Living With Pain

I’m one of the more than 100 Million Americans that struggle to deal with some form of chronic debilitating pain.  This happens in their daily lives.  I suffer from Pancreatitis Pain every day. 

Like many others with similar problems, I’m concerned about the current backlash against Opioids.  I worry about whether it’s going to interfere with my ability to be prescribed these drugs by my Doctor.

A lot of people suffer from Chronic issues like Pancreatitis Pain.  Many of us have found that Opioids can give us some measure of relief from our constant battle with pain.  It even allows us to bring some bit of normalcy back into our lives.

That is also one of the things about Opioid usage that many people are ignoring.  The underlying fact that these drugs are often being prescribed for very real pain issues.

Bad Things Happening

But this is one of those times when drugs like Opioids are a perfect proof of the age-old maxim.  Nothing good comes for free.  There is always a cost to be paid.

By that I mean it always seems that whenever you have something good or helpful it comes as a double-edged sword.

In this case, the other edge of the sword is the many problems that people are experiencing. Some are becoming addicted to Opioids or accidentally overdosing on them.

Between 1999 and 2008, the rate of overdose deaths from prescription opioid pain relievers (OPR) in the United States increased 4-fold

A Changing Perspective

It’s hard to read or watch the news without running into something telling us how terrible the Opioid addiction crisis.  In our country alone many people are overdosing and dying every day from these drugs.

Everyone from politicians to Doctors, hospitals, insurance companies, drug stores and addiction organizations seems to be jumping on the bandwagon.  They are all decrying how awful these drugs are for the people that use them.

And the bottom line is that it’s all true!  Opioids are awful drugs that are too easy to get addicted to and can have major side effects.  Even worse, your body gets used to them over time and they gradually become less effective at treating your pain.

This can lead to a patient needing higher and higher doses just to get the same pain relief.  But there aren’t really any good alternatives to them either.

The Blame Game

It also seems that all users of Opioids are being painted with the same tarry brush.  It doesn’t seem to matter whether we are carefully using them as prescribed or misusing and abusing the drugs.

We all are getting smeared with the ugly insinuation that if we take these drugs we are probably abusers.

So let’s get this clear from the start.  I use Opioids.  I suffer from both Chronic and Acute flare-ups of Pancreatitis.

Both of these conditions are an inflammation of the Pancreas.  But they are totally different in the level of pain that they bring with them.

Chronic Pancreatitis

The Chronic Pancreatitis results in a low level of constant pain.  Remember those little charts in the Doctors office to rate pain on a scale of 1 to 10.  Well, my Chronic Pancreatitis is always at a 3-4.

Most of the time I can rely on a couple aspirin or some of the biofeedback for relief.  I can also use breathing techniques that I have been taught to get relief from this constant pain.

Acute Pancreatitis

But a couple of times a month I have an Acute Pancreatitis flare-up that is a totally different beast.  It can easily max out the pain scale. 

This is by far the worst pain that I have ever felt in my entire life.  I’m not telling you about how bad this pain can be for sympathy. Nor to one-up readers of this article – trying to say that my pain is worse than yours.

We Need Relief

I’m trying to present the flip side of the argument coin. The side where there are people like me who suffer from either constant or periodic pain.  We NEED the relief that only Opioids can give us to survive.

Yet, even though I have a perfectly good reason and need to use Opioids.  I always feel a little embarrassed when I call the pharmacy to check on my monthly prescription of the drugs.

Dealing With Pancreatitis Pain

I’m lucky that I have a Doctor that understands the pain that I live with every day.  He has worked with me to develop a pain management plan to help control it.

I’ve earned his trust.   I always follow to the letter the exact manner and amount of these Opioids that I am prescribed.

Balancing The Risks and Benefits

I get Percocet for managing my everyday pain and the smaller flare-ups that happen several times a month.  But on the occasions where I have a major flare-up, I also have some Dilaudid that I can use.

These are both powerful and highly addictive drugs.  So I take them only when the pain has become unbearable to manage by any other means.

It always feels like I am balanced on the edge of a razor.  I take as few of these pain pills as I can.  Trying to balance how much pain I can withstand with the dangers of taking these powerful drugs.

I’m careful about how I use my pain meds.  Because I know that as kind and understanding as my Doctor is. If he suspected that I, in any way was misusing my meds, he would cut me off in a heartbeat.

But I think that is how it should be.  To paraphrase Yoda – with great pain comes great responsibility.

There is a part of this “crisis” that doesn’t receive as much press.  It’s that the biggest number of overdoses of these drugs are getting them by means other than a prescription.

In my mind, this is where the real danger lies.  There are manypeople who need these drugs and use them responsibly.  But they could find it harder to be effectively treated for their pain.

My Experiences With Pain

I think that unless you have actually felt real pain it’s hard to understand just how terrible it can be.  Having to deal with it day after day.  It can become an all-consuming part of each day that overshadows everything else.  Pain can suck any joy out of your life.

In ways, though I guess that I am lucky.  My Acute flare-ups only show up a few times a month.  They can last anywhere from a few days to a week or two.

They can be caused by something I’ve eaten, if I twist wrong or accidentally get hit in my Pancreas.  Too much stress can be a trigger.  Or hell – I swear even if the weather changes.  Sometimes I just don’t know what causes them.

One flare-up was even caused when my cat used my stomach as a springboard when he was chasing a fly.

But, like I said, I guess that I am lucky.  I know that when I get a flare-up, if I can just hang on long enough, that it will probably go away.  Sure, there are a lot of things that could go wrong because of the flare up but so far I’ve been pretty lucky.

There have been many times when I was laying in a bed in the hospital almost delirious from the pain.  I’d be desperately watching the second hand slowly clicking around the face of the clock. Just praying that it would go faster so I could get my next dose of pain meds.

Pain And Depression

According to a recent survey, more than 50% of the people who suffer Pancreatitis Pain is also clinically depressed.  I am certainly one of those people.  I’m also certain that this number is the same for anyone who suffers from any form of chronic pain.

I battle depression on a daily basis.  Most of the time I can keep it at arm’s length and control it.  But there have been numerous times when I was in such a deep and dark place that there seemed to be only one way to escape.  

Luckily I have family and friends who encouraged and helped me get the help that I needed before I did anything too rash.

Doctors and Pain Management

No one can understand how badly another person is feeling because you aren’t in their shoes.  But I think that I may have gained a unique insight into what it must be like for others. Many people are suffering from constant problems with chronic pain.

What would be great is if someone would just invent some type of machine.  It would allow a Doctor to hook up to and feel exactly the same pain that their patient is feeling.

This insight would help a lot of Doctors become a lot more sympathetic to their patients’ situations.  But there isn’t such a machine.  So until someone invents one we have to rely on Doctors correctly diagnosing and treating our pain.  All the while hoping that they are going to show us some compassion and want to help.

A Difficult Situation

Still, Doctors find themselves in a tough spot when it comes to prescribing Opioids.

On the one hand, they have patients who are hoping, sometimes desperately, to be prescribed these pain meds.

Make no mistake, there are a lot of these patients that are really needing help with their chronic pain.  But then there are also others that are exaggerating or just creating make-believe pains to get at the drugs.  Doctors have to try and sort these out to know how to treat them.

On the other hand, Doctors also have regulators and administrators that are telling them to be more cautious.  Prescribe too many Opioids and any Doctor could find themselves in a lot of hot water.

I can’t find any studies to back this up.  But it only makes sense that Doctors are going to be reluctant to prescribe these meds.  Especially if they don’t have some history with you and your problems.  It is going to be hard to convince them that you really are in need of these pain meds that have so many potential problems.

So, it can be a challenge for those of us that have legitimate problems with pain.  We are being forced to try to convince a skeptical Doctor that we are in enough pain to justify pain meds being prescribed. 

You also can’t get too demanding or desperate when trying to get pain meds.  It can raise red flags and make Doctors think you are drug seeking.

Changing Goals

It used to be that when you went to the hospital in pain they would pump you full of meds.  Then try to sort out the cause of your pain later.

Lately, it seems different when I’ve gone into the hospital because of an Acute flare-up.  I’ve had to go through a vetting process just to prove that I am actually in pain.

Even though my medical file is stuffed with report after report.  Each detailing the problems I’ve had with Pancreatitis it doesn’t seem to matter.

Almost every Doctor that I’ve dealt with has been reluctant to treat my pain with any Opioid.  First they need results of tests proving that yes – I am actually having a flare-up and am in pain.  

But in my experience, it’s also true that until those tests come back, you are more likely to be treated like someone who is an addict.  Someone that is drug seeking than as a patient who really needs help.

Problems With Pancreatitis Pain

No one would enjoy being treated like a drug seeker even on their best day.  But when you are in pain and fighting just to be able to function it can be even more challenging.  

Part of my problem stems from the fact that when I go to the Emergency Room I’m not bleeding.   I haven’t been shot or stabbed and I wasn’t in a car crash so there are no outward signs of major trauma.

I never know when a flare-up starts how big it is going to end up being.  Whether it is going to be something that I can handle with the pain meds I have been prescribed at home or if I am going to end up having to go to the hospital.

All this has ended up making me a little skittish about going to the hospital.  I just don’t want to have to deal with this problem if I can possibly avoid it.

Most people should understand my feelings of trepidation, even a sense of panic.  When ever I hear that people who have no idea what real pain is want to further regulate my meds.  And even decide whether or not I should have access to the pain meds that help me live an almost – at times – normal life.

Where does all this leave those of us that need these meds?

Where Opioids Came From

Opioids have been around for a long time in one form or another.  Opioid drugs are very effective at working on the Opioid Receptors in the Nervous System to relieve pain.  This made the drugs seem like the perfect answer for all sorts of people who suffered from debilitating pain.

To understand our current crisis you first need to understand two important things that happened around thirty years ago.

The first and probably the most important was a movement that swept through the medical community.  It called for Doctors to not just treat pain but to cure it.  Doctors were urged on by patient groups, journals, and even the federal government.  They gradually began to change the way that they viewed and treated pain.

In fact, many hospitals started training their Doctors to view Pain as the “5th Vital Sign“.  One that was just as, if not more important than, temperature, pulse, breathing rate, and blood pressure.

By the mid-1990’s you may even remember the smiley pain charts that first started to appear on the walls of Doctors offices.  Patients were encouraged to rate their pain on a scale of one to ten.  These charts showed happy smiley faces that gradually changed to scowly faces as the pain increased.

Doctors were clearly starting to understand that pain management was an important part of treating their patients who were in pain.

Mass Production

The second thing that happened at the same time was the mass manufacturing of new Opioid painkillers.  Drug Companies assured Doctors that these powerful new drugs were both safe and non-addictive.

These drugs gave Doctors an new and important tool for helping their patients who were suffering from pain.  The Federal Government had even started offering financial rewards to the hospitals that best managed the pain of their patients.

By the time that it became evident just how addictive these drugs were there were hundreds of thousands of prescriptions already being written.

Pain Is Hard To Treat

As bad or worse than the addiction is the fact that with long-term use the drugs can also become less effective as patients become used to them and higher dosages are required to maintain the same pain relief.

This can make it hard for both Doctors and Patients to tell where pain management stops and addiction problems begin.

So lately, the issue of when and how Doctors should prescribe the use of Opioids for pain management is turning back towards a harder stance and becoming a hot-button topic of discussion.

Using Opioids can be a hard thing to balance even when you are under the care of a Doctor but many of these drugs are finding their ways into the hands of people who are using them recreationally or because of an addiction.

Any sane person has to admit that the number of addictions due to these types of drugs has become a very real problem.  The National Institute on Drug Abuse even reports that there are more than 90 people dying every day from Opioid overdoses.

More Control

This has led to many people in the medical profession and the Government pushing for increased controls on the number of prescriptions that are written for these types of drugs.  This problem has even become a national issue.

Some Hospitals and Doctors are even deciding that they won’t prescribe opioids anymore, or if they do, limiting the number of pills and duration of the prescription.

But the pain management Genie is out of the bottle and it’s certainly not going back in easily.  This is even though we are clearly in a crisis situation now.  Doctors have begun to question whether they may have gone too far in trying to treat their patients with pain.

In the summer of 2016, the American Medical Association even passed a resolution stating that “the notion of ‘pain as the fifth vital sign’ … although intended to promote pain assessment and effective treatment, in general, contributed to an increase in opioid prescribing.”

While this rethinking of how Doctors treat their Patients pain is an important step in dealing with this crisis it’s also leaving the millions of people suffering from chronic pain out in the cold with no good alternatives for their pain.

What About Me?

It is estimated that only half the people dealing with an addiction to these type of drugs have  been prescribed them by a Doctor.  But of the total number of people that are prescribed Opioids for chronic pain less than 21-29% end up misusing them.

There was a survey conducted by the Washington Post and Kaiser Family Foundation.  It found that the majority of people who suffered long-term chronic pain said that using these drugs to relieve their pain dramatically improved their quality of life.

So where does all this leave those of us that suffer from debilitating Pancreatitis Pain or some other chronic problem and rely on these opioids for some measure of relief?

It’s sort of scary to think that I might start to have trouble getting the pain meds that I need for my day to day pain and especially when I’m having a flare-up and need something more powerful.

How Doctors Are Reacting

“Most of us went into medicine to alleviate suffering,” says Andrew Gurman, president of the American Medical Association. “One of the expectations our patients have is that pain can be completely eliminated. We as a medical community are coming to an understanding that this is not realistic.”

There was also a report released recently by “The President’s Commission On Combating Drug Addiction And The Opioid Crisis”.  This report contained 56 recommendations for dealing with the problems of Opioids.

The vast majority of the recommendations dealt with trying to get improved reporting to better understand the extent of this crisis.  It also recommended creating funding for addiction and education programs for people that are or might think about using these drugs and increasing oversight on how, when, and how many prescriptions are being written.

Only 2 of the 56 recommendations seemed to be aimed at helping the people who have Chronic Pain and need help dealing with it.  One was to make it easier for us to get our insurance companies to pay for alternative therapies for pain.  The second, to continue funding research for other safer drugs that could be used to treat pain.

All this means that Doctors are being caught between a rock and a hard place with Patients who demand to have their pain treated.  Meanwhile, the Government and medical community as a whole are increasingly reluctant to use Opioids as treatment options.

Pain Acceptance: The Future Of Pain Management?

I don’t have a crystal ball telling me where this all is going.  It’s only reasonable to assume that Doctors are going to become more reluctant to write prescriptions for Opioids.  But chronic Pain we suffer isn’t going to go away either – whether it is caused by Pancreatitis Pain or some other chronic condition.

Even people with some type of acute one-time pain episode are going to find it harder to get pain relief from Doctors and Emergency Rooms.

What Is Pain Acceptance?

There is a new idea circulating among the people who prescribe and regulate the prescription of Pain Meds.  It’s called Pain Acceptance.

Just like it sounds, it’s the idea that the solution to the Opioid epidemic is to ask patients to accept living with a certain level of pain.  And by a certain level of pain, you can bet that it means asking people to live with more pain than they already are now.

It means accepting pain for months, years – or even the rest of your life.  To me, this sounds like a miserable and unfair solution to a problem that most people who take Opioids for pain management aren’t experiencing.

It’s making all of us pay for what only a few of us are doing.  In its rush to deal with the very real Opioid Crisis the Government is forgetting that there was a real need for these drugs.

And by focusing only on the bigger problem it is going to make life harder for those of us that legitimately need and responsibly take these drugs.

My Recommendations

So what can we do to try and make sure that we are getting the help with our pain that we need?  Here are my best recommendations.

First:  I am completely honest with any Doctor about my pain levels.   I never exaggerate or inflate my pain complaints in the hope of getting more meds.  My hope is that by doing this my Doctors will sense my honesty and try to help me as well as they are able.

Two:  If you can’t work with your Doctor or don’t think that they have your best interests at heart then I would look for another one.  I certainly don’t suggest “Doctor shopping” just to get Opioids.  But you should make sure that the Doctor that you are with is interested in helping you with your problems.

Three:  I also make sure that my problems get immortalized in my medical reports so anyone that looks will see my history with pain.

Four:  I am always open to trying alternative treatments to help with my pain.  I’ve recently been seeing a specialist in pain that introduced me to biofeedback and breathing exercises.

These have actually helped my lower level pain problems a lot.  But, I haven’t experienced or heard of any alternative therapies that can handle major pain very well.  Still, just seeing that I am trying to deal with my pain any way that I can helps to assure most Doctors that I am dealing with a real problem.

Five:  Make sure that you find a GOOD Doctor and create a long-term relationship with them.  The best way to get the help that you need is to have a Doctor that knows you and your complete history.

Six:  If you are addicted, or think that you might be, please make sure that you seek out help before it becomes a larger problem than what you already are trying to deal with in your life.   Here is a link to people who can help you get the care that you need.

Other than that I suggest that you hunker down and hang on bucko.  This ride that we are on is only going to get rougher as politicians decide how to manage this crisis.