by Heather Grace, IPJ Staff Writer

Do you live with severe persistent pain? Have you been diagnosed with a serious pain-related illness like Complex Regional Pain Syndrome, Ehlers Danlos Syndrome or Adhesive Arachnoiditis? Has your pain graduated from chronic to intractable? Is it difficult to treat?

For the vast majority of pain patients, it is hard to find — and maintain — good pain management. And, it seems to be getting worse year after year. There are many issues that stand in the way of good pain care. One of those issues? The long-standing myth that doctors are at the mercy of patients to tell them about their pain. Why would pain be any different than any other serious illness? As you will learn in this article, pain is surprisingly similar to other chronic, debilitating diseases.

Pain: Subjective or Objective?

It has long been believed that pain is a subjective complaint, meaning that only the patient can really tell you what is going on. Surprise… That’s simply not true! Forest Tennant MD DrPH, an Intractable Pain specialist for over 40 years, used what he learned in his practice to help patients with many different illnesses that cause chronic and intractable pain. And, he’s also spent much of his career helping other physicians better understand pain. In fact, he’s written over 400 articles on pain based on his research as well as his experience with severely ill patients. In a groundbreaking 2008 paper, Dr. Tennant highlighted the signs of severe pain.

Yes, you read that correctly… There are specific diagnostic criteria that a doctor can use to identify and treat pain sufferers, just as they would diagnose any other illness. Pain does indeed have objective signs!

Sadly, the majority of doctors still don’t know this is possible. It’s perhaps the greatest flaw in the curriculum at medical school. Pain is simply not a focus of their study. Despite the fact that pain is one of the chief complaints patients have when visiting their physician, most doctors just don’t have enough training in its diagnosis and treatment. And, this is one of the many reasons pain sufferers are not getting the care they desperately need.

So, what can we do to help doctors understand the plight of the pain patient? It’s simple, really. This information must be spread, far and wide. Whether you are seeing your family doctor, an orthopedist, a pain management physician or any other medical professional, please help them further their education on pain: provide them with Dr. Tennant’s ground-breaking paper! It’s time that doctors realized that pain is something that can be objectively diagnosed. All you need are the right tools. Here they are! From the article:

Using Objective Signs of Severe Pain to Guide Opioid Prescribing.

Pain Treatment Topics, June 2008.
by Forest Tennant, MD, DrPH

Get the PDF: Objective Signs of Opioid Prescribing

How do doctors ensure they are treating only true pain sufferers? Thankfully, there are many ways to tell. Using the signs in the enclosed, and demonstrated below with my case as the example, medical professionals can distinguish between drug seekers and relief seekers. According to Dr. Tennant, severe pain “produces more objective physical evidence of its presence than does the average case of diabetes or coronary artery disease.”

Persistent pain that is either untreated, or even under-treated, will produce physiologic responses. These include: changes in pulse rate, blood pressure and pupil size. Other signs include: cold hands/feet, sweating, body asymmetry, sensory avoidance, muscle atrophy and seeking positional pain relief. What does that mean? (Please review the charts in the linked PDF for the nitty-gritty on these signs.)

The best news, of course, is that astute healthcare professionals can use these measures to objectively identify pain patients. No more guessing, no undue stressing. The pain rating scale is not the only tool in a physician’s arsenal. While it is helpful to request a patient’s rating of their own pain on a scale of 0 to 10, doctors can compare this information and other complaints put forth by a patient against the objective measures. This strengthens the therapeutic relationship, while also ensuring doctors are relieving the suffering of pain patients in their care.

Blood Tests: More Objective Evidence of Pain

Hormones. Further evidence of severe, persistent pain can be found in blood tests. Doctors should look for changes in hormone levels: stress hormones, testosterone, progesterone, estrogen. Both men and women will tend to have readings that are out of the norm, particularly in cases of severe pain. Depending on how long a person has been dealing with pain (early on vs. years into it), the adrenals, for instance will either produce very high readings or very low, respectively. Stress hormones work over time, trying to combat what is going on in the body. Eventually, however, the body can no longer cope and stress hormones are depleted. All hormone levels go out of whack. Signs can be seen in the patient, such as changes in volume of body hair, irregular menses in women, etc. These are questions that can be asked during an exam, to help clarify possible hormone issues, prior to testing.

Drug Testing. As a pain patient, expect your doctor to regularly test you to ensure “compliance” with their pain management program. This basically means that your doctor wants to know you are taking the medication that helps relieve your pain, and you are not taking anything else that you have not discussed with them. (Either prescription or illicit drugs.) Testing may be done using blood tests, however, urine testing is more commonplace. That’s likely because the results are available right there in the doctor’s office. However, patients must know: urinalysis is controversial.

If a urine screening comes back with unexpected results, please ALWAYS request a blood test to verify the data. Know that false positives for drug abuse are common when urine testing is used — and that false negatives designed to confirm a patient’s use of prescribed pain medications do happen as well.

It’s a sad fact that pain management physicians have had to use this as a tool in the treatment of pain, but because of the DEA and State Medical Boards, doctors are using such tests to protect themselves (and ultimately you too). It’s true, this doesn’t happen in the care of any other serious illness. Sadly it’s not entirely in the doctors’ hands anymore, so drug testing is a necessary evil. Just know it’s happening all over; you are not being singled out. This is just one more way a doctor can ensure they are treating only pain patients, and not people who might try to sell their medication and/or abuse other substances.

A pain management physician never wants a drug addict or drug dealer to enter their office. However, they can and they do try to get access to our life-sustaining treatments for illicit purposes. If a simple test means I have access to pain management which allows me to be a productive person, I say why not? After all, I’ve got nothing to hide. Nor does any other pain patient. Now I see it as just another thing on the list of ‘things to do’ at the doctor’s office. So relax, provide your sample, and move on with your life.

A good relationship with your doctor is key. So long as you are a pain patient and are not keeping things from your doctor, all of the information gained will strengthen the therapeutic relationship. Trust is a huge part of being a pain patient. You must prove yourself, and continue to prove yourself, throughout your care. It shouldn’t be the case, but in this climate of hyped up addiction/overdose cases being splashed in the headlines, doctors have to be vigilant. If they weren’t, they wouldn’t keep their doors open very long!

In addition to trust, honesty is vital. Be as upfront and open as possible. Always tell your doctor what you think might help, and they will share ideas with you too. If you aren’t getting good pain care, keep looking. Good doctors are out there, even though, admittedly, they are harder to find than they should be!

Know there are a whole host of other tests that can be run to look for issues with a patient, such as: potential problems metabolizing nutrients &/or medications, genetic factors and much more.

Differences from One Patient to the Next

Patients may wonder whether these objective measures may be problematic for them, given the differences in measurements from one patient to the next. The answer here is simple. When you visit a new pain management physician, provide him/her as many records from prior doctors as you can. They will help tell your doctor(s) who you are, as an individual.

If your blood pressure tends to be very low, then perhaps what appears to be a ‘normal’ reading is actually very high for you. Conversely, if you already had high blood pressure prior to the start of your serious pain, your doctor will take your records as evidence of how much more severe your hypertension has become. If your blood pressure was high and it subsequently increased, this will be noted in your files. So will any increase in blood pressure medication required since your pain began. This will help a physician understand your particular case that much better.

Additionally, it’s important to know blood pressure and pulse will change over time. Once a patient receives the appropriate medication, they get some degree of pain relief. If you are getting treatment that helps lower your pain, your readings and other pain signs tend to improve. That’s because the pain is under better control.

In my case, I felt immediately at ease with my doctor, after our first visit. My pulse was very high for the first several months, but my blood pressure went down fairly quickly. I finally felt like this was my answer, that this doctor could in fact help me. The stress I felt seeing a new doctor was combated by the fact that I trusted him to help me. Less stress often means better pain control too.

At the same time, patients who are generally getting good relief but are having a stressful morning, fighting traffic etc., may have higher than normal readings on occasion. It is best for doctors to always give the patient time to calm down from any such issues, before they are screened for blood pressure and pulse. This will assure readings that more accurately reflect a patient’s true resting blood pressure/pulse rates.

What Does a Pain Patient Look Like?

They look like you, me, anyone really. Pain crosses gender lines, socioeconomic lines & exists in every race/creed/color. There is no one “look.” And of course, there’s much more to it….

During my first visit to my new Intractable Pain specialist, I was scared. By the time I saw this doctor, I was quite literally at the end of my rope. I told myself: If he doesn’t have any answers, I’ll find my own way out of this misery, even if means my death. It was a very dark time for me, no question.

Dr. Tennant used his expertise to review my situation in great detail, looking for clues the whole way. I had no idea about all the objective measures for pain that would be used. I was just trying my best to stay hopeful as I filled out the extensive paperwork. I doubted I’d ever feel like myself again.

There was no question that I was in serious pain. I had been on high doses of Vicodin for some time, but it just wasn’t managing my pain anymore. I was in such severe pain that I was barely sleeping, or doing anything at all most days. I would soon find out that previous doctors hadn’t understood me. I’d also learn that when needed, the medication must match the symptoms, and that the right option isn’t ever one size fits all. (What I do know now is: There are far better meds for someone living with constant/severe pain that don’t require patients risk their lives by taking 3000mg of acetaminophen per day or more, as I was for several years!)

By this 1st visit, many of the objective signs of pain had existed in me for years. That day, my pulse was very high: 94, if I remember correctly. My blood pressure was equally high, in the neighborhood of 145/110. I don’t recall my pupil measurement, but it too confirmed what was going on with me. My hands and feet were like ice nearly all of the time, and sometimes my nose was as well. That’s called vasoconstriction.

My whole body hurt. I slumped to the right in my chair, guarding my left arm which was very numb. I could no longer tolerate leaning it on the arm of any chair no matter how soft/padded it was. At the same time, I kept my back straight, and was always searching for a chair with a high back. If that wasn’t possible (as was often the case at doctors’ offices), I selected a chair that was placed up against a wall. That way, I could lean my head up against it. I scarcely moved my head or neck, staying very rigid. My muscles were tight & ached from my mid-back upward. I had an intense headache, as was often the case. My neck was a mess, as was the rest of me.

I’d forced myself to shower, but didn’t do much else other than comb my hair that morning. No makeup. By the time I’d showered, I was already late. Everything took so long to do, it seemed! Even though it was January, I wore flip flops because most everything else was so uncomfortable anymore. I found that my feet being covered for long periods of time, especially my toes, sometimes hurt. And heels, forget it! No matter how cute they were, 90% of my shoes just collected dust.

My best clothes sat unused as well. I wore loose fitting clothing, but tried to make myself as presentable as possible. I used to dress professionally, as you’d expect from a department head in Marketing/IT. That was who I was before my life was turned upside down by pain. But increasingly, even in the last few years at work, I could not wear my nice suits because they felt uncomfortable in ways I couldn’t begin to properly describe. Even the beautiful flowing skirts & dresses I’d once adored were a no-go, because none of the shoes I was able to wear looked right with them. I struggled to find semi-professional clothing and after a few years of this, I just sort of gave up. Soft cottons without any pilling were about all I would manage much of the time. I was one of the most highly paid people in my office, but to look at me? I could’ve been a temp.

Several times during my visit with the doctor, he asked me to repeat myself. Apparently, I was speaking very softly and didn’t even notice it. That’s common with neck injuries, he told me. I still am not exactly sure why, but the fact that my surgery was near my vocal chords does make some sense. (They had to go through the front of my neck to do the surgery safely at C 4-5. Since then, I’ve often had people ask me to repeat myself, especially those I don’t know well or am not comfortable around. Weird, but true.)

As he examined me, my doctor noted muscle atrophy and weakness. He also asked me to point out the areas that hurt the worst.

He then took photos of the 2 most painful areas using Polaroids, so he could show me what he saw. It was shocking! Even I could see the swelling in my forehead and a crease too, as I looked at the first photo. It was instantly noticeable that the area of my head that hurt was inflamed. It made sense, though I’d never thought about it before. I had chronic headaches then, which are apparently visible when you’re plagued with them nearly round-the-clock! He also noted inflammation in my upper back. I saw that in the picture, too. It all made sense. My pain was right there for all to see, if only they would look!

I often bit my lip, thinking it was a nervous habit. Apparently, it’s something people in pain do to distract their nervous system from the pain unconsciously. I also became very clumsy. That’s how I would describe it, anyway. Many cuts and bruises, mostly on my legs. I’m not sure if it was the numbness or my body’s desire to be rid of the constant pain signal I was dealing with, but it wasn’t exactly cute to have cuts/bruises at various stages of healing all over. My doctor explained that many patients, whether consciously or unconsciously, hurt themselves which aided the body in temporarily redirecting pain signals. This information was both unexpected & fascinating to me.

I was at an 8, 9 or 10 on the pain scale consistently before I saw this legendary Intractable Pain specialist. Unfortunately, those numbers meant little to all the doctors I’d seen up to that point. I was too young, and therefore seemed too normal/healthy to be so very sick. I had no noticeable sign of injury or disability either. So to them, I was either lying or exaggerating… and that was that.

That day I was so incredibly thankful to finally be seen as I truly was — and I will be thankful to Dr. Tennant for the rest of my life. There’s no doubt this one moment — a single visit with a knowledgeable doctor — changed everything. More than that, I was on course to come back from near death (at my own hands, that is)… This wonderful doctor would go on to save my life!

Important Questions Regarding Intractable Pain

During that first appointment, the doc asked me questions no one else had asked before. As the visit went on, I was getting  nervous…

Had I been sleeping? Hardly at all, max of four hours at a time. Even that much was rare. I was exhausted. Constantly!

What about eating? Not much, but lots of sugary stuff, mostly. Really bad. He nodded.

Did I go out much? See family or friends? Not really. Not ever. I was starting to worry. What did that mean?

Then he asked about exercise. Or if I went out and did anything I enjoyed at all. No and no.

What did I do with my time? Sit around, worry, try to sleep, watch some tv. Not much at all.

My alarm bells were going off. It was as if he knew me better than I knew myself! At the same time, I was worried it was something really, really bad. I mean, the pain was bad — really bad. But, what was all this about?

Throughout his questions, my doctor was taking notes. Lots of notes. Notes make me nervous. Other doctors rarely listened & they never listened this intently!

I started to kind of space out. Maybe I was in shock, or maybe I was too worried to think straight anymore. We were still talking, but I was so consumed by the WHY behind it all that I didn’t hear much else, until he asked this one:

How are your teeth? Grind them? Lots of cavities? Other dental work?

That was it, I lost it, completely. How did you know? I began to sob. He left the room, grabbed a box of tissues and came back. (I suspect this was also to give me a chance to compose myself.)

When he returned, I just had to give him every bit of info about my teeth… I often gritted my teeth in my sleep. Not grinding, but jaw clenched, very tightly. In the past few months, it was as if I only left my house to go to the dentist. Crown after crown. Cavities rotting into seriously bad situations. My first ever bridge. I didn’t know anyone who had one of those, except me. This started when I was pretty young too. Now, I was a dental nightmare!

Based on the exam, interview, photos and all the paperwork, it was clear to my new doctor that I had Intractable Pain, which has some extra symptoms for doctors to look out for, in addition to the subjective pain signs above.

Eventually I learned I also had Complex Regional Pain Syndrome Type II, formerly referred to as Reflex Sympathetic Dystrophy. Worse than that, I’d had with the genetic condition Ehlers Danlos Syndrome since birth. Most of us are complex patients, which makes many above the capabilities of the majority of physicians — even many who trained in pain management.

Tough stuff, but at least now I know. And with the help of a knowledgeable doctor who cared to ask the right questions, I have some semblance of a life back.

Effective tailor-made pain management is key. It’s not about pain medication for everyone, but doctors who ignore ANY tool at their disposal are suspect, if you ask me. That’s what my experience taught me.

So is this the same life I was living before? No. I’m not going back to so-called normal, but that’s ok. I’ve made peace with it, and then some. I know I’ll always have more fragile health (and certainly more restrictions) than the average person. I am 100% dedicated to the somewhat tedious individualized health regimen that is life-sustaining for me. That’s what Intractable Pain is. It impacts a person, mind & body, and it does so for life. As hard as this road has been & can sometimes still be (especially when the unexpected happens, like losing a treasured doctor). Yet I’ll be forever grateful that I was truly seen by an expert in this field. Thanks to my pain specialist and all he taught me, I am still here! For the rest of my days, I’ll look back on my experiences and know how blessed I am. That’s why I fight for others with pain who are just like me. No one should have to walk this road alone.

What Can I Do To Make My Doctor To Understand My Pain Is Real?

Please, share the signs and symptoms of pain with your doctor. Let them know you are not crazy, faking or lying. Your pain is real and they can see the symptomsif they just know where to look. Print out the brilliant work by Dr. Tennant for your doctor(s), loved ones, fellow pain sufferers you know. Bookmark it, too. It’s here: Objective Signs (PDF) for all to see!

Change starts with you! Give copies to other people at your doctor’s office. Start a movement. Push for the care you need; push for better care, for everyone. The more doctors understand a true pain patient, the more we will all get the pain care we desperately need. Many of the people I know with severe, persistent pain have gone through hell, just to get someone to listen. Isn’t it time that era of pseudo-pain care came to an end? Real pain care starts today—with YOU!

Remember: Pain doesn’t discriminate. It affects people of all races and economic status at all stages of life—from our very young to our elders. Research has also shown that about a third of people who report pain indicate that their pain is *disabling* — both severe and having a high impact on functions of daily life. Pain is a national healthcare crisis, impacting over 116 million Americans.

The Bottom Line: People in pain have a right to timely, appropriate pain care. And thanks to Dr. Tennant’s work, all doctors will be better equipped to diagnose, then treat it.

Author’s Note: This article was updated in September 2021.

© 2010-2021 Intractable Pain Journal & Heather Grace. All rights reserved.