being sick weren’t hard enough, add in a fibro flare. Who doesn’t need extra achy joints and fatigue when you’re in the midst of a coughing attack, am I right? But in all seriousness, many people with fibromyalgia get pretty severe flare ups when they’re sick with the flu, a cold, or any number of other ailments. The same holds true for injuries such as broken bones or wounds. The belief behind this is that your body has to use precious resources to heal and recover, resources that are usually allocated to functioning semi-normally with fibromyalgia.

7 Things that Can Trigger a Fibromyalgia Flare

Not Enough (or Too Much) Rest

Sleep deprivation is a pretty common symptom of fibromyalgia. But unfortunately, this same sleep deprivation can cause fibromyalgia flares as well. Without adequate time to rest, your body can’t recover from the day, wearing you down and eventually triggering painful and frustrating symptoms. Some people with fibromyalgia actually require more-than-average time for a full night’s sleep to help their body fully recover. That way they can tackle the day ahead comfortably.

Alternatively, too much sleep can also cause problems for fibromyalgia patients. Too much inactivity can make your muscles more sore and your joints stiffer. Oversleeping past your routine sleep time can also throw your body out of whack, causing a flare. So it really is all a balancing act, and learning what your body needs. 7 Things that Can Trigger a Fibromyalgia Flare

Certain Foods

Again, everyone’s body is different. And everyone has different nutritional needs. But certain inflammatory foods, such as refined sugar, gluten, processed foods, caffeine, and alcohol, can often lead to fibromyalgia flares. This one can take some trial and error to figure out, finding what works for your body and what doesn’t. For me, for example, gluten and alcohol are big triggers, both for fibromyalgia and interstitial cystitis. Soy is another. However, I also know people with fibro who do fine with all those foods but can’t handle nightshades. So it’s all about finding what works for you and your body.

7 Things that Can Trigger a Fibromyalgia Flare

Overextending Yourself

I guess this could go under stress, but I think this is an important thing to cover. As people with an invisible illness, we are often held to the same standard as people who are not living with invisible illnesses. As a result, we often think that we should be able to do every single thing we “should” do as apparent members of the healthy world. And don’t get me wrong. I know that sometimes we all end up overdoing it. Sometimes it can’t be helped. However, it’s important for all of us to remember that sometimes we have limits that others do not have. And it’s okay to acknowledge that. It’s okay to say no to things that do not serve you, or will cause a flare. Just remember, by taking care of yourself now, you’ll be better off down the road, which is better for everyone.

7 Things that Can Trigger a Fibromyalgia Flare

9 Tips for Dealing with a Fibromyalgia Flare

9 Tips for Dealing with a Fibromyalgia Flare

Unfortunately, even when you’re managing your fibromyalgia well through lifestyle changes, alternative and conventional treatments, and supplements like FibroAid, you’re still bound to have a flare day every now and then. They’re inevitable. In fact, I’m in the middle of a flare right now. And I’m not going to sugar coat it. It sucks. But you all know that!

I haven’t flared for a few weeks now, which is great, and I owe a good part of that to FibroAid. But this morning I woke up feeling like I hadn’t slept a wink. My entire body was aching, I was fatigued, light-headed, and extremely weak. Some days, if I get up and get moving, I do okay and can function. Today was not one of those days. Instead, getting up and trying to function actually made me feel worse.

So what do you do on flare days like this? You know they are bound to happen. And while there’s not much you can do to keep them at bay forever, there are things you can do to make these hard days a little easier.

9 Tips for Dealing with a Fibromyalgia Flare

How to Make Your Flare Days a Little Easier

1. Give yourself a break

This is probably the hardest thing for me. Our society conditions us to believe that our worth is based on our productivity, and that taking care of ourselves when we need a little extra is a sign of weakness. Well I’m here to tell you that absolutely none of that is true. You are worthy simply because you are you! Taking time to care for yourself, especially in the middle of a fibro flare, is essential. It’s important for your health, for your sanity, and for your happiness. Don’t get too hard on yourself about all the things you cannot do. Focus on what you CAN do. And that is take care of yourself and try to make your flare a little shorter than it otherwise would be.

2. Rest if you can. Take it easy if you can’t.

Whether you’re working or in school, chances are you can’t take a sick day every single time you’re in a flare. If you’re a parent, you don’t get any sick days at all. If you can, rest and recharge. Be sure to take your meds, use any at-home treatments you may have available to you. Listen to your body. You know it better than anyone else. If you can’t rest and recover, take it easy. Don’t over-commit yourself, and know that it’s 100% okay to say no to things that you are not up for or that do not serve you. Most things can be done tomorrow, or the next day, or even the day after that. Be kind to yourself and your body, and take it easy.

9 Tips for Dealing with a Fibromyalgia Flare

3. Don’t be afraid to ask for help.

Asking for help is not a sign of weakness. You don’t have to deal with a flare day alone. It’s okay to ask for help if you need it! If you don’t have the energy to do something, see if someone can help you. If your brain fog is so bad you can’t drive (we’ve all been there), it’s okay to ask for a ride. You will always be better off asking for help, especially in the long run, than you will be trying to do it all yourself.

4. Talk to someone.

As I said above, you are not alone. And you don’t have to face a flare day alone. That’s what your support system is for! If yours isn’t very strong, there are quite a few online communities where you can find people to talk to. If you have access, speak to a counselor or therapist. Whatever you do, talk to someone. Most people are kind and will want to help you in any way they can. You are not a burden for seeking a help or a sounding board to vent to. Heck, you can even contact me if you want. Just head to my personal blog, click on the “contact” tab, and shoot me an email. I’d be more than happy to help! Support is key for getting through any flare a little bit easier.

9 Tips for Dealing with a Fibromyalgia Flare

5. Distract yourself with something that brings you joy.

This one can be hard in the middle of a flare. It’s down right challenging to find joy during fibro flares sometimes, and if you’re someone who is happiest when you’re busy or active, this may be exceptionally hard for you. Hard, but not impossible. Is there a certain TV show that makes you laugh? Watch it (mine is The Simpsons). A book you’re enjoying? Read it. Knitting, drawing, writing, painting, and really any other low-energy activity is perfect for a flare day. My go-to on really bad flare days is listening to podcasts. You don’t even have to open your eyes, but they are a great escape.

6. Get enough sleep.

Fibromyalgia affects sleep patterns. Sleep disturbances is actually one of the main symptoms of fibromyalgia. So getting enough sleep is much easier said than done in the middle of a flare. If you can nap, try to nap. I know sometimes naps can help me reset and minimize my symptoms if I feel a flare coming on. Not a napper? Make sure to give yourself enough time at night for a full night’s sleep, whatever that means for you. For some, it’s 7-8 hours and for others it’s 9-10+. So just do what works best for you. You may need some extra time on either end of your full night’s sleep to either fall asleep or fully wake up during a flare, so make sure to plan for that!

9 Tips for Dealing with a Fibromyalgia Flare

7. Hydrate.

This one should be obvious for just overall health. We all feel better when we’re fully hydrated, and for some reason, this seems to be the first thing to go out the window when we start feeling horrible. But staying hydrated will improve your energy, support overall bodily functions, and may even help clear up the fibro fog a bit! And we know we can all use a little help in all three of those areas!

8. Avoid trigger foods.

Don’t get me wrong. I’m a total comfort eater. When I feel horrible, I either don’t eat because of nausea, or I eat food that makes me feel better emotionally. And while sometimes, that’s okay, it’s not always great for fibromyalgia flares. If you know your trigger foods, try to avoid them or find alternatives. They may cheer you up a bit emotionally, but if they make your symptoms any worse, that would be counterproductive. Don’t know your trigger foods? Talk to your doctor, do a little research, and listen to your body! Here‘s a list to give you some ideas of what could potentially be trigger foods for you, but your body knows best!

9 Tips for Dealing with a Fibromyalgia Flare

9. Prepare if you can.

Obviously, you don’t expect some of your flares. Sometimes, there’s no apparent cause and your body just decides to revolt. But other times, you might be able to prepare. If you have a big event coming up, are traveling, or know there is going to be a lot of stress in your life, you can schedule recovery days for yourself. You can try to make sure you have everything you need on hand to make sure your flare is a little less painful (metaphorically and physically). You can even prepare a little bit for your unexpected flares by making sure you always have certain pain and symptom management tools on hand at all times. It won’t make the flare go away, but it might just make it a little easier.

9 Tips for Dealing with a Fibromyalgia Flare

Exercise and Fibromyalgia

https://fibroaid.net/alternative-treatments-for-fibromyalgia/

If you’re anything like me, when you started experiencing your fibromyalgia symptoms, exercise went right out the door. It’s hard to find the motivation to move when every fiber of your being hurts. Or when the fatigue is just too much. Or when the brain fog makes it hard to tie your shoes. Honestly, any and all of the above make exercise quite the challenge when you have fibromyalgia.

However, most experts and physicians say that exercise is a pivotal part of fibromyalgia treatment. When I spoke to my doctor about things beyond medication that would help alleviate my symptoms, especially my fatigue, his main suggestions was exercise. And honestly, I wasn’t sure where to start. So if you’re in the same boat that I’ve been in, trying to figure out what works for your body in terms of movement, I think you’ll find this post beneficial.

Exercise and Fibromyalgia

Similar to last week’s Alternative Treatments for Fibromyalgia post, I’m going to provide a disclaimer. I am in no way trying to tell you what to do or how you should exercise. I am not a doctor or a medical expert. A lot of exercising with fibromyalgia is trial and error, figuring out what works for you and your body. What I am going to advocate for is moving intuitively, in a way you enjoy and in a way that feels good. I also want to provide a list and explanation of low-impact workouts and exercises that many fibromyalgia patients use on a regular basis to help with their symptoms and overall health.

Exercises for Fibromyalgia

Walking

I personally think walking is underrated. It’s probably one of my favorite forms of exercise, but people often think it’s not intense enough to be a “real workout”. But for us fibromyalgia patients, I think it’s a great way to start moving our bodies. It’s low-impact, flexible, and you can literally do it anywhere. Walk as fast or as slow as you’d like, uphill or on flat land, outside or on a treadmill. Getting some steps in is healthy for everyone and it can be incredibly therapeutic. Walking is great for warming and loosening up your tight and sore muscles, and better yet, it’s free! My favorite way to walk is with my dog, on easy trails, while listening to podcasts. It’s one of my favorite ways to exercise!

Exercise and Fibromyalgia

Yoga

If you’re anything like me, you’ve seen posts all over Pinterest and the rest of the Internet about how popular and effective yoga is. Honestly, yoga is another one of my favorite ways to exercise. If you’ve never done yoga, there are many different ways to practice, but it all comes back to moving with your breath. There are fast and slow classes, classes that are intense and others that are more restorative. Before I developed fibromyalgia symptoms, I was absolutely loved power vinyasa classes. They are a little more intense, building muscle and getting your heart racing. If you’re just getting back into movement, I would suggest sticking with restorative classes such as yin yoga. Don’t want to spend the money for a class? Good news! There are a ton of free yoga classes on YouTube of varying lengths and intensity. Regardless of where you’re doing yoga, don’t forget that resting and modification of poses is more than okay! Just listen to your body!

Exercise and Fibromyalgia

Swimming

I’m going to be honest with you. I’m not much of a swimmer. I’ve never been very good at it and it’s just not my favorite way to move. However, I know it’s a wonderful way to exercise, especially for people with fibromyalgia! It’s low-impact and a little goes a long way. Swimming has been shown to reduce fibromyalgia pain as effectively, if not more so, than walking. The only downside? You need access to a pool! For many, though, this is not an issue, as many community centers and gyms have pools available for lap swimming and/or free swim.

Exercise and Fibromyalgia

Cycling

Cycling is another low-impact form of exercise that is commonly used by fibromyalgia patients. And it’s another one at which I don’t have much skill. Don’t get me wrong, I can stay upright and all, but it’s just never really been my thing. However, I do recognize how amazing cycling can be as an exercise, especially now with a fibromyalgia diagnosis. Personally, I prefer indoor cycling, even recumbent cycling, as it’s much easier on my lower back, but you can still get the muscle-building and cardio benefits. If outdoor cycling is more your style, try going out for a nice, leisurely ride with your family or friends. It’s a great way to improve both your mental health and your pain levels.

Exercise and Fibromyalgia

Resistance or Weight Training

Okay this is honestly one of my favorite ways to work out. It always has been. There’s just something really fun and empowering about lifting or moving heavy things around. I know it’s definitely not for everyone, and that’s more than okay. Weight lifting is great for fibromyalgia patients because it allows you to strengthen, warm, stretch, and build muscle without being too jarring. However, be careful not to overdo it and make sure you stretch regularly. As fibromyalgia causes tense and sore muscles, make sure to warm up and cool down properly, and listen to your body!

Exercise and Fibromyalgia

A Few Tips for Exercising with Fibromyalgia

In my research for this post, I came across a great article from the University of Florida Center for Musculoskeletal Pain Research providing some great tips for exercising with fibromyalgia. Again, I want to reiterate that I am by no means telling how to exercise, or even that you need to. I am simply relaying the potential benefits of exercise for fibromyalgia patients. These tips from the University of Florida can help make your exercise journey that much more enjoyable.

  • Use a total fitness program including exercises that improve cardiovascular fitness, muscle strenght, and joint range of motion.
  • Choose activities that you enjoy doing, such as walking, swimming, bicycling, dancing and resistance training.
  • You can exercise during a flare, but reduce the amount of exercise by half, decrease exercise time, resistance, and intensity.
  • Start slowly, doing 5 to 10 min of cardiovascular exercise and using minimal resistance for strength training exercises.
  • Warm up and cool down at every exercise session.
  • Progress slowly and methodically at your own pace.
  • Employ proper technique, which is critical to safe and effective exercise.
  • Concentrate on maintaining good posture while exercising.
  • Exercise should be fun and social; try to exercise with a friend.
  • Use moderate intensity, which is sufficient to improve cardiovascular fitness, muscle strenght and flexibility.
  • Perform exercises regularly: cardiovascular exercise: 3 to 5 times per week, strenght training: 2 to 3 times per week.
  • Avoid too much exercise – you should feel energized, not exhausted, at the end of an exercise session.

You can find the rest of the article here.

Didn’t see your favorite form of exercise on the list? Comment below and let us know how you love to move! Exercise and Fibromyalgia

 

Alternative Treatments for Fibromyalgia

Alternative Treatments for Fibromyalgia

Whether you’ve been living with fibromyalgia for a while or are newly diagnosed, I’m sure you’ve heard of many different treatments for the chronic illness. I’m sure you’ve probably tried a few of them, too! But because there is so much information out there on different treatments for fibromyalgia, I wanted to touch on a few of them here.

Before I dive into this post about different alternative treatments for fibromyalgia, I want to say something. I am not a medical expert. The point of this post is not to tell you what you should or should not do, but rather shed some light on alternatives that you may not know are out there. This is also not an all-inclusive list. I know there are so many alternatives and different things work for different people. One thing I want to do here is share some ideas about what may help you manage your fibromyalgia symptoms. We all know, unfortunately, there is no cure. But there may be some treatments out there you’ve never heard of or considered to help you live your best life, despite your illness.

Alternative Treatments for Fibromyalgia

If there’s a treatment you want to share that I don’t cover in this post, please leave a comment below so your fellow fibro-warriors can look into it for themselves!

Alternative Fibromyalgia Treatments

Acupuncture & Cupping

I don’t know about you, but acupuncture and cupping are some of the first things I think of when I hear “alternative treatments”. Used for centuries, acupuncture and cupping have become much more mainstream in recent years. Those interested in trying more holistic methods of treating fibromyalgia have been drawn to acupuncture and cupping as these practices are often used in tandem to stimulate the central nervous system and increasing blood flow. These effects are said to dull pain and loosen tight or sore muscles, as well as produce anti-inflammatory effects. If acupuncture and/or cupping is something you’re interested in trying to help treat your fibromyalgia, communication with your practitioner is key, just as with a conventional doctor! To find out more about acupuncture as a treatment for fibromyalgia, check out this article.

Alternative Treatments for Fibromyalgia

Dietary Changes and Supplements

At FibroAid, we obviously believe in the power of nutrition in helping manage fibromyalgia. That’s the whole reason FibroAid was created, to ensure optimal nutrition to help manage your symptoms and fill in the nutritional gaps commonly seen in fibro patients. While there is no specific dietary protocol for fibromyalgia, there are nutritional therapies available depending on your symptoms. These include increasing your consumption of high-fiber foods and decreasing your consumption of foods that produce gas and bloating. Additionally, it’s recommended to stay hydrated, which is good advice for everyone! Other dietary protocols utilized by fibromyalgia patients to manage their symptoms include vegetarian/vegan diets, intermittent fasting, raw food diets, gluten-free diets, and many others.

Dietary supplementation is also common among fibro patients. A wide variety of supplements are often recommended for managing fibromyalgia symptoms including, but not limited to, chlorella, linoleic acid, vitamin D3, vitamin B12, probiotics, and anti-inflammatory supplements like turmeric. Some patients also use adaptogenic, tonic, and ayurvedic herbs as part of their supplementation regimen.

Alternative Treatments for Fibromyalgia

In order to figure out the right protocol for you, please speak with your doctor or medical professional. And remember, the diet and supplements that work for someone else, may not work for you! So please, listen to your body!

Cryotherapy

So I’m not going to lie. This was an alternative treatment I’d never thought of for fibro before researching for this post. But now, I’m definitely curious! So what is cryotherapy?

Whole body cryotherapy is a medical treatment in which  you step into a chamber that is between −100° C and −140° C (which is −148° F to −220° F) for about three to four minutes, wearing protective gloves, shoes, and an ear-covering headband. The idea behind this is to reduce inflammation and pain, as well as provide a host of other health benefits. Look at just about every mainstream article, and you’ll see claims of weight loss, improved muscle soreness, increased collagen production, and so many other things.

Alternative Treatments for Fibromyalgia

There aren’t really any peer-reviewed studies on cryotherapy for fibromyalgia yet, but if it’s something you’re interested in trying, I’m sure you can find a cryotherapy clinic nearby, as it’s becoming increasingly popular these days. And there is some anecdotal evidence that it can be effective for pain management. If this is something you choose to try, please make sure you research the risks, as cryotherapy can potentially worsen conditions such as high blood pressure, heart and lung disease, poor circulation, and neuropathy.

Stem Cells

I know, I know. Stem cells can be pretty controversial. But the research on stem cells for treating a variety of conditions is pretty darn positive. Right now in the US, stem cells are not widely used in the US, but clinic trials are underway. And other countries have been using adult (i.e. ethically sourced) stem cells successfully for years to treat a multitude of issues. Stem cells, specifically intravenous stem cells, have been shown to target and reduce inflammation and support the healing of damaged tissues. They are now being used in places like Panama and Thailand to treat fibromyalgia and chronic fatigue syndrome. If this is something you’re interested in trying, but live in a country where it is illegal or not widely available, stem cell therapy can be very challenging to receive, but not impossible. There is anecdotal evidence that stem cells can help at least reduce the symptoms of fibromyalgia. So if you have the means, this may be an option for you.

Alternative Treatments for Fibromyalgia

Breathing Exercises

Have you ever heard of the Iceman? There is a Dutch man named Wim Hof who developed a method of dealing with environmental, physical, and mental stresses in a way that is considered “superhuman”. The Wim Hof Method has been, and is still being, researched by doctors and scientists alike to determine its efficacy, and to see if it was a hoax. So far, the Wim Hof Method seems like a legitimate way to increase energy, improve sleep, improve recovery time, and support a stronger immune system, among other claims. One of the three pillars of the Wim Hof Method is breathing exercises.

Well breathing exercises are also as an alternative treatment for fibromyalgia. There hasn’t been a lot of clinical or peer-reviewed research on breathing exercises for fibromyalgia, but patients have reported lower pain levels, improved pain thresholds, and improved fatigue. While this alternative treatment hasn’t been shown to completely alleviate fibromyalgia symptoms, patients have reported symptoms improved to a manageable and functional level. The best part about breathing exercises as a method of managing fibro is the cost. With some training, breathing exercises can be performed on your own at home.

Alternative Treatments for Fibromyalgia

This is by no means an exhaustive list of alternative treatments for fibromyalgia. If there is one in particular that you’d like me to cover or just want others to be aware of, please comment below! If you’ve had experience with any of these alternative methods, I’d love to hear about that too! Please remember, I am not a doctor and am in no way trying to tell you how to treat your fibromyalgia. I’m just sharing some information on treatment options not always discussed in conventional medicine in case any of you are interested in trying an alternative. But as always, please consult a medical professional when making health care decisions!