Embarassed to admit to fibro....

[barb dwyer]

... and it's utterly ridiculous, huh?

alcoholic - no problem.
addict - not a thing...
horse addict - absolutely!

more than likely not altogether healthy
in my consumption of chocolate...

but ... let someone ask me why I'm limping,
or watch me try to get the door open on a 'bad' day...
and it's like ....

fibromyalgia ... well, um... er...

How stupid is that?

I think somewhere deep - I don't think it's dramatic enough a title.

We've got people in the rooms battling cancer,
post - heart attacks, stroke....
and here I come with fibro.

I feel like I don't have a right to mention it.

Does anyone get this?

[dragonheart]

Talk about what you want to.I know my mother has been having pain and dealing with the fibro for years.

[DesertEyes]

Hi there Barb

Originally Posted by barb dwyer

... I feel like I don't have a right to mention it. ...

yeah, I know. I'm not sure where mine comes from. Maybe from my "toxic" childhood in an alcholic home. Maybe I'm just a little too proud, which is my way of covering up a bit of low self-esteem. Maybe a combination of things.

In any case, what I have learned is that being sick is not a "right". It's a misfortune. Some people have bigger misfortunes, some smaller. I got mine. I didn't ask for it, I don't want it, but I'm stuck with it.

I'm grateful that it's _all_ I have to deal with.

People ask my why I always have to be in bed early. Cuz I have a bad heart and I have the energy and stamina of a 90 year old. A lot of people don't get it. Why I have to take so many meds. Cuz my nerves are inflamed and it _hurts_ something wicked.

What works for me is to imagine that I have a 12yr old child with me. A little boy who's survived all the stuff I did, and _he_ has the same disease I have. Would I tell this little boy that he doesn't have a right to mention his pain, his fears?

Goodness no!!! I'd be defending him and taking extra good care of him.

It's one of my character defects, I can take care of others, but I am _terrible_ at taking care of me. So a counselor taught me that "turn it around" technique. Pretend I'm taking care of a 12 year old, and that way I'll take care of me in a round about way. Sounds kind silly but it works for me.

I don't know much about Fibro, but I do know it's an ugly, painful disease. As far as I'm concerned, you have every right to take care of your needs, your health, and your pain. Sure, other people have their own hardships, and they have a right too. We _all_ have a right to take care of ourselves, regardless of the details of our health.

Have a gentle (((( hug ))))) Barb, cuz I know it hurts.

Mike

[barb dwyer]

awwwwww... thanks Mike!!!!!!!

Mike wrote:

What works for me is to imagine that I have a 12yr old child with me. A little boy who's survived all the stuff I did, and _he_ has the same disease I have. Would I tell this little boy that he doesn't have a right to mention his pain, his fears?

I like that. THAT ... is good stuff, there.

What happened was at the meeting, I'd been taking notes and didn't notice we were over an hour into the thing - I needed coffee - so I 'jump up' to get coffee....

... and the world froze.

I had to just STAND there, half-bent over ... I think I said, 'oh no' or something ...
next thing you know -
five men are getting me by the arms and taking me back to my chair
(I'd only got about a step and a half before lockup)
I felt like a killer whale gettin put in a truck, you know?

so I had this WHOLE GROUP of people witness the thing and were looking at me expectantly...

and I found I had a hard time saying the exact name of the thing.

Because one of the women there has inoperable cancer,
another has a metal rod in her spine....

but yeah
I felt like what almost literally brought me to my knees ...
wasn't as serious as theirs.

Anyway - I'm glad you wrote that, Mike.

It's also the people who,
when you DO finally cough it up what the doc said
they blow it off with:
"Oh my exboyfriend's mother (or somebody) has that and she gets around just fine"

*as if* it's inconsequential.

And boy howdy - it is NOT... inconsequential.

[Impurrfect]

(((Barb)))

Though I have no personal experience of this, my stepsister, T, as fibro, as well as a heart that is functioning in the low 20% range. She LOOKS healthy, has 2 beautifuly children, the youngest just started grammar school. She's told me about similar feelings and how she feels guilty that she can't always keep up with her 2 active kids.

My mom had heart problems, and in the last 2-3 years of her life, she began to suffer. Because various organs were shutting down, she retained a ton of fluid, but had no appetite. In the meantime, she TRIED to keep doing what "normal" things she could...and she was extremely upset, many times, at the way people just looked at her as "fat..why don't you lose some of that weight".

She swore she was putting "I TOLD you I was sick" on her headstone when she died, but I didn't do it.

I don't suffer from chronic pain, but having watched 2 people I love who do, it just breaks my heart that you don't feel comfortable saying "I have fibro" and that you don't get the support and understand that you should!

Sending you comforting/gentle hugs and prayers!

Amy

[StayinAlive]

Hey old Friend! Sorry to hear about your fibro....(mumbles under breath myalgia) I don't pretend to know what your going through physicaly. But I have had MS like symptoms for the last 6 months and wasted a lot of good days on not feeling well. Went to ms neurologist and was cleared of that.

Someone told me about mercury poisoning so i went on a heavy metal cleanse(not the band) and i feel better. I am also going to get all my old mercury fillings replaced.

As well had what is called leaky gut which causes the good bacteria to die off and the bad bacteria(Candida) to run amok causing all kinds of neuro toxins that mimic an autoimmune disease like MS, chronic fatigue etc. Still working on balancing out the good bacteria levels and have my good and bad days. But i know where you are coming from trying to explain an intangible problem people cant relate to. Doctors kept trying to tell me i was suffering from depresion ffffft whatever.

Hang in there sister


From RemedyFind: Causes of Fibromyalgia-- Part 2 of 3 - Wellsphere

[stone]

Originally Posted by barb dwyer

I think somewhere deep - I don't think it's dramatic enough a title.

I feel the same about my M.E.

It totally debilitates me some days but I know some people don't take it seriously because there is no real definitive test for it. So I think if I tell people they will think I am a hypochondriac or lazy or something.
And even though it isn't as serious as what some people have to cope with it is serious in it's effects, not to be able to leave the house due to exhaustion is a pretty limited way to have to live, it is very depressing to be unable to do anything day after day.


@Stayin....that is interesting about the heavy metal and bacteria, I will do some Googling, thanks.

[StayinAlive]

Originally Posted by stone

@Stayin....that is interesting about the heavy metal and bacteria, I will do some Googling, thanks.

no prob and i made a mistake on the leaky gut thing. It was a leaky ileocecal valve. I knew something was leaking lol. Its a common problem thats often overlooked and the result of many misdiagnosis.

Homeopathy and Ileocecal Valve Syndrome: Correcting the Primary Cause of Autointoxication | chiroweb.com

[stone]

Thanks mate, what heavy metal cleanse did you use?

What do you think of liquid zeolite?

[yeahgr8]

My friend in AA has fibromyalgia, i had never heard of it until i met her...

Personally it is important to you as it affects you, as much as having any condition would to anyone else, e.g. heart attack, stroke etc...please don't understate it:-)

[baldjim]

i have f/m too so i know what you are going through

when i can hardly walk at times and i'm limping along like a 90 year old .... er no offence 90 year olds and people say what have you done to your leg? playing rugby was it .... and i say i have fm ...whats that then they say ....when people say whats wrong now i just say i'm a cage fighter
i did it in the cage
tiredness that is off the scale

pains everywhere

some so bad last week my left arm hurt so much i could not move it

and chest pains so bad i went to the hospital and i thought i was having a heart attack

after an ECG??? and thourough checking over ...i was told it was the f/m boy did i feel silly all these other really ill people and me DOH

i have a very interesting link about fm but i'm a bit worried about posting it as i dont want to get banned again for something silly

may i pm it to you ?????
take care jim

[barb dwyer]

SURE! fire away! I'd love to read it.

Even my bosses here at work act like it's something that I should just 'get over', you know? I had another co-worker (not the one I posted about in newcomers) say something to the effect of 'I hurt every day too - I just don't make a deal out of it"

I coulda slapped her. I wish we could do the "Dr. No' thing with the collander on our heads and switch bodies for a day.

I'm sure she couldn't handle a full day.

thanks everyone for the support ...
I'm so glad to be able to come here and someone understands.

[StayinAlive]

Originally Posted by stone

Thanks mate, what heavy metal cleanse did you use?

What do you think of liquid zeolite?

i used this one Heavy Metal Cleanse - Targeted Total Body Heavy Metal Detox, Organ Detox, Colon Cleanse

i never heard of zeolite but a quick google search came up with this. I would research it more to be sure. Liquid Zeolite- Scam? or Miracle Cure?

I have also heard there is an edible clay good for metal detox as well. I would recommend visiting a good natural supplements store or Naturopathic Doctor for more info.

[barb dwyer]

thanks stayin -

*I* wanted to read about that too -
because it's so polutted here in butte from the mining...

I been trying to save up to go to this ayruvedic person over in bozeman who my sponsor went to to supplement her chemo - but it's looking like I'm not going to EVER get that kind of $%$$ ....

I need something POOR people can do ...

[Sugah]

Barb, I know how you feel. I have multiple pain conditions, and when my fibro is flaring, I find myself wanting to blame it on one of the other ones -- because they're more 'legit' -- which we know is BS.

Let's strive for honesty, huh?

Peace & Love,
Sugah

[barb dwyer]

sugah - okay!

I want to slap the people who go 'oh myfriend has that it's not so bad'...

I'm seriously considering that metals cleanse considering where I live.

Now just to figure out how I'm gonna pay for it....

[barb dwyer]

wow lavash! I'll try to find it!

I read positive stuff and outright comedy exclusively these days.

It really helps.

The bla bla bla recovery is great stuff gets TO me after a while.

so I like to unwind with Terry Pratchett.

[StayinAlive]

Hey Lavash Thankyou! Off to research Lyme disease, my ND never mentioned anything about that. Will be keeping in touch

[DesertEyes]

Originally Posted by barb dwyer

.... five men are getting me by the arms and taking me back to my chair
...so I had this WHOLE GROUP of people witness the thing and were looking at me expectantly....

ah yes, nothing like being the center of attention for the _wrong_ reason.

What really hits me "between the eyes" is when some charming, beautiful, young lady jumps out of her chair and runs over to _open a door_ for me.

That is _so_ not what my ego wants to see. I wanna be the macho man that makes the ladies _swoon_. Not the one the ladies are afraid is going to swoon.

My sponsor calls it an opportunity to grow along spiritual lines. sheesh.

So I say "thank you" and smile at them. And try and remember that the reason they open doors for me and hold out chairs is because they _care_ about me. My HP has given me enough recovery and serenity that people today actually _care_ enough to be concerned about my health.

It's gotta be in the big book _somewhere_. I'm sure. Maybe one of the promises: "We have learned how to be humble about infirmities and not cuss when the meeting babe holds open the door"



Mike

[barb dwyer]

That is _so_ not what my ego wants to see. I wanna be the macho man that makes the ladies _swoon_. Not the one the ladies are afraid is going to swoon.

Mike, thanks for the smile!

It really *is* our humor that keeps us going, I think.

[barb dwyer]

It really hit like a truck today...

my neighbor called me alst night -
"can you take me up to the hospital"???
she recently got a pacemaker and it had her RPM's up to
something like 140-bpm
so she was PURPLE when she came to the door!

Luckily - you could hit a baseball to the hospital from her house
(well - if you were really really FIT and the wind was in your favor)
she tells me on the way home
the doc finally comes in
and just hits her in the tummy
and her heart went back to normal.....
I'd be like...



So I got home and couldn't sleep
for the HOT FLASHES from the meds and 'the change'
(SOoooo happy both hit at the same time for me)
and the mental images of the doc
slugging my 70 year old five ft tall pal....

got up today
and was a wreck from the neck to tailbone.

She called again
and I went up to help her put snow tires
in her car
to get 'em put on tomorrow.

Her year MIGHT be 50ft. long
but it felt like ...
trail of tears, or some WWII forced march, man.

I'm glad I *did*
the x-er-size helped a bit.

But I'm a hurtin unit here at work tonight.

Some days are better than others, I reckon.

[Sugah]

Barb, I've found my FMS to be more difficult to handle with the menopausal symptoms are in high gear. This might sound too new-agey, but I swear, get some candles and some incense -- focusing on the scent helps me to "let go of" the pain and the misery.

Prayers for your neighbor, and for you, my friend.

Peace & Love,
Sugah

[barb dwyer]

LOL Sugah!

yes - I recently invested in 'ssandalwood' insence... I read someolace aryuvedic that that is the scent to help with the energy.

You know - I've been in this stuff for a long long time - and I don't understand why the aryuvedic stuff just runs in one ear and out the other. LOL

anyhoo - today is still just as bad - but now the snow is flying so I can trust that the pain will let up in a day or so.

I wish the national weather service would hire me as a human barometer. I'm far more accurate at predicting weather than the local stations.

LOL

I even get 'snow hair' my hair gets HUGE like back in the 80's - all on it's OWN ... and it goes flat right before it rains.

man this has to be at least a little bit laughable or I'm gonna go postal...LOL

[skid650]

Originally Posted by barb dwyer

It's also the people who,
when you DO finally cough it up what the doc said
they blow it off with:
"Oh my exboyfriend's mother (or somebody) has that and she gets around just fine"

*as if* it's inconsequential.

And boy howdy - it is NOT... inconsequential.

how to answer "inconsequential" people (even if they "mean well"):
"I used to be like that." and don't say another word. just let them think about it.

[barb dwyer]

hmmmmm... GOOD one!

You know -
my friend
who let me move into her house
when I lost my place cuz I couldn't work for being so freaking sick...

a nurse, mind you ...

even SHE would blow it off.
Especially if she wanted me to do something
she knew would make me hurt or sicker to do.

she wanted her bathroom painted
and even if well - the shape it was in -
it would have taken me DAYS to do right.
So I refused to do it because I KNEW I wasn't able to finish it.
She treated me badly from that point on.

And in the long run
she's lost herself a good friend.
I'm still awfully grateful
she took me in
but we had a written pre-move-in-agreement
and painting and redecorating her bathroom
was NOT on it.

*sigh*

sorry to go on about that.

It's been a real rough week, man.

alla way around.

thank you guys SO much for the support and humor.