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Living with Fibromyalgia
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Cher0208 - May 28

Found this last night. It was posted by Mommyhen42 on what looks like a blog. Fibromyalgia is being described here and I couldn't have said it better...

Fibromyalgia can be a difficult diagnosis to understand, especially when someone you love is the one who suffers from the condition.
Many times it is impossible for the average person to just look at a person with Fibromyalgia and see that they are suffering from a painfully debilitating disease process.
So many times the ones we love the most, may not believe that we really do suffer from Fibromyalgia, or other any other chronic pain condition for that matter, and are really sick. All too often people think that those of us who suffer from these disease conditions is just too sensitive, or we must have a low pain threshold, some may even accuse us of faking the condition. Even some medical professionals still believe it is a mental condition even though the medical evidence contradicts that belief!

It is hard for people who do not suffer from Fibromyalgia to understand just what the sufferer goes through on a day to day basis.

If you are one of those people please read on and I will try to help you understand
There are some days, due to our pain, we just cannot keep up with our or our plans.
Try as we may, sooner or later the pain slaps us dead in the face and we have to stop everything!
Fibromyalgia may not be life threatening, but can be life stopping!
Fibromyalgia steals more than just our health
It steals relationships ... Those who we love the most may not be supportive

It causes more than just pain ... Pain slows us down, makes us irritable and tired
It steals lives, one day at a time... pain=inactivity= increased fatigue=pain
Simple things like taking the family dog for a daily walk can become impossible when you are faced with chronic pain
Each day is pain
pain reduces energy
reduced energy diminishes quality of life, for not only us but our family's as well.
each day our world shrinks a little at a time.
Others may see us as scatter brained, slow or inattentive,
or even wonder if we are drinking,
Fibro fog steals the most important thing... our ability to think and communicate.

We loose words all the time, the phrase "it is on the tip of my tongue" was meant for Fibromyalgia sufferers ... it had to be! Because we live it daily.
People often believe that we are distracted, slow or unable to perform our jobs because we miss things that we would otherwise not miss. Our job performance suffers, we may receive reduced days and hours or get fired before we even know what is wrong with us.

If you have Fibromyalgia and are in a supervisory position, it can be even worse because employees may take advantage of your off days because they feel you could be drunk or simply that you may appear inattentive.

Just like a puppy in a cage we often feel isolated and alone
our bodies become the cage, we lose our identity, independence, zest for life!
Our world shrinks on a daily basis.

We lose our jobs, or go on disability ... our world shrinks.

We experience fatigue ... our world shrinks.

we lose our independence ... our world shrinks smaller still.

Our children want us to come play with them, husbands want our time and attention. However, more often than not our family can't understand how we feel, since we look just fine... but inside we are not fine! Loved ones want to help us but are frustrated,

They see us in pain and can do nothing,

Outside friends and family members do not believe we are sick,

Our children do not understand why we can not attend events with them...

Our relationship with our husband/wife and children suffers ...

Pain makes us angry, tired and miserable. We sometimes lash out at those we love.
We don't understand what is happening to us before we are finally diagnosed (it can take years) and may become angry and lash out at those we love the most

Fibromyalgia and Chronic pain is about losses
We try to hide how we feel this causes isolation
Which only makes us angry and miserable.
Our family and friends don't know how to deal with us anymore
We loose friends, family doesn't understand, relationships suffer
Even a touch from a loved one causes pain making us seem unavailable to our familys.
Our world gets ever smaller...

It hurts to sit ...
It hurts to stand ...
Even a loving hug can cause us pain ...

So we try to act normal, we try to hide just how bad we feel, it may even work for a while, but sooner or later the pain catches up ... Then it takes over...

Our children end up doing some of the household chores that we once did.
But they simply can't understand why we are no longer able to do the things that their friends mom's or dads can do.
They adapt, they try to help around the house to make us feel better.
My son's were wonderful about being quiet or bringing me ice when I had a really bad day.
Deep down inside though, I felt like I was letting them down.

We try to suffer in silence because we are in constant pain, we try to hide it, we deny it, but it just steals our life anyway...
How can we help but be depressed!
No matter how we try to avoid it sooner or later Depression sets in.
Depression did NOT cause our pain, but rather depression is directly caused BY our pain.
Still there are some doctors that hang on to the myth that we are depressed and that the depression causes the pain, or worse yet that we need counseling not medical treatment. They hang on to the old belief that Fibromyalgia sufferes are mentally ill.
Depression IS caused by the pain, but our depression still needs to be addressed. We may deny it, but how can you help but be depressed when every waking moment of your life you are in pain!

A restorative nights sleep eludes us
Sleep eludes us for the pain, then the fatigue becomes mind numbing, and finally sleep finally takes over... our lives!
In comes the fatigue ...Endless mind numbing fatigue...
We become so tired, but we can not sleep for the pain, then it finally catches up to us, and we sleep for days
We feel tired all the time

Our friends and family may try to understand, but they too fight the frustration and anger when we can not do what we were supposed to do ...
Plans get put on hold because we are too tired to go on that trip
Our children count on us to watch them play at the big game, but we just don't have the strength...
Our jobs suffer
Our family's suffer
Our lives suffer...

Dizziness and sometimes even True Vertigo may be an occasional part of our daily lives
True Vertigo is when the room spins, you loose balance, and find it impossible to walk without falling due to the constant motion of objects around you.
Yes, the room really does spin!!!
No, I am not kidding here, Dizziness is common with Fibromyalgia but no one can really explain why.
Dizziness can range from a simple feeling of movement that may or may not be followed by nausea and vomiting.
Sometimes it is only a sensation of movement or seeing movement seen out of the corner of your eye, you go to look for it and it is gone...
But for some of us, myself included it is typically true vertigo.
The room spins when you tilt your head a certain way. This causes severe balance issues as well as nausea and vomiting. It can last from a few hours to days at a time!
Our doctor may prescribe Meclizine to help reduce the symptoms and make life bearable till the bout passes

Fibromyalgia often begins in childhood but we don't recognize the symptoms!
Even as a child I was constantly falling
Mom used to say I was the only one she ever heard of, who could fall UP the stairs!
Your balance is affected, you stumble and fall frequently, and may avoid public places so that others do not see you fall
Balance issues can be the worst when dealing with Fibromyalgia.
You wobble when you walk.
you walk into door frames, stumble over your own feet, etc.,
People may think you have been drinking or are drunk due to the way you walk.
You can't help it, and you become acutely conscious of how you walk.
If you use a cane to assist you, sometimes it is not where you think it is and you fall.
People look at you, and again think you are drunk.
You become more self conscious, your world shrinks as you begin to avoid being in public when you are having problems with how you walk to avoid the embarrassment.

Migraines can come on frequently without any of the usual triggers
Migraines can be brought on my tight painful muscles that restrict the blood supply, often called tension headaches. Migraines can come on for a variety of reasons but with Fibromyalgia and chronic pain sufferers the Migraines may be brought on by the muscles in the neck and shoulders being in a constant state of spasm. They can also be caused by warmer weather, which for me is the case. I tried to talk to my doctor about it but he is unsympathetic and feels that since I deal with it by staying in bed with ice packs then I am ok... remind me that I need to find a different doctor!!!
Again our world shrinks ...
Optic Migraines are the scariest!
I have episodes when I see a multi-colored lightning bolt shoot through my field of vision usually in my left eye. When this happens the lightning is the only thing I can see with that eye!
I close my eyes and it still see it!
It usually lasts from a few minutes to a half hour and leaves me feeling nauseous, dizzy, and out of sorts for the rest of the day.
I certainly can not drive when this happens....
my world is further reduced as I am again forced to depend on someone else to do my shopping, and errands for me....

Fibromyalgia is about more than just pain
Fibromyalgia is about losses... loss of freedom, loss of employment, loss of friendships when friends don't understand, loss of relationships, but worst of all is loss of independance
Strange sensations anywhere on the body is a common problem for those who suffer from Fibromyalgia.

You feel like someone is poking you repeatedly
Sometimes, you look at the muscle and actually see it in spasm, it pops up and down and is a very strange sight to see...
These spasms can become quite embarrasing when you go to reach for something and your hand or arm jumps... You have no idea how many times I have flung my french fries or once a hamburger when my arm or hand jerked at an unexpected time!
Again, when this happens, people stare...
You become nervous in public
again your world gets smaller

Restless leg syndrome
You try to sleep but your legs have these strange tingling, crawly sensations that give you the feeling that you have to move them or worse yet, you simply must get up and walk around. You are tired, your legs ache and feel awful, nasty, you can barely stand it¦ Finally there is medication, but do you wonder if you really want to add another pill to your ever growing drug cocktail???
CREEPY CRAWLY sensations can be the worst.
If you suffer from Fibromyalgia or another Chronic Pain condition you may suffer from crawling, tingling, burning, or other sensations in the skin or under the skin.
I have one spot on my left shoulder blade that always feels like there are bugs moving around just under the skin. sometimes these crawling sensations are maddening... I am constantly asking my spouse to scratch there and also if he sees anything moving around under the skin. It has been years since this started yet I still ask, even though I know the answer is no...
Sometimes it feels like someone is touching you when no one is around.
Sometimes you feel like you have an intense sunburn and your skin is painful when your clothes touch but again there is nothing there...

Sleep Apnea
If you suffer from Fibromyalgia, one of your problems is the inabiltiy to get a restorative nights sleep. Many doctors will routinely prescribe a sleep study to determine if you are suffering from sleep apnea.
Sleep apnea is often treated with a CPAP or BIPAP device that the sufferer must wear every time they try to sleep.
Sleep apnea is common in sufferers of Fibromyalgia.
Sleep apnea can be either obstructive, which means that the airways close up during sleep, or Central when the brain forgets to tell the lungs to breathe.
Sleep apnea is diagnosed by a sleep study and usually treated with a CPAP device.
CPAP therapy is difficult to learn to live with, you wear a mask at night while pressurized air is pushed through a piece of tubing and into the mask to keep your airway open while you sleep. The device is noisy and can blow air on your spouse during the night.
This usually causes the spouse to feel resentful and try to urge you to not use your device at night so that they can get some sleep.

This causes a further strain on your relationships as your spouse struggles to cope with yet another health related issue.

Fibromyalgia makes your world smaller, until you feel like you are the only one
Dealing with Fibromyalgia makes you feel trapped, isolated, and alone!

Finally there is some acceptance in the medical communtiy!
Fibromyalgia is no longer considered a "catch all" disease for when nothing else fits.
Finally the medical community is beginning to see that this is a real disease process and not all in our heads.
Some doctors recognize the fact that Fibromyalgia causes painful knotted muscles and have even realised that you can FEEL the knots in the muscles!
Now there is a definite criteria set for the diagnosis of Fibromyalgia. They have identified 18 trigger or pressure points on the body that are consistent with Fibromyalgia sufferers.

Doctors can apply pressure to these trigger points (excruciatingly painful for the sufferer) and if the patient tests positive (thats expressing pain) in at least 11 of the 18 pressure points then that is proof positive that the patient suffers from Fibromyalgia.

My diagnosis took 7 years because my previous doctors did not believe that Fibromyalgia was a real disease process even though the AMA recogniszes it as such! He actually asked me why I was wasting his time since nothing was wrong with me!
Finally there is hope for Fibromyalgia sufferers.
Doctors are beginning to understand Fibromyalgia and how to identify it.
Medications are being approved by the FDA for the treatment of Fibromyalgia such as Lyrica, Cymbalta and others.

We are not lazy, simply fatigued
We ARE in REAL pain
This is a REAL disease condition
Yes, some people have it and still function, but Fibromyalgia can be quite different for different people. For some it becomes debilitating and others a mild inconvenience.
Strong relationships based on loving communication seem to stay together, while other relationships do not.
Fibromyalgia and other Chronic pain conditions often cause the loss of relationships.
Communication is the key to holding on to loved ones, talk to them, tell them



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