Pain Patients Fed Up with Poor Treatment in Hospitals

By Pat Anson, Editor

Eight out of ten pain patients feel hospital staff have not been adequately trained in pain management and over half rate the quality of their pain care in hospitals as either poor or very poor, according to a new survey.

Over 1,250 acute and chronic pain patients participated in the online survey by Pain News Network and the International Pain Foundation (IPain). The survey findings -- supported by the comments and experiences of hundreds of pain patients -- amount to a stinging indictment of hospital pain care in the United States.

It’s not uncommon for pain patients to suffer from a variety of chronic conditions and diseases, and many told us they've been hospitalized several times. 

Asked to rate the overall quality of their medical care in hospitals, pain patients were fairly even-handed in their ratings. About a third said it was good or very good, 37% said it was fair and 29% said it was poor or very poor.

But some said they were so badly treated and traumatized by the experience, they’re afraid to go back.

“It's so bad that I will not seek treatment in an ER or hospital unless I really feel like my life is in jeopardy. They do not get it, they do not listen, and they do not care,” is how one pain patient put it.

“I refuse to go to ER. It will end up killing me because I know how sick I am, but I would rather die than deal with ignorant, condescending doctors and nurses,” wrote another.

• 34% VERY GOOD OR GOOD
• 37% FAIR
• 29% VERY POOR OR POOR

• 34% VERY GOOD OR GOOD
• 37% FAIR
• 29% VERY POOR OR POOR

HOW WOULD YOU RATE THE OVERALL QUALITY OF YOUR MEDICAL CARE IN HOSPITALS?

Several healthcare providers also wrote to us, admitting pain patients were often treated poorly.

"Many of my colleagues would refuse to medicate patients in pain, especially women in pain. They had many misconceptions that women were attention seeking, or exaggerating their pain. They also believed that even short term opioid therapy would 'create' addiction," wrote a nurse.

"I am a nurse anesthetist as well as a patient with fibromyalgia and severe arthritis," said another nurse. "The USA does a horrible job treating chronic pain. Too many suffer and too many commit suicide because of this."

When asked to rate only the quality of their pain treatment, the survey results were decidedly negative. Over 52% said their pain treatment in hospitals was poor or very poor, 25% rated it fair, and only 23% said it was good or very good.

Many patients complained that their pain went untreated or under-treated, even though pain was usually the primary reason they were admitted to a hospital. 

“I was at the ER once crying because I was in so much pain and I had a nurse tell me to shut up and cut the act. Never been treated so inhumanely,” said one pain patient.

“I've had to fight for proper pain management every time I've been in a hospital in the last 10 years. The DEA created this problem and the CDC is only reinforcing it. It's a travesty,” wrote another.

• 52% VERY POOR OR POOR
• 25% FAIR
• 23% VERY GOOD OR GOOD

• 52% VERY POOR OR POOR
• 25% FAIR
• 23% VERY GOOD OR GOOD

HOW WOULD YOU RATE THE QUALITY OF YOUR PAIN TREATMENT IN HOSPITALS?

“If I were an animal and was treated the way I was after surgery my owner would have been arrested for cruelty to an animal. As a human being, don't I deserve to be treated at least as well as an animal?” asked another pain sufferer.

"I've stopped going to hospitals even if I feel I'm having another stroke or heart attack, due to the horrific lack of pain control," wrote a patient who has multiple autoimmune diseases. "I'd rather die than be judged or be left writhing in pain."

"Pain is under-treated and at times downright ignored. I believe that this is leading to the cause of chronic pain in some patients," wrote another patient.

There is some evidence to support the claim that untreated or under-treated acute pain can turn into chronic pain. A study published in the Lancet warned that “an alarmingly high number of patients develop chronic pain after routine surgery.”

Yet when pain patients were asked in our survey if their pain was adequately controlled after surgery or treatment in a hospital, nearly two-thirds (64%) said no and only 34% said yes. 

“There is research demonstrating that the intensity of acute postoperative pain correlates with the risk of going on to develop chronic pain. This suggests that aggressive early therapy for postoperative pain is critical for preventing the pain from turning chronic,” says Cindy Steinberg, National Director of Policy and Advocacy for the U.S. Pain Foundation.

• 64% NO
• 34% YES

• 64% NO
• 34% YES

IF YOU EXPERIENCED PAIN AFTER A SURGERY OR TREATMENT IN A HOSPITAL, WAS IT ADEQUATELY CONTROLLED?

“Minimizing and deemphasizing the focus on controlling acute pain in hospital settings is likely going to set us up for potentially dramatic increases in the number of Americans with long term chronic pain.”

By treating acute pain so poorly, could our hospitals and emergency rooms be mass-producing future chronic pain patients?

And, if so, what can be done to stop it?

One solution – overwhelmingly supported by respondents to our survey – is better education in pain management for doctors, nurses and other healthcare providers.

Asked if they feel hospital staff are adequately train in pain management, nearly 83% of pain patients said no and just 9% said yes.  

“All staff should be educated and able to understand the difference between opioid dependency and opioid abuse," wrote one pain patient. "Over the last decade I have witnessed the quality of care for pain management plummet, and I have also observed increased chronic mistreatment of pain patients.”

"I am a nurse. Anyone who has chronic pain is labeled automatically as a drug seeker. The under-education about chronic pain is alarming. The way truthful patients are treated is just deplorable," wrote another pain sufferer.

• 83% NO
• 9% YES
• 9% DON'T KNOW

• 83% NO
• 9% YES
• 9% DON'T KNOW

OVERALL, DO YOU FEEL HOSPITAL STAFF ARE ADEQUATELY TRAINED IN PAIN MANAGEMENT?

"I think that hospital staff members are trained to be afraid of pain patients. They know what is necessary to treat pain, even chronic pain, but the fear that is instilled in them by oversight committees, the DEA, and Congress that all opiod pain prescriptions lead to drug addiction has led them to be afraid of treating pain patients. Education is the key," wrote another pain sufferer.

“In my 20+ years of having CRPS (Chronic Regional Pain Syndrome), I have never been to an ER where the staff even knew what it was,” wrote one of several readers who lamented that doctors and nurses are often ignorant about CRPS and RSD (Reflex Sympathetic Dystrophy).

“I have experienced this myself. The nurses didn’t understand my pain conditions and how my body reacted. They didn’t understand that I had additional needs," said Barby Ingle, president of IPain, who suffers from RSD. "I have recently had a provider ask, 'Does it really hurt that bad?' while doing a procedure on me under local anesthesia. I was screaming, crying, and moving so much that a normal patient gets 7 anesthetic shots. For me it took 28 and those were extremely painful.

“For a pain patient to go to a hospital for pain care and still have their pain unaddressed, under-treated, or misunderstood is clear evidence that we need better education for hospital staff."

The lack of pain education in medical schools is not new. A 2012 study published in the Journal of Pain  called pain education "lackluster" in the U.S. and Canada. The study of 117 medical schools found that less than 4% required a course in pain education and many did not have any pain courses.

Despite that, opioid prescribing guidelines released this month by the Centers for Disease Control and Prevention only briefly mention the agency will "work with partners to support clinician education" and even that vague promise is only focused on reducing opioid use. The same is true for the Food and Drug Administration, which recently announced several sweeping changes in its opioid policies, none of which address physician education.  

Only the recently adopted National Pain Strategy (NPS) acknowledges that "most health care professions’ education programs devote little time to education and training about pain and pain care," and suggests several ways to improve them.  But it's unclear how the NPS will ever be implemented, since it has no budget and relies on major policy changes involving medical schools, accreditation groups,  healthcare providers, and regulatory agencies. 

"I think it’s true that many hospital providers are poorly educated about pain management, and, especially if the patient’s condition is complex, understanding what is going on and finding a good solution can be very challenging,” said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management, who believes providers need more empathy, as well as education.

"In my experience, I found that hospitalized patients were much more satisfied if they just felt like someone understood them and their pain, expressed a sense of caring, and made a strong effort to help. For those patients, even if you weren’t able to get their pain controlled for a little while, they really appreciated the fact that someone believed them and was trying to help. Sometimes, it’s as much about caring for the person with pain as it is treating the person with pain."

To see the complete survey results, click here.

Hospital Study Calls Chest Pain ‘Opportunity for Savings’

By Pat Anson, Editor

Reducing the cost of healthcare is a major goal for insurers, providers and patients, but some physicians say the state of Rhode Island is taking things too far by discouraging some patients from getting their pain treated.

The state’s Executive Office of Health and Human Services has issued a report that identifies $90 million in annual savings “by preventing non-emergency visits” to hospital emergency rooms. Chest pain is listed as “the greatest opportunity for savings” while back pain, abdominal pain and headache are considered “potentially preventable" reasons for emergency room care.

“While many people associate ‘chest pain’ with ‘heart attack’, a truly emergent and serious condition, the majority of those who present to the emergency room with chest pain and are not admitted to the hospital are not experiencing a heart attack,” the report says.

In Rhode Island, 46% of emergency room visits were considered potentially preventable for privately insured patients and 70% of the visits for Medicaid patients.

“A potentially preventable emergency room visit is when a patient goes to an emergency room for a health condition that could have been treated in a non-emergency setting or prevented by keeping them healthier earlier on. Treatment in an emergency room is generally more expensive than a primary care visit,” according to the report.

The average cost of an emergency room visit in Rhode Island varies considerably, from $368 for a Medicaid recipient to $1,154 for someone with private insurance.  

The American College of Emergency Physicians (ACEP) calls the report irresponsible and flawed, because it relies on data about patients’ final diagnoses, not their presenting symptoms. That analysis does not take into consideration the national "prudent layperson" standard in the Affordable Care Act (ACA), which says emergency visits must be covered by insurance companies based on the patients' symptoms, not their final diagnoses.

"It is very alarming that a report like this is being issued that directly undermines language in the ACA and patients' responsible use of the emergency department," said Jay Kaplan, MD, president of ACEP. "Patients never should be forced into the position of self-diagnosing their medical conditions out of fear of insurance not covering the visit. This applies 20/20 hindsight to possibly life-threatening conditions — such as chest pain — and it violates the national prudent layperson standard designed to protect patients' health plan coverage of emergency care."

Data in the Rhode Island report also does not correlate with the latest national data on emergency visits from the CDC, which found that 96 percent of emergency patients needed medical care within two hours.

"A report like this only serves to potentially scare patients away from the emergency department when they may need it most," said Christopher Zabbo, DO, president of ACEP's Rhode Island Chapter. "Both harmless and deadly conditions often have the same presentations. Asking patients to make that determination while at home, anxious, and with inadequate information, is a recipe for disaster."   

“I do all I can to stay away from our hospitals unless it is a planned surgery. I arrive with all my records, educated on my condition and find they (doctors) are immediately turned off due to my complications,” said Ellen Lenox Smith, a Rhode Island resident who suffers from Ehlers Danlos syndrome and is a columnist for Pain News Network. Ellen recently wrote about some of her bad hospital experiences and how she learned to avoid future ones. (see”How to Stop Hospital Horrors”).  

According to the CDC, stomach and abdominal pain were the number one reason for patients to visit an emergency room in 2011, followed by chest pain, fever, headache, cough and back pain.

Take Our Survey About Hospital Pain Treatment

By Pat Anson, Editor

Over the last few months, we’ve received hundreds of reader comments about the poor quality of their pain care in hospitals and emergency rooms. Many said they their pain was not treated or undertreated, while others said they were misdiagnosed or labelled as addicts if they asked for pain medication.

In an effort to keep the dialogue going and see just how common these problems are, Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain sufferers about their treatment in hospitals. The survey, which you can take by clicking here, should only take a few minutes to complete.

One reason we’re doing the survey is because a group of U.S. senators recently proposed that Medicare no longer require hospitals to ask patients about the quality of their pain care. The senators believe questioning patients about their pain leads to over-prescribing "because physicians may feel compelled to prescribe opioid pain relievers" to improve their hospital's ranking in patient satisfaction surveys.

“Why would we want to reduce pain care or stop asking about a person’s comfort and pain levels?” asked Barby Ingle, president of IPain, who knows from experience what it’s like to go untreated or undertreated in a hospital. Barby recently wrote a column about ways to make your hospital stay easier.

“The International Pain Foundation has been hearing increasing stories of undertreated pain care in ER and hospital settings over the past few years,” she said. “With such a large outcry from pain patients across the country saying ‘don’t go the hospital for pain, they don’t know how to treat pain,’ we know there is a problem. How can it be addressed? Surveying the pain community will help put a spotlight on this issue and show lawmakers, providers, insurance companies, and the pain community that we need more focus on our pain care needs, not less.”

A recent development that will affect future pain care in hospitals is the release of new guidelines for post-surgical pain management. The American Pain Society is encouraging physicians to use opioids alongside “multimodal therapies” such as acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), Lyrica, Neurontin, and cognitive behavioral therapy to treat patients in post-operative pain.

“Cognitive behavioral therapy? Really? So you cut into my nerves and tissue and muscles for 6 hours, and the pain is all in my head?” is what Janet Lynn wrote about that idea.

“So when the NSAIDs shut down a person’s kidneys or cause massive stomach irritation and bleeding is it time to give a patient a narcotic pain med?” asked Sharon Storck

Even doctors aren’t immune from poor treatment in hospitals. Family practice physician Lisa Kehrberg, who has severe abdominal pain from visceral neuropathy, recently wrote about one of her experiences in a hospital (see “My Journey From Doctor to Chronic Pain Patient”)

“The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced,” wrote Dr. Kerhberg. “Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.”

Has this ever happened to you? Are you satisfied with the quality of your pain care in hospitals? Take our survey and let us know, by clicking here.

How to Stop Hospital Horrors

By Ellen Lenox Smith, Columnist

I am guessing many readers will be able to relate to this topic -- the horrors of being in a hospital with a complicated chronic condition like mine, Ehlers Danlos syndrome. Whether it is a planned surgery or an emergency visit, patients who do not fit into a “neat box” often find that staying in a hospital can be insulting, frightening, and at times dangerous.

If you are reading this as a medical professional who works in a hospital, I hope you will think about what it is like to be a patient in this circumstance and consider helping to change the staff’s attitudes and ways.

I will share three short stories to help you to begin to understand the horrors that can happen.

One of the most horrifying things my husband and I faced was when we flew from our home state of Rhode Island to Wisconsin to have my feet reconstructed. My life, after the surgery, was to be five months in a wheelchair, non weight bearing. It was not an easy assignment to face.

After the successful surgery, a hospital social worker was assigned to find a safe rehabilitation center for me until I was strong enough to  travel back home.

She arrived in the room four mornings later to announce that not one place would accept me because I was “too complicated” due to my drug and food reactions. As a result, I was to be discharged to home. We were sent that afternoon to a motel that turned out to be filthy. I had to use a bedpan since I was no longer able to walk and then flew home the next day. It was humiliating and also dangerous to send me home just a few days after major surgeries, but we had nothing we could do to change this.

Lesson Learned: I did, in time, write to the president of the hospital to let him know how unacceptable this treatment was. From that point on, we were given a wonderful team to help make sure this never happened again. We have returned year after year to the same hospital for my surgeries.

Another event was dealing with IV’s. Because of my condition, IV’s were difficult to hold in place and many times became infiltrated, sending medication into the surrounding tissue instead of the blood stream. One night I kept telling the nurse in charge of me that the IV was dislodged. I was told all was just fine, even though as he administered the pain medication into the IV it stung and made the location of the injection swell immediately.  

He said  to “get some rest, you are just tired.”  Well, I was right, the pain medication did not get into the blood. So, I had to suffer with unnecessary pain until an ICU nurse came down and was able to successfully get the IV catheter into a vein and stay there. This all happen in the middle of the night while I was in post op, exhausted and paying the price for a nurse not willing to listen to me and take me seriously.

Lesson Learned: Today, I no longer get an IV. We either use a PIC line or port for surgeries. They hold and work for me!

My next story involves a friend who was admitted to a hospital so sick that she was not able to get out of bed without passing out and going into seizures. Due to her complications, she was not able to get the care needed and was transported to Johns Hopkins Hospital. Within 24 hours, after a standard MRI while laying down, it was declared that she was to sit up, take the neck collar off, and be discharged.

The problem was the only way to get a true answer for what was wrong with her was to have an MRI while standing up.

After much hard work by her mom and husband, my friend was transported to Doctor’s Community Hospital; where it was determined, via the correct neurosurgeon who ordered the correct imaging, that she needed a neck fusion quickly to save her life. Yet, two hospitals wanted to discharge her home and felt she was just fine.

Lesson Learned: Be sure to get to a hospital that your skilled doctor has connections with. Don’t give up until you find the right doctor at the right hospital, for if my friend had listened to the first two places, she would not be alive today.

So what can we all do to change the potential of inappropriate treatment, or even no treatment at all?

1) Try to deal with your difficult issues, as much as you can, at home and with doctors you can trust, instead of running to a hospital. My husband and I have a pact to stay away from hospitals as much as we can to keep me safe, even though we both admit that we would so appreciate knowing we could go there safely for help.

2) If there is no choice but to go to the hospital, come as prepared as you can with files of your medical records, including lists of medications, medications you react to, supplements, diagnosis, previous surgeries, contact info for doctors that treat you, and tests done along with their dates and locations.

3) I have a packet of all this information that we keep in the car “just in case.” I also keep the records on my computer and can easily add new information when needed.

4) Make sure your doctor is part of the hospital you go to or is able to connect with the right people in the one you must get to.

5) If you have a negative experience, write the president of the hospital, not to just vent and complain, but with the intent to share issues of your care and to help educate in any way you can. Remember, if we just bad mouth them, we could potentially not be welcome at all. I had a phone call once from a local doctor who saw a negative Facebook post by a frustrated patient that included the doctor’s and the hospital’s names. The call was to ask me to take down the post, because the hospital staff were reading it and were really upset. The doctor told me we had to be careful how we dealt with this or people would reject taking us at all!

6) Write your congressman and share why being admitted to a hospital in their district is dangerous for you. If we don’t speak out, it continues and we suffer.

Unfortunately, we walk a fine line. We need to share these horror stories, but we have to be cautious how we do this. We want changes to happen, but we don’t want to turn people off by being so aggressive and so angry that they turn away from helping us or others like us in the future.

Education is constantly the theme; teach others what your condition is like, offer to speak out, and even consider a letter to the editor to share your concerns. But again, remember to think how you express these words. When somebody approaches you feeling extremely angry, you feel that vibration and want to back up. The medical team will feel this way too.

We have to be bigger people and put our anger aside to explain what it's like to be in our situation.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Danger of Treating ER Patients as Drug Seekers

By Emily Ullrich, Columnist

Recently the news has been covering the story of Barbara Dawson, a Florida woman who was arrested after she refused to leave a hospital that would not treat her for abdominal pain. While being escorted from the hospital in handcuffs, she collapsed in the parking lot and later died.

For many of us who are chronic pain patients, this kind of treatment is all too familiar. More often than not, when doctors see that we are on pain medications, they automatically assume that we are drug addicts and that we are “drug-seeking” just by going to the hospital. 

Personally, I have so many of these experiences, that I couldn't possibly list them all. Last year, I was hospitalized for upper abdominal pain. I had been to the emergency room earlier that week for the same issue, so the doctor told me he was admitting me, “Because otherwise you'll just keep coming back.”

On my first day after being admitted, I was given no pain control and was taken off of my muscle relaxers. I got no sleep. I was told there was absolutely nothing wrong, and they couldn't find any reason to keep me. I overheard my nurse speaking to another nurse, saying that my liver enzymes were in the thousands.

I questioned the doctor, who was in the process of discharging me, about my liver enzymes. He asked how I knew about this. I claimed that I had asked the nurse, because I could tell he was angry and I didn't want to get her in trouble, although I had every right to know this potentially life threatening information. At that point, he felt pressured to keep me and try to figure out what was wrong.

Because they weren't treating my pain, my blood pressure was high and I was at risk of heart attack or stroke. Instead of treating my pain, they put me on two different blood pressure medications.

At one point, I was taken to another floor for an abdominal scan. I was in so much pain I was trembling. A nurse said, “So, you're an addict. When's the last time you used?”

I was dumbfounded. I replied that I was absolutely not an addict and asked why she said this.

“Oh, maybe I used the wrong terminology,” the nurse said. “You've been on pain meds for a long time, right?”

I said yes and she said, “Well, okay. You can't deny that, then. I just used the wrong word, sorry.”

I was suddenly acutely aware of the frequent misuse of the term “LTDU” (long term drug user), which is applied to many of us who take pain medications.

Upon transfer from my room to the exam room, I was given my medical records to hold. I opened and read them. Not surprisingly, I saw multiple remarks about “drug seeking behavior.” The nurse told me I was not allowed to read my own records. I said, “I'm allowed to hold them, but not read them? They're mine!”

“Yes. Well, it's hospital policy,” she replied.

I was hospitalized a second time last year, for the same issue, plus bradycardia. The admitting doctor was nasty to me, saying,  “I am admitting you, but you will not be given one drop of pain medication other than Tylenol.”

Eventually, I was given a small dose of pain medication, but I was still trembling and vomiting the pain was so bad; yet the doctors refused to raise my dosage. I called the nurse, who got me a patient controlled pain pump. This was slightly more helpful, but when I let them know that the dosage was not controlling my pain, they took it away entirely. The gastrointestinal team came in and talked to me, but never came back.

I was discharged within three days, with no answers. Over those three days, I was told by one nurse, “If you call me every time it's time for your medication, you are called a ‘clock watcher,’ which we consider a form of drug-seeking.”

I was again gobsmacked. Later, another doctor came in and said, “We have no reason to believe you're in pain.”

I said, “Why would I go through all of this just to get a mediocre amount of pain medicine?! I'm not drug-seeking, I'm relief-seeking!”

The doctor said, “Well, there's not much difference.”

During this second stay, I had to call the charge nurse and often the patient advocate, just to get minimal pain control. Every time, I pointed out their sign, which said “If your pain is not relieved within 30 minutes, please tell your nurse. Our goal is to treat patients with respect and dignity.”

I pointed this out so many times that instead of heading their own policies, they literally changed the sign! They came in and screwed a new sign to the wall, which mentioned nothing about pain care or patient rights.

In August of 2014, before the two events described above, I had my gallbladder removed. I was already on pain medications for chronic pain and I expressed concern to the doctor that my pain after surgery would not be adequately controlled. He said, “Don't worry. You'll get your precious Percocet. One prescription, that's it!”

I was hurt and offended that he was treating me this way, as though I would have an organ removed just to get pain medicine! But, it got worse. As I was waking up from surgery, my eyes were not yet open, and I heard one nurse say to another, “The doctor said she's going to claim she's in pain, but just get her out of here.”

I opened my eyes and declared, “I heard you!” They both grew silent, and pretended that never happened.

This past August, on my 40th birthday, I landed in the ER again. Again, I had severe upper abdominal pain and was told that, “Nothing is wrong, and you will not be given narcotic medication.”

I asked the doctor to look at my liver enzymes. He saw that they were extremely elevated, and gave me a dose of pain medicine. The next thing I knew, the admitting doctor was in the room, telling me that I was “getting what I wanted” and I was going to be admitted. She introduced herself, and then proceeded to verbally steam roll me, telling me that I would not receive pain medications while I was in “her hospital.” She told me that I was already “unnecessarily on pain medicines.”

I questioned her, but she curtly cut me off. “I see that you have a bunch of 'garbage pail diagnoses,'” she said.

I was furious. I asked if she even knew what some of them where, and if she knew better than the doctors from “her” hospital who had made those diagnoses. She rolled her eyes, and continued with her speech on the lack of treatment I would receive while admitted.

I said, “So, I'm being admitted for pain control and further testing, but I won't receive pain control beyond the medications I currently take?”

“That is correct,” she said, her snide attitude seething. I told her that it was my 40th birthday and the last place I wanted to be was in the hospital, but I really wanted some answers. She just stared at me. I decided that I would take my chances, and go home. If this was any indication of the abusive treatment I was in for if I stayed, I wanted no part of it.

I was discharged with a diagnosis of intractable abdominal pain. Three weeks later, I looked at my online medical records, and noticed that my diagnosis had been changed to “narcotic withdrawal.”

Four years ago, I developed a severe kidney infection. I was deemed a drug-seeker by numerous ER's, without any testing for my symptoms. Eventually, a doctor took me seriously, but by then, I was developing sepsis, and my life was in danger. You can read the full story here.

Even during this horrible incident, I was taken off my regular pain medication and was given a tiny dose of IV pain medicine, equivalent to about half of my home medications. The nurses watched me writhe and cry in pain all day and night, until I spent two days in and out of consciousness. They argued with the doctor on my behalf and I argued with him, but nothing changed. I was still supposedly “drug seeking.”

I could go on and on, but I think by now you get the point. Our lives are in danger, on the off chance that doctors may accidentally give medicine to someone who is trying to get high. This is absolutely unacceptable.

Also, I'm not sure how much validity is behind their theory. It seems to me that if someone wanted to get high, buying drugs off the street would be much easier and cheaper. Like most of us who take pain medication to treat our pain, I do not feel any euphoria, just a little relief.

How is this kind of behavior in line with a doctor's Hippocratic oath to “First, do no harm?” It seems the oath is now “First, judge and abuse.”

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of Pain Foundation, as she is able.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Power of Pain: Making a Hospital Stay Easier

By Barby Ingle, Columnist 

Just as you should take a personal medical history to your doctor visits, being prepared for emergency room visits and hospital stays is also a good idea. A safe, smooth visit is exactly what you need when you are a chronic pain patient who is trying to heal or fight an illness.

I have unfortunately been to the hospital too many times now over the past 18 years. In the beginning, I did not go prepared. Nevertheless, through multiple visits, I have found a few things that allow me to get better treatment from the staff. 

For a better hospital stay, I now ask for a room in a quiet part of the hospital, as sharp and sudden noises exacerbate my pain. Most hospital rooms now have their own thermostat, so you can control your own temperature. If your room does not have its own, you can ask the nursing aide to assist with making you more comfortable, such as getting warm blankets.

When I am assigned a roommate, I ask for my bed to be farthest from the door so that their visitors don’t accidentally bump into me, and I can have less interruption with my resting. When possible, before their guests arrive, my husband or I inform them of my condition and how noise raises my pain levels. It is best to explain it to your roommate prior to his or her guest’s arrival so that he or she may explain it to them for better cooperation.

I have also learned to bring blankets and pillows from home. They are typically softer and my quilts are more comforting, both in warmth and as a reminder of home.

Most of the hospitals I have stayed in now offer an air mattress that can be used to adjust the bed to your preference. Comfort should be a big consideration so that you can heal faster.

It is almost unavoidable to not get poked with a needle as a patient in the hospital. They typically check blood at least once a day and use IV fluids to keep you hydrated. Medications are also administered with needles or through your IV. When they are drawing blood or putting in IV needles, ask for pediatric needles because any new trauma can cause RSD to spread to a new site.

If a person takes my blood and I find them to be supportive and cooperative, I have asked that they be the one to check my blood every time during that visit. I even had a nurse who agreed to come in to take my blood, even though she was off duty for one of the days I was in the hospital. I now have a “portacath” – a small catheter connected to a vein. I ask them to take blood draws from it for less needle poking.

While you are asking for better ways to get through a blood draw, have a nurse place a sign above your bed designating your affected limb(s). I had a nurse at the last hospital who put a red bracelet on my unaffected limb and a red sticker on my chart. This served as a good reminder to the nurse and aides as they walked into the room. They see multiple patients on your floor, and as patients come and go often, you want to stay on top of your care. Be your own “chief of staff” and employ the same practices at the hospital that you do with your regular doctors.            

I also bring to the ER and hospital a list of medications. Sometimes I have had to have my own brought in. I think it is good to have my own supply there so I can control when I take them. Otherwise, have the nurse check with the hospital pharmacy to see if they carry all of your medications. Nurses can’t always be there at the appropriate time to administer medications or help with other needs due to an overload of patients. Therefore, if you have your meds available, you can stay on schedule.

I also have found that the hospital has charged me for taking my own medications, even when I brought them from home, although the cost will be less than having them providing you the medication. This can also save you from mix-ups in medications by their pharmacist. When you are on pain medication at the hospital, make sure to not wait until it is worn off before asking for more. Hospital employees often times are taught to order your medications 30 minutes after you ask for them, so it could be 45 minutes or more before they actually arrive to your room from the time you ask for them. Keeping pain low is easier then lowering pain after it has skyrocketed again.                       

Something I do at home is keep items on the bedside table for easy reach and use. In the hospital, I use my tray table to serve the same purpose.  I have it placed in a position so I do not bump into it when resting, but it is close enough to utilize it for my things.  Also, if a nurse moves it to assist me or take blood pressure, I am sure to ask her to move it back into position when she is finished.

Healthcare institutions that are accredited to assess and treat your pain have been mandated to treat pain as the fifth vital sign.  You have the right to be taken seriously, believed and demand pain control. If you feel that your needs are being overlooked or intentionally ignored, ask to speak with hospital administration as soon as possible. Remember to be calm when complaining or they may not take you seriously. 

It never hurts to ask for things that can make your stay more enjoyable and comfortable.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.