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Old 06-08-2008, 05:00 PM   #1
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fbro or what ???

Doc Says I Have Fibro, Well I Just Want To Be Certain, There's Been To Many Miss Diag. In Our Family Aliitle Afraid If You Know What I Mean. Have Alot Of Fibro Signs, But Not Certain These Can Someone Relate Or Know What Can Cause This? Swelling All Over Body Red With With Dots
When I'm Real Active, When I Drop My Hands Below My Heart Level When It's Really Appart Without Any Activity, Numbess On Top Of Skin,i Can Touch My Face And It Turns Really Red As If I'm Sunburned,when I Blow Dry My Hair I Look Like I Have Steam Burns On My Hands, Feel Like I Have Something In My Throat , Like Food Didn't Go Down,gain Almost 60 Pounds In One Year, I Have Stinging Sensation In Neck Around My Arteries Feels Like My Airway Is Being Comprimised. That's A Few. Had Sweeling And All The Above Before Being Put On Lyrica. I Can Now Be Somewhat Active For Around 20 - 30 Minutes Without Major Suffering. When I Move My Wrist Back And Forth It Makes My Arm That Much Redder, And Stings, Oh I Was Really Active Up Until Dec. Of 08, I Owned A Cleaning Business And Worked It My Self, That's All Gone Now, Feeling Awful Low Now Hope Someone Can Help !!! Oh My Body Can't Stand Heat Nor Cold.

 
Old 06-10-2008, 12:22 PM   #2
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Re: fbro or what ???

had to go back to dr. today have to go in tmr am for more blood work, was sent to er yesterday, they thought maybe congesitive heart, thank God it wasn't. dr. seems to also think connective tissue disorder. so tired of not knowing. they have ordered a baruim swallow a upper gi. does this stuff ever end? hope all of you are doing as well as possiable, your notes to each other has inspired me to were i don't feel alone. this once use to be social butterflies wings feel like they have been yanged off, i would really like to be able to find some new ones my grandson says he wants his nana back, i told him i want her back too. i feel like a failure i hate this stuff. i lost my son 4 years ago, thats the only pain i know that hurts more. thanks for just having me an outlet to defume.
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Old 06-11-2008, 06:02 AM   #3
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Re: fbro or what ???

Hi Shcservice, welcome to the board!

Sorry for what you are going through. I've been there myself. As all of the people on this board are looking for answers. I had been diagnoised with Fibro, CFS. I had been told I had Gullian's Disease, Dementia, Alshiemers, ADD, Bi-polar and many, many other conditions. It just depended on what doctor I went to...ugh!

Now 20 some years later I have come to the conclusion that a persons body just doesn't do things out of the blue. That there are "reasons" for these ailments. The doctor that I have been seeing for the last 5 years tested me for Chlamydia Pnumonaie, do not mistake this for the Sexually transmitted Chlamydia. There are many strains of Chlamydia. I had high titers for C.P. He also tested me for Epstein Barr, Cytomeglovirus. Those were off the charts. So I am being treated for these, plus I had a doctor before him that was treating me for Lyme. I had swollen hands, red skin, rashes, mental fog, you look at the list I had everyone of the symptoms. ugh! I also had/have bartonella and Babesia. The doctor I see also treats for the thyroid.

Eight years later I am off antibiotics (for 3 months) and holding. I am still on a antiviral and on tons of supplements. I still have what I feel is maybe enchepelitis caused from any of the bacteria's I have or the virus's. So am still trying to get these critters out from under my scalp and skull. And bloodvessels in my head.

So what I am trying to say is you need to keep searching. The doctor that you are seeing if he just is going to say It is Fibro and leave it at that and not test you further for bacteria's or virus's. Then it might be wise to keep looking until you find what ales you. That is just my opinion. There are plenty of these critters in the world that just love a warm body to call home.

I hope you find your answers. The ignorance of some doctors can sure keep us from living our lives fully.

Jodie

 
Old 06-11-2008, 08:10 AM   #4
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Re: fbro or what ???

how did all of this happen, it seems as if it's overnight!!! i hope you get better soon, thanks for the info and encouragment, hope to here more good news from you.
thanks,
servants heart

 
Old 06-11-2008, 08:24 AM   #5
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Re: fbro or what ???

I am very glad you keep going for medical attention as I don't think all this is Fibro ...you haven't been sick long enough and most of your symptoms sound very serious and in need of treatment. Also hope they have tested your thyroid? Keep going to the doctor until they find something and don't just settle for a catch all diagnosis like Fibro. It is fast becoming a quick and easy diagnosis for doctors that just don't take the time to find out what is really going on. Good luck to you.

 
Old 06-11-2008, 08:27 AM   #6
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Re: fbro or what ???

Wow, I feel so NOT alone when I come to this board. Thank God for this message board and a place to come and share. No one can really understand our pain unless they have walked in our shoes. With me, I always wonder if I have cancer. I had it once and the thought is always in the back of my head.
I need to deal with the hand I was given and do it with the best of my ability. That can be hard when you dont feel good most of the time. Just gotta hang in there I guess P E A C E

 
Old 06-12-2008, 08:52 PM   #7
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Re: fbro or what ???

thanks again for the encouragement, {again as needed so much today}, really had difficult day today, i really felt my self worth go down the crapper if you know what i mean. cried so much this a.m. i feel as if i have let everyone down, even all my animals, they even seem depressed. my husband really came through today, espically when you feel unloveable or like your not contributing to the family. he reminded me that if not for me standing by his side after the brain anyrsum he does't know what he would have done and all the other things our family has gone through. he said i should just remember that he love's me and wished he could do something to ease the pain, {well he does, he has started helping me more in the house washing clothes, sweeping, mopping he even tells to sit down and take a break because he really see's have difficult all of this has become. God i hope he continues to help and not get discourage like i seemed to have gotten.} i'm having this strange sensation in my neck on the left side sharpe pains inside and i feel as if i've been novicaned on the outside strange feeling, feels like the time i had a volleyball injury to my knee and killed some nerves, or when i had dental work and your coming out of the deadening. weird!!! oh they are going to check throid and hormone per my request, i ask my pdr if he thought i was crazy, he made a comment: if he didn't listen to me or his other patients that he was in the wrong field and he would be doing a diservice with the gift he was given, he did also assure me he didn't think i was crazy or making it up, and that we would try together to figure this out. hope he stays true to statement!!!!!!!!!!!!!!!!!!!! thanks again to all to continue to encourage, this really seems to help to communicate seeing how my getting out of the house is come down to dr. and run in to grocery store before my feet swell up and burn through the soles which is about 20 min, no more than 30min otherwise i feel like it radiates through my whole body. stay strong for each other !!!!
still searching,
servants heart

 
Old 06-14-2008, 11:45 PM   #8
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Re: fbro or what ???

Quote:
Originally Posted by georgi View Post
Wow, I feel so NOT alone when I come to this board. Thank God for this message board and a place to come and share. No one can really understand our pain unless they have walked in our shoes. With me, I always wonder if I have cancer. I had it once and the thought is always in the back of my head.
I need to deal with the hand I was given and do it with the best of my ability. That can be hard when you dont feel good most of the time. Just gotta hang in there I guess P E A C E
constant fear for me too.

 
Old 06-14-2008, 11:48 PM   #9
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Re: fbro or what ???

to the person who originally posted and started this thread:

are you aware that there is a seperate board for fibromyalgia? also...i've had cfs and fibro for decades and the symptoms you list and not really symptoms that are indicative of either. your symptoms sound like something else is going on...not cfs or fibromyalgia. i'm not a doctor and i'm not saying you don't have fibro but your complaints just are not in league with what the symptoms of either fibro of cfs are.

 
Old 06-21-2008, 08:22 PM   #10
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Re: fbro or what ???

i go to the rheum dr. thurs 26th, i have journaled all that i can for now, hoping and praying for some kind of answer, cushings and cortisol came back neg. thyriod still not showing anything. body still swollen and red, still feel as if i have something in throat, now for 6 months, previcid not touching it!!!! i was thinking of writing my rhem. a letter begging to help me get some form of normal back, i sometimes wonder if they are really listening to us, hope she will help like my reg. md. says he will.
i posted orig. on fibro board, i think i've been to serveral boards just find somone like me, or somewhat like me for some kind of answers. i really hope they find out something soon, the only time i have ever hurt worst was when my son was killled in a auto, wreck in 2004. i have never known pain such as it!!!! the two are very different . but yet you feel like part of you has died with both!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
again thanks for the encouragement and the advice, it's truely needed, and i would like to throw some back your way, we might not be dr.s but we have some medicine that will help others, HOPE, THANKS AGAIN!!!!!
SERVANTS HEART

 
Old 06-27-2008, 05:18 PM   #11
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Re: fbro or what ???

went to rheumy yesterday, good visit she spent 35 minutes with me, that's a first for me, i don't know if it was because i have so many different things going on in my body or if she just felt sorry for me!! went over past blood work, shows where i showed positive once for ra and then one didn't and so on long story short she believes it probaly is lupus or another auto immune, she running more blood, urine test, she also put me on predison and upped lyrica, plaquenil , she wants me to still get the baruim swallow and upper gi, she also suggest that we get an ultra sound just for starts. wow!! i did ask her if she thought we could get some form of normal back, she said yes and i ask are you sure, and then she gave me the right answer, we will try together!!!
she does have concerns about my turning really red and then purple in some areas on my body, she seems to think there is some kind of vascular problem, not certain though, i did find out how sensitive i am to the sun yesterday, i had to park alittle away from building and by the time i got in to office you would have thought i just left the beach and had worn no sunscreen red red red, stinging , felt like i could heat up a room.
any ways i took the medss last night, i'm feeling alittle more tired today, swelling hasn't left, nor reddness or purple, stinging still remains, the only thing different is that i feel aliitle more sleepy and my stomach burns alittle, hoping still to get more concrete dx and also hoping the meds take the swelling and stinging away!!!!!
has anyone else out there been tested for lupus or other auto immune and it show neg and then come back positive at a later date?? whatever this is it's crazy !!! hope everyone is doing as well as they can be !! do any of you ever find yourself looking to see if anyone else out there is like you i guess i just want to validate what's going on in me, and also to know that i'm not going crazy. still looking for answers, like so many others. thanks to all again for your suggestions and encouragement.
still kicking, just not as hard,
servants heart

 
Old 06-28-2008, 05:38 AM   #12
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Re: fbro or what ???

HI S.H. .... I know this can be frustrating. I still would look into Lyme and other bacteria's/virus's. They can be the underlying problems you have.

Hang in there. Stay Strong.


 
Old 06-29-2008, 09:49 PM   #13
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Re: fbro or what ???

thanks for info jojo, i'm hanging just not as good as i use to. i have really tried to educate myself about anything that can cause these symp. so i can get a grip on it. all suggestions are welcomed, you kinda fill like you got someone who's got your back, or maybe your cheerleader for the day, which is needed in most cases.
my husband and grandson went out of town fri. and sat. oh my god i slept and slept, wow. thought it wouldn't hurt, i woke up and still have all this wonderful stuff can't even seem to sleep it out ha! i wish!!!!!!!!!!!!!!!!!!
again thanks for responding, to anyone else out there who's searching, hope you find some peace and answers on this forum, it's helped me so much just to keep on keepin on !!!!!
still hangin,
servants heart

 
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