Total Fibro Weirdness

Chronic illnesses always tend to throw out little surprises along the way and Fibromyalgia is no different.  It always seems that when I feel I have things under control and have grasped some understanding of what’s going on something totally weird pops up out of nowhere. 

It was a few years ago when I first experienced the red burning skin.  The first time it happened on my left upper arm.  The second time was on my face and now this morning I woke up with it on my left arm and face.  It’s absolutely horrible.  If you have experienced this you know that it’s like a very bad sunburn and you start resembling a tomato.

I realized today that it seems to occur when I’m extremely stressed.  Have any of you experienced this?  It gets to the point where I want to pack myself in ice.  The burning can get extremely intense and the redness is just so weird.  Fibromyalgia is just weird.  I would end up with an illness that makes absolutely no sense whatsoever. 

I hope everyone is as pain free as possible.  JGentle hugs J

I'm Not Crazy...

I’ve come to the conclusion that no matter how much research proves Fibromyalgia is a real medical condition that there are some people who will still refuse to believe it.  I will never understand this, but everyone has the right to believe what they want to believe.  This is my life though, and it’s my choice on whether or not to associate myself with these kinds of people and my choice is to disassociate from them.  I can’t learn to cope when there are so many people in my life telling me that all I need is a psychiatrist and I’ll be just fine.

Over the past couple of years I have let people bring me down, break my heart and make me feel absolutely crazy.  I refuse to let that continue.  If I have to get mean, even if I have to yell and push people away, I will stand up for myself.  Those people I push away obviously don’t have a place in my life anyway. People might as well have a reason to call me crazy.  I have kept quiet for so long and I’ve spent too many nights crying myself to sleep.  If I don’t learn to be stronger for myself then I won’t be able to survive this monster.

I hope everyone is having a good day.  *Gentle Hugs*  

Don't Give Up on Us

Accept the fact that I am sick and I will show you that I’m still capable of many things despite my illness.  Ignore my illness and treat me as if I’m simply crazy or lazy and I will disappoint you countless times.  In the lives of those who are chronically sick acceptance and understanding means hope for a better tomorrow. We’re not asking for you to throw us a pity party and we’re not looking to be saved.  All we want is to not be shunned for having an illness that we have no control over.  No one in their right mind would ask to have a chronic illness especially an invisible one like Fibromyalgia, Chronic Fatigue Syndrome, ME or Lupus.  The only thing worse than having an incurable disease is having one that no one believes is real.  Not to mention one that has no effective treatment.  We didn’t choose these lives, but it’s what we were given and we’re learning to accept our fate and live our lives as best as we can.  Our goal is to keep living…keep surviving even though we’re faced with the thoughts of wanting to die on a regular basis. We don’t want to give up, so please don’t give up on us.

We Know...

I started writing a post a minute ago and realized halfway through that it was becoming angrier by the word so I deleted it all and now I’m starting over.  I don’t like being angry even though sometimes it’s hard not to be when people you’re close to can’t accept that you’re really sick.  I know that’s something we all go through, but if we have one person in our lives who will go to bat for us no matter what then we should feel blessed and keep on fighting.  We know that our illness is real.  We know that what we had to go through to get diagnosed was excruciating.  We know that every day we have to fight just to be able to have some kind of normalcy in our lives.  We know.  They will probably never know unless they wake up one day and find their lives turned upside down by this invisible monster just as we did.

We have to push on past the negativity and passed the judgment.  We have to keep living even though sometimes dying would be so much easier.  It’s hard and it makes us cry, but it also makes us stronger.  This is a life we would have never chosen, but it’s ours and it can be totally awesome if we let it be.

I hope everyone has a great day. *Gentle Hugs*

A letter from your chronic condition and a reply...

This is another one of my favorites from butyoudontlooksick.com.  If you guys haven't checked out this site please do.  It's absolutely awesome.


To whom it may concern:
Congratulations! You have been selected to be the host for (any chronic condition — RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms — and may even deal with several of them at the same time.
–Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain — it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repetoire of pain categories, so updates are to be expected.
–Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes.
–Extreme fatigue (Now remember, this is not just being “tired”. We will suddenly “pull your plug”, so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.)
–Poor balance, lack of coordination. Let’s just say you may walk or talk like you are drunk — even if you haven’t had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to
understand what it is like to be drunk and to have a hangover.
–Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them.
In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition:
The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs.
Tthe ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back.
The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average.
The ability to play and run with your children like you did before.
The ability to have a “normal” social life.
The ability to accumulate sick days at work/ school to earn the perfect attendance bonus.
As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.
Sincerely,
Your chronic condition
_________________________________________________________________
Dear My chronic condition:
I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind — you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that
you have given me, things I never could have experienced had you not come to possess my body.
You have given me:
– strengthened prayer life and increased dependence on God’s grace and strenth, rather than my own
– renewed friendship with strong, close, true friends.
– appreciation for every precious moment I am given. A gift that is sometimes lost on the “healthy”.
– growth in character, perseverance, and hope.
– inspiration for to help others.
– more compassion for others who are suffering.
– better knowledge of my own body & health.
– a reason to eat more nutritiously and take care of myself.
– reasons to rest when I need it.
You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life’s journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,
ME
Article written by Brandi Lasnick, © 2007 butyoudontlooksick.com

You Know You Have CFS When...

I came across this and loved it.  It fits with having Fibromyalgia just as well.  Sometimes you just have to laugh at all the silly things you do because of these crazy illnesses.

You Know You Have CFS When...
Author Unknown

...when you are cautioned to slow down by your doctor instead of by the police.

...you have a choice of two temptations and you choose the one that will get you home earlier.

...you realize that caution is the only thing you care to exercise.

...you don't worry about avoiding temptation. With CFS, it will avoid you.

...getting lucky means you found your car in the parking lot.

...you're sitting in a rocker and you can't get it started.

...you don't care where your wife goes, just so you don't have to go along.

...you wake up with that morning-after feeling, and you didn't do anything the night before.

...the doctor says "I have good news and bad news -- the good news is that you are not a hypochondriac..."

...you go to make toast and nothing happens. You've plugged in the can opener.

...you say to your wife, "Good morning, Mary"...and her name is Sharon.

...you have to sit down to brush your teeth in the morning.

...you become exhausted trying to blow out the candles on your birthday cake.

...you forget your twin sister's birthday.

...you realize that you just sprayed spot remover under your arms instead of deodorant.

...you put both contact lenses in the same eye.

...there is a big basket at the bottom of the stairs full of stuff waiting to go upstairs. -- David White

...it takes you longer to get up the energy to go to the store than the completed task takes you. -- sassyj

...you feed your pets, then sit down and try to decide if it is really worthwhile to get up again just to feed yourself. -- Sandy Flake

...you cut off all your hair because you're too tired to wash/style it anymore. -- Shyrell Melara

...you go to the store to get some cosmetics and write your check out to "Wallpaper" instead of "Wal-mart." -- Sheri (HA! I do this ALL the time! T.J.)

... to unlock your car, you pull out a garage door opener from your purse, aim it at the key slot on your car door, click away, and then stand there in a stupor, wondering why the door wont open. -- Sheri

... you decide that tap water is ok, because the new gallon jug of bottled water is on the floor and it's still full. -- Elsie

... you go upstairs to have a bath, only to realize the bathplug is downstairs...so you decide to have a bath tomorrow instead. -- gossamer

... you continue watching Martha Stewart reinvent the brick because the remote is out of the hand grope area. -- Christa (How true, How true! T.J.)

Accepting Being Sick

Fibromyalgia is a monster that comes in and tries to steal everything away from you.  A few months ago I would have said that it does steal everything away from you, but I know better now.  Every day is a fight though, to retain your independence, self-worth, self-esteem and your life as you know it in general.

We get used to the pain for the most part.  S0me days are better than others.  We learn to deal with the myriad of other symptoms, but there’s one thing we never really get used to and that’s the lack of understanding.  Most doctors don’t even understand it and most act like they don’t even want to mess with it.  Without doctors on our side 100%, we fight this battle alone. I can tell my doctor doesn’t know much about it because he always refers to it as Fibromyalgia pain.  The pain sucks, but that’s far from being the only thing that Fibro does to you.  What about the debilitating fatigue, hair loss, rashes, hearing and vision problems and the list goes on and on.  They really need to change the name of it because it minimizes what we have to go through.

We don’t want pity.  The last thing I want is for someone to tell me how sorry they are that I have Fibromyalgia.  That makes my condition seem hopeless and it’s not, at least it doesn’t have to be.  We do still get to live our lives.  We just have to find alternative ways of doing it.  We have to manage our time differently than a healthy person.  We have to look at the bigger picture in order to plan ahead, but before we can even begin all that we have to accept that we have a chronic illness and that despite that we can still be who we’ve dreamed of being.  We have to learn to love ourselves just the way we are.  We have to accept our limitations and learn to NEVER use our illness as an excuse not to do something we are capable of doing.

I hope everyone is having a good day.  *Gentle Hugs*

Fibromyalgia Symptoms that Make You Scream

It literally feels like my spine is on fire right now.  It hurts to move.  It hurts to write this post.  It just hurts.  It always hurts.  We all go through these kinds of feelings.  Sometimes I just want to scream because I can't take the pain anymore.  Sometimes I just want to give up, but I know I can't.

I have a feeling I'll be back in bed soon.  The pain is making me nauseous and basically right now it just hurts to function.  I'm not complaining.  I'm stating the facts of what it's like living with an invisible illness like Fibromyalgia.  Every day there is always something we have to deal with, whether be the never-ending pain, nausea, cognitive impairment, weight gain, blurred vision, hearing loss and the list goes on and on.  It's frustrating and overwhelming.

There are three symptoms of Fibro that I absolutely can't stand and they almost push me over the edge every time.  The first one is Costochondritis.  That is the worst pain ever.  The first time I experienced costo I thought I was dying.  The second one is the burning pain.  It has gotten so bad before that I've had to pack myself in ice packs.  It's horrible feeling like you're on fire.  The third is the cognitive dysfuction.  I've lost a lot of long-term memories and my short-term memory is getting worse and worse.  Cognitive impairments tend to make you feel very lost and alone.

Fibromyalgia in general can frustrate the living hell out of you very quicky, but what symptoms in particular really make you want to scream?

So Nauseous...

I took today off because the Fibro is out of control and I'm still up early.  Why?  Well because the Fibro is out of control.  My legs feel like they are on fire and I'm so nauseous I can't even take my meds because I will just puke them right back up.  They're too expensive to be doing that.

So I'm just sitting here writing this post trying to take my mind off of everything.  It's not really working, but it's keeping me busy nonetheless.  I hate when people tell me to just get my mind off the pain.  I feel like telling them to go slam their hand in a car door and then for them to try to get their minds off the pain.

Ok I guess that's my rant for the day.  At least it was 2 pages filled with obscenities. I'm handling things a lot better these days. I'm happy for the most part and that makes a world of difference when it comes to handling this monster.

I hope everyone has an awesome day! *Gentle Hugs*

We're Human

Another day, another flare.  All this amounts to is total frustration and a lot of pain.  Those of us with Fibromyalgia are used to it I guess to some extent.  I don't think you ever really get used to being in pain 24/7.  We all have those days when we wish we could just have one day without pain so we can remember what it feels like.  I wish that all the time.  I try not to though because it just makes it harder to deal with everything.

It seems like those around me expect me to be a pro at being sick or something.  I'm supposed to be able to handle it.  I'm supposed to be able to deal with how I feel.  I'm supposed to live my life as if nothing is wrong with me.  I've got news for everyone...I'm human.  I don't have superpowers and if you think my illness is confusing and hard to understand take the time to imagine what it's doing to me.  I don't understand either, but yet I'm forced to deal with it every day of my life.  No breaks, no vacations, nothing.  I don't deal with it very well, but I'm still learning.

That's how it is for all of us.  We have an illness that most doctor's don't even understand so we don't have a lot of weapons to defend ourselves with.  We don't always get the support we need, but we're strong and we're determined.  I've noticed that with all of us fibromites.  We have our bad days when we whine and cry, but then we have our days where we're ready to kick ass.  Again, we're human and we're adapting to something that has totally changed our lives.

I hope this makes some kind of sense.  My brain isn't exactly functioning at a 100% today.  I wish everyone an awesome afternoon.  *Gentle Hugs*

No More Strength by Melanie Woodruff

I find strength in knowing that I'm not alone in this treacherous journey with Fibromyalgia. I love venting my feelings through poetry and I love even more when others do as well. I came across this poem very soon after I was diagnosed and it touched my heart and it made me cry as most things do these days.

NO MORE STRENGTH

by Melanie Woodruff

I’m so tired of fighting this every day
This pain is too much to endure
Please don’t let me pull away
Please don’t let me fade
I’ve no more strength
No more tears
No energy
Here
Me
And life
Trying to breathe
To hold onto something
Blindly reaching for a hand
Steadfast, solid letting me be me
The darkness clears, I see you there
And although the pain remains, I’m not alone.

What is Costochondritis?

I've talked a lot before about Costochondritis and so here's an article explaining what it is and what causes it. Those of us with Fibromyalgia are very aware of the pain that this causes.  Out of all the pain I've felt because of Fibromyalgia, the pain of Costochondritis is by far the worst.  

What Is Costochondritis?

Author:

 George McKenzie

When you feel a stabbing pain in the ribs, it is not always an indication of an injury. When it first happens, you may be worried that it\'s heart disease, or even - if it\'s severe enough - a heart attack.

Instead, you may be suffering from costochondritis, which is an irritation of the cartilage that connects the ribs and the chest plate or sternum.

Costochondritis can cause severe rib pain. Many people say it feels like pain caused by a broken rib.

What Are the Causes of Costochondritis?

There are a number of possible causes for costochondritis.

Most of the time, you get costochondritis due to a severe blow to the chest or ribcage. People who have recently been in auto accidents often get costochondritis.

Athletes who participate in rough contact sports like American football or soccer tend to get costochondritis more often than non-athletes.

You can also get costochondritis by straining muscles and ligaments around your ribcage. Typically, you might do this by trying to lift, pull or push something that\'s too heavy for you.

Finally, costochondritis can result from several medical conditions.

Fibromyalgia is one example. Fibromyalgia is a somewhat mysterious  condition that causes chronic pain, stiffness, and tenderness of the muscles, tendons, and joints. It can affect the chest and ribs.

Anyone who has a severe lung infection that causes chronic coughing can also get costochondritis. Repeated coughing can strain muscles. ligaments and cartilage in the chest.

How to Know If You Have Costochondritis

One of the best ways to know if you have costochondritis is the simplest: ribcage pain in the area around the chest plate.

There are generally two ways to experience the discomfort of costochondritis.

One type is an intense stabbing pain that some people say feels like a knife. This type of pain often appears more on the left side than the right. Since the heart is located slightly to the left in the chest, many people fear their discomfort is being caused by heart problems.

Taking a breath can be uncomfortable or even painful when you have costochondritis. Coughing can even cause intense pain.

The other type of pain caused by costochondritis is a nagging soreness in the chest are that doesn\'t want to go away. It can also be tender to the touch.

Whenever there are chest pain issues, an immediate trip to the physician is in order.

Generally speaking, costochondritis heals on its own with the passage of time. There\'s really very little you can do to speed up the healing process.

While you wait it out, you may be able to get a prescription for some pain relievers from your doctor. These can be especially helpful if your rib pain is so intense that it\'s keeping you from getting a good night\'s sleep.

Article Source: http://www.articlesbase.com/diseases-and-conditions-articles/what-is-costochondritis-2773750.html

About the Author

George McKenzie is a former TV news anchor, medical reporter and radio talk show host.

Tips for Dealing with Costochondritis

Costochondritis is common in those of us who have Fibromyalgia.  The pain from it caused me to go to the emergency room last Thursday.  I'm pretty good at handling the pain, but that was just wicked pain. I had to go through 3 more nights of waking up in excruciating pain because of it and I didn't think I was going to make it through them.

How do you deal with Costochondritis?  What have you tried that has worked? What have you tried that hasn't worked?  I personally would like to have a plan of defense for next time this happens and I know others would like to hear some tips on dealing with it. If you have a story about Costochondritis please share it.