The NFTP Patient Chat Room

LOOKING FOR INFORMATION ON SCARED TISSUE AND THE EFFECTS? (6 replies)

tjnana2 — Wed, 08 Sep 2010 17:29:13 -0600

Hello everyone,

My husband is suffering from scared tissue from previous back surgeries. This has left him with sever pain in his legs. It appears the size of this formation was in size of a baseball . In hopes of relieving some pain they were only able to find two. They appeared to be mingles in and out like worms and could cause him to be paralyzed Has anyone heard of an attempt to help with this problem or any studies on this? I'm sure it has grown through the years. Any advice would be appreciated.

where is everyone? (20 replies)

tiredofpain07 — Thu, 09 Sep 2010 09:19:56 -0600

Hello all,
I was just curious where everyone is? Its not like everyone to just disappear. Ive been in alot of pain & I know everyone else is too, but its just not normal for no one to not comment on what is being posted. I just hope that everyone is ok. Just wanted to check in to see how everyone is & why theres not been an answer. Hope to hear from someone soon.

Janet

switching to suboxone from methadone (1 reply)

DeeDee — Sat, 28 Aug 2010 11:30:09 -0600

I want to switch from methadone to suboxone and get it done without going through withdraws again is it possible

doctor day (no replies)

tiredofpain07 — Thu, 26 Aug 2010 17:53:38 -0600

Hi everyone,
I had a doctors appointment today. Ive been seeing the same dr for my pain for a little over 18 months & Ive had to BEG for what little bit of meds that he gives me. Today they about gave me a heart attack when they said that I needed to see the head honcho for an increase with my meds.

Its always been that if I even thought of asking for more in quanity, strength that I was to be put immediately on the schedule for surgery for the spinal cord stimulator, today it was like " we need to increase" but we dont have much room to go----which I know is a lie. They have a lot of room to go. What do they think I am STUPIID? At least they are talking increase, so thats a good thing. A little bit too late but atleast they are on the right track.

I still dont know how long its going to take to get into the new pain clinic & I have to make sure that I have my meds to keep me going until I get in there---the last thing that I need is to run out of my meds--that would NOT be a good thing. What they give me isnt all that great, but its better than not having anything at all.

I just cant believe that they have had a change of attitude regarding my meds, its like a light bulb went off. But then again she saw my "good" leg today---- which speaks volumes----its so swollen, its easy to see that somethings not right, if you know what I mean.

Hope that ya'll have had a good day---Im totally wiped out, but dr days always do that to me. Thanks & hope to hear if any of your dr days goes the same way for you. :):):)

Janet

Problems with neck nerve block for rotator cuff surgery??? (4 replies)

tjnana2 — Sun, 22 Aug 2010 19:07:58 -0600

My mother went in for laser surgery to repair a rotator cuff tear. They had to go in because her cartilage was worn and allot of bone spurs. She awoke with a 2 inch incision and the three holes from the laser. They suggested that she have the nerve block in her neck to eliminate as much medication to be put to sleep and pain. We told them she had a plate that was pushing against her esophagus from a past disc fusion and nerve damage in her neck. She is putting surgery off for another bad disc for now and as far as her plate pushing in , they can't do anything about it and said it would be to dangerous. She has a problem with swallowing and eating. Only a few small bites and sips of water. The Ultra sound should it going at every angle when she swallowed and they are concerned about it getting into her lungs. He told us that most of the people chose this and the recovery was better and with anything it could have side effects. This was just as they were taking her back and I fell I should have asked more questions before agreeing to it. The procedure wasn't explained at all and they were already 5 hrs. behind schedule waiting for her surgery.
It will be 3 weeks Friday and her whole side of her face is still numbed. She can't even fell her ear, the side of her nose, or that side of her face. The Doctor at first said it was the harness that holds her face during surgery and it could have been a little to tight but the feeling should be back in a week or so. This Monday, she seen an intern which seemed more concerned and called the anesthesiologist to see exactly where the injection was given. He came back in and said, the numbing would not go up, so it was still the harness that held her face still. Regardless, something went wrong and I am very concerned. She is having a really hard time verses the other side she had done. Much pain, tingling, burning, down her arm and in her neck.
Has anyone ever herd of this happening? Or how long it could take. Is it possible they cut a nerve that would effect her like this?

Things to do to keep the Pain off the Brain (12 replies)

mark.barletta@paincare.org — Thu, 26 Aug 2010 20:09:53 -0600

1. Sweep your kitchen floor.
2. Vacuum
3. dust your furniture
4. clean your restroom
5. Wash your car
6. go buy grocery's
7. stop worrying about every little thing
8. get out of bed
9. ride your bike
10. go walk a few miles
11. get a hair cut
12. go see a friend
13. cook a good meal.
14. wash clothes
15. visit your Mom
16. call a friend
17. post in this chat room
18. wash your car
19. buy a new pair of shoes
20. go fishing

Post-club feet (1 reply)

Notumbo — Tue, 10 Aug 2010 13:17:42 -0600

I am trying to locate practitioners with direct experience treating adults suffering with post-club feet chronic pain, especially in the Northern California region, but anywhere else in the US as well.

Suffering every day in Intractable pain (23 replies)

mark.barletta@paincare.org — Sun, 22 Aug 2010 21:47:03 -0600

Years have passed since I first felt the pain I live with today. How all consuming it can be, taking up all of my time. You have to live around the pain and do things when the pain lets you.
If its planning to go grocery shopping, I plan a day a head of time to get my mind set I need to get it done correctly. All of everything I do is planned ahead of time to make sure the pain will let me do what needs to be done.
So for me living with Intractable pain takes every ounce of energy I have and planning. To a person that is normal you have no idea how the pain controls and rules your life.
Having to accept the fact the pain is never going away keeping it under control is also time consuming. It takes all the patients I have to deal with Intractable pain.
But I have come to realize there is nothing I can do to change things so I deal with it the best way I can.
Did I think my life would end up like this , No but it did so I try to make the best of it. Just like a person with a bad case of diabetes , there is a certain way I have to live my life to work around the constant controlling pain.

So all of you please tell me how you deal with your Intractable pain on a daily basis, do you plan a day ahead what your going to do the coming day.
I know it takes every ounce of energy I have just to go to the store for groceries. I went last Thursday and spent $325.00 and it took me all day to put everything away. I shop for a full month.
So that is a full day just getting my food home up the stairs and put away. I can remember when it was nothing to go to the grocery store now it takes me a full day.

I hope all of you have the correct pain relief you need and deserve, please let me know if you need help finding a Pain Specialist, this is my job Advocating for those that suffer from Chronic Intractable pain here at The National Foundation for the Treatment of Pain.

Mark Barletta
National Coordinator

Starting a new Topic (2 replies)

mark.barletta@paincare.org — Thu, 05 Aug 2010 18:11:53 -0600

Anyone that has something to say please start your own Topic, you must register first.
It is very easy to register so you can use the chat room.
Please tell us how you became a person that suffers from Intractable pain.
You can let it all out here in the chat room, vent, tell how sick you are of being in chronic pain.

May I suggest you look at some of the articles on hormones published by Dr. Forest Tennant in Practical Pain Management. Unless an Intractable Pain patient learns how to control their retained electricity which IP generates and embarks on some hormone therapies their condition will progressively worsen. On the other hand a program to control retained electricity and the use of specific hormones will stabilize the pain and bring about some permanent reduction in pain.

Websites:

www.intractablepaindisease.com

www.foresttennant.com

Mark Barletta

has anyone heard of strep viridan empyema (2 replies)

tjnana2 — Fri, 23 Jul 2010 08:10:35 -0600

My husband has been with the pain clinic for 16 yrs. with nerve damage from 5 failed back surgeries. Do you ever fell anytime your sick or have other illness, your just put aside because they see all the medication you take and blame it on that? He had pneumonia 5 times within the last 7 months. This last time he had severe pain in his chest but since he was on so much medication they thought he wanted more ..because his 80 mg 4 times a day of oxy and 10 mg of meth 2 times a day, just wasn't helping. We demanded a x ray which showed something unusual went to a ct scan showing fluid in his lung. He was admitted, put on toroidal which really helped him. I'm guessing because he is so use to the other from years. He was admitted for 28 days, a chest tube that wouldn't drain, to having to go in to biopsy, and get the infection out. His ox. was in the 74-82 and had to stop his pain meds. at times, put a morphine pump and after 3 weeks testing showing he had this rare infection. Home for two weeks 30 mg of morphine every 4 hrs with a home health nurse taking care of his chest tube. Now he is coming off of morphine to one every 6 hrs 2 weeks to one every 12 hrs for two weeks. My concern is the next ct scan coming in two weeks to be sure there is nothing underlying that the infection was hiding. He now has double vision and still in pain, mostly with his legs as always and giving up the morphine is very hard. What could be going on with his eye sight. could it be all the medication? Has anyone heard of this rare infection and the results of the healing? So concerned because they just don't know how he got it and had to be there for some time. All the other lungs problems where just treated with prednisone and I fell they never cleared it before. Had they not just assumed it was all his meds. or his usual complaining with his back, maybe it would not had gotten so bad. It was very hard to keep his pain under control based on all his other years of narcotics but yet the morphine was slowing his breathing down and the toroidal that seemed to help, they could only give a few days at a time. A non narcotic helped him more than anything. What does that means? so confused with what steps to take because he is in bed most of his life with the nerve damage in his legs from back and gout, arthor in his feet. His feet and ankles are so swollen too. Could all this medication for 20 years done this damage to his body and all of the medication . Could it have messed his eyes up. This just happened in the last week. His eyes will not move together and now double vision. He has put an eye patch on which seems to help. Any advice??? would be appreciated.

Lawsuit for All Pain Patients in Washington State (no replies)

mark.barletta@paincare.org — Sat, 26 Jun 2010 07:02:35 -0600

Lawsuit for All Pain Patients

Jun 9 2010 12:00AM

Dear Sir

My name is Clyde Scalf and I suffer from intractable chronic pain and a member of NFTP.
The reason for this e-mail is to inform you and all of those who suffer from pain and recieve under treatment or no treatment at all for their pain.
There is currently a lawsuit against Washington State brought by Merle Janes, M.D, MD with the complaint of declaratory and injunctive relief and damages.
Notwithstanding of Dr. DeLuca this suit also includes all individuals living in Washington State who suffer from chronic pain and cannot find relief and if you can find medical help is quite often undertreated. This action is a class action lawsuit for those who have chronic pain. This case is currently at the appellet level and will be decided on July 9, 2010. There is reason to believe this will be turned over to the 9th Circuit Court. Depending on their interpretion of the law and it is denied the attorney for this case will go to the Supreme Court of the United States. I've spoken to the attorney, Ms. Laura Cooper, and her intent is well thought out and determined.
There is a need for individuals who have chronic pain to be aware that this is a class action suit that may affect them. The full context of this suit is available at www.painreliefnetwork.org/ . I would urge all individuals to read this lawsuit and determine for themselves it's revelancy.
This lawsuit is also about the Americans with Disabilities Act. Pain in and of it's self is a disability. If it is intractable it fits the language of this act and therefore must be considered a disability.
As a pain patient I would encourage you to read this lawsuit and address to those who may not be aware of this of its potential ramifacations for their health and well being.

Thank you for your time in reading this letter

With Best Regards;

Clyde C. Scalf
(509) 292-0663
clydescalf@q.com

7 Myths of Prescription Pain Killer addiction::o (no replies)

rsdfairy — Sun, 20 Jun 2010 19:32:20 -0600

Prescription Painkiller Addiction: 7 Myths
Experts Debunk Myths About Prescription Pain Medication Addiction
By Miranda Hitti
WebMD Feature
Reviewed by Louise Chang, MD
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Prescription pain medicine addiction grabs headlines when it sends celebrities spinning out of control. It also plagues many people out of the spotlight who grapple with painkiller addiction behind closed doors.(:P)

But although widespread, addiction to prescription painkillers is also widely misunderstood -- and those misunderstandings can be dangerous and frightening for patients dealing with pain.

Where is the line between appropriate use and addiction to prescription pain medicines? And how can patients stay on the right side of that line, without suffering needlessly?

For answers, WebMD spoke with two pain medicine doctors, an expert from the National Institute on Drug Abuse, and a psychiatrist who treats addictions.

Here are seven myths they identified about addiction to prescription pain medication.

Commonly Abused Prescription and Over-the-Counter Drugs
1. Myth: If I need higher doses or have withdrawal symptoms when I quit, I'm addicted.

Reality: That might sound like addiction to you, but it's not how doctors and addiction specialists define addiction.

"Everybody can become tolerant and dependent to a medication, and that does not mean that they are addicted," says Christopher Gharibo, MD, director of pain medicine at the NYU Langone Medical School and NYU Hospital for Joint Diseases.

Tolerance and dependence don't just happen with prescription pain drugs, notes Scott Fishman, MD, professor of anesthesiology and chief of the division of pain medicine at the University of California, Davis School of Medicine.

"They occur in drugs that aren't addictive at all, and they occur in drugs that are addictive. So it's independent of addiction," says Fishman, who is the president and chairman of the American Pain Foundation and a past president of the American Academy of Pain Medication.

Many people mistakenly use the term "addiction" to refer to physical dependence. That includes doctors. "Probably not a week goes by that I don't hear from a doctor who wants me to see their patient because they think they're addicted, but really they're just physically dependent," Fishman says.

Fishman defines addiction as a "chronic disease ... that's typically defined by causing the compulsive use of a drug that produces harm or dysfunction, and the continued use despite that dysfunction."

For instance, someone who's addicted might have symptoms such as "having drugs interfere with your ability to function in your role [or] spending most of your time trying to procure a drug and take the drug," says Susan Weiss, PhD, chief of the science policy branch at the National Institute on Drug Abuse.

"Physical dependence, which can include tolerance and withdrawal, is different," says Weiss. "It's a part of addiction but it can happen without someone being addicted."

She adds that if people have withdrawal symptoms when they stop taking their painkiller, "it means that they need to be under a doctor's care to stop taking the drugs, but not necessarily that they're addicted."

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2. Myth: Everyone gets addicted to pain drugs if they take them long enough.

Reality: "The vast majority of people, when prescribed these medications, use them correctly without developing addiction," says Marvin Seppala, MD, chief medical officer at the Hazelden Foundation, an addiction treatment center in Center City, Minn.

Fishman agrees. "In a program where these prescription drugs are used with responsible management, the signs of addiction or abuse would become evident over time and therefore would be acted on," says Fishman.

Some warning signs, according to Seppala, could include raising your dose without consulting your doctor, or going to several doctors to get prescriptions without telling them about the prescriptions you already have. And as Weiss points out, being addicted means that your drug use is causing problems in your life but you keep doing it anyway.

But trying to diagnose early signs of addiction in yourself or a loved one can be tricky.

"Unless you really find out what's going on, you'd be surprised by the individual facts behind any patient's behavior. And again, at the end of the day, we're here to treat suffering," says Fishman.

Likewise, Weiss says it can be "very, very hard" to identify patients who are becoming addicted.

"When it comes to people who don't have chronic pain and they're addicted, it's more straightforward because they're using some of these drugs as party drugs, things like that and the criteria for addiction are pretty clear," says Weiss.

"I think where it gets really complicated is when you've got somebody that's in chronic pain and they wind up needing higher and higher doses, and you don't know if this is a sign that they're developing problems of addiction because something is really happening in their brain that's ... getting them more compulsively involved in taking the drug, or if their pain is getting worse because their disease is getting worse, or because they're developing tolerance to the painkiller," Weiss says.

"We know that drugs have risk, and what we're good at in medicine is recognizing risk and managing it, as long as we're willing to rise to that occasion," says Fishman. "The key is that one has to manage the risks."

3. Myth: Because most people don't get addicted to painkillers, I can use them as I please.

Reality: You need to use prescription painkillers (and any other drug) properly. It's not something patients should tinker with themselves.

"They definitely have an addiction potential," says Gharibo. His advice: Use prescription pain medicines as prescribed by your doctor and report your responses -- positive and negative -- to your doctor.

Gharibo also says that he doesn't encourage using opioids alone, but as part of a plan that also includes other treatment -- including other types of drugs, as well as physical therapy and psychotherapy, when needed.

Gharibo says he tells patients about drugs' risks and benefits, and if he thinks an opioid is appropriate for the patient, he prescribes it on a trial basis to see how the patient responds.

And although you may find that you need a higher dose, you shouldn't take matters into your own hands. Overdosing is a risk, so setting your dose isn't a do-it-yourself task.

"I think the escalation of the dosage is key," says Seppala. "If people find that they just keep adding to the dose, whether it's legitimate for pain or not, it's worth taking a look at what's going on, especially if they're not talking with the caregiver as they do that."

4. Myth: It's better to bear the pain than to risk addiction.

Reality: Under-treating pain can cause needless suffering. If you have pain, talk to your doctor about it, and if you're afraid about addiction, talk with them about that, too.

"People have a right to have their pain addressed," says Fishman. "When someone's in pain, there's no risk-free option, including doing nothing."

Fishman remembers a man who came to his emergency room with pain from prostate cancer that had spread throughout his body. "He was on no pain medicine at all," Fishman recalls.

Fishman wrote the man a prescription for morphine, and the next day, the man was out golfing. "But a week later, he was back in the emergency room with pain out of control," says Fishman. "He stopped taking his morphine because he thought anyone who took morphine for more than a week was an addict. And he was afraid that he was going to start robbing liquor stores and stealing lottery tickets. So these are very pervasive beliefs."

Weiss, who has seen her mother-in-law resist taking opioids to treat chronic pain, notes that some people suffer pain because they fear addiction, while others are too casual about using painkillers.

"We don't want to make people afraid of taking a medication that they need," says Weiss. "At the same time, we want people to take these drugs seriously."
5. Myth: All that matters is easing my pain.

Reality: Pain relief is key, but it's not the only goal.

5. Myth: All that matters is easing my pain. continued...

"We're focusing on functional restoration when we prescribe analgesics or any intervention to control the patient's pain," says Gharibo.

He explains that functional restoration means "being autonomous, being able to attend to their activities of daily living, as well as forming friendships and an appropriate social environment."

In other words, pain relief isn't enough.

"If there is pain reduction without improved function, that may not be sufficient to continue opioid pharmacotherapy," says Gharibo. "If we're faced with a situation where we continue to increase the doses and we're not getting any functional improvement, we're not just going to go up and up on the dose. We're going to change the plan."

6. Myth: I'm a strong person. I won't get addicted.

Reality: Addiction isn't about willpower, and it's not a moral failure. It's a chronic disease, and some people are genetically more vulnerable than others, notes Fishman.

"The main risk factor for addiction is genetic predisposition," Seppala agrees. "Do you have a family history of alcohol or addiction? Or do you have a history yourself and now you're in recovery from that? That genetic history would potentially place you at higher risk of addiction for any substance, and in particular, you should be careful using the opioids for any length of time."

Seppala says prescription painkiller abuse was "rare" when his career began, but is now second only to marijuana in terms of illicit use.

Exactly how many people are addicted to prescription painkillers isn't clear. But 1.7 million people age 12 and older in the U.S. abused or were addicted to pain relievers in 2007, according to government data.

And in a 2007 government survey, about 57% of people who reported taking pain relievers for "nonmedical" uses in the previous month said they'd gotten pain pills for free from someone they knew; only 18% said they'd gotten it from a doctor.

Don't share prescription pain pills and don't leave them somewhere that people could help themselves. "These are not something that you should hand out to your friends or relatives or leave around so that people can take a few from you without your even noticing it," says Weiss.
7. Myth: My doctor will steer me clear of addiction.
Reality: Doctors certainly don't want their patients to get addicted. But they may not have much training in addiction, or in pain management.

Most doctors don't get much training in either topic, says Seppala. "We've got a naive physician population providing pain care and not knowing much about addiction. That's a bad combination."
Fishman agrees and urges patients to educate themselves about their prescriptions and to work with their doctors. "The best relationships are the ones where you're partnering with your clinicians and exchanging ideas."

Intractable Pain Treatment Laws and Regulations (no replies)

mark.barletta@paincare.org — Sat, 19 Jun 2010 11:48:23 -0600

1995 Joranson DE, Intractable pain treatment laws and regulations. APS Bulletin 1995 5(2):1-3, 15-17.

Intractable Pain Treatment Laws and Regulations
David E Joranson, MSSW

Department editors' note: This first of two articles discusses current federal policy and new state laws regarding the use of opioids to treat people with intractable pain. The second article in the series will discuss state medical boards' recent progress in developing intractable pain treatment guidelines.

California
Colorado
Florida
New Jersey
Texas
Virginia
Washington

As demand for better pain management grows in the United States, the public is taking an interest in policies that govern the medical use of opioid analgesics for people with chronic pain. Although the use of opioids in acute and cancer pain is well accepted, their use in chronic noncancer pain has been considered widely to be inappropriate due to concerns about efficacy, toxicity, and addiction (Portenoy, 1990; Turk & Brody, 1991). Indeed, some state medical boards have used their disciplinary authority to reject or discourage the prescribing of opioids for chronic noncancer pain (Oregon Board of Medical Examiners, 1991; Washington State Medical Disciplinary Board, 1987).

However, the assumptions behind the belief that opioids should not be used for patients with chronic pain are undergoing a critical reappraisal in an effort to clarify patient selection and appropriate management strategies (Portenoy, 1994). At the same time, state governments have begun to adopt laws that specifically allow the use of opioids for the treatment of intractable pain.

Definitions
Intractable pain is a term that is used and defined in the federal controlled substances regulations and now in some state laws. The term generally refers to a pain state in which the cause cannot be removed or otherwise treated, and no relief or cure has been found after reasonable efforts (Code of Federal Regulations, 1988). It includes pain due to cancer as well as to other chronic diseases.

Intractable pain treatment policy refers to laws, regulations, or other government-issued policies and guidelines that address the legitimacy of the medical use of opioid analgesics to treat patients with intractable pain. These policies vary in the degree to which opioid treatment for intractable pain is accepted or rejected, and they may include specific restrictions and conditions. The focus of this article is federal and state laws and regulations, including the Federal Intractable Pain Regulation (1974); the state laws of Virginia (1988), Texas (1989), California (1990), Colorado (1992), Washington (1993), and Florida (1994); and the state regulation of New Jersey (1984).

Federal intractable pain policy
Federal regulations established in the early 1970s govern the prescribing of controlled substances (Code of Federal Regulations, 1988, Part 1300). As a general principle, the federal government does not regulate medical practice as this is a function of the states (Joranson, 1990). In 1974, however, Congress adopted a law to prohibit physicians from prescribing opioids to detoxify or maintain opioid addiction (unless they are operating as part of a separately registered narcotic treatment program). Subsequently, to clarify the critical distinctions between the treatment of opioid addiction and the use of opioids to treat pain, the Drug Enforcement Administration (DEA) issued a regulation in 1974 stating that the law was not intended to interfere with physicians who used opioids to treat intractable pain:

This section is not intended to impose any limitation on a physician or authorized hospital staff...to administer or dispense [including prescribe] narcotic drugs to persons with intractable pain in which no relief or cure is possible or none has been found after reasonable efforts. (Code of Federal Regulations, 1988, p. 72)

The DEA has reiterated and communicated this policy to U.S. physicians through its Physician's Manual (Drug Enforcement Administration, 1990) and its Pharmacist's Manual (Drug Enforcement Administration, 1986).

State intractable pain treatment policies
In addition to federal regulations, physicians' prescribing is subject to the law and regulations of each state, which sometimes are more restrictive than federal law (Joranson & Gilson, 1994). A physician's prescribing of controlled substances may be reviewed by a number of agencies, including state justice departments, triplicate prescription programs, professional licensing boards, and local law enforcement agencies. Typically, these agencies want to identify physicians who are prescribing outside of legitimate medical practice. Legitimate and illegitimate medical practices are usually defined in state medical practice law and by the regulations and enforcement policies of state medical boards. There are no state laws or regulations that consider the use of opioids for intractable pain to be an illegitimate practice.

Indeed, the model for state medical practice laws recommends that state legislatures define the practice of medicine to include the use of drugs to treat pain (Federation of State Medical Boards of the United States, 1988). Further, the model for state controlled substances laws specifically recommends that prescribing opioids for intractable pain be considered legal under state law (National Conference of Commissioners on Uniform State Laws, 1990).

Physicians, however, have been investigated and prosecuted for prescribing opioids for chronic pain (Angarola & Joranson, 1993; Joranson & Gilson, 1994). According to a 1991 survey, most of the members of state medical boards of the United States said they would discourage a physician from prescribing opioids for chronic noncancer pain, and approximately one-third of state medical board members said they would investigate the practice as a potential violation of law (Joranson, Cleeland, Weissman, & Gilson, 1992).

Although most state laws and regulations still do not specifically recognize the legality of opioids for intractable pain, this is changing. In the last several years, some legislatures have begun to adopt laws to affirm the use of controlled substances for intractable pain. Typically, legislators have been responding to (a) the undertreatment of patients with pain, (b) inappropriate medical board discipline of some physicians, and (c) proposed legalization of physician-assisted suicide. Media coverage of physician-assisted suicide and inadequate pain management as well as the efforts of patients and physicians who are advocating for legislative action to improve pain management are fueling state legislative interest in intractable pain treatment policy.

Washington
In the state of Washington, the use of opioids for intractable pain became an issue in 1987 when the Washington State Medical Disciplinary Board opposed prescribing opioids for chronic pain:

Many cases reviewed by the Washington State Medical Disciplinary Board involve inappropriate prescribing of controlled substances. A significant number of these are related to the use of narcotics as a method to manage chronic pain. During fiscal year 1987 the Board experienced nearly a 100% increase in disciplinary actions related to prescribing of controlled drugs for chronic pain. The Board does not recognize repeated prescribing of controlled drugs as appropriate therapy for chronic pain [italics added]. (p. 1)

The subsequent outcry from physicians resulted in additional policy statements in 1989 and 1992 explaining that the board had not wanted "to interfere with a physician's exercise of appropriate clinical judgment" (State of Washington Department of Health, 1989, p. 1), and that chronic pain is "best not treated with opiates" (State of Washington Department of Health, 1992, p. 1). Concern about the board's position continued, and in 1993, the state legislature enacted a statute that borrowed a provision from a recently developed model for state drug laws developed by medical and legal experts (National Conference of Commissioners on Uniform State Laws, 1990):

A practitioner may dispense or deliver a controlled substance to or for an individual or animal only for medical treatment or authorized research in the ordinary course of that practitioner's profession. Medical treatment includes dispensing or administering a narcotic drug for pain, including intractable pain. (Washington Uniform Controlled Substances Act, 1993)

Colorado
In 1992, the Colorado legislature adopted an intractable pain treatment policy as part of revisions to its controlled substances act. Colorado's approach is similar to that used in Washington state.

Virginia
In 1988, Virginia enacted a law allowing physicians to prescribe heroin for treatment of terminally ill cancer patients ("Virginia Enacts Law," 1988). (Note: This occurred despite the fact that legislation at the federal level was necessary to make heroin actually available and that Congress had already soundly defeated such a bill.) The Virginia legislature adopted an additional measure to allow prescription of pain medications "in excess of recommended dosage" for patients with intractable pain ("Relieving Intractable Pain," 1988, p. C5; Commonwealth of Virginia, 1988). Both laws exemplify how drug laws can reflect common misconceptions, that is, that heroin has significant analgesic advantages over currently available opioids, and that a physician's prescription cannot legally exceed the dosage recommended in FDA-approved product labeling (Angarola & Joranson, 1995).

Texas: The first intractable pain treatment act
The first intractable pain treatment act (IPTA) was approved by the Texas legislature in 1989 and has received considerable publicity (Hill, 1992). Physicians in Texas were concerned about board investigations of physicians and ambiguous language regarding opioid prescribing in the state's Medical Practice Act and went to the legislature for relief (Hill, 1992). The purposes of the new act were to clarify legal ambiguities, bring Texas law into conformity with the federal intractable pain regulation, and

assure that no Texan requiring narcotics for pain relief, for whatever reason, was denied them because of a physician's real or perceived fear that the state regulatory agency would take disciplinary measures against the physician for prescribing narcotics to relieve pain. (Hill, 1992, p. 70)

The Texas IPTA (a) provides a definition of intractable pain that is similar to that of the federal regulation, (b) autliorizes physicians to use controlled substances (not only opioids) for treatment of intractable pain, (c) prohibits healthcare facilities from restricting the use of such drugs for intractable pain, and (d) prohibits the Texas State Board of Medical Examiners from disciplining a physician for using such drugs in the legitimate treatment of intractable pain (Medical Practice Act of Texas, 1989).

The Texas IPTA also contains important exclusions. For example, the act does not protect a physician if the pain patient is also being treated for chemical dependency or when the physician should have known that the patient was using drugs in a nontherapeutic manner.

Several years after adoption of the IPTA, the Texas State Board of Medical Examiners issued a policy statement in its official newsletter that was drafted by a board member, C. Richard Stasney, MD, and by C. Stratton Hill, MD (1993). The statement endorsed the federal intractable pain regulation and the IPTA and stated that the board would use treatment outcome and not quantity or duration of prescribing as a standard for evaluating cases against doctors. In 1995, Hill, David Rallston, and colleagues are seeking further clarification of Texas policy and have submitted to the Board of Medical Examiners a proposed regulation for the treatment of intractable pain in Texas (C.S. Hill, personal communication).

New Jersey
The only state of which we are aware that currently has a regulation on intractable pain treatment is New Jersey. The regulation mirrors the federal intractable pain regulation in part. The New Jersey regulation, however, has several conditions that delimit the boundaries of intractable pain treatment:

When protracted prescribing [of narcotic drugs] is utilized for the alleviation of intractable pain, practitioners shall remain alert to the availability of new or alternative types of treatment. The practitioner should attempt periodically to either cease the medication or taper down the dosage, or try other medication or treatment modalities in a regular and vigilant effort to reduce the addiction propensity for the patient. (New Jersey Board of Medical Examiners, 1993, p. 64)

Regulations have the force of law, and compliance with specified conditions becomes the responsibility of the practicing physician. Indeed, failure to comply with such conditions might constitute a violation. Thus, a New Jersey physician who prescribes opioids for intractable pain should document compliance with the additional conditions in the patient's chart.

California
In 1990, California became the second state to adopt an IPTA due to the efforts of State Sen. Leroy Greene and Harvey Rose, MD. This legislation was the consequence of professional and public concerns about inadequate pain management, the harsh effects on patients, and physicians' concern about investigations by the state medical board. California's law is essentially identical to the Texas IPTA, although it requires evaluation of the patient by a specialist in addition to the attending physician (California Business and Professions Code, 1990).

The adoption of the California IPTA has also served as a catalyst for a number of governmental and professional actions to identify and remove barriers to pain management. For example, other new legislation required examination of alternatives to the triplicate prescription program, distribution of information on pain management and the California intractable pain treatment policy to all physicians by the medical board, and a medical board survey of state medical schools' curricula on pain management. In March 1994, the governor sponsored the Summit on Effective Pain Management: Removing Impediments to Appropriate Prescribing to prepare a strategy for a statewide effort to improve pain management (Angarola & Joranson, 1994; State of California Department of Consumer Affairs, 1994). The licensing and disciplinary boards for medicine, pharmacy, and nursing developed positive guidelines for the appropriate use of opioids in intractable pain. The American Pain Society Board of Directors endorsed the medical board's guidelines (correspondence of APS President J. Campbell to D. Arnett, Executive Director, California Medical Board, January 11, 1995; see page 20 of this newsletter for details). The State of California's actions to make pain management a priority are exemplary.

Florida
In 1994, following an intense debate on euthanasia and physician-assisted suicide, the Florida legislature instead approved an intractable pain treatment provision. Intractable pain is defined as "pain for which, in the generally accepted course of medical practice, the cause cannot be removed and otherwise treated" (Florida Statutes, 1994, p. 2). A licensed and qualified physician must diagnose intractable pain. The new provision permits use of any controlled substance in Schedules II-V, not only opioids, to treat a person with intractable pain, provided the physician conforms to a standard of care that would be recognized by reasonably prudent physicians under similar circumstances [italics added] (Florida Statutes). (One might ask what this means, given the prevalence of inadequate pain management and the history of discouragement of extended use of strong opioids for chronic noncancer pain.) Florida's intractable pain provision also recognizes that the state does not condone euthanasia and bans the use of intractable pain treatment for such a purpose.

Discussion
The development of intractable pain treatment laws gives much-needed recognition to the necessity for better treatment of intractable pain and can help to correct past policy, which discouraged any use of opioids. However, the opportunity to develop new legislation merits our careful consideration of both benefits and risks.

For example, could there be unintended consequences from making opioid therapy for intractable pain a "treatment of last resort"? Is it medically appropriate to require physicians to demonstrate that every chronic pain problem - whether due to terminal illness or any other chronic condition-is refractory to other therapies before prescribing opioid analgesics? How much time must elapse? How many therapies must be tried, and at what expense to the patient and the healthcare system? Although these questions should be answered by the physician and patient, they may also become legal questions once intractable pain treatment laws and regulations are enacted.

Are state intractable pain treatment laws really needed? Although the states have the power to regulate medical practice, the results can be unpredictable when state legislators and other interest groups start writing new laws, especially when the subject is drugs and medical practice - witness, for example, Virginia's approval of heroin in an effort to treat cancer pain. Moreover, after a new law is passed, a state agency may adopt regulations to codify, and perhaps restrict, the treatment of intractable pain, potentially leading to new issues. For example, if intractable pain regulations include conditions and restrictions, as in New Jersey, these may expand recordkeeping requirements and, thus, increase instead of decrease the potential for violations when controlled substances are prescribed for pain.

States do not now directly prohibit by law or regulation the use of opioids for intractable pain. If a state medical, pharmacy, or nursing board discourages the use of opioids for intractable pain, this is informal policy and it should be changed. Such a change can occur without legislation-for example, through a cooperative effort of regulatory boards and pain experts to develop and communicate new guidelines (Commonwealth of Massachusetts Board of Registration in Medicine, 1989; Medical Board of California, 1994).

If the voluntary development of positive guidelines by a board proves unsuccessful, political action, including lobbying for intractable pain treatment legislation, merits consideration. In Idaho, an intractable pain treatment act was introduced to protect physicians who prescribed opioids for intractable pain from the medical board. Although the bill was not adopted, the medical board has undertaken a review of its policy on prescribing for intractable pain (Idaho State Board of Medicine, 1994).

Which language should be used? The Texas and California IPTAs might be useful if the primary goal is to protect physicians from a medical board when, in fact, that threat exists or when the board is reluctant to clarify and communicate its policy. The Texas and California IPTAS, however, also appear to restrict prescribing of opioids to substance abusers, even if they have pain. The laws in Washington and Colorado do not exclude substance abusers and are consistent with the nationally approved model for drug control laws in the United States. On the other hand, they do not establish a legal protection for physicians from their medical boards.

Can legislation be an opportunity to initiate action? A new intractable pain law, by itself, probably will do little directly to change practice patterns or improve the management of patients' pain. In California, however, the legislative sponsor and key supporters of the new IPTA have served as powerful catalysts for other positive actions to improve pain management in the state.

In addition, either a legislature or a governor can establish a pain commission to study the problem and make recommendations for action. Study commissions can, however, also waste time and energy and actually delay real progress unless there is (a) strong support for implementation of the recommendations; (b) a clear mission focused on better and more cost-effective pain management; (c) willingness to identify and address common myths and barriers; (d) competent and adequate staff resources; and (e) a membership that is balanced, knowledgeable, and committed to the mission.

Conclusions
Long-held medical beliefs and regulatory traditions have rejected the use of opioids for chronic noncancer pain but are now undergoing reassessment in light of new knowledge, recent clinical experience, and the public attention being given to better pain management. The ultimate goal of a balanced public policy should be to harmonize medical and drug regulation with clinical practice so that physicians are free to use this treatment according to good medical judgment. This harmony can sometimes be promoted through laws and certainly through the development of medical, pharmacy, and nursing guidelines. Such guidelines should encourage pain management and help clinicians select and manage patients and avoid investigation. Guidelines should also continue sanctions against sloppy and unprofessional practices that can contribute to drug abuse. Such guidelines as those issued in Texas and California give medical boards unique opportunity to encourage quality care while at the same time allowing them to focus limited resources on cases in which there is harm to public health. (Note: The second article in this series will discuss state medical boards' development of intractable pain guidelines.)

As the development of intractable pain policy proceeds in the United States, we should take care not to oversimplify the complexity of chronic pain and its treatment. We should avoid creating the impression that all prescribing of opioids is appropriate or that any person with chronic pain has a right to opioids. We should also avoid creating the impression that new policies will correct deficits in practitioners' knowledge and attitudes.

The appropriate use of a range of therapeutic options, including nonpharmacologic treatments, opioids, and other drugs, depends on careful evaluation and monitoring of results by knowledgeable professionals supported by regulatory policy and practice. Opioids and other individual therapeutic modalities should neither be prescribed nor proscribed by laws, regulations, or policies.

Do the differences in today's state intractable pain laws and regulations suggest we are moving toward a balkanized approach to the use of opioids for chronic pain? How can we uniformly raise the quality of pain care if policies differ from state to state? The quality of intractable pain treatment policy at the state level would benefit from a dialogue aimed at acheiving consensus among healthcare professional, regulatory, and patient interests in the United States. One aim of such a dialogue should be to achieve reasonable uniformity of policy among the states; another would be to address the needs of individual patients who have fallen through the cracks. The author would appreciate having readers' perspectives and any additional information about state policies.

Acknowledgments
The author gratefully acknowledges comments on the manuscript from Albert M. Brady, June L. Dahl, Kathleen M. Foley, Aaron M. Gilson, John D. Loeser, William L. Marcus, Russell K. Portenoy, Harvey L. Rose, and Joel R. Saper.

David Joranson is associate director for policy studies with the Pain Research Group at the University of Wisconsin Medical School in Madison, WI.
References
Angarola, R.T., & Joranson, D.E. (1993). More federal drug control initiatives: Are they warranted? Will they consider the patient? APS Bulletin, 3(2), 1-9.

Angarola, R.T., & Joranson, D.E. (1994). California sponsors pain summit; Maryland fends off new regulations. APS Bulletin, 4(3), 11-12.

Angarola, R.T., & Joranson, D.E. (1995). Off-label uses of prescription drugs in pain management. APS Bulletin, 5(l), 14-15.

California Business and Professions Code. (1990). Chapter 1588, § 2241.5(b).

Code of Federal Regulations. (1988). Title 21, § 1306.07(c).

Commonwealth of Massachusetts Board of Registration in Medicine. (1989, August). Prescribing practices policy and guidelines. Boston: Massachusetts Secretary of State.

Commonwealth of Virginia. (1988). Virginia Drug Control Act. Chapter 34, Article 1, § 54.1-3408.1

Drug Enforcement Administration. (1986). Pharmacist's manual: An informational outline of the Controlled Substances Act of 1970. Washington, DC: U.S. Department of Justice.

Drug Enforcement Administration. (1990). Physician's manual: An informational outline of the Controlled Substances Act of 1970. Washington, DC: U.S. Department of Justice.

Federation of State Medical Boards of the United States. (1988). A guide to the essential of a modern medical practice act (5th ed.). Fort Worth, TX: Federation of State Medical Boards.

Florida Statutes. (1994). Chapter 94-96, § 458.326(l), 458.326(3).

Hill, C.S. (1992). The intractable pain treatment act of Texas. Texas Medicine, 88(3), 70-72.

Idaho State Board of Medicine. (1994, December). Draft guidelines: Prescribing opioids for chronic pain. Boise, ID: Author.

Joranson, D.E. (1990). Federal and state regulation of opioids. Journal of Pain and Symptom Management, 5, S12-S23.

Joranson, D.E., Cleeland, C.S., Weissman, D.E., & Gilson, A.M. (1992). Opioids for chronic cancer and non-cancer pain: A survey of state medical board members. Federation Bulletin: The Journal of Medical Licensure and Discipline, 79(4), 15-49.

Joranson, D.E., & Gilson, A.M. (1994). Controlled substances, medical practice, and the law. In H.I. Schwartz (Ed.), Psychiatric practice under fire: The influence of governments, the media, and special interests on somatic therapy (pp. 172-194). Washington, DC: American Psychiatric Association Press.

Medical Board of California. (1994, October). New, easy guidelines on prescribing. Action Report, 51, 1, 8. Medical Practice Act of Texas. (1989). § V, Article 4495c.

National Conference of Commissioners on Uniform State Laws. (1990, July). Uniform Controlled Substances Act. Milwaukee: Author.

New Jersey Board of Medical Examiners. (1993). § 13:35-6.6(g), Division of Consumer Affairs, New Jersey Department of Law and Public Safety. Trenton, NJ: Author

Oregon Board of Medical Examiners. (1991, May). Statement of philosophy: Appropriate prescribing of controlled substances. Salem, OR: Author.

Portenoy, R.K. (1990). Chronic opioid therapy in nonmalignant pain. Journal of Pain and Symptom Management, 5(l), S46-S62.

Portenoy, R.K. (1994). Opioid therapy for chronic nonmalignant pain: Current Status. In H.L. Fields & J.C. Liebeskind (Eds.), Progress in pain research and management. Vol. 1. Pharmacological approaches to the treatment of chronic pain: New concepts and critical issues (pp. 247-287). Seattle: IASP Publications.

Relieving intractable pain. (1988, April 4). The Washington Post, p. C5.

Stasney, C.R., & Hill, C.S. (1993). Pain control and the Texas State Board of Medical Examiners. Texas State Board of Medical Examiners Newsletter, 15(l), 1.

State of California Department of Consumer Affairs. (1994, March). Summit on effective pain management: Removing impediments to appropriate prescribing. Sacramento, CA: Author.

State of Washington Department of Health. (1989, August). Policy statement. Seattle: Author.

State of Washington Department of Health. (1992, April). Policy statement. Seattle: Author.

Turk, D.C., & Brody, M.C. (1991). Chronic opioid therapy for persistent noncancer pain: Panacea or oxymoron? APS Bulletin, 1(1), 1-7.

Virginia enacts law approving palliative heroin use. (1988, April 25). Hospice Forum, p. 1.

Washington State Medical Disciplinary Board. (1987, September). Bulletin to physicians. Seattle: Department of Health.

Washington Uniform Controlled Substances Act. (1993). Revised Code of Washington. Article III, § 69.50.308(g).

How to Correct Errors in your Medical Records (no replies)

mark.barletta@paincare.org — Thu, 17 Jun 2010 17:29:46 -0600

For everyone that has mistakes in thier Medical Records , now you can have them corrected by going to this website.

(http://patients.about.com/od/yourmedicalrecords/a/howtocorrect.htm)

How to Correct Errors in your Medical Records
These Mistakes Can Affect Your Healthcare and Outcomes
By Trisha Torrey, About.com Guide
Updated April 09, 2009

By law, you have the right to correct most errors you find in your medical records. Those corrections are referred to in the law as "amendments." The records themselves are called a "designated record set."

Once you have obtained, then reviewed your medical records and have found an error, you'll want to follow this procedure:

1. Determine exactly what the error is and whether it needs correcting. Sometimes errors are simply typographical and may or may not require correction. However, any piece of information that will have an effect on your diagnosis, treatment, or ability to be contacted, whether it can affect you or your health today or in the future, should be corrected. Further, problems with medical identity theft are on the rise, so information that regards payment, billing or your personal identity should be corrected.

Here are some examples:

•If any medical test results, symptoms or treatment decisions are recorded incorrectly, they should be corrected immediately. Your care and future health could hinge on their accuracy.

•If your phone number is incorrect, you'll want to make sure it gets corrected immediately. Failure to do so will result in the wrong information being replicated.

Mark Barletta

The Drummer Boy (2 replies)

mark.barletta@paincare.org — Wed, 11 Aug 2010 20:28:03 -0600

Lets say the Drummer Boy is your pain and the harder he beats the worse your pain gets.

You go to a doctor because you have this pain you never had before and the Drummer Boy beats on.You tell the doctor I have this pain I never had before ,he looks at you and write away red flags start to go up.The word pain could mean any number of things wrong with the body.
You ask yourself why now ,why all of a sudden your body went from being just fine to this never ending pain and the Drummer Boy beats on.
The doctor says well we need X-rays ,maybe a MRI ,you think in the back of your mind how will I pay for this.
But for you to get anywhere you must have the MRI done and Drummer Boy beats a little harder.

A week goes by and the pain seems to increase,your MRI is scheduled in a week ,meantime the pain seems to really get irritating. And that Drummer Boy is steady Beating that Drum.
You wake up go to work all along the pain makes you believe something could really be wrong, you think to yourself if my work finds out I'm having pain problems they just might find a reason to get rid of me, lay offs are on the rise the economy is bad, how will I pay my bills.
Then you start to worry adding to the nagging pain you already have and all along the Drummer Boy keeps beating that drum.,driving you up the wall.

Finally the day comes for your MRI .Your put in this big machine that seems large until you get in it ,then it really gets really small. The test start and you hear this noise thump,thump,thump,that damn Drummer Boy followed you to your MRI. He is really getting on your nerves now.
This MRI ends and they take you out of this large but small machine.

A week goes by and the phone rings,the nurse said you need to come in to see the doctor, you ask what did they find but the nurse can not talk about it, she is not allowed to tell you anything on the phone ,you hang up and wonder ,what could it be now.
And my gosh that little Drummer Boy is steady beating that Drum and its really starting to get on your nerves, the pain is twice as bad as it was and you cant sleep at night. The constant chronic pain is wearing you down.

You finally see the doctor and he reads the Radiology report. You have no idea what he is talking about because you never heard these words,narrowing of the spinal canal,spinal stenosis,root sleeve problems.,disc protrusion. And by the way the Drummer Boy keeps beating that drum and you cant hear a word the doctor is saying, you forget everything he just said ,you start to get hot then cold and your nerves are on edge.The doctor says well we need to do some injections for the pain ,you follow along because all you want is the pain to end.

He schedules you for some epidural injections,you need to go back in a week.The doctor prescribes some ibuprofen, something you can buy from the grocery store.Gee thanks doc,you go to the closest pharmacy have it filled and it makes you sick to your stomach adding to the problem you already have .And lets not forget about that Drummer Boy is steady beating that drum harder each day.

The day comes that you go for these injections, thinking all along they will finally help you with your pain.You lay down and the doctor comes at you with this rather large needle ,you close your eyes and say I just need to get past this.After the injections you think the pain will go away but the doctor tells you it can take up to a few days for the pain to let up.
On the way out the nurse hands you a prescription for vicoden, finally you get something for your pain. The Drummer Boy keeps beating that drum.
You get home and read the label on the vicoden and it says take 1-2 every 4 to 6 hours for pain, you immediately take 2 and thirty minutes later the pain lets up some finally the Drummer Boy takes a break but not for long 3 hours later the Drummer Boy starts to beat away again.
By then your drained,your day was full of not knowing and you get in bed and you cant sleep so you just stare at the ceiling.

The next day you wake up and the pain is unbearable,so bad you cant make it to work,so thats two days you have missed and your boss is really angry.You start to worry that you don't get caught up in the lay offs getting ready to come up, but your a prime candidate to lose your job, you have this Drummer Boy beating away at this drum and its affecting your job performance.
Seven days go by the injections you had never did any good ,if anything it made your pain worse so all you really did was trade these injections for more pain and 30 vicoden. By the way the vicoden are almost gone and the pain is just as bad as it was before, if not worse.

You make a follow up appointment with the doctor that did the injections and all he has to say is you need to go to a Pain Specialist because your pain is Chronic in nature and Intractable,there is nothing more he can do.You go to this so called Pain Specialist only to find out your pain is not going to ever go away, that Drummer Boy is still at your side beating away.

The next thing you know 10 years have gone by, no one told you your life would end up like this ,you have lost your job and your on disability. You have come to the conclusion that Drummer Boy will always be by your side , nothing will ever change, your this person that suffers from never ending Chronic pain.You pray nothing will ever happen to your doctor,he is the only person that has compassion for you and your never ending pain.

We lost the better part of everything we worked for, family ,friends.
We do the best we can, we don't give up,we fight, we do whatever it is necessary to get by, we are strong, we survived 10 years of Chronic Intractable pain.We don't know what the future holds for us ,we only wish for the best .And we finally get along with the Drummer Boy, you accept him in to your life, after all he once tried tried to drive us nuts. He is down to just tapping on that drum but never goes away.We made it this long ,we can make it a little longer. Our life did not turn out like we wanted it to, but what can we do, its our life.

I have decided Chronic pain will not rule my life, only I can do that. I work around my pain and make the best of things, after all we are good people and we have each other to lean on.

Mark Barletta

Assessment of Pain (15 replies)

mark.barletta@paincare.org — Wed, 16 Jun 2010 12:15:20 -0600

One of the main problems in assessing patients with chronic pain is that the physical examination and laboratory tests often do not provide the information necessary to gauge severity and assess outcomes. Various survey instruments and visual analogue scales that allow precise measurements of pain are available but used only rarely. Pain is generally assessed indirectly, which why it is so important to listen to--and believe--patients when they say that they are in pain.

Some physicians apparently have difficulty with that. Many patients with chronic pain have been refused treatment by previous caregivers who apparently believed that their pain was not real. Even after undergoing painful procedures and surgeries that failed to bring relief, some of these patients were labeled as drug-seekers when they continued to ask for help. They had to contend not only with the pain but also with feelings of frustration, isolation, and abandonment by those on whom they had most relied.

In some cases, physicians may be well informed about pain mechanisms but lack an organized approach to the individual assessment of pain. A comprehensive evaluation of patients with chronic pain syndromes can be time-consuming and often requires more data than can be obtained in a few brief clinic visits. I have found the following operational format to be particularly useful, both in gauging the severity of pain and in determining the degree of disability:

1) The patient's perception. Asking the patient to keep a pain diary that includes numerical scales can help to objectify the pain. If it is understood that the physician will review the diary carefully, the patient will not have to act out a month's worth of pain at every appointment. The diary can also be an important aid in identifying exacerbating or ameliorating factors and developing more effective strategies to cope with the pain such as behavioral changes or the preemptive use of analgesics in certain situations.

2) The patient's emotional state and somatic preoccupation. This relates to the degree to which the patient remains focused on bodily symptoms to the exclusion of other issues and often can be best assessed by interviewing a close family member.

3) Functional status at home. The first things that many patients in pain stop doing are usually non-work-related activities such as going out with family and friends, attending church, or engaging in hobbies. Some patients continue to report pain or discomfort even though their condition has improved. By keeping track of daily activities, both patient and physician have some measure of how disabling the pain actually is.

4) Functional status at work. The number of work days missed and the specific work activities curtailed because of pain are also useful indices of pain severity. Since these variables can be expected to change with analgesic treatment, they provide a way to gauge the patient's response to different therapies.

5) Use of analgesic medications. If the patient is given an adequate supply of effective short-acting rescue medications and told to take them as needed, the number consumed can be a measure of pain. It can also be a way to assess whether the patient is benefiting from other medications or nonpharmacologic treatments. The physician should make it plain that the other treatments are not designed to get the patient to stop using the pain medication but to stop needing it.

Benjamin Rush

RSD is called Causalgia, the first name given to RSD in 1865, its latin for: burning pain (7 replies)

mark.barletta@paincare.org — Fri, 04 Jun 2010 19:20:49 -0600

Dear Loved Ones;

This letter was written by,
Keith Orsini

The other day a friend of mine asked me if I would share with her loved ones the experience of being an RSD patient; what we go through on a daily basis, the struggles we face, and the importance of medications and therapy in our lives. I thought the best way to do this was to share what a typical day in the life of an RSD patient was like.

I myself have had RSD since 1974, over thirty years now. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, and Fibromyalgia so Chronic Pain (CP) and I are old friends. I first developed RSD when I was 14 years old. Over the last 30+ years I have talked to tens of thousands of RSD and other CP patients of all ages and we all experience pretty much the same things with some minor differences.

As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don't take this letter as mean-spirited in any way. I know some of it may be hard to read, to actually see some of the words in print, but it is not an attack. Your loved ones just want their voices heard.

Over the years I have actually had people tell me, "Gee, it must be nice to not have to work and just sit home all day". If I thought they were really interested in a reply to that ridiculous statement I would tell them that having RSD and/or other CP Diseases, however severely you have it, is much more work than any full-time job! Plus, we donâ��t get to call in sick, get vacation days, and our work day is 24 hours long, 7 days a week!

Now understand that quite a few RSD patients (also known as RSDers) and CP patients have other diseases as well as RSD, such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb while for others it is more. Some have less movement while others have quite a bit. Some take only a few medications and some take quite a lot.

I myself have taken over 20 pills a day(not different ones, but altogether). Contrary to some people's opinions taking a pile of medications does not make us ""druggies". A "druggie" is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who probably cannot fathom someone who takes narcotics for "fun and/or recreationâ��!

There are patients who use different types of machines, have Spinal Column Stimulators, or Pumps installed in their bodies in an attempt to reduce their pain. Some deal with the wheelchair issue as well. Most patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, or massage, to help them continue to be able to do the basics things like walking and using their hands, feet, and arms.

First, letâ��s start with the sleep patterns, or lack-of-sleep patterns to be more accurate. Unlike "normal" people, CP patients are prone to insomnia and do not reach REM sleep; this is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is often physically painful to actually get up and out of bed. So, why don't we sleep?

It is because RSD cause changes to the Limbic System of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.

(There is a special article on sleep and the problems RSDers have with it in this section) RSD AND SLEEP

We start our day with medications of course. The first of many such times per day. To "look fine" we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea, constipation, headaches, and many others. Many of us also have to fight the "Dry-Eye Syndrome" and must use eye drops two or more times per day.

Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. They simply allow us to function.

Then many of us head to Physical Therapy such as pool exercise, range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.

These aren't luxuries but necessities for those of us who can physically handle them. There can be month's, even years, when the allodynia is too high to do even these simple things. (Allodynia is when even the lightest touches or sounds cause extreme pain.) Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain to an RSD patient, but trust me, they can and do. Some people can even have a slight breeze cause them excrutiating pain.

I know what you are thinking, â��that is crazyâ��. No. That is RSD. If you think itâ��s crazy, and I am telling you from a knowledge background, think how a patient who knows nothing about the disease feels when they start forgetting things, especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain to the patient it will bring tears to their eyes. Think of the confusion and terror that brings into their lives.

And when their friend and loved ones sit there, make fun of them and disbelieve them when they try to explain how it causes pain, well, that hurts them even more. When a disconnected Doctor doesn't believe you that is bad enough but when a loved one doesn't believe you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS. That isn't just from a patient or an advocate, it is documented. RSD pain is ranked higher than any other form of chronic pain known today.

TO THE FAMILY'S AND FRIENDS, Conclusion

The bottom line here and the points I have tried to get across are that;

* When you suffer from chronic pain, ou have to constantly think about how, whatever you are going to do that day, will affect your disease and your pain level.
* Being in chronic pain is a full-time job.
* One with no vacations, terrible benefits, and no way to quit.
* RSD is the most painful form of chronic pain that exists today.
* Chronic pain affects the entire family, not just the patient.
* Chronic pain is an invisible disability. Even other pain patients will sometimes forget that they cannot see YOUR pain and make assumptions based on what they can visibily see.
* A chronic pain patient may have a good hour or even many good hours a day where they can "appear normal" to everyone else but most don't realize the price that is paid before and after.
* The positive involvement of their loved ones means the world to the chronic pain patient.

I am still surprised at the number of fellow pain patients who forget that not everyone with RSD, and/or other forms of chronic pain, shows outward signs of it ALL the time so it is understandable when our loved ones forget. Never assume you know someone else's whole story at a glance.

Over the past three decades plus with this disease, I have spent a few years being stuck in bed unable to walk, I spent over a year being confined to a wheelchair and having to learn how to walk again. That was the second time in my life I have had to do that, despite being told by Drs that I may not ever be able to walk again. Good thing I am stubborn.

I remember one year where the only time I was able to leave my room was to go to physical therapy five days a week. I have spent many years having to use a cane to go even ten feet and despite this, I still have people who don't know anything about my past struggles, even some who are fellow RSD patients, email me and tell me I have no idea what it is like to be stuck in a chair or be unable to walk! That I don't have it as tough as they do.

I am blessed in that currently,(2005) I am doing better than many other years. That doesn't mean I am "cured". I take my 15 pills a day. I have to do my physical therapy every day. I have to walk every day. Nearly every afternoon is spent having to lie down because of exhaustion, partly due to the RSD and partly due to the Fibromyalgia, in combination with the medications. But I am not complaining. I have been much worse in my life and I never forget it for a minute.

But NEVER compare your pain to someone else's. It is a lose-lose situation. It hurts you both. Instead encourage one another and support your fellow pain patients! We all deal with pain in different ways and we all have different levels of tolerance.

Our medications, our therapies, and our friends are what get us through each day. The value of none of these things can be minimalized. Not just for the physiological changes that they bring to our body but for the psychological ones as well. That doesn't mean our lives end, they just change. And RSD/CP patients require tools to make those changes possible. Tools that include medication, various therapies, exercise, diet changes, and lots of familial support. You can be a positive part of it or you can be a hindrance, it is totally up to you.

Now some may view this as being obsessed with the disease, that we think of nothing else but our disease, our pain, that we are too focused on it and that is why we are so depressed, so sad, we hurt so much. Gee, you mean if I didnï¿½t think about it so much I wouldnï¿½t hurt so much? Hmm, let me give that a try. No, seriously, the fact is that for us, RSD/CP is a major part of our life. It has to be factored into every decision we make, if it isn't we will pay for it later, as will our loved ones.

My family and I often worry that our friends will get tired of our talking about CP too often. After all, not only have I had it for years but most of our family is involved in running this organization and getting the word out about this disease. Many times we have to force ourselves to take a break from RSD talk for a day.

But then we think it is no different than if we had cancer, MS, or MD, (which some of us have). People are just used to hearing those words more. Yes, we will lose friends along the way, that is inevitable But we will also gain some new wonderfully supportive friends and they will be amazing, true friends who will be in it for the long haul.

I cannot tell you all the incredible people from all over the world I have met in our journey, with whom I have become fast friends. Some I see often and some I see only at our National Conferences on Pain yet it is as if I saw them just yesterday; many I talk to only on-line and I know them best of all. These are amazing people who have overcome obstacles you wouldnï¿½t believe and yet still come out on top. And you know what? They could care less that I have RSD.

So now that YOU know what it is all about ... which type of friend are you?

I hope this has helped you better understand a day in the life of an RSD/CP patient and that you didn't take it as a slap in the face or something hurled at you but as a teaching tool. Sometimes we have to be forced to confront things in our lives in a harsh manner in order to accept that they are real; both the patient and the loved one in the case of the chronic pain patient. Thanks for listening.

Peace, Keith Orsini
American RSDHope

On behalf of Chronic Pain patients everywhere, thank you for taking the time to read this.

It means a great deal to them that you would take the time to do this and just because they asked you to read this does not always mean they feel they have a problem with you necessarily, they just wanted you to have a better idea about what they have to deal with. They NEED you in their life; they WANT you beside them in this struggle. They know they can do it; they can beat this with YOUR help.
PS: For more information on Chronic Pain, please visit AMERICAN RSDHOPE This link leads to a website that is not part of RSDHope

copyright March/2005-2008

Please feel free to share this article with others, we just ask that you respect and include the copyright and author information.

American RSDHope

Tramadol Warnings from FDA (2 replies)

mark.barletta@paincare.org — Wed, 02 Jun 2010 17:36:38 -0600

Tramadol Warnings from FDA

May 26 2010 12:00AM

May 26, 2010 — The US Food and Drug Administration (FDA) announced yesterday that it has added a warning of suicide risk to the labels of tramadol hydrochloride (Ultram) and tramadol hydrochloride/acetaminophen (Ultracet).
The revised labels instruct clinicians not to prescribe tramadol to patients who are suicidal or addiction-prone, and to exercise caution in prescribing the medications to patients who use alcohol excessively, suffer from emotional disturbance or depression, or take tranquilizers or antidepressants.

"Tramadol-related deaths have occurred in patients with previous histories of emotional disturbances or suicidal ideation or attempts as well as histories of misuse of tranquilizers, alcohol, or other [central nervous system–active] drugs," stated letters sent to healthcare professionals by the FDA and PriCara, the maker of the 2 medications and a division of Ortho-McNeil-Janssen Pharmaceuticals.

The letters, 1 for each medication, noted that tramadol, an opioid, can intensify the effects of other opioids as well as alcohol and illicit drugs that depress the central nervous system.

The letters also warned that people with addiction disorders may seek out tramadol and cited the risk of criminal diversion. However, "concerns about abuse, addiction, and diversion should not prevent the proper management of pain," the letters stated.

More information on the FDA announcement is available on the agency's Web site.

To report adverse events related to the 2 pain medications, contact MedWatch by telephone at 1-800-FDA-1088, by fax at 1-800-FDA-0178, online at [www.fda.gov], or by mail to 5600 Fishers Lane, Rockville, Maryland 20852-9787.

Would Cannabis be Helpful for your pain? (2 replies)

Brooklynnite — Wed, 26 May 2010 09:11:28 -0600

I hope this is a proper topic for discussion. I am an advocate for Cannabis Sativa and it's legalization. Due to the Chiari Malformation which I was surprisingly and suddenly was born with, I found it helpful with the head pressure, nausea and vomiting. And of course, it helps with certain types of pain. It will relax muscle spasms and get that appetitie stimulated. It can get one motivated to get out of bed in spite of the pain.....helping with a depressive state of mind.

Is anyone in agreement with this as a medicine along with narcotics or alone ? It is my personal understanding that the tobacco but especially the pharmacuetical industry don't want this to happen. WHY? Well, because many of their harmful medications would not be needed. And one would have to look at cigarettes as being the real gateway and addictive / harmful drug.

Look how the pharmaceutical company tried to replicate it in the lab....Marinol. I hear this is no where near the real thing. But with them, it's all about making money $$$$.

So, what do you all think?

Pharmacology DNA allergic to MEDS (3 replies)

travelor — Tue, 25 May 2010 12:54:17 -0600

IT has now been since Jan 2006, via then Medic-Alert I did a drug DNA testing on SSRI and SRNI drugs and other that were capable of being tested at that time. Many more can be test currently! Not only do I have whole body RSD/CRPS but was not being believed about the pain after about a year do to taking elavil and many other older drugs for depression which do help pain for many patients, in addition went through a serious for many years. I felt like brain wash and I am very smart and mentally very strong.
As the half-life made its way out of the fat cells in the body and mind I could literally feel a fog lifting out of the brain. If I had not written things in a calendar or journal per se I would recall almost nothing for ten years. the route memory muscle memory things like driving can and could do. if asked things outside norm very easy to talk me into doing unless say already outside ones moral ethical views.

being labeled "crazy" and having severe pain is almost impossible if not impossible to get rid of let alone does not do me any favor.

currently , fortunately have a pain doc who was in the military when he was 18-20 during draft then used GI bill for education and 15 years went back to school for MD and pain specialist from day one! he later volunteered as a reservist medical corps. he has been wonderful esp having known a few military pain doctors who have treated me and never once looked at me as being crazy or having to explain self! True , only have seen him a few time before he was called again to IRAQ for duty but he is doing a wonderful job teaching the physicians there new and latest treatment for and against prolonged pain to other vets so they do not have to go through the many cr@p things I have via the military and especially the VA who lie through their teeth to everyone including US Senators and US Representatives. Only one ER Dr @ the VA where I currently live understands pain completely and is willing to treat me accordingly.

The VA here has had directors , one retired the other "moved up to Washington DC" (oh great more liars in the location) at the top in the region and locally sign letters stating that they have " certified pain MD's " when in fact on basic and complete research the MD has no license to practice the type of fields or procedures more so and has actually caused more damage to other veterans on doing procedures not properly trained!

Be aware like people who cannot take penicillin there are others who can not take many or all SSRI's or SRNI's!

Inaccurate Urine Screens (6 replies)

Brooklynnite — Tue, 25 May 2010 08:48:49 -0600

Now that I have found a courageous and compassionate PCP, and after he's had the opportunity to review other records (those misleading lies) he has chosen to take urine screens when I have an appointment. Believe me, after what I've been through I don't mind. The first urine screen came back with only one of the drugs as a positive the valium, but the Hydromorphone was not present. We were both perplexed. Anyway, the doctor actually stated and I quote..."sometimes those labs make mistakes". I was speechless to hear a doctor admit that mistakes can be made with laboratories. So I had to take another one. But what scares me is, he states that if it comes back without being positive again, he cannot prescribe to me. The nurse and I talked afterwards and she called the lab. Seems this happened to another patient.

Has this happened to anyone else?

Let me also add....I would rather it come back without the meds I am taking, than to come back with meds I should not be taking. For instance, I know I'm not using marijuana or cocaine. But if it came back positive, most likely I would immediately be dismissed.

New direction of ONDCP and drug czar! (1 reply)

mlang52 — Thu, 13 May 2010 09:41:22 -0600

I just was reading on the new policy of the Obama administration. It includes the statement that the government is going to crack down more on doctors who "over-prescribe". I am so glad they have the wherewithal to be able to determine the proper treatment of a patient, whom they have never met or evaluated. The medical board would take doctor's license away for treating a patient without an evaluation! (I really don't now how you decide to treat something without evaluating the problem!)

Just another lack of change by the Obama administration! Looks just like the Bush presidency, in so many ways!

How is that for "change" guys!

opiophobia is killing me slowly? (8 replies)

bear72 — Fri, 02 Jul 2010 18:08:05 -0600

Hello there,

I am so glad to find this site. I cannot adequately express how much pain and distress I have endured searching and searching for an oasis of sensibility and insight regarding chronic pain treatment. So here is my scene:

Dx 15 yrs ago w/Diabetes Type 1

Dx 12 years ago w/PTSD and Panic Disorder and Depression

1.5 years ago I began to develop moderate to severe pain in lower right quadrant of back - just around the kidney, gallbladder area

Began treating pain with hydrocodone 10/325 (Rx from PCP)

Referred to Urologist:
x-Ray, CT Scan, Ultrasound - all results normal

Referred to to Gi specialist.
Upper Endoscopy, HIDA Scan - all results normal

Rx Dicyclomine PRN

Continued with Dicyclomine and Hydrocodone PRN until mid-February 2010. Then things started to get REALLY bad.

Enter chronic nausea, vomiting, diarrhea, constipation, and severe abdominal distension - the pain now included just below my rib-cage in my abdomen and burning down near my navel. By now I am having to take up to 30mg Hydrocodone every 4-6 hours which only provided moderate relief from pain. I imagine I'd developed somewhat of a tolerance to the pain medication.

Around this time I also discontinued taking Tramadol 400mg prescribed for depression: the side effects and horror stories i'd read online began to cause me serious concern about the dangers of this horrible drug. I'd been taking Tramadol for almost 12 months prior to discontinuing.

So, after a few weeks of reporting my increasingly horrendous symptom developments to my PCP, I was referred to another GI specialist. By now I was having to take liquid hydrocodone because i couldn't keep anything down long enough for it to get into my system. Once I went to GI specialist, I was told I likely was suffering from Gastroparesis. The GI prescribed Erythromycin, Amatiza, Prilosec and Zofran. Also wrote a prescription for more liquid pain medication. He indicated that he wanted to see how things go for a week, while he was out of town. A gastric emptying study was scheduled which came back normal. (on a side note, it is odd the gastric emptying study was ordered while i was taking Erythromycin, a known motility agonist, which interestingly didn't mitigate my symptoms anyway)

After getting the Rx filled, I realized that he'd written the liquid pain medication half the strength and half the dosage. I immediately realized I was in serious trouble. Because I am a Medicare recipient (I am on disability for Panic Disorder) I found that my insurance required a doctor's authorization to approve the Zofran coverage. I immediately contacted the doctor's nurse to request the required Zofran authorization process (this was a Monday). On the phone with the nurse I asked about what seemed like a mix-up regarding the pain med, she informed me the doctor wanted to reduce the pain meds. No explanation. I had already almost gone through all of the liquid (I think it was 210ml 1tsp bid) and was already experiencing further increased symptoms. Now I had constant distended abdomen, almost constant pain and nausea - basically stayed in bed 24 hours a day.

After finishing the last of the liquid pain meds mid- Monday, I went through Monday night in excruciating pain, vomiting and diarrhea. I called the nurse and waited 2 days for her to return my call. Then I explained that I realized that the prescription was essentially 1/2 of what I was taking before my appointment with the doctor, which was not treating the pain to begin with, and was now having to rely on 1/2 of that strength and 1/2 dosage. An absurd situation. I politely told the nurse I desperately needed the Zofran authorization called in and needed more pain meds. She tersely said that she would not be able to call in more pain meds and would get to the Zofran as soon as she could. I pleaded and told her my symptoms had become much worse and asked if I could be seen by another doctor in the group. She said no.

At this point I was having severe anxiety over the whole situation and called my PCP to explain the predicament. Wednesday morning he called in 20 Hydrocodone 10/325 and said to follow-up with GI specialist on monday upon his return from being out of town. This essentially left me in bed writing in pain 24 hours a day for almost a week. I called each day to ask the nurse if she'd followed up on the Zofran, to which she replied that she'd "try and get to it."

Monday appt with GI. He is markedly disengaged and stoic. I explain how worried, upset and scared i was given the past week's circumstances, and the normal results form the test. He was non-plussed and didn't even look up from writing notes whatsoever during my 10 minute appt. he said he'd like to order upper endoscopy and flexible sigmoidoscopy.

His orders were to continue with the other meds, he wouldn't be able to write any more pain meds and he felt things would get better in a week or two. I was literally sitting there in the exam room in pain and crying, feeling completely abandoned and somehow felt like I had done something wrong. His nurse had still not resolved thee Zofran situation. I was so angry, I had a major panic attack once I got on the elevator and was in so much pain I drove straight to my PCP's office.

During the previous week, I'd done quite a bit of research about meds, symptoms and better GI specialist options in my area. On the way to my PCP's office, I called another GI specialist and begged them to get me in the next day. My PCP wrote me RX for 10 Hydrocodone 10/325 and said h wouldn't be able to help me any more and was only doing this because he agreed that i'd been treated poorly. I've been seeing him for 10 years and I was really disappointed in his response as well by now.

I was starting to feel like I was being treated dismissively from everyone. Even my PCP whom I'd always been able to rely upon for support and no nonsense treatment.

Next GI appt, sat with Dr and explained symptoms, she proceeded to tell me that i really shouldn't be in such pain, after all she sees IBS patients every day and doesn't see such level of pain. she very clearly stated she treats pain with NSAIDS strictly. She scheduled the tests I'd cancelled that were ordered by the previous Dr - upper endoscopy, sigmoidoscopy etc. I left there feeling even more discouraged and lost and afraid. Feeling entirely abandoned and dismissed.

By this time, my husband had done further research to find the best GI in town we could find. We set an appt immediately and got in to see her. this appt was much better, in that the Dr seemed to get the idea of actually engaging with the patient and showing empathy and support. she treats IBS with either Lyrica or Tramadol. She said in light of the severe pain I was having, she recommended seeing a Pain Med specialist, or getting my PCP to manage the pain.

She went on to explain that she felt I had IBS, and that studies have found that IBS patients seem to experience much more sensitivity to pain, and some patients can actually experience indeterminable levels of pain - there are no real way to mechanically attribute pain when related to IBS, as the Dx is one of exclusion as it is.

I felt much more supported from a clinical standpoint, but still very disappointed in terms of pain management. I already knew that Pain Management Clinics almost exclusively treat patients with spinal or similarly musculoskeletal related pain. Met with PCP the following day, at this point I am out of pain meds again and in full blown doubled-over pain.

I explain that I had now been to a 3rd GI specialist, and finally felt comfortable with my last appoint. She is actually a disciple of of Dr Douglas A Drossman, a leading GI specialist at UNC-Chapel Hill. I explained her insights and that she wanted me to either go to a Pain Doctor or have him manage the pain meds. My PCP looked at me and simply said, "why would you go to yet a 3rd GI specialist?" and "i am not going to get involved in continuing to give you more pain medication." I am so angry and scared by now i cannot think straight. I could not understand why my pain was being dismissed and/or trivialized. If i had to score it on 1-10, i had been in the 7-9 zone for weeks now. My PCP wrote me a script for 20 more 10/325 and told me to go to ER if things became too much to handle.

I knew that going to the ER would be totally worthless unless absolutely necessary. I know they'd first of all shy away from treating my pain until they'd eliminated as much as they could in terms of likely abdominal ailments, and this would be after I waited for hours just to be seen. If i was lucky they'd give me some morphine and a prescription for 5 Percocets and tell me to follow-up with my PCP.

In the meantime, I find that I can get Ondansetron from Costco dirt cheap, so I ask my PCP to call the prescription in so I will at least be done with what has been weeks of nausea and vomiting.

So, last Wednesday my husband called my PCP and insisted on his support and to discuss the situation - that he was my doctor and it was his job to support me at the very least until some sort of diagnosis had been officially determined. He said he'd contacted a Pain Management Dr to consult and was told that at the very most, if i'd been seen at their office, I could expect Hydrocodone 10/325 qid and Neurontin. And if I didn't like that, too bad and can go elsewhere.

So the PCP agreed to write just that until my next appt with my selected GI which was the 17th of May. He is now writing enough for 7 days at a time. Like i am a child or a drug addict. I am in constant excruciating pain and I easily need up to 8 of these pills a day. I just had a refill Friday night and am out already. The Neurontin is useless and has what i honestly feel are unacceptable contraindications and drug interactions - so not worth it. I requested Pregabalin hoping it will give me something to take the edge off while I suffer for yet another week.

I now feel entirely unsupported, abandoned, confused terrified and somehow treated like someone dishonest or a drug addict. matter of fact, when i went to refill my last 7-day supply of Hydrocodone, the pharmacist said it was too soon. i needed to wait another day. even though the prescription had been written for that day, just 20 minutes prior to my arrival at the pharmacy. I had to go to another pharmacy - as I took my prescription back, he said some BS like "they will start to notice." or something like that.

What am i going to do? what are my options? why should i have to be treated like a criminal, or a hypochondriac or a drug-seeker? i am now relegated to cyclical anticipatory anxiety attacks, excruciating pain, despair, sadness and anger. What in the hell is going on with this country? I have never had any addictive or substance abuse problems at all - except cigarettes.

I am scared to death!

Request (5 replies)

jjaileigh — Thu, 13 May 2010 07:31:09 -0600

The short of the very long: I have had shingles 4 times & have resulting post herpetic neurolgia that has been refered to as trigeminal neurolgia since the shingles has always been on the right side of my face. I need help to better understand how to manage my pain & I am looking for a physician/pain management specialist that can help me. I live in St. Louis, Missouri. I can supply you with the horror stories I have encountered in my quest to manage my pain. However, right now I am not strong enough & I need help. At times, rehashing everything can make me more blue. Othertimes, it can be empowering to tell ones story. Any help you can offer me is appreciated. Thank you.

Please help me to help my mom! (4 replies)

tjnana2 — Fri, 30 Apr 2010 20:43:07 -0600

I have been away for a while, disabled myself with arachnoiditist, along with my husband whom is pretty much bed ridden from cronic pain. Left with nerve damage and not able to get around much. He had 5 back surgeries and was left with a ball of scared tissue the size of a softball back in 97 and no way to relief any nerves. Now I'm fased with failed back surgery with my Mom who had the old horse shoe and pins and in 99 a neck fusion inwhich we where told her life would be threated without it due to a nerve depression and how it could kill her with a simple jar to the neck. This has left her with a problem that no Dr. will touch. I could never repay what my Mom has given me and the love is so strong that I would give my life to see her out of pain. All of our technoligy and no hope for scared tissue. They went through her neck in the front, which had to move her esophogus (sp?) to the side to get to it. She had trouble swallowing since them and her esophgus dilated numerous times, which now their saying should not have been done. Her hardware has puched into it and causing swallowing problems. She can't swallow pills, and the barren swallow test revealed it is a problem even with her salava showing it goes in all directions. Worried it could cause suffication if it gets into the lungs or even a feeding tube. She is a healthy 78 yrs. young and can run circles around me. Now the same dr. that did the surgery is saying it's another disc that needs repairing and he would go through the back due to her extreme pressure at the back of head and neck. Decom pressed again and dangerouus but again said no dr. would ever atimpt to remove the hardware that is pushing into the esophogus. Does anyone know if it has been done? Or can a dr. actually place the esophogus back in the wrong place. It appears to be more toward the left and feels as if she has a gorder and can't even swallow pills. Please tell me there is hope and it does matter regardless of her age?
Thank You for anyone's input with this situation of my Mother would be appreciated.
Tammie

How do you deal with your chronic pain (11 replies)

mark.barletta@paincare.org — Wed, 07 Jul 2010 07:55:09 -0600

After years of suffering in chronic pain, I finally came to the conclusion i needed to accept the fact my pain would always be with me. I hated the fact that my pain would always be. For years i did not want to accept the fact. But now knowing there is nothing I can do to make my pain go away i deal with it on a daily basis. Many years ago I started a exercise program I do most every day. i cant run so I walk 3 miles a day and do crunches. Most everyone should do some kind of exercise each day if its yoga, walking, etc.
I know for sure my walking does help with my pain and stress.Plus I'm getting older now and I'm trying to keep my weight under check. It seems everything I eat and drink makes me gain weight.
So for all of you painers try to get as much exercise as possible and if you smoke please try to stop.

Mark Barletta

Have I found Nirvana?? (6 replies)

Capri1955 — Fri, 30 Apr 2010 22:03:20 -0600

Hello Group,
I found your site through another group I am in on Facebook. We are a bunch of victims of Failed Back Syndrome, mostly due to lumbar surgeries that miserably failed & left us in this hopeless & vicious cycle of trying to live in this debilitated, disabled condition, usually while fighting to get adequate pain relief.
I never thought I'd be in this heinous physical condition, disabled at this young age , & without recourse.
Of course, as we all know here, the continued efforts of the DEA to eliminate pretty much EVERY written pain medicine from getting to chronic patients on a steady & uninterrupted basis has been going on now since the Reagan era.
Why this power of invasion of privacy after this country made such a huge stink & demanded offices comply with the HIPAA laws a few years ago has grown unchecked to the level it has, is just beyond me.
One person wrote in about the fact that he has an old medical record that damns him from finding a new Dr. without prejudice is not only a sad situation that defies the laws of common sense, it is IRONIC that now all of our medical records are going VIRAL.
What REALLY disturbs me about this?? The fact that I have in my files, copies of MY own charts from 3 different offices that are FULL of errors & omissions & most disgusting of all, in the case of the entries from my Orthopedic Surgeon- ALL are altered to cover the mistakes & situations that occurred during my surgery & my discussions with the staff & the surgeon. The surgeon who for 8 months hid the fact that he stripped L3 & L4 down, tried to insert a screw & fractured the disc & abandoned the area of the spine, leaving bone that shifts into my nerve canal freely now.
As one of the untouchables that Orthopedic surgeons are - I was unable to sue for the damages he has caused not only to my spine, but the total destruction of my life. He walked away from the practice & last I heard was living, free as a bird & rich as hell off blood money, in the Dominican Republic.
And, I am sure my story can be repeated by the 10s of 1000's in these United States from this occurring unchecked for 20+ years.
BUT- to top it off-we get sent to pain clinics & are treated like criminal on parole, judged, piss tested randomly, insulted, barked at, told not to be angry, rejected by Dr. after Dr. for stupid & unreasonable reasons AND...
We get to PAY for this humiliation & malpractice!!! With our SS Disability or Medicaid IF we are lucky enough to get it.
I wanted to vent a little bit of my story & thoughts on this but I wanted to also say a hearty thank you for bringing this site to the public. In our FB group we have been trying to get a petition together or something to protest the despicable treatment we get & have it go viral but it's not off the ground yet.
We really need to fight the DEA.:X As victims of them & the orthopedic surgeons who maim, & of course for anyone else's chronic pain NON TREATMENT situation as this country & world -when it comes to compassionate & full understanding of what pain patients need, the condition of this problem is CRITICAL. olor=#00CC99][/color]

Desperate for new Doctor (13 replies)

inpainandignored — Sat, 22 May 2010 12:04:28 -0600

Hello fellow sufferers,
I haven't participated in the forum lately but could really use some feedback and help finding a doctor in Missouri or a surrounding state that doesn't ignore my pain. Long story short, I have suffered from chronic lumbar, hip, pelvic and neck pain following an injury ten years ago. I had a decent doctor for about 7 years but the relationship went down hill with the oxycontin scares a few years ago. A year and a half follwing six months of agony and searching found another doctor, but he has never even titrated my meds up to the point that my old doc had me at. Now I have become more tolerant, and am not allowed any break through meds. Two years ago I was performing scientific research and finishing a bachelors degree..today I am sedentary from the pain, overweight and my finances are suffering because I cannot work or go back to school to finish. I was told by my current doctor that "he doesn't increase meds..just changes them". And apparently he goes on the lecture circuit promoting this routine to other specialists, but I have yet to find any literature concerning this new technique of pain management. I tried to be a good patient and take different meds and I became very sick, was in awful pain, couldnt sleep, eat and barely take care of my household..let alone drive back to his office to be put back on the old meds. If anyone knows a good doctor in Missouri or any surrounding state that titrates a patients meds properly, PLEASE, let me know. And, if anyone has ever heard about this new technique of "switching meds, instead of increasing them" please clue me in. Thanks so much. I wish you all well.
inpainandignored

Dr Langley I need your input (8 replies)

1jman — Fri, 16 Apr 2010 17:09:51 -0600

Dr Langley,
I am interested in your suggestion re my post of seeing a new doc.
Here in Cleveland, we have all these great hospital systems, but since they are all intertwined so my records follow me.
What do you think I should do to get in to see a new doc without him seeing my records first
Thank you,
Jeff

seeing a new doc without him seeing my records (2 replies)

1jman — Sun, 11 Apr 2010 19:46:24 -0600

I have finally found a Dr. George in my area that prescribes methadone, HOWEVER...he is part of the University Hospitals, 2 years ago I saw a doc ( McIntyre) who is also part of the UH system, who told me my pain is in my head, and judged me when I told him, I had been dismissed from my pain doc. because I very inoccently took pain meds from an oral sugeon. Whatever he wrote in my chart has follwed me to every UH doc and I am immediatly dismissed ( probably as a drug seeker)
My question is...how do I get in to see this new Dr. without him seeing my records and judging me before he even meets me.
My identity was also stolen, so there may be other things in my UH chart that are incorrect.
Do I call and tell the receptionist my situation and make an appointment under my first name only and not give her my medicare # so the doc will not have any access to my records and we can start fresh?
Should I write a letter to the doc explaining there is incorrect information in my chart, so I would like to make this appointment, bring in my medical records of my surg. ( and the oral surg> records) with my most recent MRI, CAT, X-Ray etc.
I had my UH records sent to my Psych. so we can review them tomorrow.
How would you go about seeing a new doc without him seeing your records before he walks in the door, and has me pre-judged?
I would appreciate any feedback. It has taken 2 years to find a new doc. I dont want to mess this up.
Thanks
Jeff