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!
If you know me, then you know I call things I use to assist me when I have painful flare; cheaters! I don’t know why. Here are three of my cheaters just for you! Consider it an early Christmas Gift…
Hello,Tommy Copper! Why haven’t I tried this before?!?! Well, I have tried ‘other’ copper products. But. Tommy Copper, the brand name, is a must! I got the back belt first but was so thrilled with the results I added the leg and arm sleeves! This product isn’t about compression, just get the copper cloth as close to your skin as possible. This means under your clothes. Start slow, a few hours a day, and build. I felt relief within one minute after I put on the back brace. I had no back pain within seven days! I’m dead serious! (Yes, the pain comes back but to get an hour of relief, not to mention 8 to 10 hours in ONE DAY?!?! I’m sold!)
This product may not work for everyone! But for $20? It is worth a shot. The company states that these items are for those who are in pain but cannot ‘slow down to rest. Well, I got to put these on, rest, and run errands! Yahtzee! These come in black and also in (my favorite) camouflage! I put mine on, and I am sure I’m invisible, blending in with my surroundings!
I just cannot stress the importance of soaking in Epson salt. Put a cup of Epson salt into your bathwater. (At least soak your feet in Epson salt!) As I no longer have a bathtub at my disposal, I soak my feet in Epson Salt about three times a week. You can add essential oils! I did happen across Dr. Teal’s Epson salt, there are many kinds, infused with beautiful smelling essential oils. Get yourself some Epson Salt. It is so cheap and had such wonderful results! Calming, detoxifying, and great to do before trying to sleep.
I am not supposed to take NSAIDs (ibuprofen), but there are times that I do because recently, I was denied any access to my pain medication.(Yep. It happened, I knew it eventually would.) Hello, ibuprofen. When I was younger, in my early 20s, I suffered from bursitis in my right shoulder. Very painful! The doctor I was seeing told me I could take 800 mg of ibuprofen every six hours, and that was almost the equivalent of taking a pain pill. It works, folks.* Not great, but tamps down the stabbing, take your breath away, pain. Take your regular medication, supplement your pain management protocol with 800 mg of ibuprofen 2-3 times for one day. (Don’t do this for very long, maybe one to three days max.)
*Please check with your doctor before doing this. There are always risks and rewards with every medication you take! The pros and cons, according to your own body chemistry. I am NOT a doctor nor do I play one on TV! Talk to your medical professional.
There is a NEW cure for fibromyalgia plastered on FaceBook! Yep. They have done it! AGAIN! Another cure for us fibro sufferers, for crying out loud! It is about time!!! (Really?) Well, let’s talk about this…
Ok. There is a blood test called the FM/a to diagnose fibromyalgia. This is real. Your insurance, whatever that may be, will cover the cost of this blood test.
What does the FM/a test for? (Researcher-speak) This is a multi-biomarker-based test that analyzes your immune systems’ white blood cells’ chemokine and cytokine patterns. People with fibro have an irregular pattern regarding these proteins.
What does the FM/a test for?(Kim-speak) This test measures the proteins in your body that increase when you are ill. These proteins increase your white blood cell count considerably to fight the likes of the flu, mono, infection, etc… These measurements should prove to be erratic if you have fibromyalgia.
(Kim-speak) Do not rule out being tested for the FM/a test, just don’t be firstin case it’s a deciding factor in the treatment you are allowed to receive! (This is not a one-size-fits-all illness!)
The result in this proposed theory will be a cure for the incurable… AND (drumroll!) they have the ONLY cure!
Just what is this cure? It is the TB vaccine. Period. Will this work? I haven’t researched one case where it has worked. I have not studied one case where it has caused any harm. Go ahead and research the TB vaccine and see if you think it may hold promise for your ‘type’ of fibromyalgia. Go ahead and get the TB vaccine if you think it might work. Just ask your doctor to administer the TB vaccine. The cost is low, the vaccine is available. There is no need for such a cryptic message of a wonderous ‘cure!’I trust YOU to make the best decision for YOU!
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!
Our journeys with Fibromyalgia are often long and very lonely.
It is difficult it seems for our loved ones, friends, and colleagues to contemplate ever feeling so awful and wracked with pain when in most cases you look surprisingly well. Doctors, if you get a sympathetic one, are busy and how do you pour your heart out in just a few minutes assigned to each patient? Finding your Fibromyalgia support network isn’t always easy.
At times, I think it is the loneliness that I find the hardest to deal with. The holding inside of the things that scare me and my sheer frustrations of having a condition that nobody, including some medical professionals, has no comprehension of. Add to that the feelings of guilt at not always being able to function the same as everybody else and it all makes for some pretty grim days.
So just where do those suffering with Fibromyalgia and other chronic conditions get their support if not from those closest to us?
A simple search on google reveals plenty of groups and communities but do they really offer the kind of Fibromyalgia support you are looking for? I know that for me when I was first diagnosed, I looked to the internet for some guidance and was desperate for somebody that just understood.
Sadly in those days, I found plenty of sites but the reality was that there seemed to be some huge pity party going on and that really wasn’t me. Don’t get me wrong, I can do feel sorry for myself with the best of them but truth is, I have Fibromyalgia but it was never going to have me. So I plodded on alone for pretty much 25 years with no real, tangible support. I have an amazing husband who constantly tells me to rest and who takes care of me very well but after all these years, he still just doesn’t get it but he loves me anyway.
When I decided to put my experience to good use and start the blog, I was determined that I was going to offer positive Fibromyalgia support and advice to my fellow sufferers. I wanted to empower and show that despite us having a condition that can take over our bodies from time to time, we could still function and with some determination lead a pretty normal life.
Well now, having had a good look around, it seems things have moved on in the past 28 years.
There are groups of Fibro Warriors who use their personal knowledge of the condition to motivate and support others in the same situation. I have come across Facebook groups where the love contained on the page is almost tangible. It is uplifting seeing people sharing their experiences of Fibromyalgia with the one constant of supporting one another and offering advice to those who are unsure or confused about their condition.
I am passionate about getting the Fibro message out there, but more importantly, I want to stand alongside fellow sufferers as they navigate their Fibromyalgia journey. I have 28 years of experience with this condition and can take the guesswork away from you when you are looking for answers.
Facebook allows us to come together to support one another and I have both a public pagebut probably more importantly I have the safe sanctuary of a closed group. The support fellow sufferers can give one another is invaluable, it is very hard for our family and friends to really comprehend what we deal with daily. You would be more than welcome to either the page or group.
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.
We love hearing stories about people who have gone into Fibromyalgia remission. So here at But You Look So Healthy, we have decided to seek out those people! Most doctors give little to no hope or guidance on how to feel better. Who better than to ask about feeling better than the experts themselves? No, not the doctors, but the people who have managed to figure it out themselves and live it!
Today we talk to Dawn from New York about her Fibromyalgia journey and how she stays healthy after living in pain for years.
DAWN: I had injured my back playing with my kids a few years prior, but never got a diagnosis on that until 2006 when a sedentary job caused everything to flare back up. I believe it was a cross between this injury that caused herniated discs and getting the flu that was truly brought on by fibromyalgia.
BYLSH: How long did it take for you to get diagnosed and what kind of doctor diagnosed you?
DAWN: I struggled with the pain and ended up on disability for over a year before seeing a pain management specialist. He was the only Dr, other than my chiropractor, who believed me and diagnosed me. I dealt with the pain and various medications over the years.
BYLSH: What was your rock bottom when you decided you needed to change in order to heal? What changes did you make in your life to feel better?
DAWN: In October 2019, I decided to try a keto lifestyle to lose weight. I was convinced that I would always be in pain. I can’t recall exactly in my weight loss journey when it happened, maybe a few months in, but I realized that I was no longer in pain! My inflammation was gone. I no longer needed my pain meds! I feel that by cutting out potatoes, rice, pasta, sugar, grains, and gluten, I was relieved of the inflammation, which I believe has put my fibromyalgia into remission.
BYLSH: Looking back in time is there anything you would have done differently to not get fibromyalgia?
DAWN: I am not sure of the causes of fibro, or if I could have avoided getting it, but I wholeheartedly believe that we can change our outcome with diet and exercise!
BYLSH: What do you want other fibro people to know they need to do in order to go into remission?
DAWN: I highly suggest changing your diet by ridding yourself of processed foods and eating meats, vegetables, eggs, and healthy fats.
BYLSH: For you, what is the number one thing to stay in remission, AKA your secret sauce or holy grail? It is the number one thing you have to do to stay in remission.
DAWN: I realize that we are all different in our journey but start by taking control of your diet and exercise! I will continue to eat a low-carb/keto lifestyle because this is what has worked for me! I hope that you, too, can find relief in your journey to better health!
