Fibromyalgia is a fickle thing.
The pain can change.
One day, week, month, year, etc I could be feeling a certain kind of pain in one area, the next could be all over pain or a different area or different pain.
It's not just a different "disease" from person to person, but symptoms change randomly. So randomly I cant predict it.
It is my new meds? the meds I missed? is it something I did? something I didn't do this week? the weather 200 miles away? a butterfly in Asia? Okay the last one is a stretch, but the others are not only possible, but have happened.
How do you deal with random jumps in pain?!
How do you treat something like that?!
Fibromyalgia is a fickle thing.
Except that the pain never goes away.
Saturday, August 31, 2013
Wednesday, August 28, 2013
Fatigue
[BLOG FOUR]
Fatigue.
Sounds non-threatening doesn't it? After all, how can being tired hurt your life, everyone gets tired, right?
Well, there is a big difference between being tired at the end of a few days a month, or even nightly than being fatigued every moment of every night and day. No relief.
Then there is the extra fatigue that hit you like a BUS! and you crash and nothing much can keep you from sleeping because your body has had enough. You will sleep. You can try to fight it, but you will sleep.
And when you wake up you will be tired. Still. Every time you wake up.
Tired when walking, cooking, doing laundry, resting, watching tv, sleeping, waking up. At no moment is there a "not tired" moment.
Tired and Pain are both like Chinese water torture. It will wear you down and drive you crazy. Fibromyaliga is water torture using pain as the water. Once the pain and fatigue start, it never stops.
Fatigue.
Sounds non-threatening doesn't it? After all, how can being tired hurt your life, everyone gets tired, right?
Well, there is a big difference between being tired at the end of a few days a month, or even nightly than being fatigued every moment of every night and day. No relief.
Then there is the extra fatigue that hit you like a BUS! and you crash and nothing much can keep you from sleeping because your body has had enough. You will sleep. You can try to fight it, but you will sleep.
And when you wake up you will be tired. Still. Every time you wake up.
Tired when walking, cooking, doing laundry, resting, watching tv, sleeping, waking up. At no moment is there a "not tired" moment.
Tired and Pain are both like Chinese water torture. It will wear you down and drive you crazy. Fibromyaliga is water torture using pain as the water. Once the pain and fatigue start, it never stops.
Monday, August 26, 2013
How the pain feels.
[For BLOG THREE]
Have you ever been to an amusement park and spent the day running around in the heat and riding rides and then on the way home feel odd and hurt all over and almost as if you were being touched by electricity? Well, that's me, any given time, all the time actually. That's my life on Fibro. The exhausting pain without the amusement park fun.
And that's just the basic pain, that's not if I do something, pull something, have a cramp, twist wrong, ect.... That's just how I feel. Always. But as for the other stuff, It's easy to hurt in other way, any way, I can move ... or not move, and I will hurt.
So when the back goes out [of place] which happens often cause my body is weak, the knees go, then ankles.... This past week has added a new pain because with all that I got to have my rib become displaced because the tendons are weak. oh joy (sarcasm) The pain was astounding. (not sarcasm)
So I either hide in fear of any little things making me hurt a thousand times more than it should, or I live a little (very little) and hurt oh so much more. But wait, hiding and not doing anything hurts. So yeah, I can't win for loosing.
"If it weren't for bad luck, I'd have no luck at all!"
Have you ever been to an amusement park and spent the day running around in the heat and riding rides and then on the way home feel odd and hurt all over and almost as if you were being touched by electricity? Well, that's me, any given time, all the time actually. That's my life on Fibro. The exhausting pain without the amusement park fun.
And that's just the basic pain, that's not if I do something, pull something, have a cramp, twist wrong, ect.... That's just how I feel. Always. But as for the other stuff, It's easy to hurt in other way, any way, I can move ... or not move, and I will hurt.
So when the back goes out [of place] which happens often cause my body is weak, the knees go, then ankles.... This past week has added a new pain because with all that I got to have my rib become displaced because the tendons are weak. oh joy (sarcasm) The pain was astounding. (not sarcasm)
So I either hide in fear of any little things making me hurt a thousand times more than it should, or I live a little (very little) and hurt oh so much more. But wait, hiding and not doing anything hurts. So yeah, I can't win for loosing.
"If it weren't for bad luck, I'd have no luck at all!"
Sunday, August 25, 2013
How can you hurt from head to toe?
Fibromyalgia (FM or FMS) is characterized by chronic widespread pain and allodynia [pain from stimuli that shouldn't cause pain].
Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently [not always] combined with psychiatric conditions such as depression and anxiety and stress-related disorders such as post-traumatic stress disorder. Not all fibromyalgia patients experience all associated symptoms.
There is evidence that environmental factors and certain genes increase the risk of developing fibromyalgia – these same genes are also associated with other functional somatic syndromes and major depressive disorder.
Research shows the pain control system in the skin, spinal cord, and brain of fibromyalgia patients is overloaded, offering a reason for why you ache all over. In particular, immune cells that generally do not cause pain contribute to the flu-like fibro symptoms that make your whole body hurt.
Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently [not always] combined with psychiatric conditions such as depression and anxiety and stress-related disorders such as post-traumatic stress disorder. Not all fibromyalgia patients experience all associated symptoms.
There is evidence that environmental factors and certain genes increase the risk of developing fibromyalgia – these same genes are also associated with other functional somatic syndromes and major depressive disorder.
Research shows the pain control system in the skin, spinal cord, and brain of fibromyalgia patients is overloaded, offering a reason for why you ache all over. In particular, immune cells that generally do not cause pain contribute to the flu-like fibro symptoms that make your whole body hurt.
Saturday, August 24, 2013
Chronic Pain is like....
Chronic Pain is like....
Chinese water torture.
The person without it think you mean a few drops of water,
but you know its a steady drop that can dig out ravines in rock mountains.
Chinese water torture.
The person without it think you mean a few drops of water,
but you know its a steady drop that can dig out ravines in rock mountains.
Friday, August 23, 2013
Thursday, August 22, 2013
Fibro
I have had Fibromyaliga 27.5 years.
My first attack of Fibro was the summer I was 18.
I am 45 years old.
I was diagnosed less than a year ago.
I have had at least 5 major increases.
I am crippled by pain to the point last year before my diagnosis I was starving to death because I was to weak from the pain to feed myself.
Over the years I was told I had depression, anxiety, bi-polar, and this may be my favorite: "Depression with out depressive thoughts"!
I have ever symptom Fibro has but 2 (one being a male problem) and one being Reynold's Syndrome which my mom has. (Yes, My mom has undiagnosis Fibro and Im sure her Father had it and we can trace it up his family tree. )
But having EVERY symptom a disease has where there is at least 80+ symptoms and there was no doctor in 26 years that could figure it out?!
My first attack of Fibro was the summer I was 18.
I am 45 years old.
I was diagnosed less than a year ago.
I have had at least 5 major increases.
I am crippled by pain to the point last year before my diagnosis I was starving to death because I was to weak from the pain to feed myself.
Over the years I was told I had depression, anxiety, bi-polar, and this may be my favorite: "Depression with out depressive thoughts"!
I have ever symptom Fibro has but 2 (one being a male problem) and one being Reynold's Syndrome which my mom has. (Yes, My mom has undiagnosis Fibro and Im sure her Father had it and we can trace it up his family tree. )
But having EVERY symptom a disease has where there is at least 80+ symptoms and there was no doctor in 26 years that could figure it out?!
Fibro and Anxiety
[Count as THIRD BLOG]
Because Fibro affects every nerve in your body it can be devastating to those who have more than a mild case, like me. I have had at least 5 major episodes of Fibro. Let me see if I can explain that.
If you think of Fibro as a body suit of pain, when I was 18 this suit was put on me. Later when I was in my early 20s another suit was added over that...doubling the pain. Over the course of my adult life I have had at least 5 layers of pain added to my body.
And this isn’t a mild pain, as anyone with Fibro can tell you. Normal pain is like one guy at a ball game yelling. Fibro pain is that guy with a megaphone, the entire cheer squad and the band making noise about pain.
I told my doc the other day that if the pain was noise is was like being on a navy ship where planes land and not having ear protection. It was that debilitating.
And it’s not just one area, it’s all over. It’s everywhere. There is no where I don’t hurt. Some areas hurt worse then others. I have a back injury with arthritis and degenerative disc disease, so of course that area hurts worse.
And now my 3 middle toes are going numb. And I don’t mean mild “going to sleep” numb. If the “mild going to sleep” numb was a teen age boy lifting weights in the garage, my numb is “Mr. Olympia lifting weights” numb. But there is “nothing [other than pain meds to hide the sensation from my brain] to be done, it’s just an effect of the Fibro working on the nerves for so long,” says my doctor.
The meds I’m on now give me some hearing protection, but I can still hear the pain. I can feel the vibrations of the noise; I know the pain is there, just under the surface, waiting for me to miss a dose of my meds, to over do an activity, for my body to adjust to a dose, for something to happen to allow that overwhelming pain to slam into me again.
Anyway, back to the purpose of this writing.
Fibro affects every nerve in the body with pain. Pain causes the brain to go into “Fight or Flight” mode. Meaning it pumps out chemicals that make you “revved up” or “scared” depending on how you (consciously or unconsciously) choose to think when you feel them.
This is why you sometimes “feel your stomach drop” when you stub your toe. Your body does not know the difference in “safe” toe pain and a serious injury pain until the brain has time to let it know. To the pain part of the brain, any & all pain means “Let loose the adrenalin! The body is under attack!”
This Pain-Adrenalin combination also brings another life altering symptom: Fatigue. The body can only handle so much adrenalin before it needs a break, but if you have Fibro, you don’t get a break. The pain is always there when you have Fibro causing the body to make adrenalin all the time. With no real rest. And ‘round & ‘round she goes.
Because Fibro affects every nerve in your body it can be devastating to those who have more than a mild case, like me. I have had at least 5 major episodes of Fibro. Let me see if I can explain that.
If you think of Fibro as a body suit of pain, when I was 18 this suit was put on me. Later when I was in my early 20s another suit was added over that...doubling the pain. Over the course of my adult life I have had at least 5 layers of pain added to my body.
And this isn’t a mild pain, as anyone with Fibro can tell you. Normal pain is like one guy at a ball game yelling. Fibro pain is that guy with a megaphone, the entire cheer squad and the band making noise about pain.
I told my doc the other day that if the pain was noise is was like being on a navy ship where planes land and not having ear protection. It was that debilitating.
And it’s not just one area, it’s all over. It’s everywhere. There is no where I don’t hurt. Some areas hurt worse then others. I have a back injury with arthritis and degenerative disc disease, so of course that area hurts worse.
And now my 3 middle toes are going numb. And I don’t mean mild “going to sleep” numb. If the “mild going to sleep” numb was a teen age boy lifting weights in the garage, my numb is “Mr. Olympia lifting weights” numb. But there is “nothing [other than pain meds to hide the sensation from my brain] to be done, it’s just an effect of the Fibro working on the nerves for so long,” says my doctor.
The meds I’m on now give me some hearing protection, but I can still hear the pain. I can feel the vibrations of the noise; I know the pain is there, just under the surface, waiting for me to miss a dose of my meds, to over do an activity, for my body to adjust to a dose, for something to happen to allow that overwhelming pain to slam into me again.
Anyway, back to the purpose of this writing.
Fibro affects every nerve in the body with pain. Pain causes the brain to go into “Fight or Flight” mode. Meaning it pumps out chemicals that make you “revved up” or “scared” depending on how you (consciously or unconsciously) choose to think when you feel them.
This is why you sometimes “feel your stomach drop” when you stub your toe. Your body does not know the difference in “safe” toe pain and a serious injury pain until the brain has time to let it know. To the pain part of the brain, any & all pain means “Let loose the adrenalin! The body is under attack!”
This Pain-Adrenalin combination also brings another life altering symptom: Fatigue. The body can only handle so much adrenalin before it needs a break, but if you have Fibro, you don’t get a break. The pain is always there when you have Fibro causing the body to make adrenalin all the time. With no real rest. And ‘round & ‘round she goes.
How My Fibro Story Began
[Count as SECOND BLOG]
People with Fibromyalgia seem to have a genetic tendency for it, but not everyone with this tendency will get it. No one knows why one person in a family will get it and another will not, or why women are more likely to be diagnosed with it than men. It does seem to have certain triggers.
My trigger was extreme stress. I was under such stress I was loosing my hair, I could hardly stand up, I couldn’t remember if I ate, and didn’t care if I did or didn’t.
The summer I was 18, I came back from a Mexico missions trip with 2nd degree sunburn. I remember the sunburn, and the following tan that lasted through the next summer because I don’t really tan.
That summer I lost both my grandfathers 3 months to the day apart. I had never lost anyone that close to me. The first loss was to an “accident” in a nursing home and the other to leukemia. Both were viewed in the same funeral home, same room for the service, buried about 20 feet apart. The first was my PawPaw and I lived my entire life next to him until he went into the nursing home. Then I visited him every day. The other GrandPa lived 5 miles down the road and I visited him every Sunday of my life.
I remember standing halfway between my Grandfather’s graves not knowing which one to look at and hearing one of my cousins ask something about why wasn’t I over there with them at that one Grandpa’s grave and one of my Aunts say, “Oh yeah, she lost her other Grandpa a while back too. I had forgotten that.”
Also during my 18th summer I lost my job (and wasn’t paid for work I done). I remember more about the job and how badly I was treated there.
I remember my best friend telling me to my face that she had a boyfriend now and didn’t need me anymore. Actually I think she was worried because the guy had showed interest in me first but I turned him down, but whatever, She was gone from my life and telling lies on me “to see if people would believe it” she told me later.
My fiancé cheated on me and we broke up. I had loved him since I was in 3ed grade.
I remember finding a lot of hair after a bath and wondering why. I remember showing my Mom because I was puzzled and she said “Yes, you are too worried about things. You need to quit stressing.” I asked her how, with what I was going through, did I do that, but she didn’t know.
This is about the limit of all I remember about the summer I was 18.
Thing is, I remember being 20 and saying something about pain, when my manager at work said, “You hurt a lot don’t you?” I said, “No more than anybody else. Everybody hurts somewhere all the time,” (shrugging it off as common place, because to me it was). He looked at me oddly. He said, “No, they don’t. Most people never hurt.” Well, it was my turn to be shocked. I was speechless! I had hurt so long that by age 20 pain was just a normal state of being.
People with Fibromyalgia seem to have a genetic tendency for it, but not everyone with this tendency will get it. No one knows why one person in a family will get it and another will not, or why women are more likely to be diagnosed with it than men. It does seem to have certain triggers.
My trigger was extreme stress. I was under such stress I was loosing my hair, I could hardly stand up, I couldn’t remember if I ate, and didn’t care if I did or didn’t.
The summer I was 18, I came back from a Mexico missions trip with 2nd degree sunburn. I remember the sunburn, and the following tan that lasted through the next summer because I don’t really tan.
That summer I lost both my grandfathers 3 months to the day apart. I had never lost anyone that close to me. The first loss was to an “accident” in a nursing home and the other to leukemia. Both were viewed in the same funeral home, same room for the service, buried about 20 feet apart. The first was my PawPaw and I lived my entire life next to him until he went into the nursing home. Then I visited him every day. The other GrandPa lived 5 miles down the road and I visited him every Sunday of my life.
I remember standing halfway between my Grandfather’s graves not knowing which one to look at and hearing one of my cousins ask something about why wasn’t I over there with them at that one Grandpa’s grave and one of my Aunts say, “Oh yeah, she lost her other Grandpa a while back too. I had forgotten that.”
Also during my 18th summer I lost my job (and wasn’t paid for work I done). I remember more about the job and how badly I was treated there.
I remember my best friend telling me to my face that she had a boyfriend now and didn’t need me anymore. Actually I think she was worried because the guy had showed interest in me first but I turned him down, but whatever, She was gone from my life and telling lies on me “to see if people would believe it” she told me later.
My fiancé cheated on me and we broke up. I had loved him since I was in 3ed grade.
I remember finding a lot of hair after a bath and wondering why. I remember showing my Mom because I was puzzled and she said “Yes, you are too worried about things. You need to quit stressing.” I asked her how, with what I was going through, did I do that, but she didn’t know.
This is about the limit of all I remember about the summer I was 18.
Thing is, I remember being 20 and saying something about pain, when my manager at work said, “You hurt a lot don’t you?” I said, “No more than anybody else. Everybody hurts somewhere all the time,” (shrugging it off as common place, because to me it was). He looked at me oddly. He said, “No, they don’t. Most people never hurt.” Well, it was my turn to be shocked. I was speechless! I had hurt so long that by age 20 pain was just a normal state of being.
Fibro sucks!
Fibro sucks!
Pain all over sucks.
Pain that never stops sucks.
Pain that meds can't stop sucks.
Fibro sucks.
Don't tell me you have fibro when you can stand all day working and then do all kinds of things on your free time. MY fibro sucks.
My fibro is all the time.
My fibro took away my life.
My fibro took away ME!
My fibro sucks!
Pain all over sucks.
Pain that never stops sucks.
Pain that meds can't stop sucks.
Fibro sucks.
Don't tell me you have fibro when you can stand all day working and then do all kinds of things on your free time. MY fibro sucks.
My fibro is all the time.
My fibro took away my life.
My fibro took away ME!
My fibro sucks!
Dear Substitute Doctor
Don't tell me to walk even when I have told you I have tried.
And then tell me to go to a chiropractor or masseuse. Hello? Fibro patient here. I can't work. Are YOU gonna pay for that?!
And telling me a massage would cure my figgiting and misplaced rib. Wha? Online it says I need NSTDS
Oh and just because I'm already on pain meds? That doesn't mean I am not in pain and don't need anything more for pain.
Dear Doc, you suck!
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