7 years post fibromyalgia diagnosis and I’m still trying to accept that lowering the bar is essential to living my best life. Pushing myself beyond my physical limitations leads to a flare, period.
I push too hard and I get knocked down. It’s really that simple. Forgiving myself these limits. Now that’s where I struggle.
I’d like to say that I’ve learned not to beat myself up over it. But, that’d be a lie.
The truth is that I still spend way too much time belittling myself for not getting things done. And, when I do finally finish a task, I judge myself in comparison to my pre fibromyalgia diagnosis standards. Which I can no longer live up to.
So, what does this achieve? Nothing positive, that’s for sure. Quite the opposite. I deflate my energy level to sub-zero with all the unspoken words of criticism bouncing around in my head.
Instead, I should be supportive and pat myself on the back for doing my best. I know I need to adjust the bar downward. It’s just that I’m having a hard time accepting it.
This brings me to my biggest fibromyalgia lifestyle hurdle; learning to lower the bar.
Having to lower my standards, is my biggest fibro struggle. Not the pain. Except when I’m having a fibro flare of course. Then pain is number one. But even then, often I spend much of my involuntary painful downtime stressing over what I’m not getting done.
My insurmountable hurdle since my Fibromyalgia diagnosis has been accepting that I can no longer strive for excellence in everything that I do. I have always been an overachiever and strove to continuously raise the bar higher. I’m very competitive. And pre-Fibromyalgia diagnosis, my toughest opponent at most things was always myself.
Whatever I achieved, I’d push myself to do it better the next time.
Time to Start Showing Myself a Little Love
7 years after having been diagnosed with Fibromyalgia I’m finally learning to accept that my standards have to change and that I need to start congratulating myself a little more on my many daily successes rather than condemning myself for things beyond my control.
Sometimes in life, the sky is not the only limit and that is ok.
It’s tough trying to be tough when you watch your poor spoonie dog becoming sicker and sicker. It’s one thing to be running the autoimmune disorder gamut as a human. But, can you imagine how confusing it must be for a dog?
It’s like we just start to get one illness under control and yet another creeps up and knocks poor Leo for another loop.
Pretty much the same way it’s been for me going on 7 or 8 years now. Even some of his blood test results are similar to mine. And, like many of us human chronic warriors, neither his exact illness(es) nor the underlying cause(s) can be pinpointed.
My poor dog Leo keeps getting one medicine after another, which leads to some temporary relief. But then the side effects kick in making matters worse or sometimes causing new illnesses.
I thought I felt helpless riding my health roller coaster. Ha! Now that Leo’s hopped on board, the climb to the top sometimes feels pretty much insurmountable.
Anyway, I’m not complaining because he’s the best dog ever and I love him with all my heart.
Sunny Days Are Here Again
On a sunnier note, warmer days are finally helping to ease the widespread screaming joint pain I was plagued with since the fall. I’ve managed to break through the surface of clutter and disarray that accumulated over the winter.
Feeling a wee bit inspired, and that my chronically fab friends are a start.
The moment the words ‘get active’ escape their lips my focus shifts 100% to holding back the incredible urge to roll my eyes. For the most part, unsuccessfully.
It’s like constantly replaying the perfect vine loop of watching Groundhog Day over and over. We keep hearing how we need to get active in order to feel better. But, what people don’t understand is, we need to feel better in order to get active in the first place.
Press play and repeat day after day after day the exhausting loop plays.
For five years I spent a lot of days, months actually, beating myself up for not being active. It’s exhausting silently screaming at yourself constantly to get up and get active.
Then about a year ago I started listening to music again. Not only did the right playlist cheer me up, but often I’d catch myself bee bopping to the music.
Don’t get me wrong, I wasn’t pulling off DWTS or anything. Sometimes I was simply swaying to the music or shuffling around like Tim Conway. But, I was standing and I was moving.
Which when you are battling fibromyalgia’s chronic pain, counts as getting active as far as I’m concerned. Music doesn’t always get me moving. But, it does some days and in my opinion, that’s better than no days at all.
Anyway, I remembered how much I loved going out dancing and how good it made me feel and so for a while now I’ve been working at wiggling my butt daily.
The right playlist lifts my spirits and gets me moving
I created a bunch of personal mood-lifting playlists. Each one is 6 songs and about 20 minutes long. While prepping for my shower, I press play, and more days than not the music gets me swaying. I always try to get boogieing before hopping into the shower, because I’m usually physically zapped after.
Turns out, well for me anyway, that music is good medicine. Hmmmm, who knew?
What I had to learn was, to set the bar at a realistic level for me. And, to give me credit for any and all physical activity. To encourage me to get up and just get moving instead of putting myself down because I expected my version of “getting active” to be on par with die-hard gym-goers or the people I see out jogging.
It’s time Fellow Fibro Warriors to pat yourself on the back each and every time you wiggle that butt, even if it’s ever so slightly.
Raise your hand if you’ve ever been asked “what does fibromyalgia feel like?”
Oh wait a minute, I can’t raise my right-hand today because of killer shoulder pain. Hang on while I check to see if the left arm is working. Yeah! I can raise my left hand! Yes, I have been asked what having fibromyalgia feels like, many times.
Who knows what tomorrow or even later today will bring. My shoulders are favorites for my fibro buddy to target. There can be a limited range of motion in one shoulder or both. Sometimes neither, those are the good days. I find out only when the time comes.
Absolutely no way to predict these things, but learning to live with fibromyalgia means respecting physical limitations when they do crop up. I’ve been taken down for months by my fibro shoulders.
I mean pain pops up everywhere, no part of your body is sacred and there’s quite a variety of pain types and levels. There’s the stabbing, knock the wind out of you and take you down “fibro pain”. It moves around targeting different parts of you and the pain level ranges sometimes requiring medical attention.
Then there are the dull throbbing aches throughout your body that never completely subside. Sometimes they flare in spots and the pain can take you down. But, if you learn to respect the aches, and don’t push too far they can remain a dull pulsing ache.
It’s exhausting to never be comfortable, but you have to learn to live with the discomfort in order to survive.
Sleeping? Well, that’s a whole different matter. A tad difficult to get good quality sleep when your body is constantly hurting. Oh, and restless legs? Wow, they work better than any alarm clock. Then there are the times that your skin feels like it is quite literally crawling with tiny stinging insects, just under the surface so you can’t quite get to them.
We each are individual; unique. No two people are exactly alike. In that same sense, how Fibromyalgia affects or feels to someone will differ as much as we do as people.
Plus, fibrosymptoms are almost fluid, they transform and move around constantly. It’s this never-ending process and so it’s tough trying to put into words something that never stops evolving.
So to answer the really tough question…what does fibromyalgia feel like?
It sucks to be exhausted, confused, and uncomfortable in addition to suffering from varying degrees of widespread pain every second of every minute of every day.
The thing about Fibro Warriors? We get knocked down, but we get right back up again. Well, maybe not right back up, but we get back up as soon as our bodies say we can.
Been a bad fibro flare week. Yuck! Pretty sure an infection is kicking up into high gear and heading out on its road trip through my body. Wonder which route it will take this time…
So far my eyes are looking like I had a wickedly good party, and my sinuses have started that all too familiar throb. I’m so tired that I can’t keep my eyes open, but once they flutter closed I can’t fall asleep. If I am lucky enough to finally drift off, a sound no matter how gentle startles me awake.
I sit up and try again. Rinse n’ repeat as I like to call it. Try to focus on something in front of me, and slowly the eyes begin to close. Then my chin hits my chest, head lolls to the side and I begin to drift. A bird chirps somewhere and WHAM! I’m startled awake once again.
Thanks for letting me rant. I really do try my best to keep things positive, but sometimes reality just plain and simply sucks! Especially, when you’re living with fibromyalgia. And, some days just letting go and getting it all off my chest is the best medicine. Am I right, or what?
Instead of painting on a smile and picking through a massive pile of negative for one teeny tiny itsy bitsy spark of a silver lining, sometimes it is ok to accept that there just really isn’t anything good about today except that it will inevitably turn into tomorrow.
Moan about it, groan about it and maybe even allow yourself to cry a little.
I mean, I’m not talking about allowing yourself to dive into some downward spiral where there are dangers of drowning in the deep dark depths of negativity. I just mean acknowledging that at a particular moment in time, especially during a fibro flare life is not fair and on this particular day it just plain sucks.
Misery Loves Company
Yesterday was an ok day, and I hope tomorrow will be great but today? Well, today is an awful day and I’m giving myself permission to not fake it.
I hurt everywhere and have sub-zero energy. I’m feeling miserable, and for a little while, I’m going to allow myself to sit here uncomfortably in pain and be miserable.
So for now my fibro warrior friends I leave you with a quote from I Love Lucy “WAHHHHHHHHH”!
Yippee! I write like I tweet…or is it that I tweet like I write?
Hey, wait a minute! I tweet and write as I talk. That’s it! No silly, I don’t mean messy. Sheesh. Sure I write messy but, what I’m talking about is this tendency I have to babble in verbal conversation.
When I’m writing, I simply put to paper, or screen if you will, my thoughts exactly as they are flowing. I try not to skip a beat. I try to sound in the written word exactly as if I’m talking directly to you.
It’s tough to keep up with the thoughts, especially with a pen to paper. I type quicker, but I tend to edit A LOT less when I write it. Once I start editing, the tone of free-flowing words dissipates, though spelling errors disappear. Side note – > I was pretty sure I made a spelling mistake when I wrote: “dissipates”.
What was I originally talking about? Twitter! That’s it!
Twitter and writing, or the tone of writing. Mostly what I was going to say was that I love tweeting because, with so few characters, it’s even more fun trying to be witty, and talk about having to think. If you’re looking to sound smart on Twitter, you really do have to put a lot of thought into choosing your words wisely.
That’s sometimes quite challenging. Me? Sometimes I just love a challenge.
Instagram is for me. It’s the place I like to be ?
Fibromyalgia is by any measure a complex syndrome. As I have written (and continue to write) the many articles in the website, I work to answer any question that you might have, and I feel confident that the answers are here. Some of these are also answered on the Facebook postings, in videos, in the blog or informational graphics we provide.
We still have more to cover and convey, so I thank you for being here. What we provide here at Living Smarter comes not only from experience over many years but also the latest science into fibromyalgia, co-conditions and chronic pain. Working as a practitioner/trainer and living with fibromyalgia for over four decades, this is what I do.
These FAQs are based on questions I most often receive through the website and on my two Facebook Pages which together represent a community of over 325,000 followers.
Many fibro websites focus on the primary symptoms of fibromyalgia. They include widespread pain, fatigue, sleep disorders, fibro-fog, and morning stiffness. However, there are many more symptoms and, importantly, not all fibro people suffer with the same symptoms.
For this reason, I have provided an extended symptoms list with each symptom being a link to a treatment protocol, and secondary symptoms detailed within each symptom link as well. I want to also extend a caution to attributing every symptom to fibromyalgia, that can be dangerous. Yes, fibro is complex and affects multiple systems, but we must not miss other conditions.
Is Fibromyalgia approved for disability? Inside and/or outside the U.S.A?
Fibromyalgia is now officially approved for disability benefits in the United States. I have provided the USA’s Social Security Administration’s own words as guidance for those considering applying for disability benefits.
Since I have readers from over 50-countries, it would be impossible to follow each of those countries’ disability claims and allowances, but the information supplied here can be of benefit to anyone seeking guidance on SSI or disability.
What is a fibromyalgia flare and how long does it generally last?
First, it is important to know that fibromyalgia is characterized by wide-spread muscle pain and specific tender areas of the body. However, it doesn’t stop there, because fibromyalgia affects multiple systems of the body, including the nervous system, endocrine system, and the immune system.
The brain and GI tract are often involved as well.
One of the hallmarks of fibromyalgia is a dysfunction in the Central Nervous System. This dysfunction can cause a fibro body to react to things like lights, sounds, toxins, odors, and more. This can cause a lot of physiological stress internally, which often translates to symptoms throughout different areas of the body.
You may often hear that Fibromyalgia is the result of “over active” nerves. Trigger points can also exacerbate symptoms in fibromyalgia by their presence in and around muscles and connective tissue. The endocrine system can become challenged due to the stress on thyroid and adrenal glands.
The immune system is also working overtime, often times due to the primary co-conditions that affect immune status. This is why people with fibromyalgia often describe fibromyalgia as not just living with chronic pain, but like living with a flu 24/7.
People are often confused and ask what is fibromyalgia because they simply don’t understand what this diagnosis means, but let’s jump right to the second part of this question first.
Fibromyalgia is not just a reason to complain. It isn’t an excuse not to work or to get out of other responsibilities by choice. It isn’t a source of pain that comes and goes at the sufferer’s discretion.
While these are the opinions sometimes held by people who don’t believe in or understand fibromyalgia, this is a serious medical condition that impacts multiple systems of the body.
Fibromyalgia is not an illness merely associated with mid-life, as in the everyday aches and pains of getting older. No, it is much more complex than that. In fact, many of us have lived with symptoms since a young age.
In my case, symptoms started at the age of 9, with severe chronic migraine, MCS and later progressing to fibromyalgia. We believe that we must look at all potential toxins, traumas and exposures in early life. Toxic exposures that can actually create a greater propensity to developing fibromyalgia or any auto immune condition.
Fibromyalgia is not what you see depicted in TV commercials. These ads and commercials do not even begin to accurately depict the complexity of fibromyalgia. They cannot, because if they did, they wouldn’t be able to promote their medications for it.
So, in a sense, they are simplifying their portrayal of fibromyalgia in order to continue to sell medications for fibromyalgia. No, living with fibro is not as easy or simple as taking a pill and getting on with your life. In fact, many of us have severe reactions to medications and the side effects only exacerbate symptoms already present.
Fibromyalgia is not muscle strain in one area of the body from “over doing” We do not have fibro in just one area of the body. Yes, I have heard it before. People self-diagnose and say they have fibro in their legs or shoulders or wherever. No, it doesn’t work like that.
For instance, many people can have trigger points around muscles and connective tissue, and these can become activated through a stress or strain. But with fibromyalgia, we have a combination of tender areas, trigger point areas and symptoms in multiple systems. So even a “soft trauma” can activate the nervous system in fibro, unlike other conditions.
Fibromyalgia does not often stand alone. Many of us live with its primary co-conditions, CFS/ME (Myalgic Encephalomyelitis) and MCS (Multiple Chemical Sensitivity) More information can be found throughout our site on these co-conditions.
Fibromyalgia and these co-conditions can make keeping up with daily life challenging, but those suffering from the pain and symptoms of fibromyalgia would give anything to make it go away.
They would gladly take on more responsibility, and they dream of a day when they can guarantee never to miss another important event in the lives of those they love. Just like someone suffering from a heart disorder, epilepsy, or cancer, they simply don’t have a choice.
Fibromyalgia is considered a wide-spread musculoskeletal pain condition, even though it also affects many systems of the body. One of those primary systems is the Central Nervous System.
With fibromyalgia, it can feel like the body is always on alert. Within our website here, we address the many systems and areas of the body affected, from the muscles and joints to the gastrointestinal tract and brain.
Fibromyalgia impacts the immune and nervous system to the endocrine system as well. It can impact any of your body’s more vulnerable areas such as tender areas around the neck and lower back, trigger points in the upper back, to the muscles and bones and the various systems including the endocrine, nervous and immune system.
For greater accuracy, we list some of the secondary symptoms within primary symptom links in our Symptoms List.
Some people consider depression, anxiety, and other mental illnesses a direct symptom of the condition that is just as real as the pain. It’s more likely a consequence of the illness because living with fibromyalgia is stressful.
Too often, symptoms in fibromyalgia can be “activated” from external sources that we are not always in control of. This might lead to a few hours of increased pain or to an extended flare, lasting days or weeks.
With the absence of a cancer tumor, surgical intervention, or even medical scans showing something physically wrong with the body, it’s difficult for some people to realize how much pain is endured by fibromyalgia sufferers.
Many sufferers don’t receive the support and care that they need from loved ones, and even with that support, this is a condition that takes a mental, physical, and social toll.
It is important to determine what is fibromyalgia and what is not. You can visit your doctor frequently with severe pain, stiffness, aching muscles, tingling, burning and extreme fatigue, and they may routinely tell you that there is nothing wrong with you.
They may pick up on some inflammation in your body, but they often can’t determine where it’s coming from. A diagnosis of fibromyalgia typically comes after a lot of testing because you must rule out other medical conditions first.
This is why fibromyalgia is often considered an invisible illness. It’s clearly there, but like many other conditions, you cannot see the pain, you cannot always “see” the symptoms we are experiencing. It’s a chronic illness that can lead to consistent pain and discomfort.
It may also come and go with flare-ups sparking at unexpected and very inconvenient moments. It can be completely debilitating, even when the sufferers want nothing more than to enjoy an active, healthy life.
The good and the bad. You feel good when you are not diagnosed with a life threatening illness. Other testing comes up negative. However, you can feel just as bad when the doctor looks at you like everything is fine. Why don’t you feel fine?
You know that something is not right. This is often the beginning of the journey. You will work with your doctor where you need to, but you will also know that there will be areas of your health that you need to take into your own hands.
We want you to better understand fibromyalgia and all of the symptoms, but at the same time, it can be dangerous to attribute every symptom to fibro. With all of our specific articles on fibromyalgia symptoms, we offer solutions to help you create a better quality of life, but never false cures or cover ups. See, it is important to know what is happening in our bodies. Why am I having this pain? What is triggering a particular symptom?
That is why we do this. Our number one goal is to help everyone with fibromyalgia and co-conditions live the best quality of life possible. No false cures, no quick fixes. Refer back to the interactive Symptoms List below at any time.
Yup, I’m coming out today! Not about my sexuality, but my health. I want to tell everyone that….. I have a chronic illness. I have Fibromyalgia.
Maybe you’re thinking, “yeah- ok, so do I –welcome to the club”; or maybe you’re thinking “what in the heck is Fibromyalgia?”. Well, for me to come out and say this -is a very big deal. Especially since I was diagnosed in 2014 (Four years ago!). I have pretty much been in denial for a few years. I had decided that I wasn’t going to let it affect my life and my goals, until it did, and I had no control over it.
The most important one is that by talking about my illness publicly, I have to admit it and accept it.
I also hope that it will give me some accountabilityin taking care of myself instead of putting my needs on the back burner. I’m sure a lot of us moms tend to do this.
Another reason for this blog is to sharemy experiences to help others and so that others can maybe help me. There are so many wonderful strong women (and men) out there living with Fibro and still kicking the world’s butt; I want to be one of them. I figure what better way to become successful at something than by learning from the others that already walked down that road.
Lastly and honestly, I plan for my blog to bring in an incomeso that eventually I do not have to work my “day job” anymore. However, I’m not counting on this and would only be a perk and a way to manage my illness more easily.
I am married (19 years) with 3 children ages 22, 16 and 9. I work full-time and am working on my BA online part-time. Until recently, I have been juggling all these and my illness fairly well.
For the last 8 months I have been in the worst flare I have ever experienced and have been unable to work or attend school. Let me tell you, it has been a huge “wake-up call”. I am realizing how I need to stop ignoring my Fibro and embrace it, so I can manage it.
The hope is to have posts that any working mom can relate to, but especially those with challenges like physical and emotional disabilities. So there should be something here to relate to for the working mom, student and wife.
I am going to go celebrate launching my site and my first blog post now! I look forward to hearing from you and learning from you! Please feel free to follow me on social media for a daily dose of motivation and positivity. Talk to you soon!
Fibro–Rash! Is this really a thing you ask? Yes, apparently it is a thing. If you have trouble with any kind of rash all over your body and you have Fibromyalgia, you could also have Fibro-Rash. I just visited my dermatologist because my rheumatologist wanted me to rule out psoriatic arthritis. I have had itchy skin for many years and just thought it was my dry skin. It turns out that it is really folliculitis, an inflammation of the hair follicles brought on by Fibro -and I do not have psoriasis-whew! My doctor said that there are ways to ease the symptoms but the only way to really control it, is to control the Fibro. Sure, no problem that is an easy fix….(she says sarcastically.)
I’ve always had sensitive skin, so it doesn’t surprise me that my Fibro symptoms come out through my skin as well. People with auto-immune illness and chronic diseases are more susceptible to folliculitis. So, it makes sense that I really started to notice something was wrong when my flare began. My chest broke out into a red, blotchy rash which waxed and waned with my stress level. It was like my body was doing whatever it could to get me to stop and notice. I was waking up scratching my legs at night – it was horrible!
Cure Joy that I found with a simple google search. Please follow the link for complete directions. I have tried a couple of these, please leave your experience in the comments below.
6. Aloe Vera-antibacterial and anti-inflammatory. This is the aloe vera that I use. I love it and it has tea tree oil in it already – I apply after a shower daily.
For me, this was just another reminder that I have Fibromyalgia and I can’t deny or ignore it any longer. We really need to take care of ourselves, make time for just you- even if you have to schedule it!
7. Since I first wrote this article a couple years ago, I have learned a lot about Fibromyalgia. In the last year or so, I have really been focusing on controlling my symptoms with my diet. I go into a lot more detail (see link) of how an elimination diet can help you improve your fibromyalgia symptoms.
8. If you want to try an intolerance test to get to what might be causing your rash faster I recommend 5 Strands Affordable Testing, use fibro cure 10 for 10% off. I used this service and hope to write an article on it soon. It really helps narrow down foods that may be bothering you.
Rashes can be scary, if you have one I recommend going to your doctor. I hope that my story has brought you some comfort and that if you do experience this, you now know that you are not alone. Not only are you not alone but there are steps you can take to relieve the misery.
