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Old 07-01-2012, 10:20 AM   #1
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Vollenteering for Fibro study, go in tomorrow :)

Hey everyone,
I've known about this for a week but thought I'd share.
I vollenteered through OSHU awhile back & they called to see if I wanted to do this study. All I know is that they are doing bloodwork to look for something to diagnose Fibro & also something about a medication. I'll find out more tomorrow. I'm just excited to be able to do this... to help further Fibro studies I don't have the $ to donate so figure this is the next best thing plus I will get a gift certificate which will cover all the gas & lunch
Anyhow, thought I'd share! I'll give you more info tomorrow
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 07-01-2012, 11:24 AM   #2
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Re: Vollenteering for Fibro study, go in tomorrow :)

Hi, I think that's great and yes continued research can only help ! Good luck

 
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Old 07-01-2012, 12:44 PM   #3
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Re: Vollenteering for Fibro study, go in tomorrow :)

Good luck this week . Can't wait to hear more about it.

 
Old 07-02-2012, 12:29 AM   #4
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Re: Vollenteering for Fibro study, go in tomorrow :)

Great! "Gooo, Research, Go" clap clap

 
Old 07-02-2012, 01:19 AM   #5
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Re: Vollenteering for Fibro study, go in tomorrow :)

Thank You! I'm excited, just not looking forward to getting me & kids out the door in the morning lol Wish it was easier..
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 07-02-2012, 11:44 AM   #6
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Re: Vollenteering for Fibro study, go in tomorrow :)

My frustration comes from the fact that if a Dr. doesn't know what is wrong with you, you will be labelled with fibro. There is no test to prove that this exists. It has become a garbage can diagnosis when there is no answer. People want to have a name for whatever ails them, and we deserve to know what is wrong with us. But I think fibro is just a name to shut us up. I was told I had fibro, I don't believe in it. I know something is wrong , I may never find the answer, but I do not want to be dismissed with a diagnosis that doesn't exist.

 
Old 07-02-2012, 04:59 PM   #7
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Re: Vollenteering for Fibro study, go in tomorrow :)

VDW, hello
I'm not positive what you mean by "garbage can diagnoses". I first heard that used in reference to MS in the early ’90's, and yet even then, there was no doubt that it is a real disease, with clinical findings.

Research for FM is in it's earlier stages, and studies do find some interesting findings. Just in case you haven't had the opportunity to do much research, I'll tell you a few places where you could search for studies about fibro. I'm not an expert, but I do find it an interesting subject, of course.

So, if you'ld like to learn more, here are a few topics:
if you read some studies and analyze the science , it's possible you could change your assesments. Google the words: study abstract fibromyalgia then do separate searches adding to those words and also using these: substance P, do another search for SPECT + regional blood circulation brain Another search: fMRI increased activation of pain areas. Another: loss of grey matter brain 9.5%. Another: reduced ATP. Another: Mitochondria red ragged fibres uneven distribution proliferation

Another:Afferant neuron processing. Another: nociceptors antinociceptors neurotransmitters. Another: Gupta small fiber neuropathies. Another: Basal Ganglia frontal cortex. Another: HPA axis. Another Dr. Lowe hypothyroidism.
I think that's a decent start, maybe someone will come across this thread and add to that.

 
Old 07-02-2012, 05:47 PM   #8
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Re: Vollenteering for Fibro study, go in tomorrow :)

Hi Farm...Good luck and thank you!! But please be careful and be sure it is something you truly believe is ok for you. You not only have the Fibro Monster remember! Love and hugs and many thanks for being a part of this very important quest!!!
Low pain all,
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Old 07-03-2012, 09:28 AM   #9
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Re: Vollenteering for Fibro study, go in tomorrow :)

Thank You Rhaquel for all the info & Thank You Cat for the support
They were really nice there. Lists of questions about pain, symptoms, the effects of fibro, ect.
The blood work has to do with DNA. I guess they are looking for a link between our DNA & Fibro. After this study my blood will be saved for future fibro studies. I plan to go back & do more. Pretty neat!

VDW- I'm sorry you feel that way but it is not a garbage can diagnosis. If that we the case I would have been diagnosed 11 yrs sooner.
The problem is that many people go to family physicians who aren't trained for things like this. They should refer people out to specialists but like me, they were no help. Many of those doctors will say someone has fibro when in fact they have not ran enough tests. Those people will find that they are low in vitamin D or something else that is easily treatable.
For the rest of us, we go to specialists like a Rhumetologist. I don't think there is any test left that I haven't had done. We have all went through that. Then our symptoms are the same. We understand eachother because we are all going through the same thing. If it was a garbage can diagnosis, we would all have different issues & not be able to relate to eachother.
When I was first diagnosed I didn't believe it. When my first real flare hit, I went back to the Rhum a few days later ready to listen. I think we all go through denial before exceptance. Finding out what is going on & learning how to live with it is not easy. But accepting it & controlling it rather than letting it control you is so important!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

Last edited by thefarm; 07-03-2012 at 09:38 AM.

 
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Old 07-03-2012, 09:31 AM   #10
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Re: Vollenteering for Fibro study, go in tomorrow :)

Keep us updated on if they find anything out. I never thought about a link to DNA. Be cool if they find something with that as I think it'd open sooo many other doors.

 
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