Tag Archives: diagnosing pain

Chronic Pain Patient In Crisis: Lifesaving Care Needed

4 Oct


This is my first time responding to any type of blog, forum, etc. This story hit home (Surprise! We’re Chronic & Intractable Pain Patients NOT Addicts)!

You explained my life to a “T”. I can feel my body dying. I dont know where to get help. The harder I try to find a good doctor, the worse it looks. As I am writing this, tears are rolling down my face. The suffering is not only affecting me, but also my children and wonderful husband. I am crying also because there are so many of us.

Please if anyone knows how I can get help let me know. I am at the end…only enough strength left in me to try ONE more time to get help,and this is only because I love my husband and children too much to give up. I dont know what to do, and I am so frightened. — Shannon (Original Post here)

Getting Help While In Chronic Pain Crisis
Answered by Heather Grace

Shannon: First & foremost, I’m so sorry for all you’ve been through, and all you continue to go through. And, I’m so glad you took a chance & reached out! That tells me you know you deserve better than what you’ve been given. And somewhere inside you, I think you believe it is possible for things to turn around for you, too. Because *it is* – truly!

I can feel the pain & desperation in your message, because sadly, I know where you’ve been. Yes, it feels like a crushing nightmare that you cannot awake from…

Not only are you suffering physically–all the people who are supposed to help you are NOT doing so. Not doctors, perhaps not even some loved ones. Pain is a cruel, cruel illness–it is so misunderstood. The toll it takes on one’s health is serious enough. Add to that the torment of being judged, doubted and mistreated… It DOES feel like it’s more than anyone can or should be able to bear. And, for some, this suffering IS too much to take.

Intense pain caused by injury or illness does lead many to thoughts of suicide. It’s the lack of treatment when a person gets to that point that I believe pushes people over the edge. Pain KILLS.

I know, because I have been on that ledge, Shannon, right where you now stand. I tried twice to step off it. Twice a voice somewhere inside me said “NO! You can’t. It’s *not* over.” Like you, I told myself, ‘FINE. Just one more try. If this doesn’t help, I can still end my pain on my terms.’

And when I decided to try once more, a strange set of circumstances lead me to the perfect doctor *and* the perfect support system. Ironically, it was a stranger who helped me, too. He gave me the phone number of the doctor who saved his wife’s life. What a gift that was! And here I am.

As hard as it is to do, you have reached out your hand to ask for help. Don’t you see how perfect it is that you asked ME to help you find your way out of this darkness? I was you, Shannon, in 2007. Though it was just five years ago, I am now a completely different person.

I now see the power of what ONE PERSON can do. Pain Advocacy has become my life. I do what I can every day, hoping to repay the kindness that was shown to me when I needed it most. Your letter really touched me, and I want to give you all the help I can, so you can be well again.

Though you have every doubt in the world, though is the hardest fight you’ve ever faced… Even if you don’t see if yet, YOU ARE A SURVIVOR. You ARE strong enough, you CAN do this. I know from personal experience! It can and will get better for you with the right help. A doctor who “gets you” makes all the difference. I will help you find the right treatment to save your life.

Two things to get you started:

(1) All patients without effective care may benefit from the advice given in the article, Tips & Secrets: How to Find a Good Pain Management Doctor online at http://thepainstore.blogspot.com/2010/10/how-to-find-good-pain-doctor-tips.html. This is based on information I have used, myself–as well as tools I’ve used to help others.

(2) It becomes especially important to ensure physicians see that you are suffering with severely pain. How do you do this? Provide current and prospective physicians information on the OBJECTIVE signs of severe pain: http://pain-topics.org/pdf/Tennant-PainSigns.pdf. Medical professionals often refer to pain as the 5th vital sign, but how many actually look for it in their patients? So many doctors believe pain is a subjective complaint. In fact, there are many signs!

Going forward… Know that effective pain care does exist. And, I will help you find it.

All I ask of you, Shannon: Promise me you will trust me enough to hang on. Not just for your family, but because YOU deserve a chance at life again. To really live. You will get there! And one day, you will be so well, you may find yourself in my shoes… helping someone else to survive this terribly difficult disease.

If at any point you feel like you are in need of immediate attention, please call 9-1-1. There is also the National Suicide Prevention Lifeline: 1-800-273-8255. I sincerely hope you don’t get to this point, because I believe you want help as much as you truly deserve it. Hang in there, ok?

I’ve emailed you my contact info. Feel free to write back or contact me via Twitter @IntractablePain, anytime, as well.

Take care Shannon, and I’m so glad you reached out! I’m hoping to hear from you very soon. Hopefully today… I’m here for you.

Hugs, Heather G.

UPDATE December 2012: I am happy to report than Shannon is doing much better, under the care of a specialist who is working to resolve her intractable pain and related conditions. I’m so pleased–everyone deserves appropriate access to care for their chronic & intractable pain!

© 2012 Intractable Pain Journal & Heather Grace. All rights reserved.


Surprise! We’re Chronic and Intractable Pain Patients, NOT Addicts!

24 Aug

“Advocating for Another” Carnival 2012 – Day 4

by Heather Grace IPJ Staff Writer

severe back painThere are plenty of things the average person doesn’t know about the pain community. Let’s focus on a really harmful myth: The stereotype about pain patients being a bunch of crazed addicts. It really rubs me the wrong way. Our reality couldn’t be further from the truth. And it’s time you heard some of the reasons why. Here we go:

First, I think it’s important to set the record straight regarding the myth that people with pain who are prescribed pain medication are in serious danger of becoming addicts. Chronic/intractable patients who take pain medication are no more likely to become addicted than the general public, despite the media mudslinging. Their biased attacks are damaging to pain patients–threatening access to vital medication throughout the country. I’m not sure why the media has resorted to such harmful tactics, but we’re not actually that newsworthy. Though fact-based stories on addiction stats can be boring, we’re just like the rest of the country. According to government statistics (SAMHSA), the addiction rates are well under 5%.

Living with Pain

Regardless of the public’s often negative viewpoint, people with diseaseses like Central Pain Syndrome, Adhesive Arachnoiditis or Trigeminal Neuralgia often depend on prescription medication. It’s an important part of many patients’ pain care protocol. Not because they want to use this medication; it’s not because they enjoy the ongoing doubt by family and friends, the hesitation of physicians, the media attacks that end up riling up the public into near-frenzy. As patients, each of us takes whatever treatment works for us, because we want some semblance of a life back. Period.

We never asked for any of this. Personally I’m shy by nature. I don’t want to be the center of attention for any reason. But to question my character, to believe I am capable of being a bad person, scheming and creating this whole “illness” — that makes me sick to my stomach.

I’m not an addict. I’m not enjoying one minute of any of this. I didn’t enjoy the years of mistrust that kept me from getting care. I didn’t enjoy the fact that I was a rag doll being tossed around the Worker’s Comp System at will. And, I certainly don’t enjoy the fact that I will live with intractable pain for the rest of my life because they didn’t treat my illness effectively when I begged them over and over for their help. Even more, I don’t enjoy all the worry this situation creates.

pain medication

I don’t think most people realize that we who life under the microscope merely because we are sick absolutely hate it. I hate that I have to worry every minute about my doctor being there for me from month to month. What if he retired? Or was investigated and bankrupted by his defense? What if he just couldn’t take the pressure any more and walked away? Worry about the pharmacy having my medication, or like my doc, being investigated and going broke. Then, there’s worrying I will get a knock on my door from the friendly neighborhood DEA. Merely being a patient has gotten many people arrested, and even imprisoned–and I know I wouldn’t survive that! And then there’s the very real concern that federal or state laws will regulate me right into an early grave.

If you think I’m a bad example and no one else worries like this, think again. I’ve talked to many others and they are all scared. As if the stress is good for us! If your illness was constantly in the media spotlight, how would you feel? What if there was also increasingly tough legislation that you knew was endangering people’s lives all over the country? It’s a scary time to be a pain patient.

I even dislike the process and all the nonsense that goes with it. Unlike other illnesses, we cannot just see the doctor every 3-4 months or longer. Nope. Even though I like my doctor, I despise being forced to check in like clockwork, monthly. Same with the meds. We cannot get 90 days worth of medication at a time with a bunch of refills–despite the fact that this is a lifelong illness. Oh no, we’re at the pharmacy every 30 days. And what’s even more annoying to me… refills are not allowed. And, if you happen to see your doc a little early? That makes things even more fun. When I go to the pharmacy, the prescription has to be put on hold and filled later. Why? It hasn’t been long enough since I last filled it. What’s even more upsetting is that I am stuck in California. I cannot move–even if living elsewhere may be cheaper, because I’m terrified I couldn’t find a decent doctor elsewhere. (I’m blessed to have a very good one here.)

Reading all of the above should present a pretty clear picture of all the reasons why none of us enjoy being reliant on opioid medication for our treatment. Why on earth would any of us want to live this way? It’s not a choice–that’s what people need to understand. Not at all.

And, here’s the real shocker. Like most people who are in severe, constant pain, I have never gotten a “high” feeling from my medication. Ever. I think that would surprise most people. But, here’s the thing… We need the medication just as if we had anemia and needed to take iron. Or had diabetes and needed insulin. It’s the correct treatment for a serious illness. I’ve talked to many other people who’ve had the same experience. We don’t see why people abuse pain medication. It doesn’t make sense to us, because we’ve never seen that side of these medications. To us, they are vital treatments for a gravely serious disease. To us, pain medication is a lifesaving treatment. Period.

I wouldn’t wish my pain on anyone. Ever. But, I really do wish everyone would have the decency to believe us when we say we’re in serious pain and persist with our pleas for help over so many years. All we want is some mercy. Some understanding. The willingness to see us for who we are without judging. To believe us. The fact that we don’t have that from the world around us is what really surprises me.

People with chronic and intractable pain are just like anyone with a life-threatening health problem. We very ill people who need ongoing access to a truly vital treatment. Is that really so difficult to understand?

The above blog entry is part of a week-long series created by WEGO Health “Advocating for Another” Carnival 2012. You may follow my blog here, and see me on Twitter @IntractablePain. Check out other entries: #A4AMONTH.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

September is National Pain Awareness Month–What Will YOUR Focus Be?

21 Aug

By Heather Grace, IPJ Staff Writer

As August is nearing an end, we at IPJ are wondering what people with chronic and intractable pain will be doing to acknowledge the important month ahead. To many, September is just another month. But to people with pain, it can be a very meaningful and important time of year. September is National Pain Awareness Month.

Will you celebrate this month–being thankful for your continued health? Perhaps you’ll think about how lucky you are to have adequate pain care? Or will you focus on pain advocacy, recognizing that so few people have the pain care they desperately need? Maybe you’ll write a blog, share a video about your experience with pain, or make your voice heard in the media?

Please take a few moments to discuss National Pain Awareness Month here. Share what you’re doing to take care of yourself, as well as what you’re doing to help others. We’d also love to hear your hopes/dreams for the future of pain treatment.

And to all people with pain: We wish you a happy healthy September, filled with acceptance, support and understanding.

© 2010-2012 Intractable Pain Journal & Heather Grace. All rights reserved.

An Historic Event: IOM Releases “Relieving Pain in America” Report

1 Jul

July 1, 2011

by Heather Grace, IPJ Staff Writer

Anyone affected by chronic or Intractable Pain knows the heartache, stigma and shame often experienced. Even when speaking to medical professionals or loved ones, we are doubted, judged and sometimes even accused of wrongdoing. Why? Merely because we state our symptoms–the main one being an excruiating degree of pain that no one should ever have to live with.

Yet, far too many people suffer in silence, choosing to just ‘deal with it’ because the alternative is a long, winding hellish road… filled with anger, sadness, disappointment and grief. When the pain gets to be too much, some make the terribly disturbing choice to end their own suffering–via suicide.

It’s a story that is all too common in the pain community. And yet, this deplorable level of misunderstanding, medical neglect and unnecessary death does not exist for sufferers of any other disease.

A ground-breaking report that studied pain from many angles was released on Wednesday, and the buzz is generally positive. Will attitudes toward pain change in the not-so-distant future? Only time will tell, but it is about time that pain is seen as the devastating disease that it is.

In addition to defining chronic pain as a disease,the Institutes of Medicine’s (IOM) Relieving Pain in America notes some very important facts about pain. The two most noteworthy tidbits?

    1. Chronic pain affects an estimated 116 million American adults—more than the total affected by heart disease, cancer, and diabetes combined.
    2. Pain costs the nation up to $635 billion each year in medical treatment and lost productivity—an amount equal to about $2,000 for everyone living in the United States.

IOM’s Committee Advancing Pain Research, Care, and Education reviewed literature, statistics and research; they also spoke to medical experts and members in the pain community in five cities from November, 2010 through April, 2011. The resulting report includes 328 pages of detailed Findings and Recommendations. The plan for this report? Congress will use the recommendations to revamp its approach toward the treatment of pain, in an effort to make things better for pain sufferers now, and in the future.

Some of the key findings from the report are found on page 1-9, Box 1-4:

Pain By The Numbers

  • 116 million—number of U.S. adults with common chronic pain conditions
  • $560 to 635 billion—conservative estimate of the annual cost of chronic pain in America
  • $99 billion—2008 cost to federal and state governments of medical expenditures for pain
  • 60 percent—percentage of women experiencing their first childbirth who rate pain as severe;
    18 percent of women who have caesarean deliveries and 10 percent who have vaginal deliveries report persistent pain at 1 year

  • 80 percent—percentage of patients undergoing surgery who experience postoperative pain; fewer than half report adequate pain relief:
    • Of these, 88 percent report the pain is moderate, severe or extreme;
    • 10 to 50 percent of patients with postsurgical pain develop chronic pain, depending on the type of surgery; and
    • for 2 to 10 percent of these patients, this chronic postoperative pain is severe
  • 5 percent—proportion of American women aged 18 to 65 who experience headache 15 or more days per month over the course of 1 year
  • 60 percent—percentage of patients visiting the emergency department with acute painful conditions who receive analgesics:
  • median time to receipt of pain medication is 90 minutes, and
  • 74 percent of emergency department patients are discharged in moderate to severe pain
  • 2.1 million—number of annual visits to U.S. emergency departments for acute headache (of 115 million total annual visits)
  • 62 percent—percentage of U.S. nursing home residents who report pain:
    • arthritis is the most common painful condition, and
    • 17 percent have substantial daily pain
  • 26.4 percent—percentage of Americans who report low back pain lasting at least a day in the last 3 months

The Recommendations, which are detailed starting on page S-13 of the report, are divided up between aspects that should be put into effect right away. “IMMEDIATE: Start now and complete before the end of 2012.” The others? “NEAR-TERM AND ENDURING: Build on immediate recommendations, complete before the end of 2015, and maintain as ongoing efforts.”

Immediate efforts include:

  • Create a comprehensive population-level strategy for pain prevention, treatment, management, and research
  • Develop strategies for reducing barriers to pain care
  • Support collaboration between pain specialists and primary care clinicians, including referral to pain centers when appropriate
  • Designate a lead institute at the National Institutes of Health responsible for moving pain research forward, and increase the support for and scope of the Pain Consortium

Ongoing plans include:

  • Improve the collection and reporting of data on pain
  • Promote and enable self-management of pain
  • Provide educational opportunities in pain assessment and treatment in primary care
  • Revise reimbursement policies to foster coordinated and evidence-based pain care
  • Provide consistent and complete pain assessments
  • Expand and redesign education programs to transform the understanding of pain
  • Improve curriculum and education for health care professionals
  • Increase the number of health professionals with advanced expertise in pain care
  • Improve the process for developing new agents for pain control
  • Increase support for interdisciplinary research in pain
  • Increase the conduct of longitudinal research in pain
  • Increase the training of pain researchers

Overall, the approach seems like an effective plan. The execution of the plan will be the part that makes all the difference. If handled well, pain care could be revolutionalized. If led by people who are not truly knowledgeable, who let fear and a desire to prevent addiction rule their decision-making, nothing will have changed.

The future looks bright–but it won’t work unless people with pain share their stories, loud and often. Tell the IOM what you think of this report, and how you want to see pain care change. Email them at wwwiom@nas.edu.

It is time people finally knew the truth: We are not Nurse Jackies or Dr. House’s. We are, in fact, just like you or anyone… but, we cope with an unrelenting pain, every minute, every day. Don’t we deserve some real help, now, after all this time in the dark ages of pain care?

Having attended the IOM’s fourth meeting, in March, 2011, I am so pleased to see the progress made for pain sufferers everywhere. This report makes people like me hopeful, for the first time in a long time, about our future.

Testifying before the committee was my first big step into the spotlight, regarding my pain. I was outside the warm, welcoming arms of other people affected by pain. However, I was able to stand there proud, and tell my story honestly and openly. It felt great! Best of all, I was able to share with the committee some very important research from Dr. Forest Tennant, the Intractable Pain Specialist who saved my life. (This important research can be found in the article Objective Signs of Intractable Pain: Constant Severe Pain Symptoms ARE Diagnosable.)

What did I learn from my experience? Everyone who has been affected by pain should do what they can to get involved, in this way. These days, being your own Advocate isn’t enough. If you really want to make the world a better place for pain treatment, you have to be willing to work side-by-side with people just like you, creaing a common voice for the pain patient.

How do you do this? Consider becoming a Leader with the American Pain Foundation Action Network (like I did, thanks to my wonderful friend, Radene Marie Cook!) Visit their new and improved site at http://www.painfoundation.org/get-involved. Or, fill out the Advocacy Survey now. This link allows you to join APF for free, instantly; it will also allow you to connect with local APF Leaders, so you can learn more information about advocacy efforts in your area.

Want more information about the IOM Report? Here’s a sampling of media coverage:

Chronic pain affects 116 million Americans, says IOM report
Los Angeles Times – Marissa Cevallos
Pain is more than just a complaint — it’s a public health issue. And the time has come to do something about it. So concludes a new report from the Institute of Medicine, written at the…

Report: More than 100 million suffer lasting pain
Washington Post – Associated Press
(AP) — Nearly a third of Americans experience long-lasting pain — the kind that lingers for weeks to months — and too often feel stigma rather than relief from a health care system poorly prepared to treat…

Report: Chronic, Undertreated Pain Affects 116 Million Americans
TIME – Maia Szalavitz
Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine…

Pain Costs U.S. $635 Billion a Year: Report
U.S. News & World Report – HealthDay News
Pain afflicts at least 116 million adults in the United States each year and costs the nation $560 billion to $635 billion annually in medical and economic costs, according to an Institute of Medicine report released Wednesday…

Don’t blame people for their pain, report says
CNN – blog
Chronic pain – no matter where it strikes – is a problem not many of us really understand. It can sometimes be dismissed and not effectively managed by health care professionals. Pain is widespread, but underdiagnosed and undertreated, according to a…

116 Million Americans Suffer Chronic Pain, Huge Personal And Economic Burden
Medical News Today – Christian Nordqvist
Not only does chronic pain affect the quality of life of over 116 million Americans, there is a massive economic burden too, estimated to be between $560 and $635 billion each year for the country, researchers from the Committee on Advancing Pain…

Relieving Pain in America: A new report from the Institute of Medicine
Stanford Scope – blog
The past couple of days have been hard. Struggling with work deadlines, I was also trying to comfort my sobbing six-year-old son as he suffered for hours through what seems suspiciously like his first migraine. Hands tied, I could do little except…

The yearly cost of chronic pain is excruciating
msnbc.com – Alina Selyukh
WASHINGTON — Addressing chronic pain, a hard-to-treat yet highly common condition, costs the United States as much as $635 billion a year and requires a much more comprehensive strategy for curbing lost productivity and healthcare…

Chronic Pain: 1/3 of Americans Live With It, According to IOM Report
ABC News – Susan Donaldson James
Cynthia Toussaint has reframed her life after decades of chronic pain and now helps others. For a decade after a 1982 ballet injury, Cynthia Toussaint was confined to her bed, writhing in pain from muscle spasms, unable to walk or to live a meaningful life. Crippled by an array of illnesses, including chronic fatigue syndrome and fibromyalgia, the North Hollywood, Calif., singer and dancer was eventually diagnosed with Complex Regional Pain Syndrome…

Chronic Pain Costs Have Skyrocketed, Report Says
ThirdAge – Emily Jacobson
Chronic pain costs the United States up to $635 billion a year, and a new government report suggests it requires a much more comprehensive strategy to make up for productivity and healthcare costs. About one in four US adults have chronic pain each…

(Thanks to Mary Bennett, APF, for the news links.)

The Institutes of Medicine’s (IOM) full Relieving Pain in America report can be downloaded for free at http://www.iom.com/relievingpain.

© 2011 Intractable Pain Journal & Heather Grace. All rights reserved.

Debunking The Myth: There Are Diagnosable, Objective Signs of Severe Pain

20 Mar

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 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: 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.

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