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Old 02-26-2008, 08:21 AM   #1
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Join Date: Jan 2008
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tammym40 HB User
How I got fibro !!

I was dxed in around 2003. This is so weird to me, I tried to think back to what the heck happened to me. I appreciate any inputs, ..

anyway, I always felt good. We went on a family vacation in oc, maryland, acutally at the campground place on rte 50. we were near the water in a popup and I was ok ... it was hot one day so my husband put in the doorway an air conditioner, i remeber I was just freezinggggggggg that night. I woke up feeling achy, like I had the flu.. I couldnt even go with my family sightseeing, I stayed at campsite just feeling like I had the flu,,, Went home like that,, I called dr. he gave me antibiotics to take, and I spent 2 WEEKS still feeling like that, it sorta eased up a bit, but NEVER WENT AWAY, then at work my peers started noticed I was mixing up my letters, and filing ( i was chiro asst. ) I would file wrong and I would see and address EX: 457 and type 475,,,, they asked me to be more careful, I acually made a point, when I filed to be more careful and I STILL screwed up, then I would forget things........ I was soooooooo embarrassed!!

the dr. keep me after work and said he had to let me go, I asked him if I could just resign, because firing me ,,, I couldnt handle that!! we agreed , they we very nice...

during this, i went to a rhume dr, that dxed me with fibro,, i had no idea what it was, she touched me on the side of the leg and i jumped, it felt like i had a brusie on my leg, I said omg that hurtsssssssssss.

and thats when i think it started, i dont know what happened to me camping that day, did i get a virus that never went away? i dont know..

Of course, I cryed and I said I will fight this and get better, which never happened, and to this day I have never been the same, my whole life changed. I get mad, angry, deny it, act like theres nothing wrong, worse of all, I really fell so bad when I let people down, I am SCARED to commet to anything like church choir, or volunteer, because I just dont know what the next day will bring,

I do know this, I pray every nite and every day to the lord and he has heard me, and answered many many of my prayers, to help me get thru the day.
Hes my answer in all of this now. I cant do it alone. i used to think I could.

I read the boards alot, in fact every day and thought maybe if I write how this came about, maybe someone else got it like me, or have suggestions onhow the heck we got this, I know theres no cure, we just deal with it hour by hour,

thanks, Tammy

 
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Old 02-26-2008, 10:31 AM   #2
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kate26444 HB User
Re: How I got fibro !!

You've had a fibro diagnosis since 2003, so you must know something about this horrible disease. They don't know what starts fibro...whether it was a trauma from an accident, flu virus, psychological event...it's so very elusive....that's the trouble. When many, many doctors don't even feel it exists, it makes our fight that much harder.

It's time for you to just accept that you have it. Instead of mulling over and over why you got it...it's time to accept it and start to live your life so you can deal with it. I have no idea how my fibro started. I think I've had it since I was a kid and I'm 51. I remember spending time in bed with horrible aches and pains when I was little. My mother would write them off as growing pains. My growing pains never went away so then it was a flu bug. My Dad was crippled with RA but my symptoms were nothing like his. I had all the pain and none of the swelling. It was puzzling to doctors and it still is. The rheumy that finally diagnosed me with fibro probably 15 years ago wanted to treat me with cancer drugs. I'm not sure if it was Humira..if it was even out then but I didn't want that. I still don't. It works great on people with arthritis and swelling. I don't have swelling.

Anyway, the more you torture yourself, deny you have it, cry and scream about it the worse you're going to feel. If you had diabetes, would you treat that the way you treat your fibro? Accept that you have it, get off your butt and stop feeling sorry for yourself, do research on the subject (there's a ton out there and good, reputable websites to help you understand it), get treatment from your rheumy to help with your aches, and take advice that you read on here. There are a ton of ways to make yourself more comfortable so you can lead a decent life but you have to face it head on first.

The truth is: Does it really matter how you got it? It's not going to change a thing. The stronger you are with your attitude the better this whole thing will be for you in the long run. Praying helps too. God has a way of showing me every day how grateful I should be for how things are. There's always someone in our community so much worse off than me that makes me thankful. Think about it! Good luck--Kate

 
Old 02-26-2008, 11:11 AM   #3
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tiredpoet HB User
Re: How I got fibro !!

Tammy, I would suggest you pop over the Lyme Disease board as well and I'll tell you why. I've been sick for almost five years. For me it started with a flu-like thing that I never seemed to quite get over and progressed into severe cognitive difficulties like poor word recall, memory trouble, etc. Like you I started messing things up at work, I talked less to hide the fact that I had difficulting finding words or using the wrong ones, etc. Then I started to get weaker and weaker, having muscle aches, joint aches, pins and needles, vision trouble, this crawling, under the skin type itch sensation, my feet would burn on the bottoms, especially at night, my sleep patterns changed and I could barely function.

I would have bet money it was Hashimoto's thyroiditis, but it wasn't. I went to doctor after doctor and had test after test. They all said I was fine, ALL the tests were normal. They made me feel crazy. One told me I was having difficulty coping with approaching the age of 30. One told me I was clinically depressed but did not know it. One said I was too young to have had so many tests done.

After four years I finally got a rheumatologist to admit it was not "depression"--although by then, boy, I sure wasn't suzy sunshine anymore! He diagnosed me with fibro but thought it was secondary fibro and that I probably had MS, so he sent me to a neurologist. They found some lesions on my brain during an MRI and decided MS, but then a second opinion wasn't convinced so I lingered with a diagnosis of probable MS, fibro and chronic fatigue syndrome. They gave me some adderall for the fatigue and brain fog and sent me on my way with no other course of action. I did not get any better and intermittently got worse. I decided maybe I really was just unaware of my own major depression (even though deep down I knew I was not suffering from primary depression. I never felt despair or lost hopefulness, no matter how many doctors dismissed me) and my major cognitive difficulties were just because I was stupid, so I went to a psychologist and told her everything. She immediately asked if I'd been tested for Lyme. (I didn't remember, but my medical records show that I requested the test when I first became ill and it was refused, and that I had requested it two years in but it again was not given.)

This month I was diagnosed with Lyme by one of the leading Lyme doctors in the country and started treatment. Because it's chronic lyme that has gone on for years and the Lyme bacteria is one which can mutate and "hide out" in the cells in the body and avoid antibodies, very often lab testing comes back "negative" by CDC standards, and even when there are clear indicators that it's present doctors will dismiss it if it doesn't meet the stringent criteria. Meanwhile that criteria really only applies if you get tested immediately after you contract it. (There's a lot of info that I won't get into, but you should definitely look into it given that you clearly feel your systems started while camping and began with flu like characteristics, which is how Lyme starts).

I DO also have fibro, and though there is limited research my doctor thinks my fibro is a result of having lyme and I will have fibro even after (and if) the lyme can be treated. I've just begun a course of treatment that I'm told will take at least 18 months to complete. Each case is differnet but there can be so many lasting effects of Lyme, including fibro, arthritis, even dimentia. So please, please do some reading on Lyme and see if it rings a bell with you.

And if it's not lyme, please know that fibro is an illness that is difficult to treat but there ARE things you can do. I was terrified when my cognitive troubles started, and I'm still struggling to deal with it, as I was a confident, athletic woman with a master's degree and a good job before all this started. Adderall helps me tremendously with cognitive functioning. I still have trouble at times, but when I take the meds I am so much better and more confident because I can think more clearly and don't seem to struggle as much with things like word recall. (It doesn't help my memory, unfortunately). And there are lots of other meds to try and also natural and alternative routes to take. There are coping mechanisms. And there's always hope that new medical breakthroughs will occur in the coming years too.

 
Old 02-27-2008, 06:21 AM   #4
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baserockermom HB User
Re: How I got fibro !!

Hey, Tammym40. Very, very sorry you are going through all of this. Lyrica definitely has helped what they call "brain fog". That brain fog can cause you to miss appointments, screw up the calendar, screw up the carpool, etc. It is so frustrating when you're used to being so on top of things that you could keep everything in your head and were the type to wonder at those "little people" with their notepads and calendars.

Lyrica has soundly removed the brain fog from my day. Not messing up the names, appts., math, conversations, etc. A nurse practitioner first diagnosed me. After 10 years going to see the doctor in that practice, I had to take her one day and Lord have mercy what a difference it makes when a health professional will stay still and listen. She sent me to a pain specialist who did the two second tender point check and provided the prescription. Lyrica also lets me sleep all night (once I get to sleep) and lets me be awake during the day unlike some other meds.

 
Old 02-28-2008, 10:10 AM   #5
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tammym40 HB User
Re: How I got fibro !!

Thanks! for the advice about the Lyme dis. I am going to talk to my doctor next week and see what he has to say. I looked it up, the symptoms are sooooo what I have. Its a good thing I think just to make sure its not Lyme, I just want the best posiible care for the right DX. and I never even thopught of telling my doc how it started. I appreciate the advice. it sure cant hurt.

As for the Lyrica, I tried it, and I slept like a log, but during the day, I would rather have pain, than lose anymore quality of life. but thank you, I hope it helps you

I cope with this every day, and I do think it DOES matter about how I got this Kate.
I could have diagonosed wrong. Fibro, ms, lymes are so close in symtoms, its just weird... the only thing I ever had was b/w done to say I had fibro. I would like a second opionion on this.

I have lived with this many years, and I have accepted it to a point, ...only to a point, because I will Never give up trying to feel better ...... I wont give in to this

 
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