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)


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Old 04-25-2010, 04:37 PM #21
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Crazy

This has been such good discussion......a big eye-opener, that's fer sure!

With all this 'obama-ism' and healthcare change......yikes!

I would NEVER wish this upon ANYbody,......but I'm thinking, in reality, it's gonna have to take some high-profile figure to get struck with this nightmare of RSD......THENNN all of a sudden it'll get 'attention' and that's when we'll see a 'change'........ and we'll all be like........


yeahhhh, NOW we're cool......
But, for now...........yeah.........pee in the cup and take yer number.
How humiliating.......
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Old 04-26-2010, 12:44 AM #22
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I understand the point about 'proving' you didn't do anything wrong and disliking drug testing, but I'm not sure that I agree. Maybe the DEA would shut up on the matter if we all pee'd in a cup every month. I've been on narcotics for 5 years and I've never been asked to. Maybe some standardization would help our cause and make it easier for people to get the pain relief they need.

I also thing there should be more standardization in doctor's care. I believe if they say 'it's all in your head' they should be required to send you for mental help and follow up on that, so when the shrink says we are not crazy, the doctor has to dig a little deeper to figure out what's wrong.....and maybe pay us for our pain and suffering for making us needlessly wait for treatment.

I'd happily pee in a cup if I could see some doctors being held accountable too.
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Old 04-26-2010, 03:34 AM #23
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Originally Posted by Debby View Post
I am really really lucky, seeing as how I live in California & they are so strict on DEA crap here. I don't have to pee in a cup every month.
DebbyV
I live in So Cal, so it happens here as well. The more patients a doc prescribes opiates to, the closer they're watched. PMs can be waaaay stricter than PTPs for that reason.

I've never had a problem with a test and I'm positive my doc isn't worried that I will. The fact that the tests cost $600 a pop as someone said, makes me think that the financial incentive is a factor as well.
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Old 04-26-2010, 03:47 AM #24
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Originally Posted by jetjock1 View Post
You are spot on Jimking! It took me two years to get a correct diagnosis. Those two years were hell. No one took me seriously. "it's all in your head" they would say. It's the same old song and dance. "Don't do this and don't do that (interpretation: sequester yourself, take your activity to zero and take a lap around the pool) and go swim.

Kathi49; you are so lucky!! I would give my left you know what to get that kind of treatment. I don't know the intricacies of the Indiana pharmacy data base, but I bet that it's impossible to request those specific records. I don't have a problem getting my normal medical records, to the contrary. However, when it comes to accessing my states "Patient Health Surveillance Records" which are the pharmacy records, it is an insurmountable wall of red tape and questions. Frustration to the core, not to mention a bit scary when you find out that "non-medical personnel" have been accessing your record.

obama risk pools? Yikes!!
Swimming in water 98-102 degrees is actually excellent advice. I get SUBSTANTIAL relief from being in a pool. I've had some pain free experiences in warm ocean water. Not that we all get relief from the same things, but it certainly is worth a try if you haven't.

Do you have a work comp claim? If yes, that might be the non-medical personnel accessing your records. If you don't and want to spend the time to get access, give me a PM, and I'll see if I can relocate the info to send you on the right path.
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Old 04-27-2010, 12:06 AM #25
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Default Not a bad idea Finz

I think Finz might be onto something. After all, if we are not "users" then we should have nothing to fear right? I think you're absolutely right in the fact that there needs to be some kind of "standard of care" for RSD and chronic pain patients. Anything to hold the doctors more accountable for the proper care of chronic pain, I'm very in favor of.

I look at all the other posts on this board regarding standard of care and it is clear there is none. Sad.

Lit Love; I don't have a WC claim. I've suffered for over a decade from a very nasty biking accident. I'm not clear on how you relocate the information? Sounds intriguing though. You must have a law background I'm guessing?... Great reply by the way. Thank you for the input.
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Old 04-28-2010, 04:52 PM #26
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There is a very real need to treat RSD patients differently than any others because this disease is so much different than almost any others. Yeah, I know that there are some that are pretty similar in many ways especially in the short term. I know that there are other pain conditions which also need special treatment and I don't envy these folks their problems.

But RSD crushes life in a way that is different. It saps the spirit and takes the wind out of the sails. It causes a pain that is excrutiating to even contemplate and fear that never really goes away.

I don't know what the proper treatment protocol is. I'm not even convinced that the pain is even harmful to the degree it can be tolerated. All I know for certain is my own experience and this is that triggers must be identified and avoided. It's obvious we need to stay as busy as humanly possible and exercise at least as much as it doesn't cause pain immediately or later on. It's pretty obvious that there are medications which make this condition tolerable and will allow a sort of life if we can do it in between the raindrops or the tossing upon the waves. I don't know if it's fortunate or unfortunate that none of the powerful painkillers seem to help. It certainly has saved me from needing to experience the kind of problems mentioned here. When you're already fragile as glass you certainly don't need a doctor who uses a surgical two by four.

This pain is so horrible it's just inhuman to make people suffer it when it can be alleviated. It would be mighty nice to have a register of those who need access to these medications. Doctors might need to monitor their patients a little more closely but it's hard to believe that this would open up the flood gates and result in millions of dollars worth of illicit drugs on the streets.
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Old 04-29-2010, 04:33 AM #27
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Politics bad facts make bad law (or getting all the porcess they're due)

Recently, LA saw this problem emerge in microcosm when Senior U.S. District Judge Manuel Real - who is known to be somewhat "unpredictable" - surprised a lot of people and gave only a four year sentence to a doctor who plead guilty to a charge serious enough for the sentencing guidelines to recommend a term of 17 to 22 years: intentionally distributing oxycodone without a legitimate medical purpose. The remaining 16 counts against him were dropped in exchange for the plea. See, 4-year prison term ordered for 'drug-dealing doctor,' Los Angeles Times, April 15, 2010 http://www.latimes.com/news/local/la...,2146647.story

The doctor in question let things get a little out of hand, to put it mildly:
Healy, according to prosecutors, led the nation in 2008 in ordering hydrocodone -- painkillers sold under the brand names Vicodin and Norco. They accused Healy of wildly overprescribing and selling the drug, for which there is a thriving black market, particularly among young adults. Some of Healy's patients were in their late teens and early 20s and had been friends of Healy's sons.
* * *

One man who was observed by police entering Healy's clinic before it opened for the day was pulled over a short time later and had 12 commercial-size bottles of Vicodin and three containers of Xanax in his car -- 7,500 pills in all. The man told police he'd just paid Healy more than $5,000 cash for the drugs, and was planning to sell them for profit, according to court records
.

Sandy Banks, a columnist of the LA Times, ran two subsequent pieces on the story. The first expressed populist anger at the relatively low sentence. Peddling prescriptions like candy, Los Angeles Times, April 19, 2010 http://www.latimes.com/news/local/la...48,full.column The second piece, run a few days later, attempted to tell the other side of the story: the chilling effect this would have on the legitimate use of pain medications. Doctors’ second opinion, Los Angeles Times, April 25, 2010 http://www.latimes.com/news/local/la...6414204.column But it was a probably well-meaning statement of “Medical attorney Alan I. Kaplan” in the second column, that I found the most disturbing of all:
Kaplan said there are safeguards doctors can employ to insulate themselves and protect their patients.

"Be skeptical," he advised. Take a detailed history, try less-potent painkillers first, solicit a second opinion, require urine tests. Track patients in the state's database, use contracts that require patients to commit to using only one doctor and pharmacy and listen to family members' concerns and complaints.
Bottom line, the DEA has succeeded in imposing requirements on physicians that appear nowhere to my knowledge in any statute of the United States or agency rule promulgated under the safeguards of the Administrative Procedures Act. Furthermore, in creating a standard that the physician “and listen to family members' concerns and complaints,” they open the door to the very real risk of threats and intimidation of doctors by overbearing family members, one egregious incidence of which happened to a close friend. Furthermore, in “listening” to these complaints, if the doctor is to remain anything but infuriatingly silent, the patient’s privacy rights under HIPPA are all but thrown out the window.

Bottom line, if the government wants these requirements to be in place, it has mechanisms available for legally doing so. But to make their implementation a quid pro quo for physicians to avoid criminal prosecutions can easily be seen as a naked power grab that should be strongly questioned as an apparent violation of due process of law.

Mike

Last edited by fmichael; 04-29-2010 at 04:12 PM.
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Old 04-30-2010, 05:16 PM #28
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Originally Posted by jetjock1 View Post
My pm doctor of 8 years just dropped me cold, without warning, and cut all meds just like that. Said he was afraid of "diversion". I'm pretty sure it had something to do with the visiting DEA agents. I had my pcp doctor refer me to another pain management clinic and they took me right away. Avoided a major set back just by the skin of my teeth.

So I was thinking... here is a list of things I'm sick of. Anyone else who can think of anything else, feel free to add to it!

I'm sick of feeling like a criminal every time I get my multiple pain med prescriptions filled, hoping that my pharmacist doesn't talk to loud about my so called "problem". At least that's what he likes to call it. Really?

I'm sick of having to pee in a cup every single time I go in for a pain management visit.

I'm sick of having to bring in all my prescription bottles to every pm doctor appointment just so they can count them. Really?

I'm sick of having to settle for a pain score of 5-6 when I know if my pm doctor was not afraid to prescribe properly, I could keep it at a 2-3 score.

I'm sick of DEA intimidation tricks that take away my ability to have my pain properly managed. My only consolation is the hope that every single DEA agent, cop or rent-a-cop will someday get a brutal case of RSD or at least a swift kick to the crotch that will give them everlasting pain.

I'm sick of not having access to my states so called, "Public Health Surveillance Program" that gives every medical provider full access to my pharmacy records. I want to know who has been snooping into my history. It's my health information and I want full access too!!

I'm sick of over hearing murmured words of "addict" and "seeker" coming from behind the check in desk at my pm doctors office. Is it because I have been there for so long? Really?

I am sick of being mis-represented as a chronic pain patient in every story that comes out in the media, headlined with, "91% of Chronic Pain Patients Abuse Prescriptions". SICK OF IT!

I'm sick of being accused of something I have never done or been guilty of doing. "Guilty until proven innocent" is the pm doctor's mantra.

I can only hope that in the near future they will require all pain management doctors to go through "pain management realism training". That would be where they attach a pair of vice grip pliers on the doctors arm nice and tight. Then every day, unexpectedly, someone walks up to them and cranks down the vice grip pliers another notch or so, until it becomes so excruciatingly, exquisitely painful they have to run to the emergency room only to be met with suspicion and accusations of "seeker" and "shopper". Oh ya, and did I mention the vice grip pliers are red hot and there is nothing you can do about it 24/7/365??

Allrightythen. I feel just a tad bit better.

Feel free to add a thing or two my friends.
Hi Jetjock1, Welcome to this wonderful group of compassionate and informed friends. We all need a place to and share our frustrations-we can learn so much from each other. It sounds like you are having a rough time with your meds. There has to be respect and trust from the Doctor to the patient. I wouldn't stand for it any other way. I've had RSD 15 years and seeing this last Dr. 6 years. He is a neurologist, pharmacologist, and psychiatrist. Good combination huh!
I can't help but wonder if you are a pilot? I recognize the plane. My son in law is a pilot for one of the commercial airlines. If you are, could it be your Dr. is scared of being involved in some future possible lawsuit. My daughter is a courtreporter and I know for a fact, some Drs. don't want to treat patients if they are involved in litigation or possible litigation. They hate going to court and being pulled into a suit.
Counting pills sounds like they are dealing with you like a street seller. Not right. You will find a Dr. that is respectful. Take care, and glad to have you join our supportive friendly group. One of your new friends, loretta
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Old 04-30-2010, 07:59 PM #29
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Lightbulb Good Point~

Quote:
Originally Posted by loretta View Post
Hi Jetjock1, Welcome to this wonderful group of compassionate and informed friends. We all need a place to and share our frustrations-we can learn so much from each other. It sounds like you are having a rough time with your meds. There has to be respect and trust from the Doctor to the patient. I wouldn't stand for it any other way. I've had RSD 15 years and seeing this last Dr. 6 years. He is a neurologist, pharmacologist, and psychiatrist. Good combination huh!
I can't help but wonder if you are a pilot? I recognize the plane. My son in law is a pilot for one of the commercial airlines. If you are, could it be your Dr. is scared of being involved in some future possible lawsuit. My daughter is a courtreporter and I know for a fact, some Drs. don't want to treat patients if they are involved in litigation or possible litigation. They hate going to court and being pulled into a suit.
Counting pills sounds like they are dealing with you like a street seller. Not right. You will find a Dr. that is respectful. Take care, and glad to have you join our supportive friendly group. One of your new friends, loretta
Well Wow! This would put a whole different 'twist' on your particular situation JetJock! I mean, as in 'insinuating circumstance' type thing!
The doctor completely cutting you off cold - I will never understand that, unless there were obvious legal reasons, but I see why you have such frustration.

IF, say, you ARE a pilot, or in a profession similar, in which renders you 'under a microscope', that would make a lot of this bureaucratic 'madness' come into a bit more of a perspective..... you'd be in a category that would require further scrutiny .......
certain professions require extensive background checking and things of that nature. This wouldn't be directly targeting 'YOU' as a 'badguy'.....it's just what comes with territory of being in certain positions of responsibility.
Right? ...or not? I'm not claiming to know beans, but Loretta brings up a good point and this would sort of make it clearer why someone other than medical personnel were tapping into your prescription records.
I'm certainly not implying one way or the other what should be considered 'right' or constitutional......but if this were your predicament....it would make things a bit more clear as to WHY you are having to jump thru these seemingly 'over-the-top' hoops........
.....well, either way....my heart does indeed go out to you. But, by seeing this situation in a different light, it should come somewhat as a comfort to you knowing that it's really not YOU so much......it's just that the position you are in may put you in a category of having to be scrutinized......
You aren't being perceived as a criminal......it may just be that you are a 'topgun' and perhaps it is some sort of government protocol.

Well, whatever the case may be.....you are in the RIGHT place to vent all you want! And you've got plenty of support backing you up.......those of us in general who take controlled substances have to accept (to a certain extent) that this is the way it is........thanks to the 'real' badguys who gave these meds the 'bad rap'..... it's a bummer. simple as that.
It's a reality that diversion does take place. There's no doubt about the fact that the whole 'War on Drugs' since the 80's has really made this a taboo issue to some........of course we can rewind history back in the days of prohibition when alcohol was the big 'diversion issue'.........
ok, i'll shut up.
This certainly has been very good discussion tho!
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Old 05-01-2010, 02:55 PM #30
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I agree with you about the pm Dr's. When I went there they made me feel so degraded! I have been on my med's for full body RSD for over almost 9 years now. Thank goodness for my GP! He is the one who prescribes all of my RX. I will never go back to those pain DR's again! They said things like you do not even know what day it is today? This was after I told them what day it was? Every time I tried to ask them a question,they would just interup (sp?) me before I had the time to ask them! Then right away they wanted me to stop all my meds! So I could come back in two weeks to be tested for their Medtronic Neurostimulation Therapy! They gave me a DVD about the surgery for the stimulater and sent me home,without even talking about it with me! Oh! I forgot I am a drug head so what did it matter anyway! Also you are right,this is the first time that I have every had to pee in a cup Welcome to this caring and loving group! Breezy55
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