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04/17/2008 10:48
thomasann
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Nicole,

My experience has been that it does progress. I started off mild and over time have gotten alot worse. Last year I could walk further and still drive and do my own shopping. Now someone else usually accompanies me. I have more pain then a year ago, more stiffness and less ability and energy to get things done. I also read this somewhere and will try to get you the info.

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04/17/2008 11:53
bearsjewel
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Hi Nicole and everyone, I have been told by 4 different specialist that event thought the articles and websights say its not life threatening or progressive that it is. I know from experience how bad it will get, i have a electric wheelchair because most days i cant stand on my own 2 feet and i have fractured several bones trying to prove i can do without it.. the pumanologist that i have seen say the it is already affecting my lungs and my heart. but because of the fibro and chronic fatigue i now have some secondary conditions that are life threatening i think all need to do research on the one i have SJOGREN'S SYNDROME N i also have chronic pancreatitis. i really hate facing reality but i had to and now i tell m family on my good days that God will have to catch me and on my bad days i pray to go home but he doesnt want me there yet so i continue living with everything because i know God has a purpose for it so maybe my experiences will help others.
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04/17/2008 11:57
Nicolelm18

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oh that is so sad, and completely shocking to me, i was semi-happy with the fact that i was diagnosed this because i knew it wasn't fatal. What specialists?
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04/17/2008 12:03
thomasann
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bearsjewell,

I often think that maybe we all have it to teach others. Hang in there. I am also having to learn a new way of life due to the fibro. Plus the DDD and arthritis.My youngest just turned 18 and moved to Virginia and is staying with my father and that broke my heart. I have been a Mom for 33 years now and my jobs were secondary to my kids. So I have lost my identity of being a much needed Mom and an employed person that always took care of everything.Now I need my kids I think more than they need me and can no longer work to support myself either. I know how you feel. This is tough. But we are all in it together.

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04/17/2008 12:05
thomasann
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My dear Nicole,

Those of us that have it worse, are probably alot older. Don't worry yourself. It's not good for you. Just do what you can . I would be willing to bet they will come up with a cure in your lifetime. Hang in there kiddo.My prayers are with you.

Tami

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04/17/2008 12:48
cadburry
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I also read that it is progressive.

I know mine progressed. I do know people who do use wheel chairs because of fibro, but like someone here said they are much older.Not really old enough for a wheel chair, but they are much older than you and me. I'm 27 and have been fighting this Fibro for a long time, but had no idea what it was until this year.

I have it bad enough that I can't work, clean my house, some days my shoulder and neck pain is so severe that someone has to brush my hair for me, and I know I'm not old enough to be living like this.

I'm not trying to scare you, but I have heard if you get on top of this Fibro thing early enough you can cope better and lead a more productive life.

I first complained to my doctors about the fatigue, and then told them my back locks up on me (I didn't know anything about having a stiff back lol, so this was how I explained it to them). They checked my thyrois and it was fine so they told me I must just be doing to much and to slo down a little. I was like well yeah I have a full time job and two little ones so they are probably right.I kept telling my mom that I was a crazy tired because I knew this was not a normal sleepiness, but thought well I guess I'll just have to live with it.

I wish I would have known about Fibro at the start of all this and maybe I could have fought it better.

Maybe you can talk to your doctor and they can get you into some kind of PT and keep you on the right track so you don't get that bad if it's really possible.

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04/17/2008 14:29
mcbeth
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Thanks everyone for all your input. I had asked on another group about it being progressive and never got an answer.

I know that I do not hurt as bad as a lot of you do. Some days it's a dull ache other days are more intense, butI still manage to hold down a full time job...so far.

I know sitting is very unconfortable. It feels like when you are ready to have a baby and the head is "Right there", feels like I have a 5 lb bowling ball sitting on my pelvic bones. I have noticed this more in the psat few months and some chairs are worse than others. I had been wondering why that area was aching more, if this is progressive that explains a lot.

So I'm guessing we all start out at different points/levels with this, some of us not as bad as others and maybe some of us progress faster than others.

Am I beginning to understand this a little or do I sound more off my rocker than usual.

Post edited by: mcbeth, at: 04/17/2008 16:30

Be wise and dignified like the swan: he maintains his composure, staying unruffled on the surface, while always paddling like crazy underneath.

*♥´¨)
¸.•♥ ´¸.•*♥´¨ ♥•*¨)
(¸.•´ ; (¸ ;.♥•Mary Beth♥


Fibromyalgia is not an invisible diease, I'm right here!


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04/17/2008 14:32
Nicolelm18

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well i have PT in about an hour so i hope that dooes help me. I am just so terrfified at this this thing progressing!..how far does it do so until it stops? thats a scary thought. and thanks thomassann, i will try to not worry about it too much, try and relax and take things as they come.
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04/17/2008 14:33
sweetheartsuzee
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There's this too:

We're aging every day as well. And, we don't know what it feels like to age 'normally' so it's hard to tell whether the Fibro is getting worse, or I'm just getting old!

We're here for ya hun!

PM me anytime...for ANYTHING!

~Suzee~
Only YOU can control your thoughts...
SO...
Change your thoughts and CHANGE YOUR LIFE!!!
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04/17/2008 14:55
aurorasmom
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I have also heard it is progressive.. but, I have also heard some medical drs think that the reason why it is fatal is because the suicide rate is higher for people with fibro.. don't know if its true, just a rumor. With everything we go through, and how long some of you have had it, it guess I would believe that. I wish they would find out what causes this darn disease and find a cure! I have just been diagnosed and it is very disconcerting to me. I know I am not as bad as some of you, but getting a full time job scares me. Will I be able to keep it? Will I be in so much pain, I will have to quit? I am scared that my life is over and I just have to wait to die..eventually...I am only 35 and I don't want to live like this! My daughter is only almost 4 and will she have to watch me go down hill?.... I don't want to give up, but I don't want to go on like this either... was an athlete, track, and worked out everday and now can hardly get out of bed..... What can I do? I guess this reply turned into a rant, I do apoligize, Gretchen
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