Is Fibromayalga Real?

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madguy30

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This thread reminds me of a pretty basic rule of life:


In boxcar derby, there is only sandpaper.
 

ZRF

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And unfortunately, for the more difficult (and not clearcut) medical conditions and pain syndromes, the pathway to recovery (if there is one) can be very complicated. Not only from being able to find the right specialist, but with insurance, bills, etc.

Thankfully there are some very bright practitioners out there, who can effectively treat many of these difficult conditions. Some of the treatments are not maistream either. Finding them, and getting insurance to pay for coverage, another story many times.

There are and that's not to say every case is "hopeless".

In my experience a complete lack of centralized care, and by that I mean an interconnected network of professionals who collaborate, makes finding care nearly impossible. After about 5 years I realized I had a very unique case with a very unique presentation of symptoms. My age of onset, the interplay with the wisdom teeth, the cystic mass (that actually formed twice...once when being in the cold and a second time after being in the sauna at Lied), were all out of the ordinary. That was compounded by the fact trigeminal disorders are often diagnosed based on concrete symptomology or by exclusion. The treatments are usually "boxlike", and by that I mean 'here are the treatments we give for people in your diagnostic box'. Despite seeing doctors all over the US, not ONE really tried to tie my symptoms and the mass, that were definitely inter-related, together.

Basically the state of HMO regulated medicine, lawsuit-minded instituations, technology, lack of time, human error, and the lack of centralized collaboration all combine to inhibit the diagnostic process. This in turn leads to poor treatment as they often don't really know (or understand) what they are treating. I'm sure some in here can identify with what I'm saying through many will not. Until you have something that is hard to diagnose/treat and go through the system you can't begin to understand how broken the process is.

Another aggravating aspect is that people who experience the above often get bled dry with absolutely NOTHING to show for it. It's preposterous doctors charge the same price for a "service" in the absence of results. Thousands of Americans get bled dry going from doctor to doctor and getting charged full price on every visit. I'm not saying it should be free but there definitely should be an award/incentive for doctors to get results outside of relying on their altruistic heart. It's one of the few professions where people are charged regardless of outcome, with attorneys (another highly paid profession) being the other.
 
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matclone

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There are and that's not to say every case is "hopeless".

In my experience a complete lack of centralized care, and by that I mean an interconnected network of professionals who collaborate, makes finding care nearly impossible. After about 5 years I realized I had a very unique case with a very unique presentation of symptoms. My age of onset, the interplay with the wisdom teeth, the cystic mass (that actually formed twice...once when being in the cold and a second time after being in the sauna at Lied), were all out of the ordinary. That was compounded by the fact trigeminal disorders are often diagnosed based on concrete symptomology or by exclusion. The treatments are usually "boxlike", and by that I mean 'here are the treatments we give for people in your diagnostic box'. Despite seeing doctors all over the US, not ONE really tried to tie my symptoms and the mass, that were definitely inter-related, together.

Basically the state of HMO regulated medicine, lawsuit-minded instituations, technology, lack of time, human error, and the lack of centralized collaboration all combine to inhibit the diagnostic process. This in turn leads to poor treatment as they often don't really know (or understand) what they are treating. I'm sure some in here can identify with what I'm saying through many will not. Until you have something that is hard to diagnose/treat and go through the system you can't begin to understand how broken the process is.

Another aggravating aspect is that people who experience the above often get bled dry with absolutely NOTHING to show for it. It's preposterous doctors charge the same price for a "service" in the absence of results. Thousands of Americans get bled dry going from doctor to doctor and getting charged full price on every visit. I'm not saying it should be free but there definitely should be an award/incentive for doctors to get results outside of relying on their altruistic heart. It's one of the few professions where people are charged regardless of outcome, with attorneys (another highly paid profession) being the other.
Since the system is broken, and doctors have done nothing but bleed you dry, I guess you're screwed.
 

t-noah

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There are and that's not to say every case is "hopeless".

In my experience a complete lack of centralized care, and by that I mean an interconnected network of professionals who collaborate, makes finding care nearly impossible. After about 5 years I realized I had a very unique case with a very unique presentation of symptoms. My age of onset, the interplay with the wisdom teeth, the cystic mass (that actually formed twice...once when being in the cold and a second time after being in the sauna at Lied), were all out of the ordinary. That was compounded by the fact trigeminal disorders are often diagnosed based on concrete symptomology or by exclusion. The treatments are usually "boxlike", and by that I mean 'here are the treatments we give for people in your diagnostic box'. Despite seeing doctors all over the US, not ONE really tried to tie my symptoms and the mass, that were definitely inter-related, together.

Basically the state of HMO regulated medicine, lawsuit-minded instituations, technology, lack of time, human error, and the lack of centralized collaboration all combine to inhibit the diagnostic process. This in turn leads to poor treatment as they often don't really know (or understand) what they are treating. I'm sure some in here can identify with what I'm saying through many will not. Until you have something that is hard to diagnose/treat and go through the system you can't begin to understand how broken the process is.

Another aggravating aspect is that people who experience the above often get bled dry with absolutely NOTHING to show for it. It's preposterous doctors charge the same price for a "service" in the absence of results. Thousands of Americans get bled dry going from doctor to doctor and getting charged full price on every visit. I'm not saying it should be free but there definitely should be an award/incentive for doctors to get results outside of relying on their altruistic heart. It's one of the few professions where people are charged regardless of outcome, with attorneys (another highly paid profession) being the other.
I think most of us have at least a small idea of how the present medical system can be both good and bad. Some of the bad being the high cost, being shuffled from one doctor to the next, some of the things you mentioned.

I don't think the general population, me included, have any idea of how bad it can get, frustrating, exorbitant cost, etc., until you have a condition such as you have and describe, or other 'above normal' situations. Even with normal stuff, treatment, and conditions, the cost is high. And the solutions often low. I have empathy.
 

SimpsonClone

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There are and that's not to say every case is "hopeless".

In my experience a complete lack of centralized care, and by that I mean an interconnected network of professionals who collaborate, makes finding care nearly impossible. After about 5 years I realized I had a very unique case with a very unique presentation of symptoms. My age of onset, the interplay with the wisdom teeth, the cystic mass (that actually formed twice...once when being in the cold and a second time after being in the sauna at Lied), were all out of the ordinary. That was compounded by the fact trigeminal disorders are often diagnosed based on concrete symptomology or by exclusion. The treatments are usually "boxlike", and by that I mean 'here are the treatments we give for people in your diagnostic box'. Despite seeing doctors all over the US, not ONE really tried to tie my symptoms and the mass, that were definitely inter-related, together.

Basically the state of HMO regulated medicine, lawsuit-minded instituations, technology, lack of time, human error, and the lack of centralized collaboration all combine to inhibit the diagnostic process. This in turn leads to poor treatment as they often don't really know (or understand) what they are treating. I'm sure some in here can identify with what I'm saying through many will not. Until you have something that is hard to diagnose/treat and go through the system you can't begin to understand how broken the process is.

Another aggravating aspect is that people who experience the above often get bled dry with absolutely NOTHING to show for it. It's preposterous doctors charge the same price for a "service" in the absence of results. Thousands of Americans get bled dry going from doctor to doctor and getting charged full price on every visit. I'm not saying it should be free but there definitely should be an award/incentive for doctors to get results outside of relying on their altruistic heart. It's one of the few professions where people are charged regardless of outcome, with attorneys (another highly paid profession) being the other.
***Disclaimer*** I briefly talk about bowel movements below.

There is a lot of truth in this post. A few years back I was shitting blood, and not just small amounts of bright blood when I wiped. I mean, dark red stained water. For context, I was 29 at the time, don't drink regularly, and had a BMI <23. I talked to my doctor and he sent me in for a colonoscopy. Colonoscopy came back with no explanation and a new appointment was set for a stomach scope. I got the bill for my colonoscopy 2 months after the procedure; it was over $1,000.

So I promptly called my insurance to ask why such a relatively routine and minor procedure was so expensive. Since it was billed as a diagnostic procedure I owed something like 80% of the bill. I then called and canceled my stomach scope. My wife and I are both teachers so the bill for $1000 took us awhile to pay off, and I was not interested in adding more medical debt before I hit 30. By this point, I had changed my diet to include less red meat, more greens, and easier to digest grains. I also started taking metamucil each night before bed after my brother said he had similar stomach/bowel issues in his 20s. I have had a couple flair ups since then, but I assign that to mostly being the result of me straying from my diet. At least that is what I hope it is.

Since then, my doctor has recommended I do a sleep study, but I haven't set any appointments for fear of another surprise bill. The whole experience has made me feel more and more cynical about our healthcare system and not want to get checked out when something feels off. I know that isn't the right way to look at it, but once bitten, twice shy. You know?
 
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khardbored

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Most of this is fine, just when you’re being aggressive calling back, remember that the people you will be talking to have almost zero control over most issues you are calling for.

Also sometimes ask a doctor if they think you should get a second opinion even if you do feel comfortable with what they are saying

What's the rationale here? (If a doc felt I needed a 2nd opinion, why wouldn't he/she just tell me that?)
 

matclone

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What's the rationale here? (If a doc felt I needed a 2nd opinion, why wouldn't he/she just tell me that?)
Doctors don't always have a single answer or a perfect answer. They may suggest something a patient doesn't like, e.g., "you need surgery" or, maybe, "there's not a lot more we can do about it". I believe most are sincerely interested in their patient's care and that it's not uncommon to ask another doctor (maybe with more experience treating a certain condition) for an opinion or to suggest to the patient that they seek one.
 
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FriendlySpartan

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Doctors don't always have a single answer or a perfect answer. They may suggest something a patient doesn't like, e.g., "you need surgery" or, maybe, "there's not a lot more we can do about it". I believe most are sincerely interested in their patient's care and that it's not uncommon to ask another doctor (maybe with more experience treating a certain condition) for an opinion or to suggest to the patient that they seek one.
This is a lot of it especially the experience part. There is also no guarantee that the second opinion will be any different. Patients also complain about this sometimes as they feel like they are just being passed off. Most physicians have an ego (especially surgeons) so they usually want to handle it themselves. It all depends on the individual doctor so it never hurts to ask especially if something is presenting in an unusual way.
 
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matclone

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Also, while the patient may be comfortable with her doctor's advice, she may be feeling pressure from family or friends who have their own (often more dramatic) diagnosis for what ails her and you "want to be sure". Doctors are used to the concept of second opinions and aren't necessarily going to be offended if you ask. It just depends on the situation and who you're dealing with.
 
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BCClone

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Not exactly sure.
This is a lot of it especially the experience part. There is also no guarantee that the second opinion will be any different. Patients also complain about this sometimes as they feel like they are just being passed off. Most physicians have an ego (especially surgeons) so they usually want to handle it themselves. It all depends on the individual doctor so it never hurts to ask especially if something is presenting in an unusual way.
Some surgeons will fight seconds. One hospital was slow playing my moms stuff and seeing new people every single visit. So my sister got a second lined up at Mayo (she was a CFO for a couple of their hospitals so she pulled some). Days before the second, the surgeon looked at my mom and said she would be dead in less than a year if she didnt have surgery. I said we are getting a second opinion, he said she can’t last that long so he wouldnt turn over their info. I told them she had one a couple days later, he reluctantly gave it to us then. Mayo changed her meds and she lived for 15 years wirh just meds.

Some doctors can’t let their egos allow them to believe there could be other ways.
 

FriendlySpartan

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Some surgeons will fight seconds. One hospital was slow playing my moms stuff and seeing new people every single visit. So my sister got a second lined up at Mayo (she was a CFO for a couple of their hospitals so she pulled some). Days before the second, the surgeon looked at my mom and said she would be dead in less than a year if she didnt have surgery. I said we are getting a second opinion, he said she can’t last that long so he wouldnt turn over their info. I told them she had one a couple days later, he reluctantly gave it to us then. Mayo changed her meds and she lived for 15 years wirh just meds.

Some doctors can’t let their egos allow them to believe there could be other ways.
Surgeons almost always have the biggest egos and some will always view surgery as the best option. It’s unfortunate but it is reality. This isn’t everyone in the field but the god complex is real.
 

t-noah

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Surgeons almost always have the biggest egos and some will always view surgery as the best option. It’s unfortunate but it is reality. This isn’t everyone in the field but the god complex is real.
Type A to the Nth degree. Often.
 

t-noah

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Some surgeons will fight seconds. One hospital was slow playing my moms stuff and seeing new people every single visit. So my sister got a second lined up at Mayo (she was a CFO for a couple of their hospitals so she pulled some). Days before the second, the surgeon looked at my mom and said she would be dead in less than a year if she didnt have surgery. I said we are getting a second opinion, he said she can’t last that long so he wouldnt turn over their info. I told them she had one a couple days later, he reluctantly gave it to us then. Mayo changed her meds and she lived for 15 years wirh just meds.

Some doctors can’t let their egos allow them to believe there could be other ways.
May I ask what her condition was, and how old she was when she passed? God bless her and you.
 

CycloneDaddy

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***Disclaimer*** I briefly talk about bowel movements below.

There is a lot of truth in this post. A few years back I was shitting blood, and not just small amounts of bright blood when I wiped. I mean, dark red stained water. For context, I was 29 at the time, don't drink regularly, and had a BMI <23. I talked to my doctor and he sent me in for a colonoscopy. Colonoscopy came back with no explanation and a new appointment was set for a stomach scope. I got the bill for my colonoscopy 2 months after the procedure; it was over $1,000.

So I promptly called my insurance to ask why such a relatively routine and minor procedure was so expensive. Since it was billed as a diagnostic procedure I owed something like 80% of the bill. I then called and canceled my stomach scope. My wife and I are both teachers so the bill for $1000 took us awhile to pay off, and I was not interested in adding more medical debt before I hit 30. By this point, I had changed my diet to include less red meat, more greens, and easier to digest grains. I also started taking metamucil each night before bed after my brother said he had similar stomach/bowel issues in his 20s. I have had a couple flair ups since then, but I assign that to mostly being the result of me straying from my diet. At least that is what I hope it is.

Since then, my doctor has recommended I do a sleep study, but I haven't set any appointments for fear of another surprise bill. The whole experience has made me feel more and more cynical about our healthcare system and not want to get checked out when something feels off. I know that isn't the right way to look at it, but once bitten, twice shy. You know?
I had this same experience … $800 out of pocket for them to tell me I had the cleanist colon of the day.

I guess I shouldnt complain about their guidance of eat more fiber and dont strain when you poop.
 

BCClone

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Not exactly sure.
May I ask what her condition was, and how old she was when she passed? God bless her and you.
She had valve issues from having rheumatic fever three times as a kid. Was 89 when she passed. She did not want to have surgery.
 

t-noah

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She had valve issues from having rheumatic fever three times as a kid. Was 89 when she passed. She did not want to have surgery.
Thank you. Sounds like you and your Mom made the right decision!

And surgery is no guarantee. My Dad elected to have some heart surgery (can't remember exactly what is was now). He was on a heart bypass machine for quite a long time (too long, 8 hrs comes to mind), and he was never the same after that. His mental acuity and sharpness were no longer there.

He lived another 10-15, or so, more years, and died of old age, 91. But you have to wonder if the heart surgery was worth it? Without it, he was sharp as a tack. Was the 10 extra years worth it?
 

BCClone

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Not exactly sure.
Thank you. Sounds like you and your Mom made the right decision!

And surgery is no guarantee. My Dad elected to have some heart surgery (can't remember exactly what is was now). He was on a heart bypass machine for quite a long time (too long, 8 hrs comes to mind), and he was never the same after that. His mental acuity and sharpness were no longer there.

He lived another 10-15, or so, more years, and died of old age, 91. But you have to wonder if the heart surgery was worth it? Without it, he was sharp as a tack. Was the 10 extra years worth it?
Definitely quality and quantity are a tough mix to balance.
 

SimpsonClone

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I had this same experience … $800 out of pocket for them to tell me I had the cleanist colon of the day.

I guess I shouldnt complain about their guidance of eat more fiber and dont strain when you poop.

I hear ya. Good news was there weren't any polyps, signs of disease, or damage, but damn I was hoping for some kind of useful feedback if it cost me $1000 and an evening of drinking an enema.

I think my biggest gripe is that it was a surprise bill. I was younger and very naive about how our healthcare system operates. That said, I can't but feel that it is insane that hospitals and clinics don't provide an estimate of your bill prior to services being rendered. What other industries operate that way?
 
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