A Pained Life: Accepting Help is Not a Weakness

By Carol Levy, Columnist

A few days ago I was walking with my friend, Jean. She had her cane in one hand and a wheeled bag in the other. As we approached the stairs going down to the walkway I asked, "Can I take the bag?"

"Oh, no. I'm fine," Jean said.

No, she wasn't. It was an additional burden to manage the bag, as well as the cane. How silly of her, I thought. It would be so much simpler if she'd let me help her.

It did not immediately occur to me that I had done the exact same thing only a few days earlier, when someone offered to help me.

I have neck and back problems. As a result, I should not be lifting anything heavy, which definitely includes the two 42-pound bags of cat litter I had bought.

I put on my neck brace. Grunting and groaning under my breath in case, heaven forbid, someone should come by and acknowledge my struggle, I pulled the bags out of the car.

Then I took the wheeled little platform I have for moving something heavy or unwieldy, put one bag on it, got on my knees and pushed it to the door. I went back to the car, got out the second bag and repeated my performance. Next I lifted them to get them up and over the door jam. Breathing heavily and already in pain, I readied myself to start rolling them end-over-end, like a Slinky, but going up stairs instead of down, to my third floor apartment.

I rarely see my neighbors but suddenly, out of nowhere, a man appeared. Without a word he picked up one of the bags and hefted it up onto his shoulder.

"Oh no," I said. "That's okay. I'm fine. I can get it upstairs. Thanks anyway."

Luck and kindness were with me, since logic and intelligence were not. He just looked at me and continued to carry it up the stairs to my front door. He then got the other bag and carried that up to my door.

After lifting or carrying something heavy, which sometimes can be merely five pounds or so, I am exhausted. Often I end up having to lie down, sometimes for hours, to get over it. But accept help? Say "Yes, thank you." when someone offers? Oh no. That is a fate worse than death.

What is it about accepting help? Is it an admission of weakness, of giving up control? Is saying, “Yes, I need help” a ceding of independence?

For me, and for my friend Jean, once we talked about it, we realized, at least for us, that is exactly what it is. We prefer to struggle, hurt and harm ourselves rather than accept help. Rather than swallow our false pride.

It is said pride goes before the fall.

We both were silly, preferring to take the chance of a literal fall. We blinded ourselves, unable to see the offering of a hand, and the acceptance of it as a gift -- a gift to the person who offers help when we acknowledge their kindness by saying, “Yes. Thank you.”

It can also be a gift to ourselves, if we see the “Yes. Thank you” not as a weakness or giving up control, but as a strength.

It takes courage to say, “Thank you. I can use your help.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent 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.

My Life with CRPS

By Chrystal Weaver, Guest Columnist

I have been suffering from Complex Regional Pain Syndrome (CRPS) Type 2 for nearly six years. I first got this disease as a result of a botched back surgery called a kyphoplasty.

The bone cement they used was too thin in consistency, which allowed it to travel to my epidural space and kill off most of the axons in my nerves; which in turn caused my left foot and ankle to be paralyzed with indescribable burning pain, electric shock pain, bone crushing pain, and pins and needles pain.

It’s been nearly six years of living hell.

I was 46 when this happened and I was working as a CPA in Florida. At the time, we had pain management clinics in abundance and doctors were not afraid to prescribe opiates. They worked with you to get your dose to the point where it was effective for your individual needs, without causing side effects like over sedation.

The dose of medication I was on took my pain down from a 9 or 10 to a bearable 3 or 4 level. I was able not only to continue to work, but to attend my son’s baseball games, go to the beach with him, take him on vacations and be an active mom.

Then when Florida got all the bad press due to pill mills, and the DEA and state law enforcement cleared out the bad operators, good doctors also got caught up in the net. This had a profound effect on doctors who were using pain medication in good faith and a “chilling effect” occurred. Pain management doctors left the field in droves. Those who remained were unwilling to maintain me on the regime I was taking and that was working for me.

chrystal weaver

CRPS has the nickname “the suicide disease” for a very good reason. It is not curable and there is no effective treatment for the disease. Any medication, narcotic or non narcotic, is prescribed “off label” because there is not one medication approved for CRPS by the FDA. I tried spinal cord stimulation, nerve blocks, Prialt, antidepressants, anti-seizure medication, and acupuncture. I couldn’t bear for my foot or lower leg to be touched, so massage was not an option. I even had high dose ketamine infusion treatment at the University of Miami. All to no avail.

Because of the aggressive law enforcement tactics that shut down the bad operators, the pendulum has swung the other way to the extreme. There were huge unintended consequences in Florida’s efforts to shut down the pill mills. I was taken down to about 30% of the old dosage I was on, which allowed me to work and be a great mom. The new dosage never gets my pain below a level 6.

I ended up losing my job due to poor performance and had to apply for Social Security disability after a 25 year career in the accounting field. I stopped going to baseball games, that my son wants desperately me to see, but I just cannot go. I am now home-bound and cannot perform the activities of daily living. If I did not have a 12 year old son, the pain has been so unbearable I would have taken my life by now.

I do not exaggerate when I say this pain is like being a prisoner of war. It can take the most mentally sound, happy and stable person, and make that person wish that they would not wake up. This should not be happening in the most advanced country in the world.

The saddest part of all is that the government actions did not even solve the problem of people abusing drugs and overdosing. The people that were abusing narcotics have switched to the much easier to obtain and much cheaper heroin. The population that has been greatly harmed by what the government has done is the legitimate chronic pain patients in Florida and indeed all over the United States.

The heavy handed tactics used by our government gained nothing. The people who want to abuse drugs have turned to a much more dangerous substitute, where they have no clue regarding the potency of what they are putting in their bodies, nor do they have any idea of the contaminants they are ingesting. We have traded a decrease in prescription opiate abuse for increased heroin abuse, while leaving legitimate chronic pain patients severely undertreated and in many cases untreated for their pain.

Every person is unique. Cookie cutter recommended dosages do not work for human beings. There will always be outliers on both sides of the bell curve. Some people do well with small doses of opiates and some people require higher doses to bring their pain down to a manageable level.

I understand that the CDC’s prescribing guidelines are meant for primary care physicians. However, it is highly likely that pain management doctors will follow the guidelines as well. Even if a pain specialist were to prescribe doses above the guidelines for patients with diseases that are debilitating painful, it would be impossible to find a pharmacy willing to fill the prescription. We already are having a very real problem being able to fill prescriptions now.

I cannot imagine how much more difficulty chronic pain patients will have accessing their medication should these guidelines go into effect. I cannot even count how many times I have been forced into withdrawal after spending over $150 on taxi fare going from pharmacy to pharmacy, only to be told that they do not have the medication in stock or that they no longer carry that medication. I am a single mother. I have no family living that can help me take care of my son when I lay on the couch in level 10 pain from CRPS and the pain of withdrawal. No one should be made to suffer like this. No one.

I don’t enjoy taking narcotics. I purposely had my baby at home with midwives and no pain medication or epidural because I did not want unnecessary medical interference with what is a natural occurrence. I can take pain. It was my first and only child.

I explored the possibility of getting my left leg amputated below the knee if that would free me from the pain of this disease. But it does not take away the pain and CRPS does spread. It is now in my right foot and lower leg. 

So there is nothing more that I can do medically to treat the pain effectively, except for taking opiates at the dose and combination that was effective for me. But I have no way of obtaining that same dose and combination of short and long acting opiate medications that allowed me to live at a level 3 or 4 on the pain scale. My son needs his mother and for the last 5 years I am still breathing, but I certainly am not living.

I also want to emphasize that there are numerous diseases and conditions that are not malignant, but are just as painful if not more painful than cancer pain. CRPS is listed as a rare condition by the National Institutes of Health, but there are many more orphan and rare diseases whose primary feature is severe debilitating pain with no cure and no real effective treatment.

Alarmists cite an increase in opiate prescriptions without putting it in the proper context. Most baby boomers are in their fifties or sixties now and people are living longer due to medical advances. Sun Belt states like Florida have a higher retirement population than northern states do. Pain was undertreated in the early 1990s before pain was classified as the fifth vital sign.

Alarmists also point to the number of deaths from opiates being over 16,000 annually. But they have no way of knowing if that person intended to take their life or if the death was accidental. 16,000 deaths does not an epidemic make. I shudder to think of the real epidemic that will occur if these arbitrary guidelines are adopted by the CDC. Wounded veteran suicides will dramatically increase, along with suicides from 100 million chronic pain patients in this country. Some will begin to abuse alcohol to try to get relief. I’m certain that some will be willing to break the law and turn to the streets for heroin if they happen to know where they can obtain it.

Pain should be managed as we manage diabetes in this country. You are prescribed the number of units you need to get your blood sugar as close to 100 as possible without causing your blood sugar to drop too low. Pain has been subjective until the advent of the functional MRI. Pain doctors can verify that you are in pain using fMRI.

We would never lock up 100 people in prison if one of them were guilty of murder just to punish the one murderer. But this is precisely what has happened in the treatment of chronic debilitating intractable and incurable chronic pain. In order to protect a small portion of the population from themselves, our government has cast 99 innocent people in prison in order to punish the one murderer.

Drug addicts will always be able to obtain their drug of choice, while chronic pain patients languish in their homes unable to participate in life; waiting and wanting to never wake up because the pain is going to be the same as the day before, just like the movie Groundhog Day.

I was very active and enjoying my life, my career and my son until one medical procedure changed my life forever. Your life can change in a blink of an eye. A loved ones’ life can change in the blink of an eye. Every human being deserves to have their pain managed appropriately. Anything else amounts to torture.

Chrystal Weaver has submitted these comments to the CDC. The public comment period on the CDC's opioid prescribing guideline continues until January 13th.

You can make a comment by clicking here.  The draft guidelines and the reasoning behind them can be found in a 56-page report you can see by clicking here.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

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.

My Journey From Doctor to Chronic Pain Patient

By Lisa Kehrberg, MD, Guest Columnist

I'm a 41-year old family practice physician living in the Chicago area. I worked in private practice directly after residency and then worked for the Veterans Administration in an outpatient clinic the remainder of my short career.

Much of my work involved treating patients with chronic, non-cancer pain. Little did I know at the time, this was more of a training course for me to become the very patient I was treating. 

In 2011, my 39-year old big brother died suddenly and unexpectedly at home. He was a criminal defense attorney living in our home state of Oklahoma at the time. His death was shocking since I was unaware he had any serious medical conditions. Getting his medical records was even more shocking. His physical symptoms were attributed to psychological causes. 

His death was the worst life situation I had experienced. I'd never felt such emotional pain. I also began to have physical symptoms. I had bouts of severe abdominal pain, headaches, vomiting, dark urine, numbness in my hands, and fatigue. 

In 2013, when I was the same age my brother died, I had very severe abdominal pain with vomiting and foot drop. This time the pain was too intense to tolerate and I went to an emergency room. I was admitted and had a CT scan, endoscopy, and a colonoscopy. All of these tests were unremarkable, yet I was getting sicker each day.

Initially, when speaking to the hospital doctors involved with my care, I assumed the diagnosis would be found and I'd receive appropriate care. 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. It was a hot, burning pressure that was like lava and hot razor blades filling up my abdomen. My stomach distended to appear 9 months pregnant.

LISA KEHRBERG, MD

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.

I was shocked and in disbelief. How could my colleagues not believe me? Did they think I was lying? And why would I lie? I had a busy life with two young children, a husband and worked full time as a physician. I had rarely gone to doctors in my life and only taken opioids after the few surgeries I had.

Clearly the doctors didn't listen or believe me, because on day 3 of the first hospital stay, I was discharged home, doubled over in the most excruciating pain ever. I was unable to tolerate even liquids and vomited continuously. At home I never even made it upstairs. I lay on my couch getting sicker and sicker. I was getting short of breath and having palpitations. My pulse was very rapid and blood pressure high.

I went to a different hospital emergency room within 24 hours of discharge from the first hospital. After about a week of tests, the doctors were able to diagnose me with a rare genetic metabolic disease called acute intermittent porphyria.

Before figuring out the cause of my pain, doctors at this second hospital not only listened to me, but believed me. My pain was very aggressively treated the entire time I was there. I was believed, as all patients should be. Time wasn't wasted on judging and all energy went towards helping me.

Eventually I received hemin, which is an infusion used to treat porphyria. I was diagnosed and received treatment just in time and fortunately I survived, unlike my brother. 

Learning to Live with Porphyria

Because the disease had became so severe before being diagnosed and treated, I have permanent nerve damage. I have severe abdominal pain from visceral neuropathy every day. I have also had back-to-back porphyria attacks since 2013. Porphyria attacks are known to be excruciating and a patient experiencing one will normally be hospitalized and get IV morphine.

What happens to patients like me who have back-to-back attacks without a break ever? Do I live in a hospital? I spent the first 3 months of this ordeal hospitalized the majority of the time. I began to wonder if I would spend the rest of my life as an inpatient. But I wanted to live and go back to my life somehow.

The only way to stay out of the hospital is palliative care; treating the symptoms at home. I've been unable to work and spend most of my time too sick to leave my house or do much. The disease is very unpredictable, so it's impossible to plan much. At least I can see my children every day. I survive by putting my energy into loving my children and taking things hour by hour. Just making it through one day is a challenge. 

One of the most common causes of death from porphyria is suicide. This isn't surprising. I always wonder how people who are sick like me keep surviving. To live in continuous excruciating pain every minute of every day with no end in sight is quite the challenge. Now imagine living this way with no pain medication. I will tell you that it's not possible. The pain from this disease if left untreated is not compatible with life.

At that first hospital, I tried to find a window I could open and jump from. I felt like I was on fire. I wasn't depressed. I was in pain. How would someone like me exist in life without pain medication? I couldn't. Impossible. It would be like performing abdominal surgeries on patients without anesthesia. It's so beyond my comprehension how the medical community can have such little empathy for those who are sick, in pain, and disabled. 

My palliative care doctor is wonderful. He has compassion and listens to me. He believes me and doesn't judge. He has saved my life and the reason I'm able to attempt living life and not continuously be readmitted to the hospital.  

Last summer I went to a new doctor who specializes in pain and is a physiatrist. I was hoping he may have some ideas. He listened to my story, then said he couldn't help me since I took opioids. He told me my pain must be "emotional.” He said patients without cancer should not be taking opioids chronically.

I asked him what someone like me can do. I explained it’s like having a blow torch in your colon all of the time and how do you exist that way? He shook his head and rolled his eyes. I left crying.

I still cry when I think of that interaction. How could a physician, a person supposedly trained to offer healing and compassion, treat any human being this way? If I was healthy and was working in the same hospital as this doctor, he would be inviting me to lunch. But because I met him while sick and disabled, I'm judged. No compassion, much less treatment. 

Now that I've entered the world of chronic pain, I've had the opportunity to talk to hundreds of patients suffering like me. The majority have uncontrolled pain. They are forced to jump through many hoops each month just to get the medication needed to offer a little relief. I've talked to many who plan suicide someday, because they are unable to get appropriate pain management. This isn't depression. It's pure physical torture. I can't imagine people needlessly dying because they are unable to get medication to ease their suffering. Medication that's available. These people have children, are someone's child, have siblings, friends, etc. 

Physicians see a patient for 10-15 minute appointments and don't understand that the person’s pain continues after that office visit. Physicians who think opioids shouldn't be prescribed for chronic non-cancer pain are wrong. Ask these same doctors how they plan to treat the pain and you learn there is no plan.

I suspect these doctors don't understand the concept of continuous pain. If a doctor refuses to treat a patient’s chronic pain and that patient commits suicide from pain, then somebody should be held accountable. This is criminal and completely preventable. 

I'm saddened to see what's happening with the CDC's opioid prescribing guidelines. I would really like the CDC to suggest how to treat my severe back-to-back porphyria attacks. Too many doctors are being investigated for opioid prescribing. This is meant to scare doctors not to prescribe. Doctors should be receiving training on how to prescribe opioids and treat chronic pain patients. Doctors who treat chronic pain patients are saving lives everyday. They should receive only praise.

Lisa Kehrberg, MD, is a family practice physician who specialized in pain management. You can read more about Lisa at the American Porphyria Foundation’s website.

Lisa is also featured in this report on Acute Intermittent Porphyria:

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.

8 Tips for Living with Chronic Pain

By Ellen Lenox Smith, Columnist

Getting a diagnosis of chronic pain or any condition that will be with you for the rest of your life is heartbreaking and overwhelming. But when the dust has settled, you have mourned your old way of life and begun to accept the new life you will have to adjust to, there are things you need to think about to make the rest of your journey more productive and peaceful.

 1. End anger and redirect

It is so easy to get stuck feeling, “Why me?” or “What did I do to deserve this?” It takes courage and strength to turn this around, put a smile on your face, and instead learn how to cope with what you have been given.

Awhile back, a doctor’s letter was posted online on what it is like to deal with a patient who has a chronic problem that will never get better. It  was an amazing insight into what goes through a doctor’s mind. They go into medicine to help others and people like us come to them that don’t fit into that box.

Remember, they are human and it will bother them not to be able to fix you. Their compassion is what we need. When a doctor shows through his words and actions they’re trying to find solutions for me, I come home grateful that they care. We can't expect the medical field to fix the impossible - but we also have to live with hope and not give up.

     2. Prepare for appointments

When you go to a doctor’s appointment, we all know there is usually very limited time and if you are not careful, you’ll forget to ask things that are important. Trying to call the office after and asking for an answer to those questions later can be an annoyance for them and is preventable.

Try to go to the appointment prepared. Living with a complicated condition, you owe it to yourself to  be prepared so you stay on point with what needs to be accomplished. To help get ready:

• Keep a list at home before the appointment and jot down things that pop into your mind that you want to address and then take that list with you.
• If you have a lot to cover, consider making a second appointment to cover the rest.
• Arrive with your medical cards and co-pays.
• Have a list of your current medications, dosages and supplements.
• Have a list of any medications you have reacted to.
• Have contact information of other doctors treating you.
• Have a list of past surgeries and important tests and the date and location of where they took place.

I keep my medical records on file so I can refresh it with information such as new medications, tests, surgeries, etc. and make sure I keep a copy in the car in case of emergencies.

3. Be willing to think out of the box for solutions

As you accept a long term health issue, another thing you want to consider is keeping an open mind. New ideas, tests, treatments are always happening. Try to think out of the box and if something can’t hurt you but just may help you, consider giving it a try!

4. Learn to put things to rest that are out of your control

You are already fighting with your emotions coping with a chronic condition. At some point, it is helpful to learn to let things go that are just out of your control. You didn’t ask for this condition, so why remain angry?

Your life will never be the same, so try to find peace and redirect towards more reasonable and productive activities. Maybe you had to step away from your career, but there could be something new you can take on to supplement your income. Or maybe you can find a good opportunity to advocate to help others coping with a similar condition.

5. Patience and more education

We have to learn to accept, although it is frustrating, that not all doctors can possibly know how to address all of our difficult conditions. Take this issue and help to make the changes needed. Consider speaking out by educating those that are trying to help you and those that have no knowledge. Possible suggestions:

• Take copies of helpful information to hand to them and ask them to read
• Ask to speak to staff, young medical students, nursing students, or physical therapy students
• Set up awareness tables at local events
• Write letters to the editor at local and national newspapers
• Call your congressman for suggestions
• Set up a pain awareness event to help educate others and bring in a guest speaker or panel forum

Be proactive and help with the much needed education, so the next person in line with what you are facing has an easier road to follow!

6. Start a support group to help others – not to just sit and complain

Along with educating the medical field, you also need to think about a support system that can help others like you in the community. We have set up a site where we list willing doctors that will take our difficult cases, brought speakers into our support group, and shared with each other to try to soften the journey we are on.

Try to prevent the group from using it as a format to complain and whine, but instead use it to educate and help direct each other.

7. Prepare for a hospital emergency

This topic was approached by Barby Ingle in a recent column, Power of Pain: Making a Hospital Stay Easier.  I encourage you to read it. There were many helpful tips suggested to prepare for the possibility of an emergency visit and also for a planned surgery.

We are responsible to know about us and share our information, so think to prepare this while you are alert and able to be as complete as possible. And share with someone where you keep this list. I always keep a copy in the car to be safe!

8. Be grateful to those that reach out and try to help

A person living with chronic pain becomes a host of many issues and that can be overwhelming for others too. So when someone reaches out and cares about you and tries to help in any capacity, remember to count your blessings.

We have all experienced some close friends, family and even medical personnel that have chosen to step away instead of embracing us. It is painful to experience. So when you meet anyone who is kind to you, remember to focus on that and try to let go of the hurt from the others.

We don’t need to add any more stress to our lives, feeling let down and disappointed by those others. And believe me, it is easy to write this and harder to follow. Look and treasure those that come into your life due to your circumstances and try to not look back!

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.

Communication is Key with Chronic Pain and Illness

By Jennifer Martin, PsyD, Columnist

Have you ever felt like the people in your life have no idea what you are going through?  Like they just don’t get it?

Your friends keep asking you to go out with them for a late night, even after you have told them a thousand times you can’t do things like that anymore. 

Your husband doesn’t understand why some nights you just don’t want to be touched. 

Your parents don’t get why you can’t do 10 things per day like you used to.

The truth is, unless it happens to them, your loved ones will never fully understand what you are going through.  And you can’t expect them to.  There are some things you can do however to try and ease some of your frustrations.  In my opinion, communication is key.  And if you are thinking right now, “All I do is communicate and they still don’t get it,” then maybe it is time to try a new tactic.

It is essential to find a way to communicate with your loved ones about your wants and needs. This is so essential because everyone’s wants and needs are different and we as humans are not mind readers. 

Your loved one may think he is helping you when he does the laundry so you don’t have to, but for you that may not be something you want help with.  It may be the one activity you can do without pain and it may help with your sense of purpose. 

Or you may want your very active family to slow down a little because you can’t keep up anymore without pain and exhaustion.  But you haven’t told them yet because you don’t want to change their way of life on account of you.

How are the people in your life supposed to know these things unless you tell them?

Or maybe you have tried to communicate these things and they just don’t get it.  What do you do then?

The first step is to find the right time to communicate.  Over drinks in a loud bar or right before bed when everyone is tired may not be the best time.  Find a time to have a sit-down conversation in a quiet room with your loved ones, whether it is one person at a time or all together.  Think about what you want to say beforehand and write down some notes, so you make sure to talk about everything you want to.

Next, if needed, educate them a little on your condition and how it affects you.  You may be surprised by how little people know about chronic illnesses, even those closest to you.  They may understand the basics about your condition, but not enough to help you in the way you need them to.  They may not understand how dramatically life has changed for you or how much you struggle.

Finally, talk to them about how they can support you.  Tell them what you want from them and what you need from them.  Mention some of the things they are doing that are very helpful and that you would like them to continue and then help them understand what you need them to do differently. 

For example: “It is really nice of you to help me with the laundry but that is something I would like to do on my own.  It gives me a sense of purpose and makes me feel like I am accomplishing something.  Instead, I would really like for you to help more with the dishes.  That is more difficult for me to do and it really hurts.”

It may take more than one conversation for your friends and loved ones to really begin making the changes you would like.  But if you keep gently reminding them what you want and need, it is likely that you will see some changes.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California who suffers from rheumatoid arthritis and ulcerative colitis. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases, as well as other types of chronic pain.

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: Growing Older with Chronic Pain

Barby Ingle, Columnist

I am another year older. At 43, I should be in my prime, but I live with chronic pain. Chances are I passed my peak health on the proverbial mountain and am headed back down when it comes to my health.

My friends are getting older as well. I hear more complaints about painful knees and hips, backs, and breathing difficulties. Those are common symptoms among older adults, with about 30% of adults 65 and older reporting knee pain or stiffness and 15% reporting hip pain or stiffness.

There has to be a way to lessen the blow of growing old, even for those of us with chronic pain. Although they are not taught well in society, there are actually life choices we can make that will lessen the pain and limitations.

Where should we start? Exercise is a good place, but don’t overdo it. Good eating habits are essential, but remember to splurge a couple of times a month. Increase your water consumption too, unless advised by a healthcare provider to limit fluids. Another challenge for me and probably you is getting enough sleep.

There has to be a way to lessen the blow of growing old, even for those of us with chronic pain. Although they are not taught well in society, there are actually life choices we can make that will lessen the pain and limitations.

Where should we start? Exercise is a good place, but don’t overdo it. Good eating habits are essential, but remember to splurge a couple of times a month. Increase your water consumption too, unless advised by a healthcare provider to limit fluids. Another challenge for me and probably you is getting enough sleep.

Posture is another area. When we are young we see the elderly hunched over. When we are in pain we tend to do the same tuck and comfort position. If you pay attention to your posture, it will be a great benefit to staying upright and breathing deeper, providing more oxygen and helping maintain a healthy body weight.

Living with all of this in mind is difficult, but important. The goal should not only be to live a long, happy and productive life, but do it well. Moments of prevention, especially in our youth and young adulthood, can add up to additional life experiences that you would have missed. Work on your strength (physical and mental), moderate your lifestyle, and practice balance, endurance and flexibility skills.  

I have to remind myself to take a break. Even if I can’t sleep, I go into a quiet dark area and let my brain have a break from all of the stimuli in our environment. Living with pain is a pain in itself, but luckily for us there are safe and effective ways to manage it. It is important to learn what is available and what we need to make available for better daily living.

Aches and pains are NOT a normal part of aging. If we learn how to recognize our bad behaviors and practice better ones, we can overcome many of the battles of growing older with chronic pain. Learn how to recognize, understand and properly treat your pain.

This takes a little work to get started, but once it becomes habit, it gets easier and easier. Be sure to use the resources available to you: providers (develop a team), pharmacists, caregivers, positive people, local churches and community centers. One of the things we did for my mother before she passed was get local high school kids to come in and check on her, and help her with tasks that needed done around her house. Many high schools now have mandatory volunteer hours for graduation. Check your local resources, support groups, and community groups for tools you can use to better your life.

When pain lasts for more than a few months it usually has an underlying disease that is the cause. For the elderly, two widespread causes are diabetes and arthritis. Both can be warded off with proper care throughout the life cycle. If you find yourself already in pain while reading this, it’s never too late to start. It is important to pay attention and admit that you are feeling bad. The sooner you take care of yourself the better your outcomes will be over time.

Working on the core lifestyle actions; posture, nutrition, good behaviors (limited or no smoking/drinking), and exercise will go a long way when it comes to prevention and maintenance of your body.

Also take into consideration what treatments you are willing to participate in. Doing noninvasive treatments first, unless in an acute health situation, is important. The less stress and trauma you bring to yourself the better off you will be. Some noninvasive options would be warm baths, relaxation, moderate physical activity, or non-prescription pain relievers.

Always let your providers know if you have a change in the pain’s location, intensity, and sensation. Be sure to rule out any other underlying causes. Providers may also try medications, herbal or supplemental products, medicated lotions, acupuncture/pressure, chiropractic, massage, physical therapy, occupational therapy, nerve blocks, radio frequency ablations, and other surgical procedures. As a pain patient I have learned that we are all different, what works for me doesn’t always work for my best friend, or even family members who suffer with chronic pain.

I will leave you with some important pain facts for the elderly. If a person has pain, even at the end of life, there are ways to help. It’s best to focus on making the person comfortable, without worrying about possible addiction or drug dependence.

Many older people have been told not to talk about their aches and pains because it is a part of getting older. But it is not a given that since we are getting old we will have pain.  Don’t put off going to see a doctor because you think the pain is just part of life. Early and proper care is best when working to address the pain and its cause.

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 and the International 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.

Medical Necessity or Addiction?

By Lisa Davis Budzinski, Guest Columnist

All of the issues surrounding the CDC’s opioid guidelines and opioid pain medication being compared to heroin are quite stressful to those of us who are disabled and seeking quality of life on a daily basis.

Does everyone understand that there are “healthy” people that take prescribed medications just to deal with life?

That there are young adults who experiment with prescription meds that were not prescribed to them by a doctor?

That there are people who buy on the street the same prescription drugs that we use?

And that there are people who get injured but heal and no longer need pain prescriptions?

We all see the abuse and misuse of pain medications, but what about those of us who will not or cannot ever heal again? It’s one thing to break a limb and know you are going to heal up in 6-8 weeks. But what about those of us who are not ever going to heal? 

I had a stroke that damaged my central nervous system, leaving me with Central Pain Syndrome, a neurological condition that causes constant pain. There is no cure and few treatments help. I do not have a diagnosis of being better a few months down the road. And I’ve had to come to the realization that I will have pain every day of my life.

I can have some quality of life and get the pain scale down to a 6-7 by taking Tramadol daily. Using Robaxin keeps my muscles from stiffening up or being spastic every hour of every day. I also take Zoloft because it has been clinically proven to help ease chronic pain and to work in conjunction with my bio-identical hormones.  

What about my husband, who suffered a horrible accident 35 years ago that damaged his right lower leg beyond repair? What about his daily pain levels from his shin bone that stays broken from bone infections?  Why shouldn’t he have quality of life on a daily basis? His leg will never heal and it will never stop causing him pain.

We aren’t taking prescription medications that makes us sit and drool, or knock us out without knowing what’s going on around us. We take medications so we can be alert and live daily life the best that we can while we are here.

No one can imagine a life of chronic pain that will never go away until they live it themselves. We are not talking about pain that comes from getting a scuffed knee or elbow. We aren’t talking about pain that comes and goes like indigestion. We aren’t talking about the pain of creaky joints that comes from getting older, although we have that as well.

Why must those of us who struggle to live a quality life be ridiculed and ruled by government agencies that do not even deal with these issues? Shouldn’t that be decided by our medical doctors who have put in years learning their profession? Who took an oath not to harm us but to help us?

It’s not logical to compare a prescribed pain medicine to heroin or any other illegal drug you can buy on the street.  

We are living a life of “medical necessity” and not one of addiction. We are law abiding citizens that just want quality of life.

Lisa Davis Budzinski is a cancer and stroke survivor who suffers from Central Pain Syndrome.

Lisa is a delegate to the Power of Pain Foundation, Vice President of the Central Pain Syndrome Foundation, and author of "At The End of The Day."

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.

Give and Take Needed on CDC Guidelines

By Fred Kaeser, Guest Columnist

I wish we could all get along. Millions of people in chronic pain usually need opioids in adequate supply in order to manage their day and have some semblance of a quality of life. At the same time, tens of thousands of people's lives are destroyed, ruined, and ended each year from the very same drugs we pain sufferers find comfort from.

Looking objectively at the situation, there needs to be humane action on both sides of this conundrum. Whatever the result of the CDC's new prescribing guidelines, people in chronic pain must not be denied adequate access to opioids when absolutely needed, and yet some action needs to occur to reduce the outrageous rates of opioid addiction.

Think of what has happened in 15 very short years. We have gone from thinking that long term opioid use should only be provided for end-of-life care; to thinking that it is appropriate and acceptable to provide opioids on a regular basis for a myriad of pain causing illnesses and syndromes; back to thinking they are too dangerous and should be sharply limited. All within a 15-year period.

Yes, opioids reduce pain, just what all of us pain sufferers want. And yes, opioids destroy lives, something none of us want.

The truth is there have been no studies of long term opioid usage. And we know very little about just who is more prone to succumbing to the addictive aspects of these drugs once they are used for any length of time.

I do think there has got to be some give and take on both sides. The CDC has to understand that many, many chronic pain sufferers do indeed improve the quality of their lives by taking opioids. And I do think that we pain patients have to show a good faith effort that we are doing all we can to mitigate our pain through alternative pain treatments.
If you look at the CDC survey results attached to this website, you will see that almost 100% of pain respondents report little or no relief from alternative pain strategies. Over half of us say alternative strategies don't work and over a third of us say that they provide little relief.

Yet, if one explores the rich empirical research that exists on exercise, yoga, mind-body techniques like meditation and guided imagery, and their various permutations, we see that they can have a profound effect on reducing pain and discomfort. There is a huge body of research that supports just how powerful of an effect these modalities can have on reducing pain. Yet, almost all of us say they have little if any effect.

So, how can this be? I can only speak for myself, but when my pain started to become constant and severe I too did not think any of these alternative techniques were worth it. The time, energy, and sometimes additional pain that went in practicing them just didn't seem worth it. After all, I could find significant relief in 20 minutes or so just by taking 10 milligrams or so of oxycodone.

So why go through all that other stuff when I could be feeling relief in less than a half hour? But as my pain became every day, all day, I decided that I wasn't going to walk hand-in-hand the rest of my life with a drug that could very easily do more harm to me than the medical condition I was taking it for.

Days, weeks, and months went by of every day hard work. Exercise, stretching, yoga techniques, learning different meditation strategies, etc. were not easy. Amazingly, none of it cost much in terms of money, but the cost in terms of energy and time that went into practicing them was considerable. BUT, there came a time when it all started to pay off.

The research is correct: alternative pain techniques do work. Maybe not for YOU, but enough so that many of us could be finding significantly more relief than just from our medication. And it doesn't necessarily mean that we still don't need pain medication to get through our pain, but it will likely mean we'll need less of it.

I do think this is what is needed. Some give and take from both sides of the equation.

Fred Kaeser, Ed.D, has suffered from back pain, osteoarthritis and other chronic conditions for most of his life. He recently wrote a column about how he uses exercise to manage his pain.

Fred is the former Director of Health for the NYC Public Schools. He taught at New York University and is the author of "What Your Child Needs to Know About Sex (and When): A Straight Talking Guide for Parents." Fred enjoys exercising, perennial gardens, and fishing.

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

Finding the Right Strain of Medical Marijuana

By Ellen Lenox Smith, Columnist

As a medical marijuana patient and caregiver since 2007, I would like to share some thoughts and observations about a recent survey by Care by Design, a medical cannabis company based in California.

They surveyed 621 patients who had been using medical marijuana for over 30 days, asking them about:

1. The conditions for which they are taking cannabidiol (CBD) rich cannabis

2.  The ratio of CBD-to-THC (tetrahydrocannabinol) they are using

3. The impact of CBD-rich cannabis therapy on their pain, discomfort, energy, mood, and overall well being

I would like to address three areas about the survey findings, based on my personal use of medical cannabis and the patients we assist as caregivers.

“Patients with psychiatric or mood disorders and patients with diseases of or injuries to the CNS (central nervous system) system favor CBD-dominant cannabis therapies,” the survey found. “Patients with pain and inflammation favor CBD-rich cannabis therapies with more equal levels of CBD and THC.”

I have to agree with this personally and also through observation of the people we have helped find their correct medical marijuana strain. I now sleep better at night using a night oil made with a high CBD ratio. I found that when I used another strain that has a higher THC ratio, I experienced some strange head sensations that I did not enjoy. But when I use the higher CBD mix, I do not experience those odd sensations and can safely get out of bed without concerns.  

One patient, who has numerous medical issues including depression and post-traumatic stress disorder (PTSD), has found she does well mixing a day sativa plant with the highest CBD plant we have (24% CBD/1% THC) called ACDC. She uses this mixture both day and night and finds it addresses her levels of pain more effectively. Just using the high CBD strain does not address her pain.

Another patient, a scientist, was just thrilled switching to the new high CBD plants we grow. He has found that his mood is calmer and his PTSD is under control. He is a thriving, productive worker again with no negative side effects

I correspond with many people online and one person who uses legally pure CBD found that it did address her pain. Many will not be that successful with just pure CBD and most need some THC to address pain.

The Care by Design report also states that “THC matters. A higher ratio of CBD to THC does not result in better therapeutic outcomes. Patients using the 4:1 CBD-to-THC were the most likely to report a reduction in pain or discomfort, and improvements in mood and energy.

“Patients using the 2:1 CBD-to-THC ratio reported the greatest improvement in overall wellbeing. This finding is consistent with scientific research indicating that CBD and THC interact synergistically to enhance one another’s therapeutic effect.”

I have to totally agree with the above statement. Most will not be lucky and find success without some THC in their medicine.

People tend to have a negative attitude towards THC because it makes them high and think medical marijuana strains work better without THC or lower ratios of it. But we have not had one patient that just uses the highest CBD plant alone. They appreciate the fewer “head issues” that come from reduced THC, but quickly find that their medical problems are not being addressed successfully until they use a mixture with more THC.

Finally, they survey report states that, “CBD-rich cannabis’ does not appear to have a significant impact on energy levels (as compared to pain, discomfort or mood).”

I am living proof of that, as are all the patients we have worked with using medical marijuana. When I need a boost on a tough pain afternoon, I find vaporizing or using tincture from the high CBD plant does not provide an increase in energy. However, when I use the 2:1 ratio that includes more THC, I not only get pain relief but also increased energy and interest in being involved with life again.

As the study found and we have found, you still have to experiment with dosage and ratios to find the correct type of medication strain to successfully alleviate your issues.

Using medical marijuana will never be like it is going to the pharmacy. One pill does not fit all and one strain does not fit all. No single ratio is right for all people, even when dealing with the same conditions.

Ellen Lenox Smith 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 or to contact the Smith's, 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.

Medical marijuana is legal in 23 U.S. states and the District of Columbia, but is still technically illegal under federal law. Even in states where it is legal, doctors may frown upon marijuana and drop patients from their practice for using it.

Don’t Blame CDC for Poor Pain Care

By David Becker, Guest Columnist

Doctors have been undertreating and mistreating people in pain long before the Centers for Disease Control and Prevention (CDC) started recommending guidelines for opioids. Doctors have been doing such since at least the 1970’s.

The CDC doesn't tell doctors to provide half the pain care to blacks and Latinos that white folks obtain -- they do that all by themselves.

The CDC doesn't tell doctors to misdiagnose migraines, interstitial cystitis, RSD, fibromyalgia, and Lyme disease -- doctors do that all by themselves.

The CDC doesn’t tell doctors to tell elderly people that they should be in pain or that children’s pain is inconsequential -- they do that all by themselves.

The CDC doesn't tell pain specialists to ignore marijuana or triptolides or triterpenes or deoxy glucose or intrathecal hydrogen or stem cell therapy for pain -- doctors do that all by themselves.

Doctors were sold on the idea of using opioids for pain because pain specialists were connected to opioid manufacturers, as Sen. Grassley’s Finance Committee ascertained.

What they could have and should have done is require all doctors to have adequate education in pain care and make the best use of all pain treatments for people in pain. Doctors were so averse to having education in pain care that even after the FDA required drug manufacturers to provide free education on opioids, less than 20% of doctors obtained such.

Once doctors have complete education in pain care, then they can be held to a higher standard, and obviously they are opposed to such. Even the pain specialty organizations that allegedly care so much about pain patients didn't support legislation in New York state requiring doctors to have education in pain care.

Poor pain care in any nation is not merely a function of providing opioids or not. That is the reductionist thinking medicine and pharmaceutical companies have promoted. And how often do you see those same organizations promote the use of marijuana or the full use of all resources to treat pain? How often do they even mention stem cell therapies or stacked therapies or treat to target?

The CDC is essentially no different than the FDA, National Institutes of Health or pain specialty organizations -- or the 80 so-called experts that created the National Pain Strategy to essentially promote a simplistic one-size fits all approach. They care little for the input or needs of individuals in pain.

Until individuals in pain have more rights and a greater say over their care, doctors, pain specialists and the CDC will continue to impose their visionless plans on the public and patients.

Too many individuals in pain remain stuck in a Kafkaesque theater of the absurd pain care system with big brother calling the shots. Frankly, to accuse the CDC of being the bad guy misses the fact that too many other organizations in the health care system and in government have done a poor job of caring for individuals in pain.

Without the CDC or with the CDC, pain care will remain poor until real reforms are made in the whole pain care system.

David Becker is a social worker, patient advocate and political activist in New York.

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.

A Pained Life: Time for a New Direction

By Carol Levy, Columnist

I keep reading comments and articles from those who live with chronic pain, or care for a pain sufferer, decrying the lack of treatment for chronic pain, and what is going on in the academic and regulating communities regarding opioid prescriptions.

It seems to me there is a major component missing: the term “chronic pain,” even if it is a disease unto itself, is a disputed theory and possibly a term in search of a meaning.

I am not a doctor or medical person. I am merely someone who has lived for decades with chronic disabling pain.

Some surgery worked, but most did not. Medications, including opioids, worked somewhat, slightly, or not at all. One reaction to the drug that worked best, a precipitous rise in my white blood count, was so potentially harmful I was told never, ever to take it again. So where does that leave me?

Where does that leave any of us when all the various medications do not work or we are unable to take them?

More importantly, where does it leave the pharmaceutical industry, particularly in terms of research and development?

Why do we keep seeing newer forms of opioids at the same time they are being denounced as evil and the cause of the "painkiller epidemic"?

Why condemn opioids when it appears no other drugs, with different forms of action against pain, are being created or brought to market?

There are drugs for the various miseries that cause pain, such as multiple sclerosis, lupus, trigeminal neuralgia, rheumatoid arthritis and so on. The one commonality is they all cause chronic pain, but the pain is not a common ancestor, if you will, that links them altogether.

So why should all of us benefit from one specific drug?

Is there ongoing research to try and isolate a pathway, a chemical release, or a biological, neurological, and anatomical mechanism that may be specific to all the disorders that cause chronic pain? I don't know. I do know that if there was, I’ve never heard about it.

Craziness is defined as doing the same thing over and over again and expecting a different result.

We keep banging our heads against a wall, crying out: stop regulating, stop calling us addicts, stop saying that opioids are crutches and of no real help.

I think it would help our cause much more if we did not focus on opioids or the problems we have getting prescriptions written and filled.

Instead, I think we need to redirect our energies and demand that research be devoted to finding non-narcotic pain relievers that have the same level of benefit that many opioids offer in reducing the pain.

Opioids cannot be the only answer.

Our voices are ignored when many of us say we hate the feeling of being narcotized. We need and want drug options that do not leave us feeling cloudy, cotton mouthed, and detached.

Only the pharmaceutical industry can change this. I believe that is where we need to direct our energies.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

How to Survive the Holidays Without Burning Out

By Elizabeth Katherine, Guest Columnist

My husband and I are very social and we love just about any reason to get the people we love together in a room, and the holiday season is great for that. But it can also be really hectic.

The thing I hear more than anything else this time of year is “I have so much to do.” As a chronic pain sufferer, I know daily life can be overwhelming, and when you throw in all the extras of the holiday season it can get real sticky real quick.

As a mom of three kids and an exceptionally busy husband, I often take on the household responsibilities as well as the additional tasks of holiday prep.

When my pain got to be an all-day everyday thing, I was heartbroken at the thought that these kinds of events wouldn’t be able to happen anymore, or that I wouldn’t be able to produce the kind of holiday that my kids were used to and I was used to.

Pelvic Congestion Syndrome causes me to have constant pain in my pelvis as well as my low back that gets worse the longer I am upright. As I have gotten to know my body and my limitations, I have been able to tailor the way I navigate the holiday season without burning myself out too much. I’d like to share some of my ideas with you all.  

The biggest piece of advice I can give you is to start with lists. Lists are the best thing that ever happened to those of us with brain fog and fatigue. Make a list of all the things you’d like to have done in order to prepare for the holidays. Create gift lists that layout who you’re buying for, and what’d you like to get them.

You can also avoid having to run out for that extra carton of eggs by making a list of the things you’d like to make for holiday meals and the ingredients you will need to make them.

Once you’ve laid out the what, it’s time to plan out the when. This is huge for us Spoonies because we have limited resources when it comes to getting things done. Sit down with your calendar and look at when you have free time. Schedule time to do your baking, household decorating, any parties you’d like to attend, and of course, time for gifts.

Make sure to schedule your rest time too. If you schedule in a 1-2 hour shopping trip, be sure that you also schedule yourself for some time on the couch or a movie afterwards.

Gifts are one of the biggest time sucks this time of year for anyone, but for those of us in the pain community it’s even worse because it involves so much shopping. If you haven’t yet, become familiar with online shopping, consider a membership to websites that offer discounts and free shipping such as Amazon Prime or Overstock.com. Utilizing this will cut down on the amount of time you need to spend out, plus, it’s a nice way to feel productive when you’re stuck on the couch.

If you enjoy the activity of shopping like I do, make sure you schedule a few different trips for that as well. Instead of running from one store to the next, map your plan out ahead of time. Make a list of the things you know you can get at each store you want to go to so you don’t waste your energy bouncing all around for one or two items. Consider pre-shopping online to see what colors and sizes the stores you are going to have in stock so you’re not disappointed when you get there.

Once you’ve got your gifts, you can use some of your resting time to wrap them. If you need help with this project, make it a social activity and invite a friend over to help with tape or scissors. This is also a good way to get any holiday crafting or homemade gifts done. Just don’t invite the person you’re making the gifts for!

Another way to get your to-do list done for the holidays is to delegate like a champ. Ask your spouse to move the decorations out from storage, and put the kids to work decorating the tree. You can curl up on your couch and watch it all while sipping hot cocoa and still feel involved. Or, if you prefer to do it all yourself, break it up into small bursts so that you don’t get too drained doing it all in one sitting.

My last piece of advice is to remember the reason for the season. It’s easy to get caught up in the craziness of it all, and even more so to look at all the things you can no longer do and feel frustrated.

At the core of it all, the holidays are about spending time with loved ones, and the intentions behind your choices are what matter the most. The people who love you aren’t going to care if you didn’t bring fruit cake to the party, even though it was your turn. The people you spend your time with during the holidays are the people who love you, chronic illness and all.

Elizabeth Katherine lives in Minnesota with her family. She writes about Pelvic Pain Syndrome and other topics on her blog, These Next 6 Months.

Elizabeth also enjoys the Facebook support group Spoonies for Life.

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.

Wear, Tear & Care: The ActiPatch

By Jennifer Kain Kilgore, Columnist

Loyal readers, I have returned.

It’s been a tumultuous month of bad days and flares, so while I was absent from my writing duties, I was trying out a hodgepodge of products designed to offer pain relief.

Naturally, none of them worked. Let’s discuss.

A while ago it was suggested that I try the ActiPatch. I was originally introduced to this new form of pain product by Lil’ Bub, the celebrity cat.

I should probably explain that.

Lil’ Bub, full name Lillian Bubbles, is a perma-kitten, meaning that she will retain her kitten-like characteristics for her entire lifespan.

She also has an extreme case of dwarfism and a rare bone condition called osteopetrosis (the only cat in recorded history to have it), which causes her bones to become incredibly dense as she grows older. This causes pain and difficulty when she tries to go from Point A to Point B.

Her person, called the Dude (like Jeff Bridges in “The Big Lebowski”), discovered the Assisi Loop, which is designed to treat pain and inflammation in pets. The device uses targeted PEMF technology (or pulsed electromagnetic fields) to induce healing within the area of the plastic “loop.”

IMAGE COURTESY LILBUB.COM

Before starting her treatment, Lil’ Bub was becoming stiffer and less mobile.  But two years of therapy later, she's running, jumping, and acting like any other cat.

Fast forward to the present day and the explanation as to why I am talking about a cat. ActiPatch is the version of this for humans. I received a letter and package from the president of BioElectronics that contained a thick wad of research and loops for my back, knees, and muscles/joints. I tossed the ones aimed for knees to my husband and kept the rest for myself. Because I’m selfish.

The ActiPatch loops manipulate the body by means of electrical signals, much like TENS devices. The field created within the loop “induces an electrical field in the target tissue,” as  Andrew Whelan stated in his letter to me. These fields affect nerve fibers and cellular function by increasing blood flow and decreasing inflammation, thereby reducing pain.

Additionally, as Mr. Whelan said, the field is “periodically amplified by the background energy within the target tissue, a process called stochastic resonance.” This is when unpredictable fluctuations, or “random energy,” cause an increase in the signal transmission.

During their “Try and Tell” rollout campaign in the U.K. and Ireland, more than 5,000 responded to a survey of trial devices that were sent to interested individuals for only the cost of postage. The company claims there was a “consistent response” of 52 percent reporting sustained pain relief.

Back in my world, I encountered a few problems when trying out the ActiPatch. My pain, as I have mentioned before, is both widespread and diffuse. There are specific areas of genesis, but the pain is by no means contained to just my spine. I have injuries to my cervical, thoracic, and lumbar spine, but the sections with the “loudest” pain tend to be my shoulders, the sides of my neck, my ribs, and my low back. These loops, which are only about the size of a small plate, could not possibly reach all these spots. I’d look like a rubber band ball.

During my trial run, I decided to place the loops both in the “genesis areas” (IE, over my spine directly) and on my shoulder blades. Getting the loop to fit over the curve of my trapezius muscles was difficult. The loops came with a box of Band-Aid-like stickers to hold the loops in place, and I made quite the mess attaching all of them to my skin. Once the loops are placed, however, you simply press a button on the little magnet, a green light comes on, and off you go.

I pulled my shirt on over everything and encountered another issue: the green lights of the loop batteries showed through my shirt, as did the loops themselves. I looked like an undercover informant with poorly-hidden wires. The mafia would surely figure me for a rat. The solution: many layers!

The day I chose for my test run was a normal weekend day. I hadn’t planned anything strenuous and no activities were going to be out of the ordinary. I didn’t wear my Quell, and I also left off the roll-on Stopain that I usually slather on every day. I wanted a day where I could control the variables in order to test the efficacy of the device. My husband and I ran our weekend errands and then decided to take a short walk out in nature. 

My first observation: I did not feel anything from the devices themselves. Others who have used the ActiPatch have told me they felt the sensation of heat within the area of the loops. I didn’t feel anything. I have decreased sensitivity in many areas of my body anyway, so that was not surprising. Additionally, the ActiPatch website states that there will be no sensations.

My second observation: The areas outside of the loops hurt more than normal. I don’t know how good the devices are at affecting areas other than what is in the confine of the loop. The space within those circles felt like a black hole, which is better than pain. While something was definitely going on in the loops -- when I took them off at the end of the day, those areas were red, appearing almost sunburned -- I don’t feel like it helped my widespread pain to any significant degree.

My third observation: I ended up crashing far earlier than normal. By early afternoon I was in my recliner and taking heavier medication.

My hypothesis: The ActiPatch device is probably great for somebody with an injury that is clearly restricted to a certain area. For instance, my husband hurt his knee while running. The loop would be able to focus on that since the pain does not radiate out all over the body.

For somebody like me (an anthropomorphic bruised banana), the loops are far too small. I would need a hula-hoop-sized device in order to make a dent in my daily pain.

J. W. Kain is an attorney in the Greater Boston area who also works as a writer and editor in her spare time.  She has chronic back and neck pain after two car accidents.

You can read more about J.W. on her blog, Wear, Tear, & Care.  

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.