Take the Challenge!

One thing that I've realized lately is that you really can't keep on keeping on without some sort of encouragement. Even if it's just getting online and talking with friends on facebook or joining a website like patientslikeme.com where you can interface with others who've been there, who are sick and looking for information and encouragement. It means the world to them and it helps you immensely. I've been attending church a lot more this past year and actually joined a young adult group where there are people who are healthy but also others with the same illness as me :) It's amazing to just sit and talk and pray and understand each other. Takes off loads of stress. Try it! I challenge you to spend at least fifteen minutes speaking to someone or writing back and forth to someone each day. It'll make a world of difference, I PROMISE :)

Hallucinatory Dreams

Alright so I'm NOT crazy.... at least not about this! I've had crazy nightmares ever since I was a little kid and always just thought I was weird for waking up thinking I was awake and actually still dreaming or waking up and having an anxiety attack becasue I couldn't tell which life was actually real. This article helps a lot, as do the comments at the end.
Hallucinatory Dream

Anyway Go and read it and tell me if you think all of us are nuts. Sincerely, Rena Can't Sleep

patient self care dwindles

. Great blog about impatient patients

http://www.invisibledisabilities.org/coping-with-invisible-disabilities/perseverance-illness-pain/

New flarek

I've dropped ten pounds, canka sores all through my mouth, can't sleep more than four hours, extreme muscle spasms and breaking out in acne. Hello fibromyalgia flare Up, I hate you just an fyi

Plea

I'm laying here in agony
and I'm praying God for you to see.
I know you're there
and yet I can't help feel it's unfair.
Why do I have to go through this tonight?
I'm so sick of being in pain without gain
Without anything changing for the better.
I want to be excited for rain not worried about pain.
I don't want to have worries about coming weather.
Will I always get worse?
I hate this invisible curse
Like you're crushing me as I lay in your hand.
I'm trying Lord, but I'm still crying Lord
and the pain has a burn like a brand.
When it makes me deformed
and there's no beauty in me.
When the pain's firmly etched in my face,
Will I still cling to your arm?
Will you protect me from this harm?
This love can't ever be replaced easily.
Cause I'd crumble with ease
Trying so hard to please.
Oh don't leave me alone on this night.
As the moon hides away
Whisper joy and peace for new days
And help me continue to write

Fly Away

The sun is shining and the skies are clear,
but inside I'm fighting. Battling fear.
Cause I know that it's there. Right under my skin.
Ready to pop up and I never knew when.
Like a ghost in the night it's stolen my dreams.
It feeds on the anguish, devouring my screams.
Nobody sees it. No one can tell.
I may look like I'm healthy, It's my own secret hell.
How incredibly ironic, such a sting of irony.
I'm terrified of pain. But the pain's a part of me.
It's always there riding up on my shoulder.
Keeping the sun off my face, making me colder.
A phantom that plagues me that I can't comprehend.
I can't see a future where I'm fast on the mend.
I'm begging for healing. Praying for aid.
Asking for Help, hoping I won't continue to fade.
I'm laughing and smiling like the world's quite alright.
But I'm terrified of the shadows, the whispers at night.
When I look in the mirror there's no me to see.
Just a facade, a cheap imitation that's liked much more than me
Everyone loves her. Thinks that she's grand.
While I'm behind the mask screaming, I don't understand!
Why is this happening? I want my life back!
Why suffer for a lifetime? Why not a quick heart attack?
I'm whining Lord and I hope that i'm not a regret.
I'm trying so hard to be patient, to try not to fret.
So please hold me gently. Soothe this troubled mind.
If you could make me unconscious  it'd be ever so kind.
Just let me drift awhile. Let me find some relief.
Help me hold onto my sanity, strengthen my belief.
That way when everything fails and everyone's gone.
I'll have you to cling to. You to help me hold on.
As the medicine dulls me and I start to drift away.
I thank you for this journey and another new day.
You're my bastion of strength and you sing me to sleep.
Watch over me Lord. Bring me back from the deep.

Illusion of Completion

I don't want to be different.
Please don't turn away.
Cause maybe the pain is worth it,
maybe the warmth makes it okay.
I'm certainly aware of pain.
I know my body well.
Don't tell me to treat it better,
I'm not stupid I can always tell,
I can see when i'm flagging,
when my strength is fading fast.
Dreams and schemes are put to rest
cause the hope and endurance won't last.
If you need my help, need a hand,
don't turn to others, please understand,
I need to serve, Need to be needed
God won't let me be helpless.
won't let me lay down defeated.
I'm a soldier and I'll fight this fight.
I'll keep on walking
through the long long night.
Will you walk with me as equals?
Walk hand in hand?
I'm asking you darling,
Can you please understand?
Give me a hug, tell me what you need.
When you treat me like I'm still whole
you become a friend indeed.

Prisoner of Fate

The fire makes it hard to sleep,
dreams of screams and rivers deep.
Wake up to the milky darkness
cruel genetics, sometimes heartless,

Hiding the pain from family and friends
wishing that someday the horror would end
Knowing it won't, it will only get harder,
harder to cope, most wouldn't bother.

So I'll change my life and hope it works
cause the only alternative does nothing but hurt

Don't Dare Tell Me

You say I look fine. And I'm not mad.
There's nothing there to see.
Just pain etched into my face,
from which I'm never free.

I say I'm tired, you say sleep more,
but after nights of tossing and turning,
I don't feel rested, I feel sore.

I say that the pain is the worse I've ever felt.
You ask why I'm not screaming.
And why isn't there a a welt?
Well perhaps then I am dreaming.

X-rays, bloodwork, tests from A-Z
I wonder if this is my fault. I wonder is it just me?
But no there's more, there's people out there.
They toss and turn, and they feel the pain.
They know I speak the truth
cause really there's just nothing there to gain.

Why would I want to lose so much sleep?
Why would I want to cry?
Why would I want to just sit at home?
Why would I want to die?

Why would I want to never eat?
Why would I want to push people away?
Why would I want to take anything,
just to make the pain stop for one day?

So don’t tell me that there's nothing.
Because there's something wrong.
Stop accusing that i'm abusing,
as you have been oh so long.

I'm sick, I don't know why.
I don't want to hurt anymore
So either help and just shut up
or I'll be showing you my door.

Let's Pretend

Can't you see past the smile? I know it doesn't reach my eyes.
They reflect a little pain. And they're mirrors to the lies.
Oh yeah I'm great. Doing swell. Might run a marathon today.
And we'll bake a dozen cookies and then all sit around and play!
I can't live like that, never could. But I'll try for you.
And I know the truth hurts you. And so I'll lie for you.

It's a war and I'm not winning. The waters are rising
but I'm not swimming anymore.
Oh darling I'd pretend for years.
I'd swallow all the tears that drown my soul.

Will it help? Is there air to breathe there with you?
Cause I can't hold my breath for long.
And I fear it will be long gone quite soon.

You're an underwater tunnel. I can hear you calling out my name.
Can't you see it kills me babe, I'm too tired to play this game.
Oh I want it, want the classic fairytale
White knight, white fence, and a healing holy grail.
But it's not there. And I don't dare to drop the gate.

Could we let the walls fall down?
Would the flood raise me up or will i drown?
I think it's time to take a chance, at this second glance,
just look at what there is to gain. And if it brings just one real smile
it might be worth this pain for a little while.
Might be worth playing pretend,
Cause then maybe then there'll be a happy ending here for me.

Persistent pain

You can never truly appreciate your health until it's gone. I had a good day today, and by good I mean that the pain only made me tear up a few times. I wonder if I'm being cursed, punished somehow for my sins, but I cannot seem to figure out what terrible thing i have done to deserve this.

You most likely think that I'm being melodramatic, I'm not. I wake up and it's a fight just to convince myself to get out of bed. Another fight to force myself to eat because lord knows the nausea from the pain and depression has killed my appetite. I go to work or school and I look worn out, haggard, and I can't even summon enough energy to be upset. I looked in the mirror today and saw a ghost. My face has thinned out so much and the shadows under my eyes make me appear fragile and sickly.... The fight to go to work and keep working it terrible. I pray constantly please lord let me last this next hour, this next minute, this next moment. It's terrible.

Over all tonight is just bad. I should call someone and talk to them because lord knows I should not be alone right now, I'm not suicidal or anything I'm just in uv a slump that I don't move, or talk or do anything. Typing right now id terribly painful but i keep at it because I need to share, to tell others that they aren't alone. With hope tomorrow will be better, with hope the pain will go below a dull roar and my heart wont feel so stressed and heavy. I do not know what i would do without god .... I hsve no idea.

Page 1 of a Great Article, read on!

http://www.practicalpainmanagement.com/pain/myofascial/fibromyalgia/physical-medicine-rehabilitation-fibromyalgia

Physical Medicine and Rehabilitation for Fibromyalgia

Optimal rehabilitation outcomes in a fibromyalgia patient require that the treatment be tailored to the individual patient’s symptoms, examination findings and subject to periodic testing to allow for adjustment.

By Scott Stoney, MD

Page 1 of 4

Fibromyalgia is not only a difficult illness for patients who are forced to live with chronic pain and other co-morbid conditions, it is also perplexing to physicians who often do not have the tools necessary to feel comfortable in making an accurate diagnosis or to prescribe a successful treatment regimen. In his discussion of the pathophysiology of fibromyalgia, medications, and rehabilitation strategies, Dr. Stoney highlights the usefulness of the Fibromyalgia Oswestry Pain Questionnaire as a tool to measure pain management efficacy in this patient population.

Rae Marie Gleason

“The days of affliction have taken hold of me. My bones are pierced in the night and my sinews take no rest." —Job 30:16-17

Physical medicine and rehabilitation (PM&R), also known as physiatry, is a branch of medicine that aims to enhance and restore functional ability and quality of life to those with physical impairments or disabilities. Physical medicine and rehabilitation involves the management of disorders that alter the function and performance of the patient. Emphasis is placed on the optimization of function through the combined use of medications, physical modalities, physical training with therapeutic exercise, movement and activities modification, adaptive equipments and assistive device, orthotics (braces), prosthesis, and experiential training approaches. The major concern of the field is the ability of the person to function optimally within the limitations placed upon them by a disease process for which there is no known cure. The emphasis is not on the full restoration to the pre-morbid level of function, but rather the optimization of the quality of life for those who may not be able to achieve full restoration. A team approach to chronic conditions is emphasized to coordinate care of the patients.
Figure 1. Pain Sensing System Malfunction in Chronic Pain Normal Pain
Pain-sensing signals are initiated in response to a stimulus
They elicit a pain-relieving response
Chronic Pain
Pain signals are generated for no reason and may be intensified
Pain-relieving mechanisms may be defective or deactivated

Pathophysiology of Fibromyalgia

Fibromyalgia has been acknowledged as a disease state by the AMA, the NIH, Social Security Administration, and the American College of Rheumatology. There is a wealth of biochemical data that both substantiates this disorder and helps providers understand its pathophysiology.
The patient with fibromyalgia has demonstrated gray matter loss, with one year of fibromyalgia pain equivalent to nine years of brain aging.¹ Fibromyalgia is a chronic pain disorder affecting 2-4% of the population.² Biological and neuroimaging studies support the hypothesis that aberrant pain processing in the central nervous system (CNS) of fibromyalgia patients may represent an important underlying defect.³
A CNS mechanism may explain generalized heightened pain sensitivity of FM patients; increased levels of excitatory neurotransmitters (glutamate, substance P); may contribute to neuronal hyperactivity and central sensitization; and decreased activity of inhibitory signaling mediated through noradrenergic and serotonergic descending pathways. Biologic and genetic influences, environmental triggers, and abnormalities in neuroendocrine and autonomic nervous systems also contribute to the pathophysiology of FM (see Figure 1).
Neuroendocrine⁴ and neurotransmitter abnormalities, autonomic dysfunction, shared biological and genetic factors,⁵ psychiatric/ psychological⁶ and social distress are present in patients with fibromyalgia. The peripheral mechanism is also impaired in patients with fibromyalgia as these patients have hypersensitivity or widespread pain.
The biochemical changes seen in the CNS—the low levels of serotonin, the four-fold increase in nerve growth factor, and the elevated levels of substance P—all lead to a whole-body hypersensitivity to pain and suggest that fibromyalgia may be a condition of central sensitization or of abnormal central processing of nociceptive pain input.⁷ Evidence has suggested that suppression of the normal activity of dopamine-releasing neurons in the limbic system is the primary pathology in fibromyalgia. Increasing evidence indicates that fibromyalgia may represent a dysregulation of dopaminergic neurotransmission. Researchers have found low levels of adenosine triphosphate (ATP) in red blood cells of patients with fibromyalgia but the most widely acknowledged biochemical abnormality associated with fibromyalgia is abnormally low serotonin levels which have been correlated with painful symptoms. Many studies have linked serotonin, a neurotransmitter, to sleep, pain perception, headaches, and mood disorders.
Serotonin levels in the CNS are thought to be low due to low levels of tryptophan (amino acid precursor to serotonin) and 5-hydroxyindole acetic acid (metabolic by-product) in the spinal fluid. Investigators have proposed a link between low serotonin levels and symptoms of fibromyalgia.⁸ Moreover, many propose that low serotonin levels may cause fibromyalgia in whole or in part.
Investigators have studied the neuroendocrine aspects of fibromyalgia and have found dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis.⁹ The HPA axis is a critical component of the stress-adaptation response. In a normally functioning system, corticotropin-releasing hormone (CRH) stimulates the anterior pituitary to release adrenocorticotropic hormone (ACTH). ACTH then stimulates the adrenal cortex to produce glucocorticoids, which are powerful mediators of the stress-adaptation response.
In support of the idea of a systemic biochemical abnormality in fibromyalgia, investigators from four independent studies reported levels of substance P that were two to three times higher than normal.¹⁰
Substance P, the neuropeptide in spinal fluid, is a neurotransmitter that is released when axons are stimulated. Increased levels of substance P increase the sensitivity of nerves to pain or heighten awareness of pain. The elevated levels in the spinal cord of fibromyalgia patients cause fairly normal stimuli to result in exaggerated nociception. This results in an impairment in the normal regulation of muscle tone within the spinal cord, contributing to increased muscle tone and focal muscle spasm (see Figure 2).

Medication Meltdown

I recently was told to double my pain medication. When I did it took about a week to adjust for the most part, it's been upwards for three weeks now and they still turn me into a jittery stoner at times. 
I ended up snapping at a few people over the course of the last few weeks at my job. For the most part everyone realized I was having a hard time and accepted my apology. Except for one person, because it was their birthday. I was so incredibly out of it I barely remember the whole day and at the time I'm sure I didn't realize it was the person's birthday. Mainly because the person makes me want to scream. I apologized and told them I was sorry although I had to bite my tongue and not make excuses. They accepted for the most part and told me not to worry about it.

Another person berated me over making fun of this person. They had screwed up like seven orders in a row and me and another guy from work were teasing him about maybe throwing him out the window..... yes I realize that's mean.  Like I said I was really out of it so I'm not exactly sure of my reasoning. I just can't function without the medication and it's not like I can call out of work for a month every time I have a medication change. As it was I was filling in for someone who was sick.  I get weird on the medications and I hate huritn gpeople but my verbal filter just isn't there when I take my meds. It's gone. If I could work without them I would. With them I can work and contribute to society, I'd like to continue that way. I'm trying to tame my tongue. The only thing I"m taming is how much i take my meds though. I feel so guilty for taking them, I know i'm going to probably say something mean or insensitive when I'm on them and yet it's so damn hard to get through the day at home without them never mind work a full shift without them.

I just don't get why are people so hard on those who are on medications? I was told that I can't use it as an excuse. Okay then, next time my hip acts up and I can't walk I won't use my cane as an excuse not to mow the yard, or walk up five flights of stairs at school, or walk three blocks to a friend's house to babysit their kids.  Don't be ignorant. These people aren't stupid, or mean or cruel they just do not understand. And I've tried to explain it but they don't want to hear my side.

I don't often use being sick as an excuse for rude behavior.  However I am still rude quite a bit of the time, I even admitted that without the meds I'd still have been cranky with the guy, just not as much. And yet still resentment. Why? I don't get this???? I'm not okay! It's like blaming someone with manic depression for not acting normal when they aren't on medication. Or someone with cancer for not eating everythign on their plate when they are a guest at someone's house because they are too nauseous. Sometimes I really wish everyone could live one day in pain.

The person who took me to task did so as nicely as possible, I'm not angry with them, I'm glad that they are sticking up for the guy. Someone has to. The person even said that they gave me credit for coming to work and dealing with all the shit their when I didn't feel well. But I don't think many people really understand how NOT well I am.

I don't look haggard because I'm ugly. I look haggard because I have chronic fatigue. I'm always tired. Doesn't matter how much I sleep. I am ALWAYS in pain. People don't get that. It's ALL the time. Not wow something kinda hurts. it's ALLLLLLLLLL the time. I am in moderate pain 90% of the time. MODERATE. Someone said the other day that being mildly in pain all the time must get tiring. Really? Cause I'm an inch or so from crying some days. Some times I cry when I go to sleep or when I get up because it hurts so badly. I don't want to go to work in the morning. I just want to lay here and cry some, and then wait till they find a cure. I'm trying to trust God to help me get through it. He's doing well. It's just hard... a lot of the time. Maybe it's what's keeping me so close to him. If so then I'm glad. I need to sleep.....

A Simple Explanation of Fibromyalgia by Adrienne dellwo

Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body.

If you're trying to understand this condition in someone you know, it can be incredibly confusing. When a lot of people see a bizarre collection of fluctuating symptoms that don't show up in medical tests, they decide fibromyalgia must be a psychological problem. A host of scientific evidence, however, proves that it's a very real physical condition.

Imagine you're planning a party and expecting about 20 guests. Three or four friends told you they'd come early to help you out. But they don't show, and instead of 20 guests, you get 100. You're overwhelmed.

That's what's happening with pain signals in someone who has fibromyalgia. The cells send too many pain messages (party guests), up to five times as many as in a healthy person. That can turn mild pressure or even an itch into pain.

When those pain signals reach the brain, they're processed by something called serotonin. People with fibromyalgia, however, don't have enough serotonin (the friends who didn't show up to help), leaving the brain overwhelmed.

This is why people with fibromyalgia have pain in tissues that show no sign of damage. It's not imagined pain; it's misinterpreted sensation that the brain turns into actual pain.

Other substances in the patient's brain amplify a host of other signals -- essentially, "turning up the volume" of everything. That can include light, noise and odor on top of pain, and it can further overload the brain. This can lead to confusion, fear, anxiety and panic attacks.

Most people with a chronic illness are always sick. The effects on the body of cancer, a virus, or a degenerative disease are fairly constant. It's understandably confusing to see someone with fibromyalgia be unable to do something on Monday, yet perfectly capable of it on Wednesday.

Look at it this way: Everyone's hormones fluctuate, and even things like weight and blood pressure can rise and fall during the course of a day, week or month. All of the systems and substances in the body work that way, rising and falling in response to different situations.

Research shows conclusively that fibromyalgia involves abnormal levels of multiple hormones and other substances. Because those things all go up and down, sometimes one or more are in the normal zone and other times they're not. The more things that are out of the zone, the worse they'll feel.

Some people think fibromyalgia patients are emotionally incapable of dealing with stress, because a stressful situation will generally make symptoms worse.

The important thing to understand is that we respond to stress both emotionally and physically. A physical response, in everyone, includes a rush of adrenaline and other hormones that help kick your body into overdrive so you can deal with what's happening.

People with fibromyalgia don't have enough of those hormones, which makes stress very hard on their bodies and can trigger symptoms.

Also, when we talk about "stress" we usually mean the emotional kind, which can come from your job, a busy schedule, or personal conflict. A lot of things actually cause physical stress, such as illness, lack of sleep, nutritional deficiencies and injuries. Physical stress can have the same effect as emotional stress.


Think of a time when you were not just tired, but really exhausted. Maybe you were up all night studying for a test. Maybe you were up multiple times to feed a baby or take care of a sick child. Maybe it was the flu or strep throat.

Imagine being exhausted like that all day while you're trying to work, take care of kids, clean the house, cook dinner, etc. For most people, one or two good night's sleep would take that feeling away.

With fibromyalgia, though, comes sleep disorders that make a good night's sleep a rarity. A person with fibromyalgia can have anywhere from one to all of the following sleep disorders:

Insomnia (difficulty getting to sleep or staying asleep)
Inability to reach or stay in a deep sleep
Sleep apnea (breathing disturbances that can wake the person repeatedly)
Restless leg syndrome (twitching, jerking limbs that make it hard to sleep)
Periodic limb movement disorder (rhythmic, involuntary muscle contractions that prevent deep sleep)
Fibromyalgia In a Nutshell

A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes.

Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.

It's NOT psychological "burn out" or depression.
It's NOT laziness.
It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
The hardest thing for patients, however, is having to live with it. Having the support and understanding of people in their lives can make it a lot easier.

This was an article from http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm?nl=1

Great website, highly recommend it!!!

Maybe

Have you ever wanted to hid the fact that you're sick? To mask the pain and fatigue and everything else and just pretend that you aren't chronically ill? I had a friend who asked me why I air my dirty laundry almost immediately after knowing someone. My response? When they know you're sick and have ptsd among other issues they know what they're getting into, and many leave... but at least I know that the ones who stay are for real.

I worry a lot about the future and what my life will be life. I could probably go my whole life having friends, family, even a spouse not know that I"m sick. I could do it. But would I want to? Some people say I talk about it too much, that I tell people too freely, but it's there, it's a part of my life. it's a large part actually. So what do I do? Do I screen potential dates by telling them early on? Do I only date other "sickos" people who are suffered like me? Or do I crawl into the "im sick" hole and die to relationships? I say screw everyone. I'm going to tell everyone and anyone and get people to stand up and listen for once, listen and hear about this terrible affliction that affects so many people. And many I'll find someone to stand up for me by my side.... maybe

Aching and whining

The hardest thing lately for me has been the aching pain. The kind that leaves you drained and yet you can't crawl into bed because even laying down is painful. What I'd give for a back massage right now or something to take my mind off of the pain. It's also really hard knowing that I wouldn't be in pain right now if I hadn't received bad news about mum and dad. For people who don't believe that I'm sick they sure help contribute to it

Poem from a Flare 2 Years Ago

I'm tired. Of everything really. I'm tired of the pain,
the emotional, the physical, the fog inside my brain.
I'm tired of hurting others and being hurt in return.
I'm tired of being tired, to live with this I'll never learn.
I'm tired of the nausea, the pain makes me green.
I'm tired of looking sickly, am I the sickest you've ever seen?
I'm tired of avoiding people I'm scared they won't understand.
I'm tired of always having to change, I'm tired of losing my plans.
Of having to change my hopes and dreams
Cause of course it's not God's will,
but he's my father, brother, he's my all,
and he's helping me up this hill.
I'm tired of the medications that cause bitter agony.
I'm tired of all the rules. I'm tired of wishing to be free.
I'm tired of changing who I am to suit a life I hate.
I'm tired of looking in the mirror seeing what this pain creates.
I'm a sickly weakened child who cries out in the dark.
who can't seem to keep up with you. This illness left it's mark.
And I guess I'm just tired of trying, I'm tried of trying to smile.
And I'm tired of doing it all alone, lonely all the while.

Feeling a Flare

I"m a member of the website Patientslikeme.com and a girl posted the other day a list of symptoms showing you are heading into a flare and I thought i'd share with everyone. everything in bold i'm having issues with right now... Guess who is in a flare? that'd be me.

A Fibromyalgia FLARE is a period of time when your Fibro symptoms are increased or out of control. It could last for less than an hour, or for months on end.

Flares happen if you are not on correct treatment, if you don't have your treatment adjusted at the moment, or you encounter something that throws your treatment off.

Signs of a Flare or an Approaching Flare:
Your muscles may become unreliable, you may drop things.
You may also notice muscle weakness such as when pouring liquids, turning a door knob, opening a can.
It may be hard for you to judge the weight of objects. This can result in apparently throwing things around.
Extremities may feel cold compared to the rest of the body.
You may have hot or cold waves through your entire body.
Your heart may palpitate.
You become stiff.
You hurt all over.
Increase in skin blemishes.
Sores in mouth or on tongue. Inflamed taste buds.
It may become difficult to feed yourself without spilling food or a drink.
Fibro Fog (inability to think clearly) may become worse
Depression due to the pain may worsen, as well as the pain itself.
You may have trouble finding and saying words.
Your judgment can be impaired.
You become extremely fatigued.
You want to lie down and sleep.
You are less able to sleep.
You may become depressed.
You may procrastinate.
You may become obsessive or compulsive.
You get a headache.
Urination becomes very frequent.
You may become incontinent, especially with urinary stress incontinence.
Your monthly cycle may be disrupted.
Your cuticles become sore.
You bruise easily
Bulged discs may cause more pain
Joints may pop and crackle, especially in your neck
You experience extreme pain from simple bumps.
You may become withdrawn, or have a panic or anxiety attack
You may suddenly want to leave where you are.
You may become nauseous.
You become very irritated, sometimes over the least things.
You suddenly begin to itch or have a burning sensation on your skin.
You may feel dizzy when changing your posture. This could happen when you get up after laying down, or it could happen every time you move your head.
Spatial disorientation, you can no longer tell where you are in relation to the world around you.
Aphasia - you may not recognize faces or places.
Your eyesight becomes dull. Your hearing may, as well.
Your eyes may become dry or burn.
You may have trouble seeing at night. Car lights may glare.
You may have trouble swallowing.
You may bump into walls or trip over things.
Perspiration may increase or decrease dramatically.
You may start clenching your teeth.
You may have symptoms of bursitis.
Sinus pressure.
Post nasal drip.
Hair loss.
Depth perception may also be off.

Eratic Emotions

Whenever I get upset or frustrated I tend to try and work it off physically or else eat it away using chocolate and donuts. Today I used a combination of the two. Probably the worst thing for my health that I could do and yet I did it knowing very well that a muscle relaxer and extra pain pill I'll need tomorrow are going to make me one VERY messed up young lady.

When I woke up this morning I literally started to tear up over how much pain it caused me just to move to shut the alarm off next to my bed. The kind of pain where you moan out load no matter how used to the pain you are? I DID sleep in which was good but then the day just got worse and worse. I had a guy I was interested in basically "dump" me for God.... you laugh but apparently it's possible. Being jealous of God... now there's a new one. I think It actually hurts more than if it'd been another girl or him turning gay. Story of my life I guess though. I swear it has to be me. No way was that just God killing the relationship. Five bucks says I said something or did something to bug the guy.

So because I was disappointed and also trying to figure out how to get back to being just friends when I like him, I decided walking back bay in the crummy weather was a good idea. I got a mile into it when my leg gave out and my back wrenched. So i walked the miserable mile back to my car and drove to hannaford for some healthy food (trying to offset my stupidity) I go to eat the berries I bought and see that there's mold on some of the ones in the middle of the container. Appetite immediately gone and I'm disgusted. A friend of mine mentions meeting up at work early to eat supper together. I went over to my friend's BK and got some junk food figuring oh well at this point I need some comfort food. I get to work and realize that they forgot half my meal/ screwed up half my meal. At this point my day was utter shit.

I was scheduled to be on the floor for floor guard duty ( I work at a Roller Skating Rink) So I threw my skates on and skated really hard all night trying to burn off some emotions. Probably wouldn't have as much if the guy wasn't texting me telling me what a great find I was.... yeah really great find... so great that now you're consoling me with "all my female friends have found husbands by hanging around me" .... thank you... you're now saying you'll hitch me up with someone. Damn. And through all of this the pain levels were rising and rising. THEN I went to go pick up a ticket off the floor and slipped backwards because of my back and leg issue. Totally wrenched my arm attempting to stop my fall.

My day has been shit. Utter shit. Not that mediocre crap, SHIT.... And I have to be honest 90% of the problems I had were based on my own decisions. Actually all of them. Because I should know better than to work too hard, eat junk food, buy fruit at a supermarket that ALWAYS gives me issues, or trust someone. All stupid ideas and all things I continue to do. So now I am off to la la land and desperately praying to God hoping he has pity on me and gives me an okay pain day tomorrow. After all i think today was punishment enough for whatever I must of done wrong.

Acceptance?

"I wanna heal, I wanna feel what I thought was never real
I wanna let go of the pain I’ve felt so long
(Erase all the pain till it’s gone)
I wanna heal, I wanna feel like I’m close to something real
I wanna find something I’ve wanted all along
Somewhere I belong"

Have you ever felt like the pain was your life? I was speaking to a friend at my church group tonight about how this has encompassed my life. I try to ignore it and pretend it's not there but then I get sick. I stopped talking meds and don't watch what I eat or what I do for exercise  and then I crash. I'm basically just making myself sicker. And I hate it. I hate not wanting to date because eventually I'll have to tell them I'm sick. And they react one of two ways. Either "OMG..... really? um... welll...." awkward! OR they act like your mother and nurse and smother you thinking you're fragile and breakable.

I just want to be better. I just want to get over it. It's like I'm haunted. I just can't get out of this cage and it's suffocating me. Every time I get prayer I feel nothing. I've had one minor healing and that's it. It's like God is saying no. It hurts. It hurts that he's letting me hurt. I don't know how many of you reading my blog are christians but if you are doesn't it hurt? I get so angry at God. Why'd you give me this illness? this depression? These personality traits from being abused as a child and as a girlfriend WHY???? ANd there's no answer. May never be. And I'm just trying to find the peace to accept that.

SIlent Killer

For many people who have fibromyalgia depression holds a key spot in their everyday life. In my life I've suffered from depression since I was about twelve years old. When the doctors say that it kills? It does. Every day becomes a struggle under the cloud of depression. I specifically suffer from chronic depression and have since before fibromyalgia make it's first appearance in my life. However, when the pain and sleeping issues started up I became worse and worse until finally I did everything possible to distract myself from my thoughts. On a given day I can be super happy and doing well and then for no apparent reason I'll become so incredibly depressed that I'll actually consider suicide. Does it make sense? No. Would I or Will I kill myself? No. But that doesn't change the feelings.

One thing That I've noticed is that every time I have an episode it lasts about twelve hours unless there is a specific trigger.  Recently I was in a semi relationship with my best friend. He loves me as much as he has ever loved anyone. I love him and almost feel married at heart to him. But through my relationship with him I finally realized what the quote "Sometimes love is not enough" actually means. I have had two major relationships where I felt "married" to the person. Neither one worked out. The high that comes from being in a loving relationship is almost addictive. You want more and more and more until finally.... when the relationship ends you crash and burn much like a Junkie who has been too long without a fix. This is a metaphor for manic depression. Excessive highs and then extreme lows.

I get these all the time. Last few days have been amazing. I was so incredibly happy that people were like "have you met someone?" "are you still sick you look so happy?" "wow girl you are glowing!" And then late last night into today all I've heard is "Are you okay?" "You look really down do you need to talk?" Because it is THAT visible. And the kicker is that people can see the depression but not the chronic pain. And the pain is usually what triggers the episodes. Somestimes it comes from a rough family get together where things go downhill or a potential relationship that has come screeching to a halt. But either way the pain magnifies the depression I already have to an extreme. When you can't get out of bed. When you aren't hungry. I've barely had anything to eat the last few days. I'm not hungry. Now I'm not in danger of starving or anything. I'm doing fine health wise. Hell it's probably helping me detox from sugar and stuff ironically enough. Odd that... that depression would help my fibromyalgia while the stress from the depression hurts the fibromyalgia. :P

The one thing I want you all the understand: Depression will not just go away. If you are in chronic pain you will have this demon stalking you constantly. Be vigilant. If you find yourself slipping into depression episodes take action! Tonight I ate a ton of chocolate and spent time with some church friends. I feel 100x better now. Even just telling a friend that I was having issues helped. Hell I haven't even told my counselor that I"m depressed. She knows somehow though, I read her notes when she left them visible one day. Reading upside down is a life saver. ANYWAY. Take action. I doubt I know anyone who may read this, but if you need to talk send me a message or comment annoymously. I pray every day for people with fibromyalgia, chronic fatigue, depression, etc and I"d love to pray for you or help you walk through this. Like I said I've lived with this monster, this demon for eight years now. It may win a few skirmishes but I'm winning the war, thank god! Be safe. Be content. and most of all Know you are loved.

Jumpy and Embarrassed

I know that I mainly post just fibromyalgia stuff on here but I think that most of the people researching this probably have PTSD (Post Traumatic Stress Disorder) as well. I always think that I'm doing so much better with everything and then it hits me like a rock. My counselor says it's because there were multiple traumatic events, some of which were repeated at different times in different ways, creating multiple triggers and reactions.

For example I heard the Reliant K song "The Best Thing" today which I used to love. It was the song Russ said reminded him of me. Now apparently all it does is make me panicky and drop things. Heard the song as I was working on some stuff, dropped some stuff all over my floor when I recognized the song. It all comes flashing back you know? Even though that song wasn't playing at the bad moments it still reminds me. I had a girl who I go to church with go out to eat with me today. She apparently realized we used to be in a relationship when his little sister Gloria messaged me on my wall calling me "Sis". I let her go on talking about him and the family for about five minutes while all the time I was having a growing difficulty breathing steadily and I felt about ready to jump out of my skin. Finally, another girl who was with us stopped her saying "We don't talk about him around Serena, he tried to rape her and was physically abusive". She immediately stopped talking and apologized but I could tell from the look she gave me that she had doubts and questions. Whatever. One thing I've learned is that trying to reason with others about things that hurt that much never works out.

Another example: tickling. This has multiple triggers because it wasn't just one event or one person who caused the trauma. Literally can lead to me bawling my eyes out. My dad tried tickling me a few months ago, I was sitting on the floor and he came down on top of me trying to "joke around". I couldn't even tell him to stop. I couldn't seem to breathe or speak. I froze. Curled up into a ball and just didn't move. When he backed off my body went into flee mode and I scrambled over to the corner and literally just rocked back and forth crying. Dad felt terrible about it and still to this day apologizes for it about once a week but all it does is make me embarrassed. Have any of you ever had one of those "I can't believe my body is betraying me like this" moments? I keep trying to explain to him that it was because someone was coming from above, blocked out the light, and was physically overpowering me PLUS the tickling that did it. But he still swears that there's something I'm not telling him. And there is. He has no idea that it went beyond Russ. But he never needs to know.

Some people have issues with loud sudden noises, they can be problematic if any of my other triggers have already set me off. I'm very jumpy, sudden noises or movements cause me to flinch. Waking up with someone else in my bed and/or touching me can do it too. I had my cousin Allie over a while back, I was watching her and had set her up on the couch. She crawled into my bed at some point during the night and had layed on my stomach to sleep (probably reminiscent of her sleeping on my mom's stomach as a baby). When I woke up I just froze not knowing what was going on. I quickly figured it out but for those few seconds I freaked out.  Never did get back to sleep that night.

PTSD can be caused from an accident, abusive situation, and many many other things but from all that I've seen it's definitely prominent in FIBRO symptoms. Stress can induce Fibro, so when someone has PTSD often times they are under stress or have been under stress. The effects of this weaken the body, tighten the muscles to the point of pain and exhaustion, and cause a multitude of other problems. If you have PTSD I really encourage you to seek help for it. Eventually I know that I'll get over my triggers. After all I've come a long way. Even having a guy touch me used to set me off but now I can sit next to them, give them hugs, and without much of an issue. It's taken a lot of effort but it has helped dramatically in my symptoms. Really, if you haven't checked it out you need to. Do it for yourself.

New findings

http://www.webmd.com/fibromyalgia/news/20110513/fibromyalgia-pain-takes-toll-on-everyday-life?src=RSS_PUBLIC. Really important findings by polling fibromites. Everyone should take a look. Kinda hurts my last post but oh well :p

Insensitivity Innoculation

I may very well hurt the next person who comments on how being chronically ill is going to affect my relationships. I know I've ranted about this before but people continue to amaze me at how insensitive they can be. I understand that people who are well don't see another person who is well willing to deal with me being sick. I get that.... really...and I also get why people commit assault... very well actually.

I've had my grandmother mention it in passing which only slightly aggravated me. And of course I've had the numerous coworkers who go "Oh... you can't do this.. or that... how the hell do you expect to get married" .... well gee merry martha can't we go on roller coaster of negativity again? It was a lot of fun!

Probably the worst one I've had was fairly recent. My father. The man who is basically me with male genitalia and as many ex-wives as some people have cars in their driveway. He actually thought he was okay to go and lecture me on marriage. Good try .... I believe his direct line of thinking was like "You know I love you right Serena? I really do. But I honestly can't picture anyone willing to put up with you for the rest of your life".... email format.... no joke. Hey dad? You're as jackass.... but you know I love you right? idiot....  He knows so much of me and how I tick and yet didn't see this as being hurtful. I can't even imagine him being ignorant he was just pretending he didn't know it would cut like a knife (insert old skating song....)

For any of you who are reading this in order to learn from a fibromite about all you can do to help your loved one with a chronic illness...... NEVER NEVER NEVER SAY THIS! Ever! In ANY form! It is not helpful and with probably result in your loved one throwing something scalding or very heavy at your face. Because if you are friends with this person they will then question how hard it is for you for to be their friend... and you'll come up short in comparison deary, never fear. If you are family to this person you are forever going to be blacklisted in personal chats (well... this might actually be helpful to some of you) and they will never speak to you again about things that bother them. And if you are anyone else who was just trying to show that you really understand how badly their life is going to suck, you are indeed a moron and an insensitive cad.


On a brighter note, I've spoken with my grandmother about me probably never marrying and she says if I have kids on my own through a sperm bank or adoption she won't write me out of her will or refuse to speak to me again, she'll just pray for my soul and the soul of any children I have.... definitely more positive than I was thinking.....

And if you are reading this as someone who has a chronic illness please listen very carefully. Anyone who ever says this to you "Oh wow you'll probably never find a husband, have kids etc etc etc" is a complete idiot and knows nothing about your illness. At first I thought this was true but it really isn't at all. I've come to know many people who have fibromyalgia, arthritis, lupus, etc who had a family and then got sick and retained that family or else had the illness and then attained a family. It's definitely hard work and not for the faint of heart but it CAN happen. Just keep searching and if you happen to find a spare guy throw him my way will ya? I could use all the help in that department that I can find. Last date I had constantly asked me if I had my cane just in case, when we'd go out, or ask me if i'd taken my meds like I was supposed to. I almost and I do same ALMOST remembered the guy who said I had too much "baggage" fondly.... it was sad. Guy was nice (not the baggage guy) but there can almost me too much awareness and acceptance of an illness. Good luck fibromites!!!

Sad Ponderings

A friend of mine was talking to me about her relationship problems today at work. Her boyfriend is giving her all these issues etc etc doesn't care about her feelings etc etc and then she said something that stopped me dead in my tracks "It's got to be hard for you considering your past dealings with love and with you being sick and everything to actually hope about a good relationship" Wow.... thank you so much for kicking me in the teeth... that was great.


Thing is... She's right. I can name on one hand with room to spare the amount of "good" relationships that I've seen. My Uncle Joey and his wonderful wife, My youth pastor and his wife, .... and... um.... okay yeah so a LOT of room! And it's not like I don't know amazing men and women. I do. But it still doesn't work out for them. How am I supposed to believe it will work out for me considering all the issues I'm still dealing with.

On a happier note my guinea pig "Megatron" is doing well and "popcorning" around his cage like crazy :p DEFINITELY cool :)

Clumsy and Clueless

The brain fog has been TERRIBLE lately! I can think normally and be absolutely fine and then everything is gone... just... what was I saying again? :p And working at a coffee shop I would love to have some amount of control over my body.... I've scalded myself at least seven times this week. Only good thing about fibromyalgia is sometimes not being able to feel pain or not as much as I should. So when I dumped a coffee all over myself earlier I just yelped and then said "awwwwww shit!" like a million times instead of screaming like a ... well like a girl. Does anyone else have more issues with brain fog and and being clumsy when they push themselves during a flare up? I know someone has to read this blog I keep getting the notifications :p

http://www.back-fibromyalgia-pain.com/fibromyalgia-relief-from-depression/

Self Help

Practicing self help techniques for Fibromyalgia can provide Relief from Depression. You can regain control of your life again, you can learn how to effectively  self-manage fibromyalgia for  relief from depression.  Fibromyalgia patients suffering from depression feel hopeless, yet there are a number of  self help techniques that are extremely helpful and supportive.

Fibromyalgia Relief from Depression, Self Help Techniques

1. Follow a diet low in refined sugars and carbohydrates, and high in fresh vegetables and protein.  Sugars, starches, and caffeine make the patient feel worse when the rebound crash sets in.

2. Exercise daily.  Exercise releases endorphins that make the patient feel good. It is known to boost moods, which improves the  symptoms, an effective fibromyalgia relief from depression.

3. Supplement the diet with fish oil, flaxseed oil, and other food sources high in essential fatty acids.

4. Reduce or eliminate the use of alcohol and drugs.  Alcohol and drugs cause a deeper depression.

5. Get at least 15 minutes of sunshine daily.

6. Get at least 8 hours of sleep a night and go to sleep at a consistent hour.  Ideally sleep shortly after sunset, rising at sunrise.
7. Practice coping techniques like breathing practices, spiritual pursuits, laughing and forgiving.  See Breathing, Yoga, Meditation and Tai Chi for relief from fibromyalgia depression.

8. Don’t hide, go out, talk, seek emotional support from professionals, friends and family.

9. Join a depression support group, if this is difficult there are many online communities and forums available. Contact http://www.depression-forums.com to find support and relief from fibromyalgia depression.

10. Eliminate or reduce unnecessary tasks from the daily schedule.

11. Avoid making long-term commitments or important decisions.

12. Focus on the positive aspects of life.  Studies have shown that negative thinkers are more depressed, stay in a state of depression longer, and are more likely to develop depression again.

13. Do not feel guilty, only assume responsibility for your actions.

14. Practice forgiveness – of yourself and others.

15. Get out of bed in the morning and do something, do not linger and think. Get out, go for a walk, get some fresh air and sunshine.  Meet with a friend. Break the normal routine, it works wonders for depression.  Studies consistently show that activity decreases fibromyalgia depression.

16. Volunteer or do something for somebody else, something that is fulfilling. This gives purpose to life and provides incredible relief from fibromyalgia depression.

Take responsibility for your recovery, only YOU can have the power to recover.  It is your decision to follow the self help techniques for the relief from fibromyalgia depression.  See a physician if necessary, make the necessary fearless lifestyle changes, exercise and move on.

You can do it!  Give your self a boost with the Fibromyalgia Depression help products which help  stabilize the mind moods.

Sunny Shit

Seriously people, what's with the need for everyone around you to be sunny and spouting off about rainbows and butterflies. SHUT UP! No, I don't look happy. Yes, I'm probably raining on your parade but saying something other than "oh i'm good" in response to your "hey how you doing?". No, I don't look well at all, probably look like I haven't slept well... haven't in years, your point being? Yes, I tend to be rather testy at times. I'm in chronic pain. Keep hassling me, telling me that you need me to be sunny and cheery all the time? And you're going to be in some chronic pain yourself, at least until the casts can come off.

Hating Hurting

I try to work though it and do what's best for my body, but it kills me. Getting up every morning when I feel terrible. Driving to work even though it hurts. Smiling and being nice to everyone even though my brain feels foggy and the pain makes me want to start screaming. It's killing me. The thought of another 50 years of this? It's terrifying. I'm not looking forward to the future... and for a girl who had such big dreams... it hurts more than the fibromyalgia