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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

They're coming after our pain meds!

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Unread 01-25-2013, 11:36 PM   #1
Dubious
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Default They're coming after our pain meds!

Always a battle, isn't it?

http://www.nytimes.com/2013/01/26/he...odin.html?_r=0

http://www.cnn.com/2013/01/25/health...ion/index.html
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Unread 01-26-2013, 06:46 AM   #2
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Hey. There may be a silver lining in the for much of "the CRPS community."

First, most of us have long-since graduated to the Schedule II meds that come with the bells and whistles already, so we're not likely to be seeing any changes, at least in this round: correct me if you disagree.

The people for this is going to effect immediately are the newly injured who are "still" (sorry - ) on the lighter analgesics. BUT if in practice it forces them to be referred to pain specialists sooner rather than later [assuming that "access" is not in issue] then so much the better in terms of getting effective treatment when it can make a difference.

The problem, of course, is that access will be a problem, primarily for the poor and those living in rural areas. But isn't that part of what makes this a great country?

Mike
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Unread 01-26-2013, 11:33 AM   #3
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I agree. They're not exactly coming after our medication because a chronic disease comes with chronic med use. Above poster said it perfect that people in our position should have well documented Dx and Px. They just want to restrict a medication that is being way to widely perscribed. Just another way to keep deaths, diversion and politics in the hands of the DEA. Yeah it puts legit patients between a rock and a hard place, but it is getting to where the only place to obtain long term opiates is from pain specialists. There isn't really going to be an "in-between" anymore. Either long term use or nothing at all.
I personally think, for now, it all depends on your relationship with your doctor. That C2 thing isn't set in stone yet. But when it is, it is your doctors choice weather or not they want to get ***** from the DEA for writing too much hydrocodone prescriptions. They will still write for those who truly need them. But for the average Jo who has a slight injury, opiates will not be so wildly available and I agree with that much.
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Unread 01-27-2013, 09:57 PM   #4
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Quote:
Originally Posted by Morgan Herritage View Post
They will still write for those who truly need them.

.

I disagree with some of your thoughts. I believe 'they' will still write for SOME patients who truly need them.

Your statement implies that everyone who truly needs long term pain meds is already getting them. I don't think that's true. I feel very lucky, not entitled, to be one of the "haves" not the "have nots" regarding adequate pain medication. It was many years into my RSD battle before I could say that. I'm not happy about those years of agony.....and I wouldn't wish them on our fellow chronic pain sufferers who haven't found a decent medical team yet.
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Unread 01-27-2013, 11:29 PM   #5
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Originally Posted by fmichael View Post
Hey. There may be a silver lining in the for much of "the CRPS community."

First, most of us have long-since graduated to the Schedule II meds that come with the bells and whistles already, so we're not likely to be seeing any changes, at least in this round: correct me if you disagree.

The people for this is going to effect immediately are the newly injured who are "still" (sorry - ) on the lighter analgesics. BUT if in practice it forces them to be referred to pain specialists sooner rather than later [assuming that "access" is not in issue] then so much the better in terms of getting effective treatment when it can make a difference.

The problem, of course, is that access will be a problem, primarily for the poor and those living in rural areas. But isn't that part of what makes this a great country?

Mike
I think you are exactly right...with the emphasis on "access." And to someone who can figure out the puzzle and move the patient beyond square one. What I fear is that our "system" as it is rapidly morphing into a super-HMO, while access may look good on paper and in theory, in practice there are so many moving parts and with the introduction of a new bureaucratic quagmire, many physicians will refuse to participate and the ones that do will be so overwhelmed and have to practice according to a very restrictive and punitive algorithm. That is where the bottle neck will lie, I think!
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Unread 01-28-2013, 04:17 PM   #6
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Quote:
Originally Posted by finz View Post
Your statement implies that everyone who truly needs long term pain meds is already getting them. I don't think that's true.
I am only responding to the thread tittles "they're coming after our pain meds."
The response was simply reguarding those who are already on pain medication for their condition. I was going against the fact that everyone being perscribed hydrocodone of some sort would be suddenly taken off.

I am on a RSD thread responding to a post about taking away medication. I am glad I got to clear up that mess.
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Unread 02-06-2013, 11:56 AM   #7
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Below is pasted the link to the FDA's Federal Register notice regarding the pain hearings this week. There is still time (until April) to send them a letter.

If you "Google" this, you should be able to find it (I can't post the link on this forum): Federal Register/Vol. 77, No. 244/Wednesday, December 19, 2012/Notices, DEPARTMENT OF HEALTH AND HUMAN SERVICES
Food and Drug Administration [Docket No. FDA–2012–N–1172]
Impact of Approved Drug Labeling on Chronic Opioid Therapy; Public Hearing; Request for Comments

These encroaching policies have had a recent and severe impact on me.

Last week my pain physician's assistant stated I would have to come in every month for medication management. I've had late stage CRPS since 1996, and have been taking the same pain/sleep medications in the same doses for more than twelve years. I told him I could not do it. I work full-time, and between driving to and from their office and two hours there (mostly waiting) - that eats up half my sick leave - four hours. I have other health issues and a medically fragile adult son that I also have to use my sick leave to deal with. No one asked me when I said I could not comply what the issues are, or suggested any other way to help me access care. So I stopped taking my medications. I've had a rough couple weeks; the pain is worse, and I've had to deal with the physical and emotional roller coaster of coming off these drugs - with no help or support.

I am so tired of seeing pain management physicians, who presumably got into this business to help people in pain, treat their patients like cattle. I talk with people in the waiting room and most have horror stories to tell about finding care. I am a model patient. I use the same pharmacy, the same doctor. I properly destroy medications and labels. I lock up my medications. I count them out into daily doses. I do not "abuse" pain medication. I've tried just about everything, including Ketamine.

If these regulations are changed, it will make the pain treatment even more impossible to navigate. Soon the medications of choice for people with pain will be aspirin and Ibuprofen. I strongly urge everyone to write to the FDA. Your words can make a difference, be polite and tell them what you have had to endure. No one should have to choose between pain and supporting their family.
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Unread 02-06-2013, 02:22 PM   #8
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Quote:
Originally Posted by lacy5122506 View Post
Below is pasted the link to the FDA's Federal Register notice regarding the pain hearings this week. There is still time (until April) to send them a letter.

If you "Google" this, you should be able to find it (I can't post the link on this forum): Federal Register/Vol. 77, No. 244/Wednesday, December 19, 2012/Notices, DEPARTMENT OF HEALTH AND HUMAN SERVICES
Food and Drug Administration [Docket No. FDA–2012–N–1172]
Impact of Approved Drug Labeling on Chronic Opioid Therapy; Public Hearing; Request for Comments

These encroaching policies have had a recent and severe impact on me.

Last week my pain physician's assistant stated I would have to come in every month for medication management. I've had late stage CRPS since 1996, and have been taking the same pain/sleep medications in the same doses for more than twelve years. I told him I could not do it. I work full-time, and between driving to and from their office and two hours there (mostly waiting) - that eats up half my sick leave - four hours. I have other health issues and a medically fragile adult son that I also have to use my sick leave to deal with. No one asked me when I said I could not comply what the issues are, or suggested any other way to help me access care. So I stopped taking my medications. I've had a rough couple weeks; the pain is worse, and I've had to deal with the physical and emotional roller coaster of coming off these drugs - with no help or support.

I am so tired of seeing pain management physicians, who presumably got into this business to help people in pain, treat their patients like cattle. I talk with people in the waiting room and most have horror stories to tell about finding care. I am a model patient. I use the same pharmacy, the same doctor. I properly destroy medications and labels. I lock up my medications. I count them out into daily doses. I do not "abuse" pain medication. I've tried just about everything, including Ketamine.

If these regulations are changed, it will make the pain treatment even more impossible to navigate. Soon the medications of choice for people with pain will be aspirin and Ibuprofen. I strongly urge everyone to write to the FDA. Your words can make a difference, be polite and tell them what you have had to endure. No one should have to choose between pain and supporting their family.
My wife who has RSD was the perfect patient for years also, but it didn't mean a hill of beans. She has given up on doctors. After 10 years she said to hell with the doctors and their pain pills and their pushing for invasive procedures, many in which are expensive and above all temporary. It was hell on her and me. But she seems to cope so far but I don't know for how long. What gets me is, just think about it for a second, would we treat our pets like this? Would we deny our pet dog Rover pain relief, force him to fetch, do a hundred tricks first? Oh, hell no.
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Unread 02-06-2013, 03:00 PM   #9
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Lacy, I'm so sorry you have been put in this position. It's not fair and unfortunately I don't think it is going to get any better in the health care system.
It's such a tough place for us to be in. Thanks for the address-I'll write and express my views. loretta
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Unread 02-06-2013, 03:48 PM   #10
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Thanks to you both for responding. I agree - our pet gets better care, and we certainly do not wait as long in the veterinarian's office. These issues will worsen dramatically as more and more people in the aging demographic develop chronic conditions (like CRPS) that come with pain. I believe we all have a personal responsibility to tell our stories to help not only ourselves, but those who will come behind us. Some of the people on this FDA committee, and who work at the FDA, will have loved ones in their families who will need help, or will need help themselves. It looks a lot different when you are on the inside looking out. Well written, well thought out, reasonable descriptions of what has happened or is happening to you, or someone you love, will move them. I have seen it happen. Our doctors need to weigh in here, too.
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