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Author Topic: Disease of exclusion  (Read 1053 times)

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Offline cactusjohn5

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Disease of exclusion
« on: August 13, 2014, 01:13:36 AM »
So I have recently been "tagged" as possibly having fibromyalgia: my next dr visit is with a Rhemotologist to make sure it is not RA or anything else in the arthritis family.  I know that fibro is just now starting to get more and more respect in the medical community, but what i am curious about is ....

what should i have tested before i "accept" the diagnosis of fibromyalgia.

Things like CT scan and MRI or my head,neck and back?
Heart related tests, like a stress test?
Sleep study?

I remember seeing a check list somewhere once, and was curious if anyone knows of things i need to check off i would appreciate it.
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Offline NeverAgain2

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Re: Disease of exclusion
« Reply #1 on: August 28, 2014, 08:44:26 AM »
So I have recently been "tagged" as possibly having fibromyalgia: my next dr visit is with a Rhemotologist to make sure it is not RA or anything else in the arthritis family.  I know that fibro is just now starting to get more and more respect in the medical community, but what i am curious about is ....

what should i have tested before i "accept" the diagnosis of fibromyalgia.

Things like CT scan and MRI or my head,neck and back?
Heart related tests, like a stress test?
Sleep study?

I remember seeing a check list somewhere once, and was curious if anyone knows of things i need to check off i would appreciate it.

I would read the history of Fibro and find that it as a "disease" has existed under varous names since the ancient Greeks.  Throughout most of the 20th Century it was called "Fibrosis".   I will tell you one thing interesting about Fibro and its relation to pain.  MRI and PET scans show that in anticipation of movement, before you physically move a painful area, that that area of the brain will light up as if already suffering the pain.  You can make of that what you want, but fear-avoidance of doing things (even movement) tenses the body in ways to cause pain.  This becomes habit.  Once you are labled as a "Fibro" patient you can expect a couple of things from medical personnel as you go along: scepticism with the idea that you are milingering; and endless rounds of tests and medications to treat the symptoms (okay) but never to expect from them a "cure".

Think hard before you accept Fibro as who you  are, because that is who you will become.

Been there.  I will say no more, because of the emotions that Fibro generates.  These are my experiences and beiefs from having been there and back.

Good luck!
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Offline AncientMelody

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Re: Disease of exclusion
« Reply #2 on: August 29, 2014, 08:40:06 AM »
Depending on your symptoms, the main things I would want ruled out would be rheumatologic disorders so you're in a good spot with the rheumatologist. They'll likely do blood work to rule out, in addition to RA: lupus, polymyalgia rheumatica, thyroid disorders. You may want to ask if they evaluate for lyme disease as this is proving to be more common than previously realized. I wouldn't say this needs to be tested across the board, but if you are out in the woods regularly and are in a high frequency area it's definitely worth testing. STD testing would be wise if you're sexually active. Vitamin D, B12, and folate are also good to check as deficiencies there can be involved in some pain syndrome

Regarding heart tests, CT/MRI/sleep study: this depends on symptoms specific to you. If you have a predominance of chest pain, especially with breathing trouble then yes it's wise to get a cardiac eval. Sleep study....I would say that discuss your fatigue specific symptoms and perhaps look up the "epworth sleepiness scale" or a "sleep latency screen" if you screen strongly on those, take it in to show the rheumatologist to see if ruling out a primary sleep condition is necessary. CT/MRI: if there is a specific type of pain you're having that's isolated to one part of your body, shooting electric pain or you're having neurologic defecits then yes they should evaluate these. But if the pain is generalized throughout the body then the pain is more typical of fibromyalgia and those imaging tests are not neccessary.

Yes....fibromyalgia at this point is not curable. That's difficult to accept. BUT this is true of multiple medical conditions and that doesn't mean that there are not multiple ways to manage it and live a good life.  If you want info on treatments medical and lifestyle, complementary etc, let me know, but I'll save that for another post!

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Offline NeverAgain2

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Re: Disease of exclusion
« Reply #3 on: August 29, 2014, 07:42:17 PM »
With Fibro, a patient owes it to him/herself to read the latest on it, especially as to why it is a disease of exclusion, and what that means; then you can draw an educated opinion on whether you have, in fact, you have a "disease" called Fibormylagia or whether you have the results of an over-sensitized central nervous system and a psychological fear-avoidance problem.   Then you can decided for yourself if there can be a "cure".

 I speak only from experience and from study; I am a layman and not a doctor or medical professional of any type.  I don't consider that a bad thing, either.
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