Dear Fibromyalgia

Category: Fibromyalgia Conditions

Explore the conditions associated with Fibromyalgia, their symptoms, and how to manage them for improved well-being.

I Survived the Fibromyalgia Flare

Last week I found myself in the worst flare of my life. After a month of mounting stress, marital grumblings, and the sheer psychosis of living chronically ill I hit bottom. Bottom when you have Fibromyalgia really hurts. So I proceeded to walk around stooped over like a little old lady holding my lower back, wailing and crying and gnashing my teeth over how absolutely awful everything was. Then the anger I try so hard to keep tucked tightly under cover flew up and gave me waves of new aggressors to aggravate my rapidly crumbling illusion of reality.

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Oh, I was a mess. And Fibromyalgia saw this weakness and POUNCED, took her claim back over my body. Elephants ballet danced with thunderous weight across my upper back, the pain from my lower back radiated all the way down my legs, into my feet for crying out loud! My hips forgot they were made to swivel and when I walked my body weight threatened to crush my internal organs. It was as if somebody pushed the rewind button and took me back to 2006 when I was disabled from Fibromyalgia and Chronic Fatigue Syndrome/ME. No wonder I was such a mess, I thought to myself. This is horrible! I became convinced I was never going to run again and immediately crumpled into a Jello-ing heap at the thought of gaining back the 30 lbs. I just found out I have lost this year. How was I going to write a blog with a positive spin on how to survive Fibromyalgia? How was I going to write the book I am working on to raise awareness? How on earth could I keep the burning embers of The Fibromyalgia Crusade stoked and roasting? How, how, how? For there was just so much pain.

The life I know and have been working so hard to rebuild ceased to be a reality as the evil fingers of cranial destruction pushed on damaged neurotransmitters and overactive pain receptors. I experienced agony beyond a medicate-able amount, sending me not only through the roof but darn near jumping off it when I got there. Am I going to get my life back, or is this just the way it is now? I seriously wondered. Then I recalled with acute clarity the first time I asked myself that question and how many years and how much work lay between then and now. I am just not up to it, I can’t do it again, I reassured myself as I slept and watched mindless reality television, looking for any escape. But something strange happened as I took leave of my stress and took care of myself. I started to feel better. Slowly but surely I started to feel better until one day I woke up and had to remember the flare, for it had passed. But I have renewed in my efforts folks, shouting from the rooftops as loud as my little lungs will carry how absolutely horrible Fibromyalgia is and how living in that unbearable pain is perhaps the worst thing in the world. God bless all of us who suffer from this illness.

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/11/2022
The Fibromyalgia Spectrum

Recently I posed a question in Fibromyalgia Support Group, our support site on Facebook. I am looking for more information about this Fibro-monster, but not what I can pull up in a quick Google search or another strange set of statistics gathered from who knows where. I want real honest to goodness patient-based information from the patients I interact with every day. The real people that have this illness. For there has got to be some commonality among us! So I asked, inquiring minds wanting to know if you were in a happy time in your life when you first got sick with Fibromyalgia or were you super stressed and unhappy or things were not going all that well? I got a good cross-section of responses, I would say about 70 by the time it was lost in the feed. And I did get some sort of a clearer understanding about how this illness strikes us differently.

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See way back when I was on Prednisone to treat strokes I quickly realized one of the amazingly good benefits of that crazy-lady inducing drug was I felt no pain! It was a cruel joke, for Fibromyalgia was all but gone, but living life on steroids was not exactly my cup of tea either. I noticed some people did not have the same anti-inflammatory response to the drug that I did, though. Now Fibromyalgia is not supposed to be an inflammation-based condition. There is no actual damage to our ligaments, tendons, and muscles, right? Does it just feel like it? So I asked, and the response seemed to be split.* About half the people experienced total pain relief on high-dose steroids and about half did not experience any at all. Well, that seemed pretty big to me and I decided there were two types of Fibromyalgia, at least. Inflammation-based and non-inflammation-based. For it only seemed the rational conclusion. I got a similar response about that happiness question.* There were plenty of folks that were happy in life when Fibro fanny-smacked them off their feet. They mostly seemed to be able to pinpoint an accident or illness with a definitive start date they never recovered from.

But for those that could not say, for example, “I was very happy but in June of 1992 I slipped and fell and have never recovered,” it was not nearly as clear cut. I read a lot of, “It kind of snuck up on me” and “I think I have always had it” type of answers from the folks that were indeed stressed out and unhappy, generally speaking when they got their Fibro fanny-smack. I was one of them myself. I have always been a hyper-vigilant little birdie, the dominant personality type that gets Fibromyalgia. When I got sick I had a very stressful job in which I was eating, sleeping, and breathing. Then I went through a sort of “hell week” and it just got worse from there. So my rational conclusion was that there was an emotional link the unhappy patients recognized but the happy patients with sudden onset did not experience as significant. Again, just a sweeping generalization, and I am sure all of this has been explored by doctors and scientists with more brains in their left pinkie than I had at the height of my cranial development. But now I feel I have witnessed two very distinct and opposing symptoms of Fibromyalgia. Either inflamed or not, and either unhappy or not. Of course, the biggest question in the room is why some folks get it and others do not, given the exact same set of circumstances? Maybe that is where the genetic component comes in, which would make it three distinct types, or a strange mash-up of a few at a time in each person? Who knows! But maybe if they split up the patient population based only on the experience of specific symptoms, they may realize we are as different as we are alike, and actually get somewhere with that research. But with my luck, I would be the one to have the type that does not come with a cure. Touche my friends, touche.

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/08/2022
The Stigma of Fibromyalgia

A thought just suddenly popped in my head, seemingly from nowhere, and I am finally able to put my finger on exactly what the stigma of Fibromyalgia brings to the table. See it’s not that we don’t want to get better or are lazy or are working the disability system or are crazy, drug-seeking or just feeling the normal aches and pains of age. That is what the ignorant must believe for some odd reason of their own. But I am talking about the rest of the folks we know and come into contact with. The ones we expect support and belief from. Their reactions can lie from fascinatingly interested (my favorite of course) to apathetic, sympathetic, or just plain uncomfortable. And oftentimes we are treated poorly, our proclamation of ill health met with skepticism and the truth that lies underneath that attitude. The belief is that if you would stop indulging in this problem of yours and just assume yourself better, you could have your life back. And that is all it is my friends. Dismissed as optional. Once I was able to assess this fundamental truth I felt the scales fall away from my eyes. It was extremely easy for me to picture why we are not taken seriously.

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I remember, long before I got sick, hearing about something called Chronic Fatigue Syndrome. Maybe it was towards the end of college, in my early 20’s. And I distinctly recall thinking to myself Well then why don’t they just get enough sleep? Go take a nap! Many moons later I got a very serious and debilitating group of infections with the same name, but in no way did the name fit the disease I was afflicted with. The debilitating, painful, life-sucking sickness that disabled me. And I understood. But you can’t really understand until you have it. Unless you have it. In the meantime, we are made to feel frivolous and indulgent about being sick! How about the disappointment and inconvenience factor? We are reminded, often in painful ways, how unacceptable our behavior (illness) is, or how harshly judged we are, and not even behind our backs! I struggled with this for years. Especially with family. Most of my friends had fallen by the wayside once I took ill. But family gathering, oh those were some doozies! As the salt of the earth traditionalists, the men watched football and women cooked and cleaned. Frequently it was inquired as to why I was only bringing one dish. Whispers wisped around, tongues clacking that I was not helping enough with food prep or clean-up. And inquiries straight to my, and my husband’s face, as to why on earth we don’t have children yet and need to hurry up already! We ain’t gettin’ no younger! Oh, that was an ugly one. The lack of empathy was never so strong as it was on that topic.

And all this judgment and criticism and refusal to accept that I was sick with something real only served to make me not want to be around them! It took a lot of strength, forgiveness, and self-love to get to the point where a complete lack of interest in my medical condition rolled off my back. And some days I am up to it, strong enough to deal, and others I am not. But I still am cut to the quick when I am challenged over my diagnoses. When it is implied, or blatantly stated, that I am just dramatically nurturing depression or am lazy or worst of all, don’t have good manners! Everyone suddenly turns into a diagnostic technician, doctor, herbalist, or pharmacist. Especially the ones that had a friend who had Fibromyalgia and just did and is all better now! So guys and dolls, we have a lot of work to do. A handful of doctors have picked up this diagnosis and sought to find a cause and cure. A bunch of organizations has been formed to spread awareness and raise funds for research. And those are SO important to advancing our cause. But the biggest social impact to raise awareness and validity of this illness lies with the 6 million and counting in the USA alone that have Fibromyalgia. We are the voice of this illness! We are the normal people walking around amongst our peers that must stop and inform everyone our lives touch that Fibromyalgia is real, we have it, and we are not going away because it is an inconvenient or disbelieved illness. I get a lot of inquiries as to what that purple band on my left wrist is for and cherish each opportunity to explain, educate, and ultimately make the reality of living with Fibromyalgia a much more decent place to dwell.

https://www.teepublic.com/stores/fibromyalgia-store

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For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/07/2022
Fibromyalgia in the Real World

I had an extremely eye-opening and revealing thing happen to me this weekend. Whilst I was dealing with some minor family upset, I Fibro–crashed. All my energy had been spent and exhaustion socked me square in the jaw. I became stiff and inflamed all over my body. I hurt and no position made me comfortable, sitting, standing, lying down, it all just ached. I became foggy and hazy in my brain and the slightest bit of stress caused catastrophe to my central nervous system, meaning I was a bit of a blithering mess! It was a meltdown of all functioning parts. So as I am Frankenstein-lurching around someone very close to me started pouring their angst out, about the situation I could do nothing about, and instead of being able to listen and give comfort or care, I lost it. OVERLOAD ALERT! I sat there looking at this very important and supportive person in my life like they were from Mars. I could not understand why I was their chosen therapist for the moment when I was so clearly not coping well myself. I mean I had all but a red siren flashing on top of my head screaming FLARE! Couldn’t they see this? Didn’t they know?

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But the answer was no. In the midst of their emotional reaction to what was going on, they leaned on someone you would typically be able to lean on. And although I have complained of fog and fatigue and exhaustion for years, it turns out I had never properly explained the stress factor. See we don’t process stress the way an undamaged brain would. Very low threshold, very extreme reactions and the aftermath is a deflated ball of a person kicked into a weed-filled corner of the schoolyard. They could not figure out why I was freaking out and I could not understand why they were utilizing me as a pillar of strength when I was clearly a puddle on the ground.

Luckily we had a chance to remove ourselves from the situation, I indulged my flare and pretty much spent the weekend at the pool, and they came to grips with their emotional entanglement. We were then able to talk and assess where our communication breakdown occurred. Through this exchange, I learned something very important about myself, Fibromyalgia, and how to manage it in a demanding and stressful world. Never take anything for granted. For in your mind you may have explained all the in’s and out’s of living with Fibromyalgia until you are blue in the face, dotted all your i’s, and crossed all your t’s. And sadly most of us have lost friends or family that refuse to accept, believe or understand our illness. But the ones that are still there, the ones that offer support and show unconditional love and stand by your side, are the ones I am talking about. Those are the ones we cannot just assume exist in our brains and understand our experience. Those are the ones we must constantly remind ourselves what we can and cannot do. In explaining all this I realized I learn more daily about how Fibromyalgia impacts my life through my efforts to manage it, so how could I possibly expect another person to be aware of something about me that I myself have just learned? In light of this new revelation, I am redesigning the information cards for The Fibromyalgia Crusade. On the back, I am going to list, in common spoken terms, how living with Fibro impacts our lives. So please feel free to comment, email me or throw your 2 cents in at The Fun House. We are going to progress awareness of this illness if it is the last thing we do. It is simply too important not to.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/06/2022
All these positive Fibromyalgia experiences

As I have been opening my mouth more and more about Fibromyalgia, The Crusade, awareness, and the general passion of my life to anyone and everyone that will listen I keep having positive experiences! Where I used to get glazed over expressions of distracted disinterest I am now finding myself bombarded with questions of genuine curiosity. I don’t know if the difference is me or Fibro. No longer mopey and sad-faced as I mumble that I suffer from an obscure chronic illness few have hardly heard of or know much about, I can only surmise it’s because I am now chipper and excited as I delve into my cause. I am a much more interesting and engaging person to talk to as I summarize this strange neurological condition that results in severe and widespread pain, cognitive confusion, and horrible insomnia. The cause is unknown but it affects up to 6 million people in the USA alone and is quite debilitating (that’s my quick summary, by the way).

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A few weeks back I was on the phone with GoDaddy. Abacus girl was attempting to navigate the world of domain names and websites and the rep started asking me about Fibromyalgia. As I was explaining what The Fibromyalgia Crusade is all about he was asking sincere questions to further his understanding. It was amazing! I clearly taught him more about Fibro than he did me about domains (that’s okay, he did what I needed him to do), and at the end of our conversation, he thanked me for my knowledge, educating him on something he knew nothing about. Then the topic of what we did for a living (haha) came up while I was serving Jury Duty. The jury and I were waiting in the deliberation room and I told them I was starting a health awareness campaign. They asked me what for and when I told them, two ladies quickly took over the conversation and started filling in the rest of the group as to what Fibromyalgia is! I was shocked and thrilled! Of course right as we were getting to the meat of the matter the bailiff came in to lead us back to court, but it was awesome nonetheless. Then yesterday I called the phone company to figure out why my bill had gone up. When she inquired about my internet usage I told her I was a blogger and online for like 10 hours a day. She asked what I blogged about and when I told her she was thrilled! Her sister-in-law and best friend both have Fibromyalgia and she jotted down The Chronicle’s web address to share with them. All of a sudden the world seems to care or at least want to know more about Fibromyalgia!

We have to hit this hard, my fellow crusaders! The world is listening now, and we need to start singing and not shut up until life with Fibromyalgia is manageable, we are no longer blamed for our illness and the general public has at least a common knowledge of it like they do M.S or Lupus. The more we talk, the more others know and the more they know, the more seriously we are taken. It is going to take HUGE amounts of education, fuss, flurry, and promotion for us to turn acceptance and comprehension around but we can do it! So start singin’… Start talking to anyone and everyone that will listen. But I believe the way we go about it is just as important as actually doing it. Take your personal experience out of it. Refer to yourself as part of a campaign to bring awareness to an illness you actually suffer from and then keep it general! Educate them with a brief summary that you are comfortable pulling out of your back pocket on demand and if you are met with doubt, skepticism or criticism kindly find a way to remove yourself from their presence and run away as fast as possible! Don’t take their ignorance personally, let it dampen your passion. Then try again with the next encounter, and just keep promoting, educating, and furthering our cause. As we all know Fibromyalgia is not just going to go away, and we are not going to stop until something gives, for the current state is unacceptable. So open up that throat, caged bird, and sing! Sing of a life of pain imprisonment and medical frustration. Sing about the loss of function and limited treatment options. Remember, we are on a crusade and we are going to win!

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/05/2022
The Color Purple is for Fibromyalgia

As most of us are well acquainted, the color of our support ribbon is purple. Purple is a traditional color of royalty, the color of the Crown Chakra which is linked to the crown of the head, the nervous system, and the brain (okay can someone please say Fibromyalgia!), and is representative of pure thought. The Purple Heart represents courage in the military and pride in Christianity, just to name a few of its associations. Oh, purple has assumed an enlightened and vast embodiment throughout history. The study of purple in psychology has been shown to uplift, calm the mind and nerves (here we go with Fibromyalgia again), offer a sense of spirituality, and encourage creativity. “Purple embodies the balance of red’s stimulation and blue’s calm… With a sense of mystic and royal qualities, purple is a color often well-liked by very creative or eccentric types.”* We are in very good company with the color purple!

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Today a Facebook Fibro–sister mused she wished we had a code to represent how we are feeling. She is sick of complaining all the time but still knows how important it is to communicate her pain to those that truly understand, her support network. I thought this was an excellent idea and tried to come up with a “code“, which inspired all sorts of hilarious comments, acceptance, and criticism at the Fibro-Fun House (my Facebook page for those that have not joined it, and should!). I figured going off our designated ribbon color would give us an anchor, and allowed my mind to absorb the color purple in its infinite number of shades, tones, and hues. As I traveled down this imaginative exercise I felt the lighter the color the lighter the symptoms, and the deeper the color the more raging the pain. So I painted a pretty little picture in my mind of Fibromyalgia as viewed through a purple kaleidoscope. Lilac starts out soft and light and represents a pretty darn good day. Mulberry deepens and intensifies slightly and marks the middle of the road, not great, yet not horrible either. Amethyst finished the journey with all-consuming PAIN FROM HELL, one of the deepest shades of purple. So I posted my idea and have spent the better part of the day cracking up over the reaction it has been getting. I also LOVED knowing how my fellow fibrates were doing, many more Lilac’s were out there than I realized! And for the Mulberry’s and Amethyst’s it was helpful to know how you were feeling because so much of the time we just shut up about it, stuck in an eternal Groundhog Day of repetitive complaining even we get sick and tired of hearing ourselves grumble about.

Quite a few hated my color choices! “Too complicated…I won’t spell them right…I can’t remember that…I have Fibro-fog!” And I hear you, I do, but there is something off-beat, individual, and funny about comparing the wreckage of our lives from this illness to flowers and gemstones. It somehow removes the ownership of the pain and places it in another dimension of the reality of living with Fibromyalgia. So for those that are willing, interested, or care I would love to try this out for a week or so. Come to the Fibro–Fun House and let us know how you are feeling for the day. Let us know if you woke up Amethyst (all-consuming) and have sailed into a light Mulberry (middle-of-the-road) because something is working for you. Let us know if you started the day out Lilac (light) and have spiraled into an Amethyst-tinged Mulberry because today is simply sucking. Try it out! See if it helps to take some of the pressure off, some of the misery, some of the ownership of the pain. See if it helps to have a way to communicate to your fellow Fibrates, your true comprehenders, without having to spell out the literal misery we desperately bang our heads against the wall for the non-fibrous in our lives to doubtlessly comprehend.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/04/2022
I am so sorry I have Fibromyalgia

I frequently find myself either bitterly acting out or saying this to those around me. Apologizing to those whose lives are affected by my illness, as though it is something I did or like or want or don’t suffer horribly from myself. As hard as Fibromyalgia is to manage, the guilt on top of everything else is ridiculous! Do other chronic illness sufferers feel the same way or is this particular to our condition because science and medicine are still so clueless about it? Because there is a massive “blame the patient” stigma attached to Fibromyalgia? I honestly don’t know. All I know is that when it comes time to take care of myself because I am in a flare or have not slept or am hurting so bad I simply cannot get up off the sofa I feel guilty. Guilt tinged with absurd anger, and usually jump up to try to perform whatever task is in question. Many ‘o many a time I have picked a fight with my husband simply by projecting this onto him. I take my own disappointment in myself, my own frustration at my limitations, and get mad at him for treating me like I am letting him down. Poor guy! Still wonder why he puts up with me… He will just stand there helpless as I freak out and slam the dishes out of the dishwasher, into the cupboard, or begrudgingly start throwing laundry around, stuffing it into the washer. Sometimes he gets mad back, if he is short-tempered already, telling me this is my issue, not his. Other times he shows me compassion and tries to get me to be nicer to myself. Either way, it sure sucks to be him right then and there!

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Why is it so hard to show me kindness and self-respect? I know Fibromyalgia is “not in my head”, yet my actions sing a different tune! I know how to take care of myself to minimize the symptoms I suffer from on a daily basis, yet feel it frivolous to do so. One of the biggest personality flaws that reared its very ugly head when I first became so ill with CFS & Fibromyalgia was the need for approval to be sick. I needed it everywhere, from everyone! Mom, dad, husband, friends, coworkers, bosses…not to mention doctors and therapists! It was as though if everyone would get together and collectively say “Poor Leah, she is so sick!” I had the permission I was looking for to take care of myself. But there was NO ONE lining up to do that. No one knew what was wrong with me, it was living hell finding a doctor to even take me seriously, let alone people that I crossed paths with on the streets of life.

The emotional growth I went through on this 1 issue alone was massive. I had to really get to the root of why it was so important for everyone to “agree” that I was truly ill. Did this stem from childhood need for acceptance? Did I need permission to lay down my “type A” evil ways and just be? Was I completely lacking the self-esteem necessary to be nice to myself? All I know is that accepting that Fibromyalgia and Leah had to come to terms with each other was something that happened bit by bit, little by little, inch by inch. I slowly peeled back the layers of emotional weakness that needed so bad and realized that if I was to survive this monstrosity it was only going to happen because it was on my terms. Getting to the point where the opinions and judgment of others regarding my methods of managing myself were of little importance to me took years. It is still something I struggle with, but I can sure say that my need for approval has gone from Amethyst to Lilac and that makes it much easier to take care of me.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/03/2022
I am sick of fibromyalgia apologizing

I am sick of apologizing for being me. I am sick of apologizing for being sick and not as productive or efficient or clear-headed as I once was. I am sick of apologizing for the passion that consumes me to get Fibromyalgia out of my brain and actually doing something to better our lives. I am sick of apologizing for not going to bed early enough or keeping my house clean enough or taking the time to make myself pretty every day. I am sick of apologizing for not being available at the drop of a hat whenever someone else has a day off and wants to play. I am sick of apologizing if what it takes for me to manage my illness infringes on what you want to do for the moment/hour/day. I am sick of apologizing for having to rest and take it easy after a lot of activity. I am sick of apologizing if my day gets behind me and I need to write and post my blog after the sun has gone down. I am sick of apologizing for not being able to do what others want me to do when they want me to do it. I am sick of apologizing for checking in on The Fibromyalgia Fun House after being away for a while. I am sick of apologizing for not answering the phone when I am in a really bad mood or busy or just don’t want to talk to anyone. I am sick of apologizing for taking care of myself and setting limits and boundaries that section me off from you. I am sick and tired of apologizing to you, but more importantly, I am sick of apologizing to me!

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I am in a pickle. It takes money to start a business, legally protect your ideas, hire the professionals necessary to ensure you are not making colossal mistakes that could cost you a fortune or your intellectual property in the long run. Yet I can barely pay my rent, my husband is working double-time and is about ready to collapse and I had to quit my job because after 10 years, 5 of them battling CFS & Fibromyalgia, 2 strokes finally made it just too much to “power through” anymore. So how do I do this? It’s a dog-eat-dog world out there, and plenty of people are lurking around the corner waiting to steal what is not theirs. How do I get this off the ground and make the impact necessary to effect change in our lives, the life of the Fibromyalgia patient, and not sabotage my own existence? Do I just guess and do my best as I go? Pray, I don’t make poor decisions that result in huge and costly mistakes down the road? Well, I think so! It’s so easy for me to preach to all of you, my readers and Fun House friends, to relax and realize you are doing the best you can with what you are given. One thing I am sure you all have noticed by now is how gifted I am at giving advice that I do not take!

So I am going to take a deep breath and draw the line in the sand where I stand. I am going to stop apologizing for not being the girl I was in the past. Always up for a good time, easily distractible, and not terribly focused on my goals and objectives. I am going to take pride in my work and recognize that when starting a business it is not unreasonable to invest more time, energy, and resources than one have available. I am going to stay calm and clear in my mind and spirit. AND I AM GOING TO STOP APOLOGIZING! I have done nothing wrong but get sick, grow up and define my purpose. I am proud of who I am and anticipate the momentum, the results of getting The Fibromyalgia Crusade off the ground will bring that badly needed break to the pressure and confusion that consume me. And I will start to see the change it will bring to the lives of each and every Fibromyalgia patient involved as we stand together as 1 strong voice, a collective patient body that will not take the doubt, criticism, or ignorance that is serving to keep us suppressed and down any longer.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

08/02/2022
How can I explain Fibromyalgia?

I attended the birthday party of a good friend last night. Just an intimate and impromptu get-together at her house, I found myself given the opportunity for the first time since I have taken up the proverbial Fibromyalgia cross to promote my condition and raise awareness, the new charge of my life. But I was at a loss as to how to explain it without launching into 20 minutes of background information to answer each question. It is a messy and complicated experience with so many variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a “30-Second Elevator Ride” synopsis that clearly defines, explains, and promotes the cause. So today amidst the booming NY Giants (GO GIANTS!) game pulsing from my big-screen, I set out to research and condense the best, most effective, clear & concise synopsis of Fibromyalgia that will get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise it, not to diss the attention their advertising brings, but really WHAT IS FIBROMYALGIA?

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“Fibromyalgia affects between 2-6 million Americans. It is a neurological condition stemming from the central nervous system that produces a sensation of severe body pain, stiffness, cognitive impairment, fatigue & insomnia. Fibromyalgia patients frequently suffer from other symptoms and complex medical conditions as well. It is believed to be caused by a cluster of factors working together; genetic mutation susceptibility, infections, and a specific trauma or injury. There is no cure and prescription treatments offer limited relief with high incidents of side effects. It is a lifelong, non-degenerative condition that can be managed using a holistic, total body approach to wellness but the quality of life of a Fibromyalgia patient is forever altered as basic life functioning diminishes.”

Well, there you have it, folks! This is Fibromyalgia as Leah views it. I tried to keep it scientifically loose, comprehensible to the average person, and broad enough to encompass the variety and flux of symptoms and severity we all suffer from. Now I just have to commit this to memory (fibro fog!) and pull it out any chance I get. If I keep the focus off my specific experience and make it more about a general condition many suffer from I believe that will go a long way to promoting the “realness” of this awesome predicament we find ourselves in.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/31/2022
The Fibromyalgia life cycle

Fibromyalgia has come a long way since I was diagnosed in 2006. The FDA approved Lyrica a year later and overnight it went from “being in your head” to a real condition…for some medical professionals. Not all jumped on the bandwagon because there is still no definitive test to confirm the diagnosis, but it was mildly legitimized. At least there was a sector that believed us, that we were hurting, throbbing, on fire inside, crushing ourselves as we walked, not just crazy or lazy or wimpy. Then along came Cymbalta in 2008 and we were given another win, another “option” in managing raging invisible pain. Savella came along last year and has rounded out modern medicines attempt to give us our lives back. For some these drugs have worked wonders, for others, they have caused the disaster. For many, it lies somewhere in between, but at least the word Fibromyalgia has some sort of an association with the general public. When I tell someone I have Fibromyalgia I say, “You know, the commercials for Lyrica?” and they usually nod their head with a vague sort of recognition, not at all getting it, but at least I don’t sound like a lunatic mentioning it for the first time. But Fibromyalgia awareness has a LONG way to go.

As I have connected with hundreds of fellow fibrates and we exchange stories, methods of management, frustrations, and sorrows accompanied with this disease I have become aware of a vicious pattern, what I am calling The Fibromyalgia Life Cycle… The potential Fibromyalgia has to completely destroy a person and take down their lives is astounding. Time and time again my heart bleeds as I listen to tales of broken marriages, lost jobs, degrading doctors, and denied disability claims. These patients suffer body-wracking pain while they watch their lives flush down the toilet, barely able to get out of bed and do anything about it.

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This is the pattern of the worst-case scenario, what happens all too often to entirely too many people:

1. A person gets sick, develops horrible pain and it does not go away.

2. They go to the doctor who runs a bunch of tests and tells them they are just fine, nothing is wrong. If they are lucky the doctor believes them and offers them some drug or another to help with the pain.

3. The pain, fatigue, and insomnia progress to the point that it’s all-consuming. Living life as it was before is just not possible and personal relationships begin to suffer, some are even lost as their significant others flee the insanity of a very sick person given very little help getting better. Many refuse to believe or understand the incredible pain and push it off as the patient’s fault or a mental problem. The ability to parent their children, maintain relationships and friendships, or exist as a normal person dwindles down to nothing.

4. The capacity to do their job is compromised as more and more days of work are missed and important information “forgotten” in the file of fibro–fog.

5. The job is gone, and the health insurance goes with it. Now living on unemployment or disability (if they are lucky enough to have that) and Medicare, all the while the disease progresses and makes life damn near unlivable!

6. SSI Disability claims are repetitively denied due to there being no firm, clinical test to “diagnose” Fibromyalgia and the full impact it has on a person’s ability to function or doctors to support the depth of destruction this disease holds over a person life.

7. Left horribly sick with poor medical options and no income, one better hope someone is still around to offer some support and let them move in…

And there you have it, the 7 steps to hell! Now many are fortunate enough to have some support network, personal fight, success with medications or alternative treatments, or income to stop this destructive cycle in its tracks. But the point I am trying to make is that this can happen and does happen all too often. This is why I believe my strokes were the paddles to my heart to wake me up and open my eyes to how incredibly lucky I am to have survived Fibromyalgia. I am making it my personal mission to lead the charge to change the reality of living with this disease for up to 6 million of us in the USA alone. Way too many still discredit this disease and it is time for this to stop! Science is tick-tocking at a snail’s pace in figuring out what Fibromyalgia really is or how to cure it, if possible, or treat it at least. We all know it will not kill you, just make you want to kill yourself. So stay strong fellow fibrates! We are going to change the face of living with this disease.

https://www.teepublic.com/stores/fibromyalgia-store

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

07/31/2022