What is Fibromyalgia Anyway???

The Studies Continue

Sometimes, when people ask me what fibromyalgia is I draw a blank. I find myself attempt to filter through a plethora of information. Where do I even begin!? The purpose of this post is to help both of us make sense of a very complex and frustrating disorder that can be understood; mainly for ourselves.

Not only is fibromyalgia complex; it is also very difficult to comprehend. Scientists know it affects the nervous system, so as a result, has the potential to affect almost every area of the body. There are multiple dysfunctions occurring in the body due to a dysregulated nervous system. What is also dysregulated, is how the body and the brain process pain and other types of stimuli. Those of us with this insensible condition experience pain without an obvious cause that can travel throughout the body quite spontaneously.

Scientific studies prove evidence of fibromyalgia by explaining their findings using complicated medical terms such as neurotransmitter dysregulation, nociceptors, mitochondrial dysfunction, central nervous system immune cells, cytokines, microglial cells, and more! As well, brain scans of fibromyalgia patients reveal a very different picture than those of healthy people. More specifically, these differences are found in the amygdala, hippocampus, and brain stem. No wonder fibromyalgia is so complicated and we have trouble understanding what is happening to our bodies!

In simple terms, cells within our nervous systems are sending too many messages to our brains. These messages or signals are processed by a chemical called serotonin. We are low in serotonin and other chemicals, so the brain becomes overwhelmed and can not process these signals. We also have substances in our brain that are amplified by our senses (light, noise, odour,smell, taste). The abnormal levels of substances and hormones in our bodies and brains create a highly sensitive and overstimulated environment. It is no wonder we need to wear sunglasses at the grocery store, avoid walking by a perfume shop, and cringe at the sound of a yapping dog!

To make fibromyalgia even more complex, science proves we have inflammation in our bodies and in our central nervous system. The central nervous system (CNS) is made up of the nerves in the spinal cord and the brain. The immune molecules called chemokines that are found in the CNS are high in those of us with fibromyalgia. Also, molecules from the immune system, called cytokines are high, therefore; our immune systems are not regulated.

To summarize, we are managing very widespread dysfunction in our bodies and a brain that is unable to process the mayhem of these dysfunctional systems. Our bodies are constantly fighting to be homeostatic, which is an incredible amount of work! Is it any wonder we’re fatigued? Are things starting to make some sense?

I know that doing the research required before writing this post helped me recognize some of the confusion behind this unpredictable and relentless condition. I hope it has helped you too.

Please feel free to leave a comment. If you have any questions or would like me to elaborate on anything, please don’t hesitate to ask. Furthermore, if there are any related topics you would like to see posts on, please do let me know.

Until next time,

Suzy

When Will Society Learn?

I am a strong supporter and advocate to anyone who represents a vulnerable population. I worked in the social service sector for 20 years before I was no longer able to, so I feel helping others who do not have a voice or are not being heard is really important. I was once an advocate for those who had developmental, psychological, and physical disabilities.

I did not feel many health professionals took these clients seriously. I also sensed these professionals were extremely uncomfortable having to provide care to these individuals. I witnessed many times where someone in distress and displaying unusual behaviours was disregarded. Rather than considering what the physical issue is, it is assumed the individual has a conduct disorder. Unfortunately, some clients do have behaviour issues, so any medical concern is connected to poor conduct rather than being genuinely ill. Too often these ignored concerns later end up in an emergency visit to the hospital. Frequently, this ended in emergency surgery. If the problem had been dealt with initially, the ending would look very different.

I have spoken with some fantastic doctors that listen and take concerns seriously. I think there are some wonderful health care professionals and I do not want to stereotype based on my experiences. It is just a fact that over 20 years I witnessed some very unethical practices.

If you take a look back in history, people sick with multiple sclerosis were labelled as crazy. This was before the MRI machine was developed. These people were labelled as hysterical and sent to live in psychiatric institutions. Those with epilepsy received the same treatment also. Common words to describe these patients were neurotic, crazy, and delusional. Now that the technology is available, it has since been proven these are both neurological diseases. Can you imagine having to be in that patient’s shoes? It is horrendous.

What I find just as disgraceful, is that society hasn’t learned from its past mistakes. Once there is an illness that some professionals do not understand or believe in , then it just doesn’t exist! Many of those who are considered part of the vulnerable community are not getting the proper attention. This is not just limited to the population I supported. It’s happening everywhere!

I believe much more awareness still needs to be spread. So many people have not even come close to having evolved from the old mentality. It’s like the child who closes his eyes hoping you will go away. Guess what? I’m still here!

It’s sad much of society can’t learn from past mistakes and behaviours. This is not a battle one person can fight on their own. Even if this post resonated with one person, I have made an impact.

Until next time,

Suzy

Controversial Diets – What Can I Eat?

In our society, there is so much emphasis put on what foods and diets are the best for our bodies. It makes it very difficult for people to know what to eat, what “diet”to follow, if calories matter and whether supplements should be taken. This is just the tip of the iceberg. We get lost in this plethora of information trying to decipher which medical or nutrition expert is guiding us in the right direction.

What we thought we were doing right for our bodies we are being told is all wrong. Those who believe in high protein diets suggest only certain low sugar fruits and vegetables be consumed. We were taught eating bananas was good for us because they provided our bodies with essential nutrients like fibre and potassium. According to some experts, eating this fruit is not good for our bodies because of its natural occurring sugars. Instead, the recommendation is to eat a lot of protein sources such as dairy, meat, and eggs.

On the flip side, many holistic practitioners would argue eating a plant based diet is what is best for our systems. They would discourage the above mentioned protein sources and encourage all types of fruits and vegetables. It would not be suggested to eat meat or dairy unless it was organic. Some experts believe we should not eat anything that comes from an animal and only consume plant based proteins.

Unfortunately, there are so many differing expert opinions on what is considered healthy eating that people are overwhelmed with advice. It seems as though we have allowed all of this information , in many cases, misinformation to allow us to forget about the basics of nutrition. Take a look at the Canada Food Guide. For those of you in the USA, I’m sure your guide is very similar. Is there anywhere in those guides discouraging anyone from eating a variety of fruits and vegetables? Of course not.

I believe different diets aka nutrition plans (I dislike the word diet) can be beneficial in some circumstances. For example, I follow a low FODMAP diet and anti-inflammatory to help manage IBS, fibromyalgia, and arthritis. People with chronic illnesses or autoimmune diseases can greatly benefit from specialized nutrition plans. All of us, whether chronically ill or not, need to be listening to what our bodies need for nutrition. Do you need protein from meat or natural sugars from fruit? Your body will tell you better than the latest fad diet.

It seems as though our society is still so preoccupied with body image. Everywhere you look there is a stick thin, air brushed model displaying the newest style. We are constantly comparing ourselves to others, hence our western culture obsession with dieting. When we finally become comfortable in our own bodies it won’t matter what the “experts” recommend. Your body and intuition will speak to you if you are prepared to listen.

I hope you have enjoyed this reading and welcome you to leave any comments or questions. I love hearing from you!!!

Until next time,

Suzy

Eggs for Dinner Tonight? Try Shakshuka

If you read my last post, you know I’m a huge fan of eggs. I promised I would be posting an egg recipe soon, so I wanted to share a dish that is new to my collection. I recently found a recipe for a middle eastern dish known as Shakshuka. It’s suitable for any time of day, requires little time to prepare, and tastes fantastic! I hope you will enjoy it as much as I did!

Ingredients

1 tbsp olive oil, 1/4 cup green onion, 1 tbsp garlic oil, 4 cups diced tomatoes, 2 tbsp tomato paste, 1 tsp cumin, 1 tsp turmeric, 1 tsp paprika, sea salt, pepper, 6 eggs, and 1 tbsp fresh parsley for garnish.

Instructions

Crack eggs over tomato mixture, spacing evenly. I space 5 eggs around the outer edge of the pan and one in the center. Cover and simmer 10-12 minutes. Keep an eye on the sauce to be sure the sauce does not reduce too much. Garnish with parsley.

Heat a large skillet on medium. Warm olive oil and add green onion, sautéing for 3-4 minutes. Add tomatoes, paste, and garlic oil to pan, stirring well. Add spices and simmer over medium heat for 5-7 minutes. Add salt and pepper to taste. Optional: add a pinch of sugar for a sweeter sauce.

Enjoy! I hope this recipe was a success for you and your family! You may like this recipe with roasted potatoes and rosemary. I know I did 🙂

Please note: This recipe was modified to accommodate those following a low FODMAP diet. Please feel free to substitute ingredients and experiment as you wish. I’d love to hear your thoughts on the recipe!

Until next time,

Suzy

Food For Fibromyalgia – Why Are Eggs So Beneficial?

I absolutely love eggs. It would take an awful lot for me to get tired of eating them. I eat eggs daily, generally speaking. I crave them!

I take such an interest in health and nutrition, so a long time ago I decided I needed to learn about their benefits. As it turns out, there are several reasons why it’s important to include eggs in your diet.

1) Eggs are a great source of protein. One medium egg contains 8 grams of protein. More than half of the protein is found in the egg white. Eggs are a complete source of protein because they contain 9 essentials amino acids. They are an ideal protein source to have at breakfast as the high protein content makes us feel satisfied and for longer.

2) Eggs are full of nutrients. Two of these nutrients, betaine and choline, promote heart health. Eggs are a great source of vitamin D. As we age, I feel this is really important to note. They are also rich sources of the following: selenium, lecithin, zinc, iron, copper, vitamin d, B6, B12, A, D, E, and K.

3) Egg yolks have many benefits. It contains protein, fat-soluble vitamins and essential fatty acids. The cholesterol found in eggs is not something to be overly concerned about, unless your doctor has told you otherwise for particular reasons in regards to your health. The cholesterol in the yolk has much less effect on our cholesterol levels than the saturated fat in our diets. Monounsaturated fats are a much healthier alternative.

4) I love how versatile eggs are. There are so many different ways you can eat eggs and recipes galore on the internet. I still enjoy finding recipes in cookbooks, so you could try the old fashioned route too. Eggs are awesome for baking also. They work as a great binder and add moisture to the recipe. If you ever run out of eggs when you are baking, use 1/4 cup of mayonnaise for every egg you are missing. You will not taste the mayonnaise, but you will love the moisture.

Stay tuned for my next post where I will share one of my delicious egg recipes!

Until next time,

Suzy

Finding Relief with Low FODMAP Food

Photo by Abhijit Mulye on Pexels.com

I began having serious digestive issues about 14 years ago. I started noticing foods that I never had an issue with began giving me a lot of discomfort after eating. I spent about 5 years trying different eating programs (I very much dislike the word diet), supplements, and holistic cleanses. I never seemed to get relief for an extended period of time. I also kept a food journal, but despite this, I could not seem to narrow down what foods I was reacting to. It was a constant guessing game. Was it the chicken that didn’t agree with me or the spinach? I remember being very frustrated and thinking, these foods did not disagree with me 3 days ago, so why now!? Little did I know that the garlic marinade I added to the chicken that evening was upsetting my system. How would I know that? I would not have guessed in a million years.
I constantly dealt with cramping, nausea, and abdominal pain to name a few symptoms. When I went to see the nurse about my concern, I did not feel as though I was being taken very seriously. There was a shortage of doctor’s in my area, so I was seen by a nurse practitioner. She looked at me like I was delusional. I finally convinced her to refer me to the gastroenterology clinic. She didn’t think it was necessary and tried to deter me from following through with this by indicating it would be difficult for her to present a case for me to be seen by a specialist. This nurse insisted that because I seemed to be functioning “fairly” normally and I was not presenting serious symptoms that indicated I required urgent care, my request did not seem necessary at the time.
I insisted she put the referral through, even though presenting the case might be “difficult” for her. I did end up being seen by a gastric specialist without hesitation. Needless to say, I never went back to this nurse practitioner again. I filed a complaint, which I am hopeful was taken seriously. I have reached a point in my life, where I have zero tolerance for unprofessional health care providers. I may sound harsh, but I find if I don’t take this stance and be a fierce advocate for myself, who knows where I’d be?
The good news is I finally figured out what was wrong once I had my appointment with the specialist. I was diagnosed with Irritable Bowel Syndrome (IBS). The gastroenterologist also referred me to a dietician. I was able to get an appointment quickly with a very helpful woman who taught me all about FODMAP’s.


FODMAP is an acronym that stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols. They are carbohydrates that are poorly digested in those of us with IBS. Rather than these carbs being absorbed in the bloodstream they reach the part of the intestines where bacteria live.
The common FODMAP groups are as follows:
1) Fructose – found in fruits, vegetables, and most added sugars
2) Lactose – found in dairy
3) Fructans – found in grains such as wheat, rye, and barley
4) Galactans – found in legumes
5) Polyols – found in sugar alcohols (ex. sorbitol), fruits, vegetables, and are used as sweeteners

There are foods within each of these categories that are low, medium, and high in FODMAP. You may react to some groups and not others. For example, it may only be lactose and fructans you can not tolerate. Fortunately, not everyone is intolerant of each group. I am a person who is intolerant to high FODMAP foods in each category; however, there are still many foods I can enjoy. I had to give up watermelon because it is high in fructose, but I can still enjoy cantaloupe as it is lower in this category, and in my opinion, more flavourful than watermelon.

You definitely want to work with a dietician or other provider who specialises in this eating program. There is definitely a lot of information to absorb and having some professional guidance to help you learn about FODMAP planning will make life much easier for you. Facebook also has some great support groups that are overseen by registered dieticians. I think this fantastic because you know the information you are being given has been confirmed by a knowledgeable professional. The Monash app is also a helpful tool that tells you the FODMAP content of foods. You may want to download it on your phone.

I was so relieved after I learned about the FODMAP diet. It helped me significantly. Remember, although I may be ultra sensitive and intolerant to each carbohydrate group, this does not mean you will be. We are all very different and not everyone has a severe case of this syndrome. If you have fibromyalgia, chances are good you are extra sensitive and can relate to what I am saying. If you don’t have fibromyalgia or another chronic illness that affects your digestive system, your IBS may be less severe. I developed IBS about 12 years before I began having fibromyalgia symptoms and since my fibro diagnosis I have noticed a worsening of IBS symptoms. I belive there is a strong link.

IBS can seriously reduce the quality of your life; there is not doubt. With proper nutrition and education, the quality of your life does not have to be compromised. If you have recently learned you have IBS or suspect you may have IBS, please see your dietician or other HC provider for more information about the FODMAP diet and how it could help you. I am confident you will not regret it.

Until next time,

Suzy

Morning Yoga

Photo by Cedric Lim on Pexels.com

Hi again 🙂 Thank you for being here.

Since lately, I have been on the topic of the importance of a morning routine, I thought I would share with you how I feel yoga is most beneficial for me during this time of day.
I have always really enjoyed doing hot yoga, but for health reasons going to the studio to take a class was not possible.
More recently, I decided to try doing yoga at home in my computer room with a plugged in space heater. This allows the room to get nice and warm, but not too hot. I suggest turning the heater on for 10-15 minutes and closing the door before you decide to start your session. Naturally, I am able to stretch much better if the room has a had a chance to warm up a bit. If you have fibromyalgia or another chronic illness, you likely understand how temperature sensitivity can have a negative impact on your body. You can control the temperature of the room to whatever suits you best. All you need is a yoga mat, a yoga video, and a bottle of water. Straps and blocks are also handy to have, but they really aren’t necessary.

You Tube has a plethora of yoga videos from beginner to advanced. You can also find a range of sessions varying in length from under 10 minutes to over an hour. It really depends on how your body is feeling and what you feel is manageable. You can tailor the practice to suit you. You don’t necessarily need to follow the instructor’s lead perfectly. It’s your workout. Do what works for you. Just start with something; no matter how small. It is still an accomplishment.

Why do yoga in the morning?
I find yoga particularly beneficial in the morning because this is often when I feel the most tight and sore. The habit of doing this practice a few mornings a week helps to manage my chronic pain throughout the day. Yoga, like other forms of exercise, can be quite energising.
You may find you are able to cut back on your caffeine consumption by implementing this practice in your day as well. As a side note, (I don’t think the point I am about to make is in any way related to my yoga practice) lately I can not generally tolerate more than a cup of coffee. Sometimes I won’t even be able to finish it. This drink can suddenly turn from delicious to disgusting! I don’t expect this to make sense unless you have very unusual taste buds like I do. I think this might be one of those annoying particularities only a person who lives with fibromyalgia understands. I suppose this is just a blessing in disguise anyways.
In terms of fuel, I generally have some fruit and/or half of my breakfast smoothie before doing a yoga session. I don’t like to exercise on an empty stomach. Also, I feel as though the poses require a lot of focus and I don’t think I would have the coordination or strength to attempt this on an empty stomach. This brings to mind another reason you may want to do yoga; it helps you to develop better concentration. Feeling strong, flexible, focused, happier or whatever trait it is you want to improve on – you may find it in this daily practise.
It seems as though people are always looking for a new way to reduce stress and recharge. There is so much talk about the benefits of meditation and practising mindfulness and gratitude. If you were asked to do all of these separately, it may seem a little overwhelming. You may not know where to start, when to find time, or even remember to make these benefits a habit.
In your guided yoga practice, all of these aspects are covered. Not only will you have used the tools mentioned to help you reduce stress, but you will be setting yourself up for a better day.
Establishing a routine is important. Not only does it set the tone for the remainder of the day, but it gives us some type of structure. Especially now, during this surreal pandemic,
it is far too easy to become lost and disconnected. Take full advantage of your coping strategies. I hope this post has helped you find one more outlet to add to your list.
Please feel free to leave me a message with any comments or questions.
Stay safe and take care 🙂

Until next time,

Suzy



Morning Nutrients for Fibromyalgia

Photo by Jacqueline Howell on Pexels.com

In my last post I gave you my recipe for the smoothie I’ve been drinking lately for breakfast. It may not look appealing or taste anything like your typical breakfast smoothie, but it improves my symptoms and is packed with vitamins and minerals.

For those of you who did not read my last post, this very simple yet nutrient packed smoothie is made up of spinach, ginger, parsley, avocado, an egg, a banana and almond milk (or water if you prefer an even lighter drink). I personally prefer making it with water most days.

I wanted to talk to you a bit more about why I chose the smoothie ingredients I did, besides it being so easily tolerated on my digestive system.

Spinach
This vegetable is extremely nutrient rich and is full of vitamins, folic acid, iron, and calcium (Gunnar, 2019). I always seem to be running low in iron, so eating spinach everyday is a must! I have read that folic acid is a very important supplement for fibro fighters and many health care professionals recommend taking it daily. I would prefer to load up on spinach rather than have another pill to swallow.

Ginger
Ginger is very helpful in reducing nausea. I knew it came well recommended for travel nausea and managing flu symptoms. This was the main reason I started using ginger everyday. I also knew it was incredibly healthy with powerful anti-inflammatory and antioxidant benefits. Knowing this about ginger, I wanted to incorporate it in my daily diet, rather than just using it when I felt ill. Ginger also helps with chronic indigestion (Leech, 2017). I have IBS and it can be relentless some days despite healthy eating and following a low FODMAP diet. Some days it doesn’t seem like my system agrees with much of anything. I find a couple of grated tablespoons of fresh ginger in a morning smoothie can help with stomach upset a lot! Last, but not least, ginger contains a substance called gingerol. Gingerol is known to help lower the risk of infections (Leech, 2019). For people with fibromyalgia, susceptibility to infection can be high. I always have fresh ginger on hand. I even carry ginger chews in my purse in case I start to feel nauseous while I am away from home. Ginger is so versatile and complements so many dishes. I would highly recommend experimenting with it if you do not already.

Parsley
I love the fresh flavour of parsley. Just a small amount can enhance the flavour of any dish. Besides tasting fresh and wonderful, it has antioxidant properties Parsley is also loaded with Vitamin C, which is important for your immune system and your heart health (Enloe, 2019). I am always trying to find ways to strengthen my system as I tend to get chronic infections in my urinary tract. I am sure many of you reading this can relate. On that note, I came across some interesting information about how eating parsley can help your kidney health. Parsley has been proven to help regulate urinary pH and reduce blood pressure. In turn, this may help keep the kidneys healthy and lower the risk of stones (Enloe, 2019). Needless to say, you will always fresh parsley in my fridge.

Eggs
This super food is one of my favourite forms of protein. It doesn’t matter how they are cooked, they are delicious! Full of antioxidants, protein, vitamins, minerals, and nutrients (Gunnar, 2019), eating eggs are a great way to start the days. If you don’t like the idea of putting a raw egg in your shake like I do, you could add nut butter or hemp hearts to your drink as an alternative protein source.

Avocado
I really enjoy avocados, but can only tolerate about an 8th of an avocado due to IBS. Avocados have the ability to increase the nutrient value of other plant foods in your diet. By including a healthy fat source to the other ingredients in the smoothie, you are increasing the nutritious value of your breakfast drink. If you leave the avocado out of the smoothie, some of the plant nutrient will go to waste (Gunnars, 2018).

Bananas
Bananas contain many healthy vitamins and nutrients, including fibre. Bananas are famous for being high in potassium and are also known to be helpful in maintaining a healthy blood sugar level (Bjarnadottir, 2018). I find bananas are very filling, which is part of the reason I like to add them to my shake in the morning. Make sure you choose a ripe banana to add to your smoothie to manage your IBS. Your stomach will thank you for it later.

Almond Milk
I use almond milk because I can not tolerate dairy. I also really like the flavour of almond milk. Plain almond milk is low in calories and sugar. It is a natural source of vitamin E which is an antioxidant that fights inflammation in your body. Many brands of almond milk will fortify their product with calcium and vitamin D (Mandl, 2017). What I also really like about is that it is cheaper to buy than regular milk where I live.

I hope you have found this post helpful. Please remember I am not a health care professional or dietitian. I am a person who has a special interest in nutrition and taking steps towards managing illness the best I can. If you have any suggestions or comments lease feel free to leave me a comment.

Until next time,

Suzy

How to get your morning nutrients when you have no appetite

Photo by amirali beigi on Pexels.com

Mornings can be my most difficult time of day. It’s been a challenge trying to establish a routine that works despite pain, fatigue, dizziness, and the host of other flu like symptoms that describe how I feel in the morning.

Having a meal is the last thing I want to do shortly after getting out of bed. My appetite is generally poor until the afternoon, but waiting this long to eat is not going to make me feel any better either. Have you ever felt as though you know your body needs nutrients, but you can’t imagine what you can actually consume that you might be able to tolerate? Do you ever feel as though food just doesn’t taste right?

Smoothies are likely one of the most popular breakfast foods that those of us who lack an appetite are drawn towards. My problem is that the smoothie can’t be too thick or heavy on the stomach. Certain flavours and smells are intolerable. The smoothie has to have some fresh flavours, but not too many. Certain combinations do not sit well either. I love ginger, but it can only be mixed with certain ingredients. If you didn’t know about all of the food sensitivities that accompany fibromyalgia you’d think I sound like an entitled spoiled brat. Lol

I found a smoothie (for now at least) that I love the taste of. It is just the right combination of freshness and light flavour (without being boring) I can tolerate. I’d like to share it with you in the hopes that it will make you feel better as well.

I use the following ingredients:

2-3 cups of spinach
1/4 cup of chopped parsley
2 tablespoons of grated ginger
I small ripe banana
1 cup of almond milk
1/8 slice of avocado
water can be added after if you prefer a lighter consistency.

P.S. All of my recipes are IBS friendly 🙂


Enjoy!

I hope this smoothie offers you some energy and digestive relief.

Until next time,

Suzy



I

What I Wish I Knew When I Was Diagnosed with Fibromyalgia

Photo by Grafixart_photo Samir BELHAMRA on Pexels.com

Thank you for visiting! My purpose is to share my experience living with fibromyalgia and what I have found helpful in managing this unpredictable condition.

When I was first diganosed in January 2019, I remember feeling a great sense of relief. Relief of finally understanding why I had developed so many seemingly unrelated symptoms. I also felt relief because I could begin researching this complex condition and make steps towards healing. Little did I know that if this illness was not very well managed, the symptoms could easily spiral downwards. I also learned that living with fibromyalgia was not going to be as simple for me as doing enough research to determine how I could heal. I have found this journey to be much more complicated than that. One of my learning curves was understanding how to manage this condition in an attempt to minimize the debilitating symptoms. I also had to learn that despite my many efforts to manage the many features fibromyalgia presents, this illness is relentless and I was going to have to find a way to accept this new life.

There is so much I wish I had known when I first learned I had fibromyalgia. Whether you have been recently diagnosed or are a long term, strong-willed warrior who needs a gentle reminder, I hope the following information will be helpful for you.

  1. Pace Yourself

Pacing was a foreign word to me until recently. I have always lived a very active lifestyle. After work and on my time off, my hobbies involved cycling, hot yoga, hiking, jogging, and long walks in nature with my two dogs. I was a very high energy person and needing to pace myself was never anything I had to be concerned with under ordinary circumstances. Prior to my diagnoses I noticed I was becoming fatigued more and more easily. Gone were the days where I could spend my day off completing the grocery shopping and cleaning my home. Trying to even attempt this venture felt similar to participating in a marathon while battling the flu.

On days where I felt really well I would attempt to accomplish as much as I could to make up for those sick days. I quickly figured out this was far from being a wise idea. Pushing myself past my limit led to flare up that could last days or weeks. One of the best words of advice I could have been told were to be very mindful of how much effort I was expending versus how much rest I was providing myself. To sat that learning to pace has been one of my most challenging struggles would be an understatement. I’m still figuring it out some days. However, I am much farther ahead than where I was a year ago. I still don’t always know my limits, so I try to set a timer for myself. When I am feeling well enough I expend 25 minutes and follow it with a 5 minute rest break. This method is called “The Pomodoro Technique.” I also wish I had known about the “spoon theory.” It’s a very simple, yet interesting analogy about managing your energy supply.

2. The Fibro Manual

The Fibro Manual is an excellent book that discusses living with fibromyalgia. I found out about this resource 6 months after my diagnoses. I was so grateful for finding this book, but wish I had known about it right after hearing, “You have fibromyalgia.” You won’t regret buying this book ASAP. It is written in everyday language, so it is easy to understand. It is written by Doctor Genevra Liptan who has fibromyalgia. A resource by a doctor who truly understands this condition. How wonderful is that? I bring the Fibro Manual to my doctor’s appointments. Health professionals tend to take patients a little more seriously when they see we are making an effort to become more knowledgeable about our health.

3. Nutrition

I have spent the majority of my life practising healthy eating. I have had to be extra careful with my diet over the last 13 years because I developed Irritable Bowel Syndrome (IBS). It’s remarkable how many of us with fibromyalgia are affected by this. I have followed the fodmap diet since I was diagnosed with IBS and it helped me tremendously until a few months ago. Now I am able to tolerate even fewer foods even though they I continue to follow the low fodmap plan. It will be a very long time before I can see a gastroenterologist again, so I am learning how to be very creative with the limited foods I can tolerate.If you have a super sensitive system I would highly recommend keeping a journal that includes what you eat every day along with your symptoms. I’m sure you know many of the foods you can not tolerate already, but you may very likely find there are foods which are causing you to flare that you may not have recognised.

4. Advocacy

You are the only person who is going to advocate for you. In my experience, doctor’s understand the basics about fibromyalgia. It would be to your benefit to do your “homework” before going into appointments (bring your Fibro Manual). Be mindful of your presentation when speaking with your doctor. My experience has been that some doctor’s do not take kindly to patients providing them with information they were not aware of or have a different opinion on. I am very fortunate not to have this issue with my physician. I think this is for two reasons. One being he is an open minded person and we have developed a relationship. The other reason being I make sure I am very respectful how I present the information. I don’t make any demands; I ask him his opinion and the conversation evolves from there.

You may also need to use your advocacy skills when trying to get an appointment with a rheumatologist. The rhematology clinic I was referred to refused to see me. Is there any wonder why us fibro fighters are discouraged and jaded by the health care system? The clinic’s reasoning was that fibromyalgia patients were not being accepted because they were back logged and were only accepting rheumatoid arthritis patients. I felt this reiterated how fibromyalgia is often not taken very seriously in the health care community. I was beyond disappointed that a doctor who specialises in fibromyalgia would deny seeing a patient. If that isn’t classified as discrimination, then I don’t what is.

I assumed I had to accept the answer I was given by the rheumatology clinic, so I did not press further. I didn’t think I had much say in the matter. It wasn’t until I recently had an appointment with a cardiologist that he told me that being refused care from a rheumatologist was completely absurd and I did have a choice. The cardiologist was very adamant that if my doctor followed up with rheumatology, I would most likely be seen eventually. My doctor would likely need to have a very firm conversation with the clinic, but that is generally the angle that needs to be taken for us to get the care we deserve. My physician confirmed he would speak with the clinic and I have yet to hear a response from them. The next step will be that I call the rheumatologist myself. If you find yourself in a similar situation, you do have a choice. Please don’t wait as long as I did before voicing my opinion and settling for such an irrational response. I find it baffling that we are still not being validated by many health professionals. So many people with chronic illness give up and fall silent. This so desperately needs to change.

5) Finding Support

I would highly encourage anyone living with fibromyalgia to reach out for help. Investigate support groups in your community. If your area, like mine, does not have a specific group geared towards chronic illness then you may benefit from a group offered by the Mental Health Society that focuses on resiliency, trauma therapy, and finding acceptance. I have met others through these groups that are dealing with fibromyalgia. You never know who might cross your path. It’s important to get connected.

I would also recommend limiting your interactions with people who are not supportive of your illness(es). Many of us are living with more than one chronic illness. Stress is such a trigger for fibromyalgia and those who do not understand what you live with or care to attempt to understand are not worth the energy. Do not go overboard trying to explain yourself either. There is no point. You deal with enough every day trying to manage a very difficult condition, so why use your “spoons” attempting to justify yourself. Those people you want to surround yourself with will understand why you need to live differently than the average person and won’t question your decisions.

I hope you have found this post helpful. Please feel free to leave me a comment in the section below. I look forward to meeting you.

Until next time,

Suzy

Photo by Isabella Mariana on Pexels.com