Fibromyalgia and Chronic Fatigue are often associated with toxic overload and therefore, finding ways to reduce the toxins in our bodies are crucial to good health. Dry Body Brushing is a great addition to your daily routine.
Many of us opt for a massage as this helps with our aches and pains. However, what the massage is actually doing is moving and draining lymphatic fluid, getting it to freely circulate around the body. Exercise also has the same effect. However, unless we are very lucky, daily massages are just not an option for most people and we may not be up for exercise every day. Dry Body Brushing is free, quick, and easy, taking just a few minutes every day.
Not only is the skin the largest organ of the body but it is really important for elimination and detoxification. The lymph is responsible for helping to remove toxins from the body and the skin accounts for the removal of about one-third of your body’s toxins.
Often when our body is toxic, this in most cases is reflected on our skin in varying degrees ranging from dry and lackluster to oily and acne. Whilst nutrients are delivered to other areas of the body first before the skin, it is the skin that is the first organ to show signs of dis-ease. Toxic overload can also leave us lacking in energy and suffering from digestive issues.
• Increasing circulation which in some cases has improved cellulite. • Sheds dry skin cells which encourage new cell renewal which ultimately results in brighter skin. • Releases toxins through the improvement of lymphatic drainage. • Stimulates the nerve endings which just feels great. • Helps to eliminate clogged pores and therefore assists absorption of nutrients. • Helps digestion. • Tone the muscles.
• For best results, use a natural bristle brush. • Always brush on dry skin before a shower. • Work in circular, brisk, upward motions always towards the heart and in the direction of the lymphatic flow. • Start at the ankles and work up. • On the back work from the neck, down towards the lower back. • Use circular counter clock-wise strokes on the stomach • Lightly brush over the breasts • Ensure that you never brush over inflamed, sunburnt skin or skin cancer. • Always shower after body brushing to wash away the sloughed-off skin cells. Follow up with a moisturizer.
Annet King, Director of Global Education for The International Dermal Institute says that “body brushing helps to remove stagnant toxins that break down connective tissue leading to the cellulite, however, ultimately there is no conclusive evidence but as a quick fix to plumping the skin, this may be one of the short-lived results of body brushing”.
As with adopting any new regime, it will take time to see results and it is recommended daily brushing for a minimum of 30 days to experience some changes. For a more thorough lymphatic cleansing, you should brush daily for 3 months to see the benefits.
Since I began Fibro Warrior, I have often been asked how do I manage to focus on the positives whilst battling Fibromyalgia? The answer to that is what are the alternatives? I guess I have two choices but only one is worth pursuing.
The truth is that there is certainly nothing positive about having a chronic condition. But given that there is currently no cure for Fibromyalgia, then I feel that I must change and adapt. So read on to see how I do just that….
When I was diagnosed in 2000, I had already been struggling with Fibromyalgia for 11 years. I didn’t know what was wrong with me and I think in reality those years were the darkest. They were scary in the sense that I feared for my sanity. I knew all was not well but the doctors could find nothing wrong.
It was in the early years that this condition robbed me of so much.
It took my energy, my health, my confidence, and my self-esteem. More tragically, it robbed me of the early years with my baby son, and later in 1997 it put paid to my first marriage. Whatever this was, it was beating me and winning!
Getting my diagnosis was a massive relief and once I got my head around the fact that it was incurable, I was ready to fight. I made the decision there and then, that I was not going to rely on medication and from then on, things started to change.
I had two choices, roll over and let Fibromyalgia throw all that it had at me. Become its victim and allow it to keep robbing me until I had nothing left or I couldn’t fight anymore!!
I didn’t have an army or stash of secret weapons…yet! But, I did have a renewed will to get better. I didn’t know how I was going to do it but I thought I knew what I was up against. It was a start, the battle lines were drawn and I could start and fightback.
Over the years, I read everything I could get my hands on about the condition. I saw a nutritionist, spent a fortune on alternative therapies and acupuncture. Joined a gym and quit, joined another, and quit again. I took supplements, drank Aloe Vera. I used crystals and aromatherapy oils looking for one that one miracle cure. You have been there, right? You know what I am talking about.
Well, I am sure you discovered the same as me. There is no miracle cure. One Nil to Fibromyalgia
As I neared my 50th birthday, there came the realization that with this anniversary there would be another “milestone.” I would have officially battled Fibromyalgia for over half of my life. In all likelihood, I would have to carry on the fight for another 25 years. I knew that there had to be a way of making sure that the Fibro didn’t swallow me up completely. I finally knew that the answer wasn’t going to come in some wonder drug or therapy. It was going to come from within me!!
Yep, Fibromyalgia, I won this one!! I got the answer you tried to keep from me for 25 years – one all
It was almost a revelation that my “healing” as much as it could be, was going to start and end with me. No doctors, no therapists, no medication – just me. I truly believed that I had all the weapons I needed right here in my body. It was just a matter of deciding what I had and how I was going to use it.
Firstly, I knew I needed exercise. I had tried all the usual gym stuff, swimming and walking. Invariably, these made me feel worse and induced a flare. I knew that I had to find something fairly gentle on my body but it had to be effective. So began my journey to the Yoga mat. It was and still is amazing.
Yoga meets you where you are and no two sessions are the same. Positions are adapted to accommodate my Fibro body depending on what I can manage on any given day. I also read up on rebounding (bouncing on a trampoline) and learned that this was beneficial for Fibromyalgia sufferers. So, I bought my rebounder and gradually increased my bounce time from an initial tough 5 minutes to an invigorating and enjoyable half an hour.
I had, over the years dabbled with meditation. This had been born out of my love of all things Tibetan and His Holiness, The Dalai Lama. Therefore it made sense to make a real effort to include meditation in my yoga practice. In addition, I spend the first 10 minutes of every day meditating outside, no matter the weather. (An outdoor gazebo is a triumph).
Meditation works!! It takes me to a place where my breath dominates and my thoughts, feelings, and pain are relegated for a short time while I focus on ME. My personal mantra is “It is all about me, it’s all about now”.
My early morning meditation and yoga sessions set me up for the day. I believe that this sends a message to my Fibromyalgia that I am up, out of bed, and ready to take on my day – strong and determined.
So, that is my body & mind sorted – what else could I arm myself with?
I have always been a strong believer that given the right conditions, the body can heal itself. Never one to embrace a medication, I always know that a headache will eventually go away. A cold or flu will run its course and then disappear without a trace. A cut or a bruise will in time, heal as if by magic. So, my next quest was to explore what my body needed to fight Fibromyalgia every damn day.
I personally believed that the answer would lie in my diet. So, I decided to go right back to the drawing board and carry out a cleanse. I knew that this would give me the opportunity of cutting out large amounts of food, whilst giving my digestion a break. This would then put me in the position of slowly introducing certain foods again and then judging how they impacted my body.
I opted for a 12-day program that required me to cut out all processed food, meat, caffeine, dairy, and sugar. It was tough for a couple of days but then the magic started. I woke in the mornings with no aches and pains (seriously). My energy increased and the constant fatigue which plagued my days was gone. People started to comment on how well I looked and I was even accused of getting Botox because my skin glowed.
I felt so good that at the end of the 12 days, I did another 12. I made the decision then to permanently cut out all caffeine and processed foods from my diet. Also, I opted to leave out the meat and just eat fish.
As time went on, I wanted to learn more about how I could further support my body in its war with Fibromyalgia but I also wanted to pass on what I had learned already. In order to support other sufferers, I decided to sign up to become and Health & Wellness Coach. I then went on to study raw food nutrition. It was learning about what my body needed to function at its optimal. I was giving it a fighting chance against Fibromyalgia.
Now, I need to be clear here and say that I would not consider myself healed. There are times when the pain is too much to bear, the fatigue overwhelming but compared to how I felt in 1989 there is no comparison. I have learned that with the right foods and being gentle with me when I need it, these flares pass and I live to fight another day!
Fibromyalgia may win many of the battles but I am determined it will never, ever win the war!!
When it comes toExplaining Fibromyalgia to Family & Friends, it’s a tough one. It isn’t something that comes easily to them or even to you for that matter. No matter how long you have battled with the condition, the reality is that you will always come up against opposition when you are trying to explain how this “invisible illness” affects you every day.
I have battled Fibromyalgia since 1989 and I still think that there really isn’t one member of my family that just “gets it.” And to be fair, who can blame them. Most of the time, I look absolutely fine – a little tired maybe. I am not rolling around the bed writhing in pain. I don’t have a raging temperature or covered in some unpleasant rash – I am to all intents and purposes ME.
It is for this very reason, that those battling Fibromyalgia often feel incredibly isolated and alone.
Likely, nobody in your immediate circle of family and friends understands what you are having to deal with day in and day out. Sure, you can head off to your local support group or find an online forum. But the reality is, if you are like me you want your family to comprehend your suffering. You want a little compassion and support from your loved ones.
One of the biggest frustrations of Fibromyalgia is trying to explain what it is. How you got it and how you deal with it. At times it feels like trying to explain the unexplainable. Truth be told, we don’t really understand what we are battling. It just appears from nowhere, takes over your life. You are caught up in the merry-go-round of pain and fatigue.
So, what are you to do when you find yourself in this situation?
How do you explain to your family and friends why you are missing out on the social occasion of the year. Why you can’t do Christmas at yours like you used too?
Chances are you can’t. And that isn’t because you are not articulate enough or educated enough on the condition – it is because you are too close to the situation. The likely outcome will be that any in-depth conversation will end up in misunderstanding, frustration, and emotions running high on both sides.
So, what do you do? The answer is you let somebody else do the talking for you. I relied on YouTube to get my message across to my family. It takes away the anxiety and almost makes it less personal when somebody else is recounting their story or sharing the facts. I have a great little video on the site which helps to explain, it is a little robotic but the message is perfect.
This issue can be a huge source of stress and anxiety to all concerned. So, it is, for this reason, I decided to do something positive to help you and your family.
I put together a short course which you can share with your loved ones. It contains some strategies for opening the channels of communication along with a couple of videos. There are also two fairly powerful and thought-provoking letters.
Because I feel so strongly that you should have the support and understanding you so richly deserve, I am gifting this course to you and your family.
It is my sincere hope that sharing this information with your loved ones, it will give both them and you the knowledge to move forward togetherunited.
So, head over there now and unwrap your gift with my love and best wishes.
Fate whispers to the warrior, “you cannot withstand the storm.” And the warrior whispers back “I am the storm.” ~ unknown
I love this “warrior” quote and have referred back to it many times throughout my battles with chronic pain. It is the defiance of answering fate back that most appeals to me. The thought that OK, I have my lot in life but I don’t have to like it or accept it.
So often now, we see titles such as Chronic Pain warrior, Fibromyalgia warrior, Chronic Illness warrior, Spoonie warrior. They are everywhere, often preceded by the # on social media. But what does it really mean to be tagged, warrior? Do you have what it takes to even be a warrior?
For me personally, I often shy away from using the word suffer when referring to my chronic pain journey. I prefer the word battle. My head tells me that this word sends out the message to the universe that I am fighting. Suffering I might be but battling is how I want to be perceived. There are many times when I don’t feel much like a warrior but no matter what life throws at me, I somehow tell myself the fight must go on. The alternatives are too hard to contemplate, so resolutely I “soldier” on determined not to let pain and fatigue get the better of me.
Now, I absolutely know that I am not unique, nor am I some kind of hero. I am just another warrior who has no alternative than to fight on. I know that for you reading this, you too are a warrior and committed to the battle. How do I know? Because if you were not a warrior, you definitely would not be on a website that looks to support healthy, positive life with chronic pain. You certainly wouldn’t be looking to empower yourself and search for answers if you were not determined and unwavering in your quest for better health.
We fight for our health everyday in ways that most people don’t understand.
For those of us battling chronic pain, it’s the little things that most people take for granted that make us strong. The effort to get moving. To get out of bed in the morning, even when it would be easier to stay there. Our determination to keep going when our whole body is crying out enough. The smiles we paint onto our faces mask the tears of pain and frustration.
Our abilities to resist the temptation to punch the doctor. You know the one, who tells us that we need to pull ourselves together and snap out of it. It’s the way that we hide our disappointment and sadness when friends and loved ones give us a wide berth for saying “no” one too many times. The relentless march to look normal when we are feeling anything but. It’s the keeping, keeping on when we are so exhausted we just want it all to stop.
The days when the last thing we want to do is be the victim, but our pain and fatigue overwhelms us anyway.
For all of these reasons and for many more, we ARE warriors. It is not some tag or label, it is truly our reality. Every day we go to war, engage in battle just to get through the day. We fight with everything we have, just for some normality. We stand strong in our unwavering support and acknowledgment of our fellow warriors. Knowing that nobody understands and lifts them up like another warrior. We are constantly on a quest for the smallest victories – holding down a job, attending a family wedding, a walk in the park, or just getting dressed.
To every warrior out there battling their chronic pain and fatigue, I salute you. I stand alongside you in your battle for health, wellness, and some sense of normality. Check out how I can support you by clicking this link.
For my birthday earlier this year, my husband bought me the CD from the Greatest Showman. He wanted me to hear the words from the song “This is me.” Today, I dedicate those words to you.
I opted to share this emotionally charged clip as opposed to the one from the actual show. She is scared but she did it anyway!! Enjoy her triumph and if you love the video as much as I do, drop a comment in the box below and let me know.
“We are Warriors, yeah, that’s what we’ll become.”
Today, I stepped back into a place I haven’t visited in a long time……One year to the day to be exact since I last ventured anywhere close. It wasn’t intentional or deliberate to visit on this day, it just kind of happened. It felt like taking a trip down memory lane. I was curious and I suppose I wanted to see if everything was still the same. Truth be told, it was and it wasn’t.
The surroundings were familiar enough, nothing much had changed but in a sense, everything had changed. I had changed. That seemed to make all the difference.
My last post here was on 3rd October 2018. 12 whole months since I had reached out to my fellow warriors with love and support. 365 days, that I haven’t had the confidence to write from the heart and reach out. 52 weeks of being in the wilderness and feeling disconnected from everything and everyone.
The truth is that I was struggling so bad myself that I felt that I had nothing to give you. How could I make things fantastic for those who came to get support and guidance? I couldn’t even help myself. So, I retreated. I let life happen to me whilst all the time trying desperately to distance myself from the mental and physical pain I was battling against.
One of my coping strategies, the love of writing fell by the wayside, and once that happened my outlet for expression went too. I bottled everything up inside, giving the appearance all was well in my world, whilst the reality was far from good.
All of my words of wisdom had dried up and I was just another chronic pain warrior, battling through each day with nothing new to share. No advice to give and no words of comfort.
As I logged on today, I read my last blog post and replayed over and over the video clip that I had attached to the post. It was then and still is today an incredibly powerful version of “This Is Me” from the film The Greatest Showman. As I listened, the words
“Another round of bullets hits my skin Well, fire away ’cause today, I won’t let the shame sink in.”
resonated so deep within me that I could have easily sunk to the ground with emotion. I had let shame get the better of me. I was ashamed to really share the struggle…..if I wasn’t Fibro Fantastic then I thought I had nothing anybody would want to hear.
But, recently I have been working so hard on authenticity.
Coming to terms with who I am, who I always was, and who I have become. Acknowledging that if people can’t deal with the real me, then there is no point in having them in my life. I wanted to send the imposter away and take the real Tracey by the hand and bring her out of hiding.
As I played the video clip Keala Settle’s voice wracked with emotion was like a light going on. It felt as though now, this was my anthem. My mantra. My shout out to the world that I make no apologies. – This is me!!
I am brave, I am bruised I am who I’m meant to be, this is me Look out ’cause here I come And I’m marching on to the beat I drum I’m not scared to be seen I make no apologies, this is me
To share my words and feelings from my heart feels like a huge release. I need an outlet for my journey, the one that has both physical and mental pain as passengers. It has been here all along – my blog, my corner of the virtual world. A place where people stand together, as members of an invisible club, where only we understand the rules.
Going forward, I don’t know the direction Fibro Fantastic Wellness Coaching will take, but I do know this will be as much about me as it is about you. I can’t help you if I can’t help me. So, for now, I feel that the blog will take on more of a journey feel. Letting you into my new world of struggle, despair, the battles, the highs, and the lows.
I am still Tracey the Wellness Coach, but I am also Tracey the fighter who is vulnerable and scared of the future, just like the rest of you. But I am home and for now, I will take that!
Then the pain oozed into my jaw. This is when I learned about temporomandibular joint disorder (TMJ disorder). Persistent headaches became the norm. Thankfully, I have had only one crazy migraine that brought me to the hospital. Migraines are not cool, bro.
Stress shoved its way into depression and then full-blown anxiety.
Pain oozed into my lower back and hips. Cue for the frustrating adventure of going to specialist after specialist–none of whom could find the answer to my invisible aches and pains.
After a few weeks of digestion issues and my gastroenterologist reported that stress is impacting my digestion. Thankfully, my digestion issues did not persist enough for a diagnosis to be stamped on my stomach.
Restless leg syndrome. Aches and pains. Aches and pains. Falling asleep became an arduous undertaking. And it still is! Soreness and exhaustion travel to my wrists and fingers.
It’s not rheumatoid arthritis. It’s not Lupus. No diagnosis was yet discovered. My doctor printed out a detailed sheet of Hypochondria for me from Chronic Illness. And off he went to his next patient. No bedside manner.
Alone, confused, misunderstood, and in constant pain. I took a break from asking questions. And I saved a lot of Metrocard money from traveling to these “specialists.” Praying was different. My body and its pains were yelling for attention. “Heal me!” My mother, my aunts, uncles, my family in the Dominican Republic were all earnestly praying for my healing.
“Tenga fe. Dios te vas a sanar.” (Have faith. God will heal you.)
I didn’t have any faith. Before my aches and pains, I believed that I wasn’t good for anything. I was convinced that the domino effect of my aches and pains was God’s funny way of saying, “Since you don’t think you are good for anything, I will make sure you are no good for anything.”
I am managing with yoga, analgesic creams, TENS, and a few other devices and techniques that I am grateful for, but it’s a daily battle. My body, mind, and soul experience Jesus crucified as I re-offer my prayers, works, joys, and sufferings to his Sacred Heart.
You’re (probably) just meeting me and here I am talking about my weight. Well let me tell you, it’s a tough topic for me like I’m sure it is for 95% of the women out there.
But I also know it is something we women dedicate a lot of emotional time and energy to. So I’ve decided to put aside my personal discomfort in favor of sharing my experience with a Fibromyalgia Diet.
I can tell you right now this is not a “Get FitQuick” story. Or even a “Get Fit Easy” story. It takes a lot of dedication to change your life, but it is so worth it.
It started in 2007 when I decided I needed to get in shape. I lovingly carried around the Freshman 15 (plus a few more) for several years. Holy smokes were I tired of it!
At the time, I still thought Fibromyalgia was maybe a mental disorder, and running for miles a day was completely doable. It took a few years, but I dropped about 55-60 pounds and was loving life. Then 2013 came around and Fibromyalgia dumped a load of fatigue, pain, and migraines on me that completely stopped my physical activity. Oh, and ushered me into the deadly territory known as comfort eating.
All my hard work went out the door before I could get up, walk over to it, and stop the exodus.
It didn’t help that I met my (now) husband a few months after getting sick. And we all know what happiness and dinner dates do to the waist-line!
I can genuinely say I haven’t been happy with my weight since then. And my decrease in activity level has been a hard pill to swallow. Especially when I really thrived on being able to hop on my bike and go.
Although I don’t have proof, I’d pretty much promise you that a number of my health issues in the ensuing years can be laid at the feet of the Standard American Diet (SAD) and lack of exercise.
In 2018, a friend recommended a Functional Medicine Doctor (FMD) to me. It was one of the various treatment options I hadn’t yet explored. Considering I had seen upwards of 20+ doctors at this point, my husband and I both figured it was about time to consider it.
Dr. Scotting, my FMD, was amazingly knowledgeable about my illnesses, my symptoms, my medications, and how they were interacting. With a little blood work, we started down the path of getting my system to settle down – the first step: start a supplement regimen.
This was tailored specifically to my needs and was a great way to take care of the ‘low hanging fruit’, so to speak, of my health issues. For example, thanks to a sensitivity to sunlight and heat, I had REALLY LOW Vitamin D levels.
We got a few other issues ironed out and then we moved on to the secondstep: fix eating habits.
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“Time to make some changes,” he said. (Or something very similar)
It helped that I knew it was coming. I’d tried diet changes before, but never long-term or with any particular success. As a matter of fact, I was strangely excited to give it a shot since I knew I was going into it with his help. There was also the peer pressure factor. He was telling me how to help myself and I didn’t want to roll back into his office a few weeks later and tell him, “Thanks for the advice I paid for, Doc, but I didn’t take any of it.”
One hour later, he handed me a whopping list of gut irritants and inflammatory food, walked me through the process, and sent me out into the world.
Unlike a lot of ‘diets’ I’ve tried throughout my life, this one was aimed at Fibro and not at weight loss. And for me, that was a really important distinction.
I focused on how my diet was making my various illnesses worse instead of how I was overweight.
Honestly, going into this lifestyle change was surprisingly easy. Especially considering how many of my favorites I was going to have to give up for a little while at least, and forever at worst.
I had the support of my husband and FMD, the right mindset, and a trash box of non-compliant foods that I couldn’t even lift. Even though the next few months were going to test my resolve and mental health in ways I wasn’t prepared for, at least I had my mindset straight.
The first thing to note is that this was less of a ‘diet’, in the traditional sense, and more of a lifestyle change. Every time I felt like eating something that was out of bounds, I wondered if it would be the thing that brought my migraines back. Or ramped up my IBS symptoms. Or made my legs hurt like the flu on steroids.
I wasn’t counting calories or macros. Instead, I was considering how my decisions would impact how I felt physically and mentally.
It was because of this mindset that I gave up the following food groups for a minimum of 3 months:
The adjustment period was tremendous but made easier by the fact that I had decided to go all-in and was excited by the possibility of change. In less than 2 weeks I was down 10 pounds and eating to my heart’s content!
Here’s the theory behind this eating method: cut out all inflammatory foods and give your gut and system enough time to rest. Most people remain on the ‘strict compliance’ phase for 2 months minimum, or until they see a dramatic reduction in their symptoms.
Once your symptoms subside, you gradually work food back in, one at a time, monitoring for a reaction. If you react in any way, then do not continue to eat that food. You might choose to wait another 6 months or so before trying to reintroduce it again. Or give it up entirely.
In the end, you have a list of foods that you should avoid or eat sparingly. And best of all, symptoms that have lessened or disappeared entirely!
Full disclosure, it wasn’t always cheap or easy to do this diet.
Organic produce is more expensive. Grass-fed meat is more expensive. Sugar-free, gluten-free, etc is all more expensive.
And more than once I was tired and overwhelmed when it came time to cook for dinner and broke down crying. Bless the Lord for my husband who jumped in with a pan-seared chicken breast and AIP-approved seasoning to keep me on track and feed me!
I didn’t realize it in those early days, but there is actually a food service that provides compliant meals, sides, and desserts that deliver!
If you’ve never heard of Paleo on the Go, it’s worth looking into. It’s definitely more than just Paleo and the slightly higher price tag is, in my opinion, worth it.
Because honestly, the overwhelm is real when you begin. If I would have known there was something like this available, I would have jumped on it and never looked back!
Also, when you’re dying for something easy or delicious (that you didn’t have to throw together), their AIP bakery is AMAZING! I’ve tried some of their cookies and they are the. best. thing. ever.
I won’t be dishonest and say this Fibromyalgia diet fixes everything. And I certainly can’t say that I didn’t spend a lot of time stressed or crying because I was too tired to think about what I could eat, much less cook it. But I’m also able to see some shining moments.
I spent an absolute ton of time Googling “Fibromyalgia diet recipes” or “AIP Recipes” and found some excellent options. I love cooking so it really helps to find ‘real food’ recipes so I don’t get bored. And I nurture my family’s love of asparagus and Brussel sprouts to our hearts’ content!
And I weighed myself more than recommended because I’m slightly neurotic about seeing the scale drop. As a matter of fact, it dropped steadily with zero weight loss effort from me. And continues to do so!
Best of all, I had some remarkable wins in the symptom departments:
3-5x weekly migraines dropped to 1 every 2 weeks (or so)
I saw less decrease in symptoms than others ( which I try my hardest not to compare to)
I went through about a month-long period where my hair fell out a little more rapidly. FMD said it was because my hormones were regulating. It did eventually stop.
Increase in anxiety/spending too much time worrying about eating
Despite these negatives, I would choose to do it all over again. Absolutely some of that enthusiasm is related to dropping weight. I hope to continue doing so. But it’s life-changing to know I have more control over my health.
After all, isn’t that one of the things chronicillness tries to take from us? But this time I fought back and I’m pretty sure I won.
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Fibromyalgia and Agitation. You would be forgiven for thinking that these are two words that belong together. Well not in my world!!
For those of you recently diagnosed with Fibromyalgia or those who may have an inkling that perhaps you are showing symptoms of having the condition, it is easy to allow some fear to creep in. When words like “incurable”, “chronic” and “heightened pain responses” are used it is understandable that an element of fear will kick in and your outlook is considered gloomy.
My symptoms first started appearing in 1989, back in the day when the condition was referred to as “yuppy flu”. Doctors really didn’t have much of an idea about what was happening. After endless tests which always came back clear, I was worried that maybe I was imagining all of the fatigue and pain. A real fear for my sanity crept in. This carried on until I finally got my diagnosis.
Not because I was scared or shocked, the reality being I was relieved. I was right all along, there had been something wrong with me and now they knew what it was, I could be cured…
Oh, how wrong I was. I asked the doctor excitedly, what was the cure? He then told me there wasn’t one and the fear crept in again.
Since 1989, fear has tried to overtake me many times. My condition has threatened to overwhelm me but it has never quite succeeded because I was determined that for as long as I could, I was not going to allow the fear of Fibromyalgia gets the better of me.
Each new day gave me an opportunity to keep on keeping on. My attitude has always been to push on through whatever the condition could throw at me. There have been times when it has knocked me down but I never allowed the fear to keep me there. I was more afraid of not being able to enjoy my family and my life, not be able to hold down a job, and becoming a burden both financially and physically.
I didn’t have a crystal ball and could not see into the future. I did not know what Fibromyalgia would take from me and when it would take it, so I tried to get through each day the only way I knew how – which was to get up and get going.
If I had listened to my GP when I got my diagnosis, then for sure I would not be functioning the way I do now. My life would have consisted of anti-depressants and strong painkillers which ultimately would have stopped working and had to be replaced by stronger medication. Most likely I would have ended up in the wheelchair that he promised me further down the line and I would not have been able to hold down a full-time job.
For some, I know that this condition can bring with it additional health issues which means some people struggle massively with their Fibromyalgia. But I would say to those people and all of the newly diagnosed sufferers, don’t be afraid to push a little. Life is for living and making wonderful memories. Even with a chronic condition, it is possible to have a positive mindset that speaks to our body and says “I can do this”.
I can get out of bed today, I can have friends over for dinner, I can attend that wedding, I can make that trip for a few days holiday, I can do some gentle exercise, I can make healthy changes to my diet, I can take some quiet time to just be. I know some of you are reading this and saying I would flare – well yes, so do I but I try to compensate and be gentle with myself for a few days after doing something which exerts me. I almost build it into my schedule. I have a late-night, I follow it up with 2 early nights to try and rest my body.
We have all heard that saying, and I believe that fear could be the thing that cripples us long before Fibromyalgia. It is said that ourdeepest fears rarely manifest. If I could offer you one piece of advice that I know to be true for me it would be to “do it anyway”. Don’t allow the fear of what may or may not happen to hold you back from living your life. Don’t let the expectation of what you should be going through as a Fibromyalgia sufferer stop you from creating special times and memories. Your body may surprise you and give you an easy ride – you won’t know until you try.
Baby steps they may be but they are still steps in the right direction.
I heard a poem today which inspired me to write this piece. it is by Jeff Foster and is called Nothing to Fear.
99.99999% of your fears live only in your imagination, in anticipation, and in memory.
Even if the worst happens, you’ll find yourself dealing with it at the moment, responding from a place of presence.
You don’t have to deal with it now, you’ll handle it then.
And who knows: The “worst” thing may turn out to be your greatest teacher, your most profound call to awakening, an invitation to the kind of courage of which you never thought yourself capable. Fear isn’t your enemy, but a signpost ~ breathe into the moment.
This post may prove to be somewhat controversial but it comes from my heart and I believe I would be doing a disservice to my fellow “warriors” if I were to let it go unsaid.
When I was first diagnosed 15 years ago, I was relieved that having already suffered for 10 years my condition was very real and had finally got recognition and more importantly a name. I remember leaving my doctor’s surgery and going home, heading straight for the computer.
I wanted to know all there was about Fibromyalgia, it was something I had never heard of before and those around me had never heard of it. I wanted to learn what it was, what caused it, and more importantly how I was going to manage it.
After many hours on search engines, I finally switched off the computer feeling totally down, demotivated, and totally despondent. All I had learned from my fellow sufferers was how to claim disability allowances, how I should stop working, what were the best drugs and plenty of pictures of people posing happily with their wheelchairs and walking sticks.
On that very first day of diagnosis all those years ago, I made the decision that this was not and never would be my route in dealing with Fibromyalgia – there had to be a better way and I was determined to find it. So over the years, there have been ups and many downs with this condition but my determination to find a way to manage it positively has remained steadfast.
Since committing myself to the goal of reaching out to fellow sufferers, I have stepped back into the world of Fibromyalgia communities and online support groups and have to say in the majority, there are some great sources of advice and help. There is a thriving community of people who come together and share their stories safe in the knowledge that there are others who understand them and can relate. The internet I feel has helped us all become much more educated about our condition which can only be a good thing.
I think sometimes, those of us with Fibromyalgia can be our own worst enemies. The frustration at the lack of support from family, friends and yes, even medical professionals makes us vulnerable to hosting our own pity party. In the absence of outwardly obvious symptoms, the pages of “normal” tests results, and our grossly misunderstood diagnosis, we quickly become paranoid and confused to the point whereby a broken nail is blamed on Fibromyalgia and our plight appears hopeless.
Sadly, I see hosts of people on these forums searching for answers that clearly our doctors can’t or won’t provide, I see them grasping for any bit of information that may explain away their constant headaches, their unexplained bruising, their restless legs along with a host of other weird and not so wonderful ailments that plague their daily lives. I too have been guilty of putting every little ache and pain down to Fibromyalgia when in reality it could potentially have been something more sinister.
I find myself staying away from the doctor’s surgery, probably down to the years of doubt and disbelief that there was anything wrong with me, the fear that I will be labeled a hypochondriac or once again, be sent off for tests that only ever come back normal. I dismiss many ailments as “it’s just a flare” and crack on as usual.
I resisted the offer of medication back when I was diagnosed in 2000, for me, strong painkillers and antidepressants were not the routes I wanted to take if I could help it. I had to learn more about what I was dealing with as opposed to just giving in, rolling over, and accepting the first treatment protocol I was offered. A doctor many years later, told me that if had accepted those drugs back then, it is unlikely that I would have the life I have now, it would have changed……..for the worse! My body would have gotten used to the doses over time and my prescription would have been increased several times to enable me to have had the same effect.
Please don’t get me wrong, I am not saying that medication is bad, it was just not for me at the time and I have never reached a time (yet) where I am ready to hand myself and my pain over to drugs. Maybe I am a fool and possibly there is the chance that I could have led a relatively pain-free existence for these past 25 years, my fatigue could have been controlled and I could have led a different life. In my defense, I also suffer from hemochromatosis so it is important that I protect my liver where possible.
When I read the stories from fellow sufferers, I could cry. It seems that the medical professionals are only too happy to hand out the prescription drugs like smarties as a first resort as opposed to the last. I have found that there is another way and for me, that doesn’t include medication. I only wish I had found out earlier that changing my diet and including yoga and mediation in my life would have such a massive impact on symptoms. My 20’s, 30’s, and 40’s may have had a different story to tell.
I see the forums crammed with people who have a whole host of ailments and conditions all laid at the Fibromyalgia door, they have prescribed a cocktail of drugs including morphine for symptoms that potentially may have nothing to do with Fibromyalgia. Whilst this condition is very real and affects our lives greatly, the reality I feel is that the GP’s use it almost as one net catches all. Are our complaints ever really investigated or are we written off as the nuisance that is constantly in the doctor’s office?
My own doctor fobbed me off with a physio appointment recently, only for me to be told by the physiotherapist that he couldn’t possibly work with me as there wasn’t one area that needed attention but my whole body. He was fuming that in 25 years I have had to find my own way and I have never been offered the support that he thought I was due – he subsequently wrote a rather abrupt letter to my GP.
So, I guess at the end of this, what I am trying to say is that we as Fibromyalgia sufferers have to take more responsibility for our conditions, we have to research the alternatives to the strong drugs which will turn us into zombies barely functioning and we have to be honest with ourselves.
Whilst we have to treat Fibromyalgia with respect, we must also be open to recognizing that it possibly isn’t the reason for every little thing that goes wrong with us. Arthritis can come with age not necessarily because you have Fibromyalgia, issues with digestion won’t always be IBS.
We have to follow our instincts and listen to our bodies – we have to take ownership!
Over the years it is true to say that on the days I have felt my worst I am invariably greeted with the words by somebody or another “you look really well”.
I have always kind of smiled at this, even joked about how crap I feel yet people think I look amazing. However, this week it really got to me and set me thinking about the realities of living with what is effectively an invisible illness. I remember once a doctor saying to me that I would probably be better off having a leg missing at least then people would know I was suffering – I am of course not suggesting that we all go out to have legs amputated but I kind of see his point.
I am guessing that for many of us suffering from Fibromyalgia, we look pretty normal, nothing really to distinguish us from the next person. Standing at the train station this morning, I am sure nobody looked at me and thought “Poor girl, look at the pain she is in”. However, in reality, my current flare-up is so bad I could cry.
I work, I socialize, I run home and I exercise (albeit slowly and gently with yoga), hey maybe I am luckier than most but the reality is the effects of Fibromyalgia are never far away. Sitting chatting yesterday, without thinking I tapped the biro onto my thigh and there it was, the familiar painful nudge reminding me of Fibros presence. On the outside looking in, nobody noticed, and had I have yelped out or grimaced who would have believed that a tap from a pen could evoke such a painful response. At best, I may have been labeled a wimp, at worst a hypochondriac.
In the early days before my diagnosis, my doctor had given the suggestion that I was maybe imagining it and would investigate this further. She concluded that I must have had some mental stress that could manifest as “imaginary pain”.
I knew that my pain and fatigue were very real but after being written off so many times, even I began to wonder.
I can imagine that for friends and family, it is as equally confusing when their husband, wife, mother, father, son, or daughter are tired and lethargic all the time, they are in constant pain, and yet there is nothing to show for it and they are tested by the doctors only for the tests to come back normal. What are they to think? It doesn’t take a genius to figure out the frustrations and conflicting emotions on both sides.
Due to the nature of our condition, we are often left feeling lonely and vulnerable. Unless we have a very sympathetic doctor, then we may feel that we have no place to turn, nobody who can fully understand how it feels to look Warrior and yet feel wretched. Nobody can understand, no matter how well-intentioned or how much a person loves you, they will never grasp the reality of Fibromyalgia. That is why the Fibro community is so important.
So, the next time somebody tells you that you look great and so well, hold your head up and be proud.
Fibromyalgia is horrible and robs us of so much, but it can’t take our life or our will. We have to work hard to function as normally as we can and that takes strength and guts to get up every day and face the world in so much pain particularly knowing that nobody will probably even notice.
