What a SHOCKER!!

loup
27 September 2009

Thanks to Sarah for posting this on her FB …

Fibromyalgia Pronounced “Real Disease”

Neurological signs common with fibromyalgia

Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)

By Michelle Rizzo

NEW YORK (Reuters Health) – Fibromyalgia isn’t all in your head, new research suggests.

In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other “neurological” signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It’s a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body
of literature suggesting that the condition is real and also support the possibility that a “neuroanatomical” cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.

All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurological symptoms.

In 27 of 29 neurological categories tested, significantly more neurological symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.

The greatest differences were found for light sensitivity, or “photophobia,” seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more “sensory” problems, motor abnormalities and gait problems.

Within the fibromyalgia group, there were significant correlations between several neurological signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurological test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurological tests.

These observations, Watson told Reuters Health, underscore the need for “careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints.”

Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

This is something I have suspected for years. I fall a lot – I have no balance and very little coordination any more. I have chemical, audio and light sensitivity that can bring me to a full halt with a mere whisper or hint of a scent.

I have tingling in strange places and it travels. It will be in my lower back then the soles of my feet. Headaches, insomnia and unbelievable pain from things like the weight of the sheets on my skin at night. I bruise so easily and frequently I have stopped trying to figure out where they’ve come from.

I now believe that I have had Fibromyalgia all of my life – with minimal flare ups until after my parents death in 2002. I think it was all written off as “all in my head” or something else. Walking short Volksmarch trails could bring me to tears I was in so much pain. By the end of 6 km for a heathy 9 year old should NOT result in so much pain she can barely finish and so sore after she can barely move. Lifelong insomnia and strange tremors, tingles and twitches that before I had just written off because doctors never found anything wrong with me. Great heart, good numbers, “you’re healthy -just get off the couch” … Seriously one quack told me this. While I was running the house, helping LK run his business and working a full time high stress never sit down for a moment job. I guess I could have gotten off the exam table and exercised my legs by putting my size 9 foot in that guy’s ass. But who has that kind of energy with Fibromyalgia

Too Quiet

loup
28 July 2009

I have been sort of twisting in the wind lately. A lot of doctors appointments and a lot of pain. Having multiple teeth extracted (the hard way – with a simple local). I am hoping nothing pushes my nerve block back again. I am in desperation here to get the hip pain to back off.

I read a few articles last night and this morning about fibromyalgia and how it basically kills off bits of your brain. They call it “Fibro Fog” and thought it was just from lack of sleep but it really is brain cells dying. Lovely. One doctor said from what he has seen and studied so far it is like mini-alzheimer’s …. something else my therapist and I will be discussing.

Pain levels have been through the roof and I am changing meds so my whole life has been thrown off track.

“I picked a bad week to quick sniffing glue.”

P.S. I still hate Michael Vick — I was hoping some big ass murderer who has a soft spot for animals would have shanked him. No such luck.

True Enough

loup
22 March 2009

I am learning to slow down and enjoy my own pace.
I am appreciating the people around me more these days.
I can see the effects of gravity on my body, no matter how much I exercise or watch what I eat – aging is upon me.
The lines on my face are indicative of my life story, and I am learning to appreciate them.
I am listening more to my “inner voices”, rather than taking care of everyone else.
As I mature, I seem to be gaining a sense of inner peace.
I am moving away from frantically meeting others’ expectations and developing my own priorities.
My intimate relationships are complicated and changing.
I am wondering whether all of what I am involved in makes sense.

I found this somewhere online – I saved it — I came across it again today. I am trying to live for me and keep away from feeling sorry for myself because of all of the things my health prevents me from doing and look toward the things I can still do.

Fibromyalgia

loup
4 March 2009

I was told by my diagnosing doctor, as if it were some reason to jump up and down with joy, that Fibromyalgia was not progressive and it is not fatal.

I think my doctor was full of shit on the first part. If it isn’t progressive why for the last 3 years have my episodes gotten worse and lasted longer than one before?

I think what bothers me the most is that the Arthritis Foundation says that Fibromyalgia is the 2nd most diagnosed form of Arthritis – yet no one really knows about it. Even the specialists don’t know that much.

I feel like I have been plowed over by a Mack truck on a daily basis, and my muscles and brain function are so off kilter it feels like I am swimming in pudding. I don’t “look” sick – but I am. I am disabled. I can not work because while I hurt all of the time enough to keep me from working – it gets worse. There are days I can not get out of bed. There are days I can get out of bed but I can’t remember how to spell my own name for the brain fog. It is sad and it upsets me that I am young and this shit has destroyed who I was.

Fibromyalgia has stolen so much from me. And yet it has given so much to me.

I now know the side effects of every pain med, SSRI, SSNI, and NSAID on the market. I know which foods will send me running to the bathroom and which scents, cleaners and other seemingly harmless products “everyone” uses in daily life will make my day miserable. I learn new and exciting ways to get down stairs or into a pick up truck without sending pain throughout my body – unfortunately I usually look like some crazed goof doing it.

Most of the people I know don’t have a reference of what it is even like – remotely. There are few shining souls that show me compassion and empathy without understanding. And unfortunately there are a few that even have Fibro – so they know first hand. It makes me sad that people I love have to suffer like this. I wouldn’t wish this shit on my worst enemy. Well, maybe a few of them. = )

If you are reading this – I will ask you this. Take a brief moment and look up a little information about Fibromyalgia. If you know someone with Fibro – don’t treat them like outcasts or act like they are just being silly or making anything up. It is real, it hurts and it is terribly hard to function with this crap on a good day much less a bad flare day. Show a little patience.

* http://www.fmaware.org

* http://www.butyoudontlooksick.com a great site – with an even better theory/explanation to those who don’t have fibro .. http://www.butyoudontlooksick.com/the_spoon_theory/

Again with the dreams

loup
10 October 2008

Maybe I will start a dream journal. Some of these could be good ideas for stories or movies!!

Short version: I am stealing cars – but only to move them a block down or one parking aisle over. Then watching the reaction of the people as they come to the realization that their car has been stolen. Even better that it hasn’t been “stolen” but maybe they are just crazy.

Crazy.

Welcome to my world.

Kodachrome

loup
9 October 2008

I heard this song in my dream last night. I have weird dreams. Especially on the new meds. It seems they have gotten stranger than usual. I mean how strange is it to hear Paul Simon singing “I love to take a photograph So Mama, don’t take my Kodachrome away” … pretty frickin’ strange I think.

Today isn’t shaping up to be a good day either. I woke up with a headache, sore neck, and after a long hot shower I am pretty sure the nerve block is wearing off in my back.

I can accept that this is my life – pain. The one thing that really bothers me and makes it hard to deal with is the lack of predictability of it all. One day I feel like I can do many things, and even though I don’t over do it on that particular day the next I feel like I have been hit by a Mack truck.

Monday it hurts in my legs, Tuesday morning in my arms – in the evening my back, Wednesday just tired, Thursday .. well you get the point. There is no plan. And for a gal with a compulsive nature to plan and schedule – it sucks the big one.

As I move along with everything that is wrong with me I just hope they don’t take my Kodachrome away. = )

normal

loup
6 November 2003

I suppose being normal is overrated anyway. Or maybe that is just
something abnormal people say to make themselves feel better about not
being normal. I don’t feel normal. Some of the time I just don’t think
about how far away from the herd I am and I just live day to day and
then there are times that it slaps me in my face how different I am
from sheeple. It can happen when people talk about their parents in the
present tense … “My mom and I are going shopping tomorrow.” Then I
wish my mom and I could go shopping again. Or when the cashier at the
grocery store sees a child in line, ooos and aahs over it, and then
admits how much she LOVES children and don’t I just love children too.
I sometimes tell them “Yes, they are delicious.” but recently I just
ignore them like I didn’t hear them, or let the expression on my face
say it all.
There are other things that seperate me from them … my distaste for
clothes shopping, my contempt for government, disgust at those who soak
in perfume and wrap themselves in fashion. I don’t know it just doesn’t
sound like I am that far from normal to me… or am I?

party of one

loup
1 November 2003

I picked up “Party of One: A Loners’ Manifesto” at the library this
week by Anneli Rufus. It is very interesting and I never considered
myself a “loner” before. I just hate people. I am only a few pages into
this adventure and already I am beginning to believe I have been a
loner all along. I don’t like crowds and avoid them at every
opportunity, an outing with friends will have me needing a weekend of
pure quiet to recover. I married an extrovert. Not only is he an
extrovert he actually likes being around people and helping them. We
even each other out. I wonder how many are out there like me. People
who think differently, learn differently, act differently.
I doubt we will ever know because it isn’t like we are going to start a
support group to meet others … or are we? There is probably more than
a few on the internet. I just looked and there are quite a few. Do you
think the people who join those groups will ever see the irony of
joining a support group for loners?

visitors

loup
3 July 2003

Today is my dad’s 60th birthday. A few years ago my mom and I talked
about throwing him a big party. We were going to go all out for it. It
isn’t every day your dad turns 60 after all right? I sure do miss him.
I have been thinking about mom and dad a lot this week. I don’t mind my
life right now, but I sure as hell didn’t think I would be “here” at 30. I have grown a lot over the last year and it has been a challenge but I think I am a better person for the struggles. It sounds like a crock of shit when people tell you that hard times make you stronger and you come out better for having lived
through it — but I guess it is true.
I know one thing is certain, it puts everything into perspective. You
lose all interest in the petty bullshit of day to day life and start to
weed out the people that bring nothing but grief and negativity to the
table. I just don’t have time or the interest to deal with that silly
shit anymore. Life is far to short.

Childfree?

loup
5 December 2001

I wanted to tell you why I don’t want children so that it may help others who may be on the fence realize that they are not alone and that there is NOTHING wrong with them. I have also found that there is a prejudice against people who don’t want kids.

The next time someone who isn’t sure about what they are feeling and think they are losing their minds comes online and searches the word childfree maybe seeing that there are so many of us out here, they won’t feel alone in the sea of commercials for diapers, Dizzkneeland, and Brats R Us. Also to help stop people from thinking all of that crazy bullshit that people feel when you tell them you don’t want/ like children. Since I can remember I have never wanted children. I’ve never liked kids, even when I was a child I didn’t like to be around them. I didn’t play well with others so to speak. I don’t want the mess that children make; the smells children make, the noise children make, the stress in a relationship they can cause, the financial turmoil they can put you in, the list goes on. It is a personal choice, and I can live with it.

And it isn’t that I hate children. I dislike, as many people – parents and non-parents alike, ill-behaved children. But many of my friends and family have children that I enjoy spending time with, but I enjoy going back to my quiet home much more.

I recently had a Tubal Ligation as a form of birth control. My doctors didn’t hesitate to agree to this after I explained why I wanted it done. If I ever decide to have children I will adopt, after all, my Daddy is not linked to me by DNA why should that kind of thing matter to me if I have kids. Love is love.

Just don’t let people get you down and certainly try not to let their short-comings as a parent or human give you pause with your choices in life. Make yourself happy.