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FMS ForumsGeneral & SupportIMPORTANT INFO FOR FIBRO PATIENTS
06/18/2008 08:31 PM
sthrngrace
sthrngrace
 
Posts: 47
Member

IMPORTANT INFO - PLEASE READ IN ITS ENTIRETY

Please note I DO work in the medical field, but I am NOT an M.D. or D.O.

If you have any questions or think I can help you in any way, please don't hesitate to ask me or contact me! Smile

Fibromyalgia is a considered a "rheumatoid" (rheumatic) disease. You need to find a specialist called a "Rheumatologist". A lot of people have more than one rheumatoid disease/disorder and may actually have something more complex than they are aware of. There is what's called UCTD and MCTD.

    UCTD: Undifferientated Connective Tissue Disease; Its a condition where a patient has an "overlap" of symptoms from three different rheumatoid diseases. It can be any combination i.e. the "undifferentiated" part.

    MCTD: Mixed Connective Tissue Disease; Is more specific and is an "overlap" of three specific diseases (SLE - Systemic Lupus Erythematosus - Commonly known as just "Lupus", Scleroderma, and Polymyositis.

I drew a diagram on paint to show ya'll. I will try to post it for everyone. It may help others.

Some people have FM & RA and are being worked up for Lupus or some other kind of rheumatoid disease. With the way rheumatology is - if a person already has two rheumatoid diseases, then the possibility that they could have another is exponential. They may have another one that has been "missed" thus far.

If you have been diagnosed with Fibromyalgia and another rheumatic disease (such as Rheumatoid Arthritis, Lupus, Scleroderma, Still's disease, etc) and you do NOT have a "rheumatologist", I encourage you to seek out a specialist in rheumatoid diseases. It may be very beneficial for your health.

I know some doctors, especially the 'old school' doctors, don't take Fibro seriously. But you have to understand, back in the old days, they deemed the term "fibromyalgia" to shut people up when they kept saying something was wrong and they couldn't find anything. They sometimes called it "chronic fatigue syndrome". A lot of the older doctors still believe that and don't give it the credit that it deserves or the aggressive medical attention it requires for the patient to live a normal life. It has just begun to be taken seriously by the medical profession. There are still people out there who discredit it because of the history of it. You must understand that.

Its like being taught in kindergarden that white is a "Color" and then you find out as an adult that its actually a "shade". In your mind, when someone says "whats your favorite color?" and you instantly say "white". Not because you don't believe its NOT a shade - but its always been a 'color'. Does that make sense?

[file]

Post edited by: sthrngrace, at: 06/18/2008 20:32

Post edited by: sthrngrace, at: 06/18/2008 20:33

The only thing that stands between a man and what he wants from life is often merely the will to try it and the faith to believe that it is possible.

- Richard M. DeVos

Need nutritional help? MD Junction has a BRAND NEW GROUP! Its still all nice and shiny! :) If you want to find some great recipes that are geared toward your health conditions and not just weight loss, come see us! Need diabetic friendly recipes? Low sodium recipes? or just plain healthy recipes? Visit us! We can help!

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Reply

04/06/2009 12:45 PM  Top
SandieJ
SandieJ
 
Posts: 2
New Member

Not very many people talk about this. I am living with UCTD. I was finally diagnosed 3 months ago after almost eight years of pain and confusion. If you know of any support groups for this condition, I would love to hear from you. Have a wonderful day. :o)

Previous discussions I participated in:
Another Newbie :o)

04/06/2009 12:56 PM  Top
Nitalynn
Nitalynn
 
Posts: 1404
Senior Member

Thank you for the information SandieJ. Sorry I meant sthrngrace. Thank you SandieJ for posting anyway.

Post edited by: Nitalynn, at: 04/06/2009 15:47


04/06/2009 01:05 PM  Top
aTinaL
aTinaLPosts: 11832
VIP Member
I'm an Advocate

SandieJ, please feel free to pm Roy and tell him that you would like to see a group for UCTD. Here's a link to his profile page:

http://www.mdjunction.com/mem/1299

sthrngrace, if there is an overlap of the other conditions, wouldn't they test positive then?

Tina

"Calm down! Let's cook some carrots!"
- Jim, Hell's Kitchen


"All aboard the suboxone train!"
- Tina


I'm not a doctor, but I play one on tv!
-Tina

Previous discussions I participated in:
Heart Problems.
Hello
fibro and the heart

04/06/2009 03:26 PM  Top
sthrngrace
sthrngrace
 
Posts: 47
Member

not necessarily. A lot of the rheumatoid diseases dont really test "positive" they're diagnosed by ruling everything else out. And there are so many things that have similar symptoms, its really difficult to find something you dont know youre looking for. Its like trying to look a word up in the dictionary but dont know what letter it starts with. you know it sounds like LOTS of other words, but aren't really sure which direction to go in first. ya know? Make sense?
The only thing that stands between a man and what he wants from life is often merely the will to try it and the faith to believe that it is possible.

- Richard M. DeVos

Need nutritional help? MD Junction has a BRAND NEW GROUP! Its still all nice and shiny! :) If you want to find some great recipes that are geared toward your health conditions and not just weight loss, come see us! Need diabetic friendly recipes? Low sodium recipes? or just plain healthy recipes? Visit us! We can help!

http://www.mdjunction.com/healthy-nutrition


For my own personal recipes, please visit my blog:
http://cookingwithjennifer.blogspot.com

04/06/2009 03:35 PM  Top
aTinaL
aTinaLPosts: 11832
VIP Member
I'm an Advocate

But they ran specific blood test on me for all of those. That's the only reason it doesn't make sense to me. They all came back negative. At least twice.

I'm not disputing the UCTD/MCTD issue at all, I'm just not getting a) how it relates to fibro and b) why those wouldn't show up in the blood work when they have specific tests for them.

Then, if you have all three, it would make sense that it becomes a horse of another color entirely.

Tina

"Calm down! Let's cook some carrots!"
- Jim, Hell's Kitchen


"All aboard the suboxone train!"
- Tina


I'm not a doctor, but I play one on tv!
-Tina

Previous discussions I participated in:
Heart Problems.
Hello
fibro and the heart

04/06/2009 04:35 PM  Top
sthrngrace
sthrngrace
 
Posts: 47
Member

because fibromyalgia is considered a "rheumatoid" problem.. and its one of the ones that can contribute to UCTD. and FM is sometimes misdiagnosed when the people actually have UCTD or MCTD. I know there are specific tests for lets say... lupus... but there are different types of lupus and different variations and you have to remember that every person is differnet and their bodies may react differently
The only thing that stands between a man and what he wants from life is often merely the will to try it and the faith to believe that it is possible.

- Richard M. DeVos

Need nutritional help? MD Junction has a BRAND NEW GROUP! Its still all nice and shiny! :) If you want to find some great recipes that are geared toward your health conditions and not just weight loss, come see us! Need diabetic friendly recipes? Low sodium recipes? or just plain healthy recipes? Visit us! We can help!

http://www.mdjunction.com/healthy-nutrition


For my own personal recipes, please visit my blog:
http://cookingwithjennifer.blogspot.com

04/06/2009 04:37 PM  Top
sthrngrace
sthrngrace
 
Posts: 47
Member

Sometimes they diagnose it as if its the only things that left.. and i say that loosely.. if they ruled out everything else but you still display symptoms of all of these diseases, its the only way they can treat you.. and sometimes they just dont know because its such a relatively new thing
The only thing that stands between a man and what he wants from life is often merely the will to try it and the faith to believe that it is possible.

- Richard M. DeVos

Need nutritional help? MD Junction has a BRAND NEW GROUP! Its still all nice and shiny! :) If you want to find some great recipes that are geared toward your health conditions and not just weight loss, come see us! Need diabetic friendly recipes? Low sodium recipes? or just plain healthy recipes? Visit us! We can help!

http://www.mdjunction.com/healthy-nutrition


For my own personal recipes, please visit my blog:
http://cookingwithjennifer.blogspot.com

04/06/2009 04:40 PM  Top
sthrngrace
sthrngrace
 
Posts: 47
Member

There is no specific blood test for UCTD or MCTD. Because they are combinations of other rheuamtoid diseases..
The only thing that stands between a man and what he wants from life is often merely the will to try it and the faith to believe that it is possible.

- Richard M. DeVos

Need nutritional help? MD Junction has a BRAND NEW GROUP! Its still all nice and shiny! :) If you want to find some great recipes that are geared toward your health conditions and not just weight loss, come see us! Need diabetic friendly recipes? Low sodium recipes? or just plain healthy recipes? Visit us! We can help!

http://www.mdjunction.com/healthy-nutrition


For my own personal recipes, please visit my blog:
http://cookingwithjennifer.blogspot.com

04/06/2009 04:49 PM  Top
Kristy424
Kristy424
 
Posts: 689
Member

Haven't they found that there is something there-or missing-in blood tests on people with fibromyalgia, though? I thought I read that somewhere.

But it's really great-and helpful!-info, Sthrngrace! It doesn't surprise me that this kind of thing can happen-and be missed by most of the doctors I've ever known!

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