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Celena Oxford
Posts: 461

Dilu, sending you loads and loads and loads of positive vibes, gooooooooooooooooooooooood chi and best wishes!

Beary hugs
Celena :hug:  :hug:  :hug:

Shari Nova Scotia,Canada
Posts: 1,712

Dilu, please give us an update, let us know how you are, I've been thinking about you since your post  bear_wub   :hug:   :hug:

JeannieB JeannieB Bears
Greensboro NC
Posts: 1,183

I'm not worried...Because...No matter who's hands it's in...it is always in Gods hands!! Since you are an angel....you are already in his plan! :hug:  :hug:
  Best wishes and prayers,
JeannieB bear_original

Dilu Posts: 8,574

Wow you guys....

First:  Thank you, that was rather overwhealming in the most positive of ways!

Second:

It is fibro.  And this is the best news I could get!!!!!

And here's why;  it isn't a disease, it is a condition.  And it is caused by years of stress that just kind of trains our minds to always be on high alert.

The flight or fight syndrom.  You all have heard of it!  its what our old brain, reptillian brain does to us.  And it was crucial when we lived in the caves or where ever.....

And since there aren't any T Rexs out there for me to slay, and I can't really kill the neighbor for stealing tomatoes, (No my neighbors don't steal tomatoes, and I would happily give them away anywat, just an example) so the hormone that is dumped into my body, adrenalin, is causing my brain to use up dopamine.

Dopamine

CAN

be replaced!  But besides replacing the dopamine I also have to retrain my mind not to react the way it does. 

When we don't have enough dopamine we are super sensitive to

EVERYTHING

Labels on clothing, the seams in the clothing can actually cause rashes, pain, sounds, noises, lights, colors, tastes, smells. 

But worse than that

PAIN

.....nearly never ending pain.  Non specific, roaming craZy making pain!

Dopamine is the chemical that helps us not feel every single thing going on.  Like the one eyelash that is out of wack, or the scratch of a sheet, or the way your skin wrinkles when you wear wide elastic on your pants.  Like how bizaar is that?!!  it doesn't normally cause ladies pain....but....

Dopamine is replaced through good quality sleep.  But like so many negative feedback cycles in the body, if you don't get the sleep, you don't get the dopamine and the pain is a little worse.....multiply this by years and years and pretty soon your a walking emotional- wrinkled- super- sensitive-wreak, wearing ear muffs and dark glasses to the library where you think the librarian is yelling if you blink.

OK a little hyperbole, so that you can understand what a lot of fibro-folks suffer with. 

BUT,  get a little sleep and start rebuilding the dopamine and things start to look better....until another stressor hits.

WHAT?!!!  Johnny did what at school?!!!  And then your body goes back to the flight or fight merry-go-round and, well, there you go!


So besides replenishing your dopamine you must also retrain your brain to not react to stressors they way it is used to.  Most people can handle stress.  But I, obviously, have reached the stage where I can not.

Example:  I am the only RN I know who managed to get through a 24 year carreer without a major medication error.  I had on funny one that I'll share in a moment.  But to get through 24 years of 12 hour days without one is nearly miraculous.  And it is an wonderful example of

TYPE-A, ANAL-RETENTIVE, SUPER CAUTIOUS, PARANOID, WORRYING ABOUT EVERYTHING EVEN IN MY SLEEP, QUADRUPLE CHECKING OF EVERYTHING....

When I told the specialist this he burst out laughing.  He said that alone aught to qualify me.

I have been researching everything.  I was frustrated with the American Arthritis Assoc. and the Rheumatology Assoc.  I have spent nearly a year researching.  And trying everything I could to change my life style.  which I have done pretty well....

I truly thank God that I have medical insurrance (with great medication coverage) because without medical coverage I couldn't get better.

For those of you who are suffering, if you are interested in this doctor's ideas contact me, I will send you some links.

Here is the really great news:

There is nothing wrong with your body!  When you get the sleep, retrain your mind and rebuild your dopamine you learn that no permenant damage has been done.  It isn't cancer, it isn't MS, there is a way out of all the seemingly unending pain.

But I do believe retraining my mind not to be forever on alert will be the HARDEST thing I will ever do.

There is a medication called Mirapex, which they give to Parkinson's patient's.  It replaces dopamine in the brain and helps amelerorate the symptoms those poor folks have.  By using rather massive dosses, eventually 10 times what a Parkinson's patient would take, the normal levels can be built back up.  But all the medication in the world wont help if the brain isn't retrained.  This should be interesting.

a194.gif       I so appreciate all your support.  You guys are great.  And I'll keep you posted.


The first thing I have to do?  Give up 24/7 Cnn/Fox/MSNBC news.......yikes!!!!! a102.gif


But when you really think about it....REALLY THINK about it....what can i do, besides vote?  I can't stop a single war, I can't change a single position that a single politician holds on anything, so why do I really need to be bombarded with it? s010.gif

so I have switched to the food channel.  My hubby laughs.  He just keeps saying; "don't make that!" or "ummmmmm" h018.gif

first thing?  I think cream puffs....Barefoot Contessa.....only she used ice cream....yummm ice cream....chocolate.....  h040.gif

JeannieB JeannieB Bears
Greensboro NC
Posts: 1,183

JOB OPENING....WANTED:
        Type A, anal retentive, super cautious, paranoid, worried about everything...even while sleeping, quadrouple checking of everything person. Needed for Open Heart team at major US hospital.
  Obsessive compulsive is a plus, but not needed to apply.

DILU,
Come and join us!
    :crackup:  :crackup:
JeannieB bear_original

SueAnn Past Time Bears
Double Oak, Texas
Posts: 21,716

SueAnn Help Advisor, Banner Sponsor

Dilu, that's very interesting stuff you learned from the specialist!  Do you mind if I share your insight with my daughter?  Good luck with retraining your brain's response to stress, my friend!

Dilu Posts: 8,574

Awww Jennie,  thanks for making me feel like a nurse again.....for a few seconds.   Until I realized that the last time I worked in a real hospital was..... unfortunetly my last 10 years was Psych.  "Open heart?  Now how do you really feel about that?"

But

[b]YOU know what I mean though, doncha ya!

Sue Ann:  I started with his book, and it is on sale at amazon, because his new one is coming out in the fall-expanded edition

http://www.amazon.com/s/ref=br_ss_hs/10 … mp;Go.y=11

It made sense so I made the appointment.  I figured it was worth a shot.  bear_grin

Well the medication seems to be kicking in......

hugs everyone![/b]

Daphne Back Road Bears
Laconia, NH USA
Posts: 6,568

Wow.....
It's amazing what I learn on TT!
My mom now asks almost daily what interesting new thing I've learned from you all!

Dilu,
You can do this..... with lots of discipline. bear_thumb

I hate to ask this but are the Gollies stessing you out? I know they can be a bit hyper-active and demanding!!!  :crackup:

If I watched CNN and Fox News 24/7 I'd not only have Fibro but would need heavy doses of anti-depressants!!! bear_wacko
Food channel..... Home & Garden channel.... now those are fun, interesting, relaxing! bear_grin

Music... lots and lots of peaceful music!!

Make time to do the things that make you happiest at least twice a day!

Sleep... can you, will you or have you tried a sleep aide?

I'll be praying for you..........

Bonnie Mountain Dreamer Bears
wooly woods of Missouri, USA
Posts: 1,538

Aw, Dilu! I'm so sorry you are suffering but I'm glad you have a plan of action! That is a great start. There is nothing worse than knowing something is wrong but not knowing what it is or what to do about it.

The information you shared is very interesting. I didn't realize fibromyalgia was caused by dopamine depletion. Is there any other way to replace dopamine besides sleep and Mirapex?

I agree with Daphne, beautiful music is great therapy. Retraining the reactions of your brain will take some work,

but you can do it! We're behind you 110%!

When you get stressed you can always vent to us, of course.

Yoga might help, too. Not power yoga, but some nice gentle relaxing stretches, focusing on your breath. It helps relieve tension and to look at the world from a less 'fight or flight' point of view.

Sending many gentle beary hugs and lots of serene, healing vibes your way!

:hug:  :hug:  :hug:

bearlysane Melbourne, Australia
Posts: 2,188

GREAT NEWS!


:clap:  :clap:  :clap:  :clap:  :clap:

DebbieD Posts: 3,540

:dance: YES!  You've got a gameplan....now run with it  :hug:

Daphne, I'm another one amazed by all the things I learn on here...hubby's always looking and learning too  bear_grin

Dilu Posts: 8,574

Thanks ladies.....you are all special in my heart and prayers as well...Hows Dad doing, Daphne?  Is he back to bear making yet?

Thank you everyone so much

Daphne, its the discipline that's hard.
c028.gif

I am actually shaking my leg, because my half hour of news was up an hour ago.   YIKES!!! I feel like a junkie.....now I have to evaluate if not having the news is more stressful than having it...oh boy!  this mind thing is tough.

I think I shall go find a small square of chocolate and chill out! i070.gif

SueAnn Past Time Bears
Double Oak, Texas
Posts: 21,716

SueAnn Help Advisor, Banner Sponsor

Dilu, I clicked on the Amazon link you posted and got a "found no results" message.  Could there be an error?  Thanks for checking.

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