by Heather Grace, IPJ Staff Writer
Do you have severe, persistent pain? Have you been diagnosed with a serious pain-related illness like Reflex Sympathetic Dystrophy, Adhesive Arachnoiditis or Central Pain Syndrome? 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 35 years, has used what he’s 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 350 articles on pain, based on his research as well as his experience with severely ill patients. In a ground-breaking 2008 paper, Dr. Tennant highlighted the signs of severe pain.
Yes, you read that correctly. There are specific diagnostic criteria that a doctor can to identify and treat pain sufferers, just as he 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
Online at: http://pain-topics.org/pdf/Tennant-PainSigns.pdf (PDF)
How do doctors ensure they are treating only true pain sufferers? Thankfully, there are many ways to tell. Using the signs listed here, 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 on this page 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 have readings that are out of the norm. 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 regularly test you, to ensure compliance. This basically means, your doctor wants to know you are taking the medication you have determined helps relieve your pain–and you are not taking anything else that you have not discussed with him. (Either prescription or illicit drugs.) This may be blood tests, however, urine testing is far more common. Perhaps this is because the results are available right there in the doctor’s office, but know that this is controversial. If a urine screening comes back with unexpected results, request a blood test to verify the data.
It’s a sad fact that this is necessary in pain care, but because of the DEA and State Medical Boards, doctors are using this to protect themselves. Yes, it’s true–this doesn’t happen in any other care of any other serious illness. It’s almost not in the doctors’ hands anymore–it’s 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 he/she is treating on 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. If a simple test means I have access to pain management, which allows me to be a productive person, well, I say, why not? After all, I’ve got nothing to hide! Nor do any other pain patients. Now, it’s 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 anything from your doctor, all of the information here 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 sadly, in this climate of hyped up Oxycontin addiction and overdoses splashed in headlines, doctors have to be vigilant. If they weren’t, they wouldn’t keep their doors open very long! Be upfront and honest–always tell your doctor what you think might help, and he/she will share his ideas with you. 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!
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. If your blood pressure tends to be very low, then perhaps what appears to be a ‘normal’ reading is actually very high. Conversely, if you already had high blood pressure prior to the start of your serious pain, you can provide a pain doctor with evidence of this. Most people with high blood pressure are treated for it with hypertensive drugs. 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, since your pain began. This will help a physician understand that the blood pressure rating may be low due to medication, not because you aren’t in pain.
Additionally, these ratings will change, over time. Once a patient receives the appropriate medication, he/she will get some degree of pain relief. If you are getting medication that helps, your blood pressure/pulse and other signs will improve, because you are getting the pain under better control. It is also important to note that even if patients are not getting the pain relief they seek, either one or the other of blood pressure or pulse can be within normal range.
In my case, I felt immediately at ease with my doctor, after our first visit. I think my pulse was still very high for the first several months, but my blood pressure went down fairly quickly. I finally felt like this was my answer–this doctor could help me. The stress I felt was being combated by the mere fact that I trusted this man to help me. Less stress often means better pain control. Additionally, patients who are generally getting good relief but are having a very stressful morning, fighting traffic, etc, may have higher than normal readings, as well. 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?
Personally, during my first visit to an Intractable Pain specialist, I was scared. By the time I saw this doctor, I was literally at the end of my rope. If he didn’t have any answers, I was determined to find my own way out of this, even if meant death. It was a very dark time for me, no question.
I had no clue about all of these objective measures for pain when I saw him, I was just sitting, trying to fill out paperwork, wondering if I would 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. There are far better medications out there that don’t require patients to take in 3000 mg of acetaminophen per day, or more, as I was for several years!
At that time, many of these signs were present in me. Very high pulse (94, if I remember correctly) and blood pressure was equally high (I don’t recall the exact rating, but it was in the neighborhood of 145/110). I don’t recall my pupil measurement. Hands and feet were like ice nearly all of the time. 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 padded it was. At the same time, I kept my back straight, trying to always pick a chair with a high back. If that wasn’t possible (as if often the case at doctor’s offices), I selected a chair that was very tightly up against a wall; that way, I could lean my head up against it. I scarcely moved my head or neck, trying to stay very rigid. My neck was a mess.
I forced myself to shower, but didn’t do much other than comb my hair. No make-up. 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 very flat shoes, flip flops, because most everything else was so uncomfortable, anymore. I found that my feet being covered, especially the toes, hurt. And heels, forget it! No matter how cute, 90% of my shoes just collected dust.
Clothes too! I wore loose fitting clothing, but tried to make myself as presentable as possible. I used to dress fairly professionally, as you would expect a Department Manager in Marketing/IT. That was who I was for so long–nearly a decade. But, increasingly, even in the last few years at work, I could not wear my nicer suits, or even nice flowing skirts/dresses, 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 plain gave up. Soft cottons without any pilling were about all I would manage.
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, so I was warned I might never speak again, etc. Luckily that didn’t happen, but I often have people asking me to repeat myself, especially people I don’t know and am not comfortable around. Weird, but true.)
As he examined me, he noted muscle atrophy and weakness. My doctor took photos of my pain areas. Even I could see the swelling in my forehead and the crease, as I looked at the photos–it was noticeable, though I’d never thought about it before. I have chronic headaches, which are apparently visible when they’re nearly round-the-clock! He also noted inflammation in my upper back. It all made sense. It was right there, for all to see, if they would only 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. I also became very clumsy. That’s how I would describe it. 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. I was at an 8, 9 or 10 on the pain scale, consistently, before I saw this very knowledgeable Intractable Pain specialist. Apparently, some patients, consciously or unconsciously, hurt themselves, to help their bodies redirect the pain signals.
Important Questions Regarding Intractable Pain
During that initial visit, my doctor asked me questions no one else had asked before–honestly, I was starting to get nervous…
Had I been sleeping? Hardly at all, max of four hours at a time. Even that much was rare. I was exhausted.
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 so 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 with 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 tissue and came back. (I suspect, this was also to give me a chance to compose myself.)
When he returned, I 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. I was a dental nightmare!
Based on the exam, interview, photos and all the paperwork, it was pretty 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 Reflex Sympathetic Dystrophy.
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. Pain management makes a big difference. Is it the same life I was living before? No. I will always have pain. That’s what Intractable Pain is. But, more than that… I am still here, and I am fighting for others with pain, like me.
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 symptoms… if 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: http://pain-topics.org/pdf/Tennant-PainSigns.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.
© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.