Tag Archives: central pain syndrome

JFK’s Pain Story: Rare Autoimmune Illness Caused Chronic Pain, Then Intractable

27 Sep

by Heather Grace IPJ Staff Writer

While many people believe President John F. Kennedy struggled with chronic pain after World War II, the truth is much more complicated. JFK’s health was far worse than anyone knew, as he struggled throughout his life with serious invisible illness.

While an accident in 1944 worsened his condition, JFK’s struggles with pain actually began in childhood. The former president’s medical records were only released publicly a decade ago. And in 2009, they were analyzed by Dr. Lee Mandel. The conclusions presented a lifelong battle with a very serious illness. His autoimmune disease, Schmidt’s Syndrome, could’ve even prevented JFK from serving in office, had he not received effective treatment early on.

Schmidt’s Syndrome is complex illness, that encompasses Addison’s Disease (adrenal insufficiency caused by abnormal cortisol levels), thyroid disease, diabetes and/or failure of sex hormones. People with Schmidt’s have low immunity to communicable illnesses–they’re always getting catching colds and flus. In JFK’s era, this could be life-threatening.

JFK was sicker than most children, suffering many illnesses and seemingly unrelated symptoms from birth onward. These include near constant infections in infancy, scarlet fever, ongoing diarrhea/nausea, joint pain and fatigue. He was in and out of the hospital numerous times.

Throughout his military career, JFK suffered in silence. He wore a back brace to stabilize his degenerating spine and hid how sick he was. Though he wrote letters home to tell his family how he was really doing, Kennedy refused to go to the sick bay for help. Later in life, severe back pain caused President Kennedy to use crutches for years of his life, even while he was a Senator.

JFK had multiple surgeries on his back. The second operation was life-threatening, because his adrenal fatigue meant recovery would be much more difficult. Family members did not think it was safe to proceed. JFK’s resolve to be well and not live a lifetime in agony is what convinced him to go through with it.

In time, despite excellent care, the seriousness of his condition caused JFK to develop Central Pain Syndrome. This meant intense constant pain and severe nerve damage. Despite his charm and youth, on the inside President Kennedy had more health problems than many of his elder counterparts. Only when he met a physician who was able to manage his intractable pain was Kennedy able to truly thrive.

Before he was president, Kennedy’s care was revolutionized by specialist Dr. Jane Travell. Because her expert care managed his pain and autoimmune symptoms so effectively, JFK went on to lead the country without missing a single day due to illness. His pain management regimen included vitamins and minerals as well as prescriptions for pain, muscle relaxers and sleep.

To this day, similar regimens are used for intractable pain patients, so they can reclaim some semblance of a normal life. Though the pain and nerve symptoms never completely resolve for patients with intractable pain and/or Central Pain Syndrome, pain management means all the difference!

My story is very similar to JFK’s and while I don’t yet have a diagnosis for my autoimmune condition, I’m extremely fortunate to have effective pain care. If it was good enough for one of our most beloved presidents, surely it is appropriate for people living with severe constant pain today. Thanks JFK, for being revolutionary in more ways than the world knew in your day!

See the full story in Practical Pain Management, written by Forest Tennant, M.D.: http://www.practicalpainmanagement.com/pain/myofascial/autoimmune/john-f-kennedys-pain-story-autoimmune-disease-centralized-pain.

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a Pain Ambassador for the U.S. Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blogspot.com · http://www.ippu.info

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


Life with Nerve Pain: True Story of the Princess & the Pea

25 Aug

“Advocating for Another” Carnival 2012 – Day 5

by Heather Grace IPJ Staff Writer/Storyteller

Have you heard the story of The Princess and the Pea? The princess suffered a lot more than discomfort and lack of sleep from a tiny green pea being under her mattress. There’s a lot more to the tale. You haven’t heard the whole story… Until now.

In this fairytale, learn how facing the reality of her nerve pain changes a very sick little girl into the princess she was meant to be.

Go ahead… Curl up and listen, just like you did when it was “story time” as a child:

True Story of Princess and the Pea (MP3)

Feel free to share this story with children who have chronic pain, intractable pain and especially nerve pain. And, if you live with pain, this fairytale may you help explain to children what people with chronic pain go through. I look forward to your comments. Enjoy!

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.

Pain Advocacy Passion Reignited: A Renewed Dedication Chronic Pain Education & Awareness

30 May

by Heather Grace


It’s been a trying month, overall… My 84-year-old grandfather died unexpectedly. The chaos has woven through my life since… It’s times like this when you soldier through a large degree of chronic pain/chronic illness. You push yourself. You just… do. And pay the price later.

Sadly, just 3 days later, the American Pain Foundation announced it had finally succumbed to the financial crisis that had plagued it for several years. The nonprofit abruptly closed shop, effective immediately. 

Apparently, the decision was made by APF’s board on the 3rd. However, this decision was announced to the majority of staff, advocates & the public all at once, on May 8th, with no warning. All resources were pulled from the web, including the Facebook advocacy pages run by volunteer advocates. It was a very jarring, unexpected hit to the advocates, and to the world of pain advocacy–in one fell swoop.


These incidents were a huge shock to my already weary system. I’ve been dealing with a health backslide for seven months now. In October, without warning I began to get sicker. It started with a seemingly innocuous sinus infection, and I have yet to rebound from whatever this is. Still. 

I now know that in addition to Central Pain Syndrome I’ve lived with for many years, something else is going on, and has been for some time. My doctor once mentioned that I had some symptoms that were autoimmune in nature. But until I was knocked on my butt, I didn’t pursue it further.

CPS is already a decently cruel illness, characterized severe CONSTANT pain, and nerves that freak out left and right, at random… A leg feels like its on fire one moment. An arm has bees stinging inside it the next. Zaps of lightning spark down my spine. I can’t feel the ambient temperature or even the temp of water on bad days. Sometimes the mere touch of scratchy material against my skin causes immense pain. Those symptoms were chaotic enough.

Who would ever expect someone with Central Pain to have another illness, as well?! Well, I do. It may be Lupus, or maybe not. I’m still in the testing phase and should probably see a rheumatologist next. But these 7 months have already cost me immeasurably: in ability to do things for myself, in a sense of well-being that one gets from having a status quo… even if that status quo sucks compares to “normal” people. Most of all, being more sick than usual has cost me financially. The cushion I once had has been eaten up by this unexpected increase in illness, plus my total inability to work.


Through all of this, I find myself reaching that “sick of being sick” feeling so much quicker this time around. I am on the verge of a new beginning. It’s overdue, really. My life shouldn’t consist of fear, anger and a holding pattern… waiting and hoping to feel better. For a long time to come, I will deeply miss my grandfather & The American Pain Foundation as well. *Both* were family, to me. But, people find a way to carry on–they just do. Loss is a part of life. 

For me, starting fresh means adjusting to the hand I’ve been dealt for the moment, and making the best of the cards that are in front of me. Not trying to peek at the next card in the deck, not guessing what that card may be. Just living in the present, with these cards. Now. Today.

I already know my future is uncertain. That is what CPS is like. I am also one of the few with this degree of illness that lives alone. It’s a tough life I lead, to be sure. But do I have to focus on how tough it is with so much intensity? Even though there’s nothing I can do about my uncertain future, there is one thing I can change… ME. 

My first inclination has often been to panic. I worried, even when things were good. Somehow, they never seemed good enough for me to relax. But now, I need to improve my reaction toward change. If I don’t, it’ll cost me dearly. 

And the reality is, I’ve HAD IT with the stages of grief over this recent health curve ball. First, there was denial–I told myself it was “just a difficult-to-treat sinus infection.” I kept saying that for 3+ months, even when unrelated symptoms appeared. Then, there was anger–oh yeah–and lots of it. That’s one thing I do very well. And yes, there was even bargaining: “I will eat better, rest more…” 

None of it helped. It rarely if ever does. So finally, I got to acceptance. And I realized, I don’t have to LIKE IT to accept it. I will accept what is, but I will also do something healthy about it, from now on. I’ve found my way through the 4 stages of grief, but now I choose to move on to a 5th step that seems appropriate, especially due to recent events…


Since the loss of the APF, I admit I’ve been a little lost. To me, it was not just any nonprofit, it was mentors and vital information, as well as a caring group of people who ensured important information reached people all over the country. We, as advocates, combated bad information with the most powerful weapon of all: truth. 

Even though I am not sure exactly what my advocacy work will look like down the road, I will just keep sharing. I will tell my story til my dying breath. It is who I am and who I want to be, even if my definition of advocacy means giving a few minutes of myself here and there. I will do what I can, when I can. Because it matters deeply to me.

When you’re up to your elbows in grief and sadness, it’s easy to forget the things that matter most. Though I may not have a lot to work with in the hand I’ve been dealt, I know that advocacy is my trump card. It helps me make sense of the game, even when the rules seem to change midstream.

That’s a reality of life with chronic pain and chronic illness. The rules are always changing. That’s why each good day is precious, as are good moments on the worst days. I could continue to cry, scream, worry or even pout. All that does is stack the deck against me. Don’t convince yourself you are too sick to… Or you can’t…

Because guess what? Whatever you believe you are capable of is *exactly* what will be. If you believe you can make small strides, you can keep going in spite of illness, you will. 

When I realized that life carried on, sick or not, it woke me up. I finally saw reality, and it wasn’t pretty… You don’t have to live life-time ticks by whether you do, or you don’t. 

So the choice is yours… You can sit there & wait for a better hand. But, it may never come. If you don’t find a way to be ok with today, and start living life now, you are the one who misses out on a better tomorrow.

Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. Her intractable pain went from chronic to constant due to medical neglect of a serious yet treatable spinal injury. She now lives with Central Pain Syndrome and underlying illnesses. She Co-Manages Intractable Pain Patients United, has been Technical Director/Guest Speaker at For Grace’s Annual Women in Pain Conference. She is also a California Leader for the American Pain Foundation.

Additional Resources: http://www.thepainstore.com/articles.html
http://thepainstore.blog·spot.com · http://www.ippu.info

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

30 Things You May Not Know About My Invisible Illness: Intractable Pain

13 Sep

by Heather Grace, IPJ Staff Writer

In honor of National Invisible Illness Week…

While few people really understand chronic pain, even fewer understand intractable pain. First let me start with a simple explanation of the categories of pain. There are three basic types of pain:

(1) Acute – you hurt yourself and are in pain, right now. This is a common event and happens to people several times throughout their lifetime.

(2) Chronic – often occurring when an acute injury does not heal well, chronic pain is intermittent and/or persistent. It can also be severe, and last for long periods of time.

(3) Intractable – the place no one wants to ever get to, when pain is both constant and severe. Meaning, all the time, every minute, every day.

For people with IP, it can be hard to sleep, to eat, to take care of daily activities, to do much of anything for yourself. Many people are bed-bound, hospitalized and overall, very critically ill. Even with pain management, once you get to the ‘intractable’ stage, pain is almost always irreversible. A common cause of this level of pain is nerve damage, created when an acute or chronic injury is not treated promptly and effectively. A mistake many medical professionals make? Denying pain medication, leaving a patient suffering in excruciating pain. If the patient manages to survive, he/she will often live with intractable pain the rest of their life.

Now, here are my 30 things you may not know about my invisible illness…

1. The illnesses I live with are: Reflex Sympathetic Dystrophy and Central Pain Syndrome, which are in the category of intractable pain.

2. I was diagnosed in: 2007

3. But I had symptoms since: 1999

4. The biggest adjustment: Trying to cope with the fact that my head and heart want to do things that my body cannot do. It can be very upsetting.

5. Most people assume: that people who say they are in pain are really just fakers or drug addicts. Talk about pain! Having family and friends listen to media reports and not understand that the general public, and even many health professionals have no idea how to diagnose or treat my condition–that’s rough. Stigma sucks… I’m just a seriously ill person, no different than anyone else with a severe, life-threatening systemic illness. Btw, if I could find a treatment that didn’t involve any pain meds, that is the treatment I’d use. I hate to be under a microscope because of the type of illness I have. Seems really unfair, and also in violation of HIPAA!

6. The hardest part about mornings: Just being able to fall asleep and get enough rest is hard. My body typically won’t let me sleep until the early morning hours, and by that point, I am exhausted. Even so, I can only sleep comfortably for four hours, on a good day, without getting up out of bed. I sometimes dream enjoying a lazy day in bed… it’s an impossibility for someone like me!

7. My favorite medical TV show: I’ll probably get some nasty-grams for saying this, but it’s House. I enjoy a good diagnostic puzzle. When I can solve the puzzle, when I know what the illness is, I really love it. I realize that House is often unkind to people with pain and believe me, I’ve written letters. Many letters! My dream is that IP and/or Lupus (which seems to be a running issue with the show), are spotlighted, for once!

8. A gadget I couldn’t live without is: my Blackberry. Yesssss! Love my baby so.

9. The hardest part about nights: getting to bed, ever, during nighttime. If I do sleep at night, it’s typically an hour or so, around 11pm and then, I’m wide awake for hours afterward. Nerve pain is a big ol be-otch!

10. Each day I take: you would be shocked how many vitamins, minerals, supplements! Let’s just say it’s enough pills that I could pour them in a bowl and eat them with a spoon! (Not that I would, gross!) Over 50, every day. We’re talking sublingual Pregnenolone, Vitamins B, D, C, Folic Acid, then DHEA, GABA, Taurine, 2 multivitamins, 3 hair vitamins, MSM, glucosamine/chrondrotin and oh so much more! Yes, a small number of my intake is prescription, and out of those, a portion are pain medication, but most of my regimen is about controlling nerve symptoms and ensuring appropriate amino acids and hormones to fight my pain naturally. And, of course to prevent a heart attack or stroke, a condition I also have called Cardiac Adrenal Pain Syndrome.

11. Regarding alternative treatments: I have mixed feelings. I’ve tried plenty that are a bunch of hooey! Any product that uses the word “pain” and the word “cure” together? Please don’t believe the hype. But, I do all I can to minimize intake of prescription medication and manage my pain naturally. Massage can be nice but for me, it’s too much because of my nerve damage. As stated above, I love supplements, and try and and all recommended by my doctor, so long as I have the resources to do so! I also use pain sprays and balms, to loosen tight muscles and prevent severe headache and body pain. Exercise is also important for all people with pain, because if you don’t use it, you lose it. Just walking some days is enough, but if I am up to it, I like to swim a little and of course, stretch. Nothing fancy because my body responds poorly when I overdo it–could be useless for days! As for trying new options? I go with advice from the doctors I trust, and/or knowledgeable pain patients I know/trust, to find appropriate treatments. Otherwise, it’s all a shot in the dark and often, a ton of cash down the drain!

12. If I had to choose between an invisible illness or visible: I’d choose NO THANK YOU! Are you kidding?! I mean, ok, visible would be easier in a lot of ways. However, “visible” for people with pain often means you’re wheelchair-bound or at least require a stabilizing product to walk, such as walking stick or cane. When I am well enough, I don’t need these stabilizers, and I am so thankful. Neither visible or invisible is exactly fun!

13. Regarding working and career: I’m an Advocate, first and foremost, these days. I also blog, use social media and sometimes do more, when I am physically able. It’s a struggle, and I cannot work a full 40-hour work week, but I know I am blessed to be able to do the things that I do!

14. People would be surprised: that I am in pain 24/7. Can you even imagine that? No joke! Try falling asleep when your arms are burning or you have a pounding headache and your muscles are in knots. It’s my everyday, people. Every darn minute. Yeah, it’s surprising–until I lived it, I had no idea it was even possible!

15. The hardest thing to accept: everything is challenging in ways most people don’t understand. Some days, people cut you slack, but before long, they ‘forget’ and are getting upset if you aren’t as capable as someone who is not in pain 24/7. I realize at times I over-promise. I know that in my heart I want and intend to do everything I say I will. But at times, it just doesn’t work out that way. It sucks to disappoint others, especially because I am super hard on myself. I cannot stand it when I disappoint someone. I was so Type A before, it isn’t in my nature to give anything less than 110%. And, how realistic is that, when I can only give 65% on a good day? I’m trying to find balance, and help others understand my limitations, too. Not the easiest thing in the world to do!

16. Something I never thought I could do with my illness: oh, so many things! Laugh til my stomach hurts. Use a computer again for more than 2 seconds. I find that my abilities change all the time. On one day, I may not be able to do anything, because my whole body hurts. The next day, I feel like Super Girl, cleaning the house like a whirlwind. The next day, I pay for it. And the day after, and the day after that. A few days later, I am blogging, shopping with family. Doing more advocacy work. It’s ever-changing, dealing with intractable pain.

17. The commercials about my illness are: Hmm. Well, I know of one. For Grace did a PSA with Jack Coleman on RSD/women in pain. It was great. But to my knowledge, there have never been any about Central Pain Syndrome. Or, for that matter, intractable pain. Maybe in the UK, but certainly not here! APF has done a lot of online stuff, but nothing on tv, that I am aware of. If there are more out there about chronic/intractable pain, someone please let me know!

18. Something I really miss doing: being young and doing crazy things on a whim… like a road trip, or a theme park, or hiking. Those things are just way too hard for me these days. I had so many things I wanted to do, but my pain started when I was in my mid-20s! I miss rollerblading all the time, that’s for sure. Even did some with my dogs. It was a blast!

19. It was really hard to have to give up: having a family. It sucks to have your illness make up your mind for you, rip the choice right out of your hands. I mentioned this at a family get-together earlier this year, and two people there looked at me, shocked. They were women in their late 40s, both who had nearly grown children. They said, “You still have time! Plenty of time!” I didn’t go into detail about the WHY, because if they didn’t get it, I wasn’t going to bring it up… this wound is so deep that I often just put it out of my head. If I talk about it too much, the tears inevitably come…

20. A new hobby I have taken up: blogging, social media! I love it, and it feels like I can reach so many more people, even if I am home, feeling sick and not able to go anywhere. It’s great as a tool to help others, as well as to get support myself…

21. If I could have one day of feeling normal again: I HATE THIS QUESTION AND REFUSE TO ANSWER IT. “What ifs” make me way too emotional. They are detrimental, honestly. It’s not fair to ask someone who is seriously ill to answer a question like this, because it’s very painful. Try being young and looking fairly healthy, and inside, you feel like you’re older than your grandmother. It sucks.

22. My illness has taught me: to be better to myself. To accept the things I cannot do and love myself anyway. At least, on a good day, I can do that!

23. Want to know a secret? Having intractable pain is really hard. It just is! I know I’ve become a stronger person, and I know that I can handle way more torment than the average person, as a result. But when it’s gone on for so long that you have no idea what it is like to be pain-free? It’s devastating. I find myself crying more easily, allowing people to see more glimpses of the cracks in my armor, the longer I have dealt with constant, severe pain. Especially on a tough day. So, if you see me crying? Know I am having a really hard time and just need a break–please!

24. But I love it when people: care enough to ask how I am and really want to hear the answer, not just the standard reply, “fine.” I am so thankful for the people close to me, who are there for me through good times and bad. Because let’s face it, the bad times can be pretty darn awful!

25. My favorite quote that gets me through tough stuff: I’ll go with the classic poster of a kitten hanging from a tree with the phrase: “Hang in there!” Kidding! Honestly, there’s no one thing that gets me through every single rough patch, but I do appreciate kind words from loved ones, soothing music, gentle hugs, a really silly comedy on tv, puppy kisses, occasional junk food, and yes, even a motivational quote or two. But right now, I just don’t feel like going all Deepak Chopra. So sue me 🙂

26. When someone is diagnosed: I am an open book. I share whatever I can, to help them. I remember being alone and afraid and not knowing what I was going to do. Losing everything, little by little. I would tell them to take advantage of the resources that are out there, by experts. I have 4 great ones at the top of http://www.thepainstore.com/articles.html. 🙂

27. Something that has surprised me about living with this illness: honestly, that I am still here. I’ve been mid-suicide more than once. The pain has been so severe, I was going to end it, right then. After surviving the worst, I found out that the many heart palpitations I’d had and the times I was nearly passing out? Those were my body nearly shutting down. People who are not treated quickly and effectively for intractable pain typically die within a few weeks. I am lucky–really lucky–to be alive. I managed to escape the clutches of Cardiac Adrenal Pain Syndrome (CAPS) throughout the worst of my uncontrolled pain. Most people with IP end up dying from a heart attack or stroke, when their heart and adrenals can no longer deal with the constant pain signal. This is CAPS. I’m living with a rare category of illness that I was supposed to have already died from. I know that it’s a miracle that I am here, and as a result, I owe it to everyone else with IP to share what I know, to help when I can… to be there for people who are seriously ill, like I was, hanging all alone at the end of my rope!

28. The nicest thing someone did for me: I’ve gotten a whole new family of support! Really! They gave me the greatest gift, by being there when no one else was… When the chips were down and I’d lost all hope, all faith in humanity, and even in God, I decided to go to just one last doctor. I told myself, even before that visit, “If he can’t help me, that’s it. I will find a way to end it, once and for all.” I was tired of the suffering–seven years worth! The kicker? This doctor didn’t just help me with my medical issues, he gave me the greatest gift by introducing me to the sweet, supportive wonderful advocate who would become my new sister! She’s truly helped me get back on my feet, after the pain had wore me down to nothingness… I am so grateful, to the doctor and to my sister for saving my life!

29. I’m involved with Invisible Illness Week: It’s part of Pain Awareness Month and anyone who is healthy enough should really be out here, fighting for all the people who are too sick to fight. It’s important to be doing this advocacy work, right now. Until everyone has timely and appropriate access to pain care, our work is not done!

30. The fact that you read this list: is so SO WONDERFUL! Thanks for reading it, but I hope, even more, that you will take the time to write your own! Or, if you aren’t a person with pain, know that it is precious gift that you read this! Whoever you have in your life with pain, they are very, very lucky. Reach out to them, and support them, do all you can… so that every person with pain is well enough to enjoy life again. Help him/her rebuild his/her broken body and spirit, and be joyful again!

One more thing… I hope you enjoy National Invisible Illness Week and Pain Awareness Month, one and all! *Please* keep the advocacy work going, all year long! -HG 🙂

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.

Intractable Pain: The Patient’s Guide to Medication Safety

30 Dec

by Heather Grace, IPJ Staff Writer

The life of a a person with chronic or Interactable pain can be incredibly challenging. Whether you have Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Trigeminal Neuralgia, Central Pain Syndrome, Adhesive Arachnoiditis or any similar illness, there are a lot of important issues on your plate. Policy-makers, physicians, insurers, and even the media, raise a whole host of concerns for persistent pain sufferers. It’s easy to let important things like medication safety slip to the bottom of your “To Do” list. The fact is, there are many precautions you can take, in order to make yourself–and your medications–safer. We’ve all heard the horror stories. None of us wants to feel as though we need to be looking over our shoulder. Why not be better prepared for common situations? This article should help you do just that! Let’s begin…

Strengthening Safety in the Doctor-Patient Relationship

Your physician’s most important role is ensuring your have effective pain management. However, medication safety also begins at the doctor’s office. My doctor asks me to sign a Prescription Agreement form each year. By doing so, he has a document that states very simply which pharmacy I go to for my medication, their address and phone number. At the bottom of this form, I am asked to agree to go to this pharmacy, and no others, for my pain medication. If for any reason my pharmacy changes, I am also asked to inform my physician.

Every pain management doctor should have such an agreement in place. If any issues arise, the office has easy access to where a patient’s medications are handled. Additionally, as of 2010, physicians can also submit prescriptions to pharmacies electronically–even prescriptions for pain medications. The prescription agreement protects the physician, and may also help legitimize the patient’s need for prescription pain medication. However, to protect pain sufferers, it’s probably best to take this idea one step further.

For a patient’s protection, an additional form should be generated–and updated–yearly, at the doctor’s office. A Pain Patient Diagnosis form is vital. This should include the date, patient’s name, how long they’ve been treated for Intractable Pain, and should also include an updated list of diagnoses. Additionally, it should contain a statement such as ” I, Heather Grace, have reviewed and agree to abide by all rules set forth by my pain management physician, Dr. X. I believe my condition(s), listed above, are permanent and incurable. I wish to be treated by Dr. X, for Intractable Pain, and understand that my treatment involves the responsible use of all medication(s) prescribed to me, as part of my pain management treatment plan.” The Pain Patient Diagnosis form, signed by both doctor and patient, is a huge step toward protecting both parties, legally.

For logistical reasons, it would be best to combine these two forms, into a single document, entitled something like “Pain Patient Diagnostic & Treatment Agreement 2011.” Why not bring this up with your physician, if they aren’t already doing something like this? Updated yearly, such a document should be kept on the patient at all times. For those with implanted medical devices, be sure this is noted on the form. The more protection you have, when dealing with the authorities or TSA agents, the better!

This sort of information is priceless, when it comes to your safety as a pain patient. As soon as you receive these sorts of documents, make copies! If at all possible, keep a copy in your wallet and purse; also keep a copy in your car. For those who do not drive, ask your caregiver or loved one to keep a copy in their car, on your behalf. Make extra copies for when you travel. Ensure you have extras stored somewhere safe, in case the originals are misplaced.

Strengthening Safety at The Pharmacy

In addition to keeping a copy of your diagnostic-treatment documents in your car, provide a copy to your pharmacy each year. This will make them feel safer, providing you with your opioid medications. Then, each month when you pick up your new supply of medication, take an additional step: save pharmacy’s information sheets, on each medication. Place all of these, as well as the receipt, in your glove compartment. Include the information from your doctor regarding your diagnosis, and you’re prepared for whatever comes your way! Be sure to switch out your medication information, monthly, so that the most recent prescription information is always on hand. If you are ever pulled over by the authorities, it’s easy to prove the medications you have with you are indeed yours, and were legitimately prescribed, to you, as a pain patient.

As a pain patient, I believe this makes it safer to carry my medication, in whatever container I choose. Let’s face it, anyone with a serious illness has several prescriptions. Carrying all of the original containers, provided by the pharmacy, can prove exceedingly difficult. When you’re just going out for a couple of hours, why bring more than a day’s worth of medication with you? Because the medication is clearly identified on these prescription sheets, anyone can easily identify each medication by color, the words printed on them, etc. Whether they are in a pill sorter or small pill container, there will be no doubt what medications you have with you, what they are prescribed for, and that they legally belong to you, a pain patient being treated for a legitimate illness. Of course, the laws vary from state to state, and it is always best to carry your medications in the original containers, provided by the pharmacy, whenever possible.

Coming and Going. Pharmacies are everywhere these days. Most are brightly lit and they appear to be a safe place to be. However, more and more, pharmacies are being robbed by people desperate for prescription drugs. Many are addicts; some are dealers. The street value of many medications, unfortunately, would astound most people. When you go to get your medication, just be cautious. If anything appears out of place, don’t go in. Wait, and even call the authorities if you suspect a robbery in progress.

When you leave the pharmacy, be even more cautious. Be aware of your surroundings. Don’t be fiddling with your purse to find your keys or reviewing the prescription info, with your head down, as you walk to your car. If you want to double-check your meds, do it in the pharmacy. It’s also best to get your keys out, before you head for the car. It’s these little touches can mean a big difference to your safety! Be extra careful if, when inside, either you or the pharmacist mentioned the names of the medications outloud. It’s best to have a good rapport with your pharmacist, and feel comfortable telling them the things that matter most to you. Before the issue arises, instruct your pharmacist that you prefer for them to show you the names of the medications you are picking up silently–by allowing you to review the pharmacy’s drug information sheets. This keeps you safer in a place that is increasingly becoming a target of would-be thieves.

Strengthening Safety at Home

We all know how vital opioid medication is to pain management in serious conditions like RSD/CRPS. We also know how dangerous pain medication can be, in the wrong hands. It’s a sad state of affairs that we have to worry about our medication, in our own homes, but it’s a fact of life these days.

There’s a senior community not far from where I live that’s had multiple break-ins. Why? Maybe it’s because there’s a natural assumption that older people experience more pain that the average person and thus, they’re more likely to be prescribed pain medication. Vicodin, Soma, Tylenol with Codeine and the like have been stolen from the seniors’ homes, with little to nothing else being disturbed. For an Intractable Pain patient, such a theft could be life-threatening. A chronic pain sufferer may take 30 or so Vicodin per month. Intractable Pain patients generally have stronger medication, often in large quantities. So, how do we keep our meds out of the wrong hands?

  • Know When/Who To Share Your Information With.
    Though you may feel it is best to share your health information with most service people, in an effort to speed things up, be cautious. Especially when the people you are speaking with have access to your address and may even handle your keys, it may be best to be vague, if you tell them anything. For instance, whenever your car is going to be serviced, give only your car keys to the technician. This sort of thing never seemed like a real potential for problems, but on several occasions, I’ve told my people at my local car dealership that I wasn’t able to wait for the car, because I was in so much pain. All it takes is one crafty person overhearing your conversation to act–and you could be targeted. Even when you are speaking with someone you know and trust, it’s a good idea to be aware of your surroundings, and anyone who might overhear what you’re saying. For instance, it might be best not to discuss the particulars of your doctor’s appointment on the phone to a friend, while a locksmith is installing new locks on the front door of your home. Especially in today’s world, exercising caution is a good practice.
  • Playing It Safe.
    Many patients I know, including yours truly, have safes. The safe I purchased was inexpensive and it’s large enough to hold a month’s medications, plus important paperwork. Whenever possible, a wall or floor safe is a patient’s best bet. Many excellent safes are available for under $350. You can get an idea of the cost of a good safe online; start by searching for inexpensive floor safes. If you know how to install your safe, you can save on installation as well. Ask a handy friend–anyone you know with their own set of tools. These safes come with directions; anyone that’s handy should be able to install one relatively easily.

    For those wanting extra protection, an alarm system is an excellent idea. Some are available without a monthly monitoring plan. For instance, a web site called x10.com has a 19-piece system for under $100. No monitoring plan is necessary–the system calls you if any of the 8 door & window sensors or 2 motion detectors are activated. It sounds like an excellent plan, though I cannot vouch for it’s effectiveness. Similar systems are sold at stores like Fry’s Electronics, and other electronics stores. However, any of the big companies with alarm systems that you see advertising all over do not have these sort of self-monitoring systems. Most require the monitoring for $30 per month, and up. Find the alarm that works best, for your situation.

    There are some pain sufferers I know who have built-in security systems, in the form of a large dog. If you have a service animal, chances are, the presence of a large dog is enough to frighten off would-be thieves. What I’ve always heard is, it’s not about total protection–it’s about making your home a less likely target. Many thieves merely want an easy place to break into. Statistics show that they commonly look for: (1) Easy access to the property combined with low visibility, (2) A Home that is/appears to be unoccupied, and (3) something worth stealing. Of course, there are a lot of ways to combat these issues. Read more about securing your home now.

  • Out of Sight.
    Because our main concern for possible theft are our medications, at home, never leave your prescription bottles in plain view through doors or windows. The break-ins at the senior community I mentioned earlier started with a woman taking pain medication. How was she targeted? Her prescription bottles were visible from outside; they were sitting on her kitchen window sill. Locked or not, it’s not safe. Her window was smashed and the bottles were taken. The thief never actually entered her home, and yet, he took her pain medication. Obviously, losing pain medication could prove very problematic, but sadly, a thief isn’t the only way they can be taken.

    We’ve already discussed the idea of a safe, and keeping meds out of the view of doors and windows. Realistically, though, where do you keep your day-to-day medication? My personal choice is to keep only a day’s worth of medication on me. I have nearly all of my prescription medication in my safe. Then, I keep my non-prescription items as well as about a week’s worth of pain medication, in a top-secret place somewhere in my home. Let’s just say, it’s not in a medicine cabinet or any other place where one might typically store medication.

    Why? I am extremely cautious about my medication falling into the wrong hands. Whether it be a friend, family member, plumber, locksmith, tv repairman, whoever… no one knows where my meds are kept, nor would they ever accidentally come across them. As for my single day’s supply of meds, they’re always right with me. If you’re planning to be away for short time, a small pill container can provide access to meds in your nearest pocket. Another convenient way to take a small amount of medication with you? Tiny re-sealable bags, called “Pill Pockets.” They’re for sale with various names at any drug store and all over the web. If you want/need a slightly larger bag, I have seen bags meant for jewelry at one of those discount chain stores. Additionally, you can use what is referred to as a “snack size” bag, sold in all grocery stores. Half the size of the standard “sandwich” bag, these bags will hold what most patients would need, for an entire day–or longer. Once you have your pill bag, it can be stored anywhere, pocket, wallet, purse. Wherever you choose to put them, make sure your meds are always with you, but not easily spotted.

    Treat your medication as valuables. Take it from me, this is the safest way to handle your medication, even at home. I’d guess that most pain patients know the value of their medication, but it’s still worth mentioning here. Wherever you think people are likely to look for your medication, don’t keep it there! Thieves would obviously check the medicine cabinet as well as shelves in your closet, jewelry boxes, etc. If you can think like the bad guys, you can elude the bad guys.

  • You Always Hurt The One You Love
    I’ll go ahead and admit something now, for the benefit of everyone else. In their youth, several of my family members abused street drugs, such as marijuana. And honestly, I have no idea what they’re up to these days. I guess my point here is, nobody can know that, really, can they?

    When I became a pain patient, I was far too open and honest with nearly all of my family members. Mostly because I was scared, and wanted support. So, all of them, including the sketchier ones, knew I was taking Vicodin. I was shocked when one of these people remarked what a ‘fun high’ he got from Vicodin. It made me sick inside, but I said nothing. Then, this same person asked if he could have one a few weeks later. I was so shocked, I didn’t know what to say. I muttered something about running low and that I couldn’t spare any. What do you say to a question like that? I went home and sobbed for a while, then tried to figure out what to do. I was very fragile back then, admittedly.

    Then it hit me… I told the most talkative (ahem, gossipy) family member about what happened, knowing my feelings would soon be known to everyone. I stressed how much that question hurt me. Then, I made it clear that I didn’t think that taking pain meds like Vicodin was in any way fun. Even more, I didn’t want someone to ask me for them, like they were some kind of party favor. It totally discounted what I was going through. Even worse, it made me wonder whether he, or anyone else in my family, thought this whole pain thing I was going through was some kind of joke!

    Nowadays, of course, my reaction would be drastically different. I would’ve probably calmly but rationally explained the plight of the pain patient, ’til he was bored to tears, and went elsewhere looking for something to get high on. I share this story for a simple reason: Friends and family may seem supportive, but the reality is, you can never 100% know anyone’s penchant for drug abuse. Some may privately judge you for taking pain medications, while others secretly wish they knew where you keep your ‘stash.’ It’s a sickening thought, and believe me, I never would’ve felt this way, til I was directly confronted with the issue. Call me jaded or call me enlightened; either is fine with me, so long as my medication is safe.

    I believe there are two reasons I was approached directly about my meds and this person didn’t just try to sneak some, on the sly: (1) He wouldn’t have had access. Even at a friend’s or family member’s home, I always keep my meds right with me. If they happen to be in a purse, that purse never goes out of my sight, for any reason. Don’t feel pressured to give up your purse, even at a fancy shin-dig. It’s your safety that’s important, here. (2) I have never been the type of person to judge what other people do. I’ve seen people smoke pot and drink to excess. I’ve never really cared what people around me do, so long as they are safe about it. I’ve driven people home a time or two, just to be sure they arrived safely. This family member obviously thought I’d be ‘cool’ with his request for my pain medication, merely because I’d never expressed disapproval over his past drug abuse. Realize that most people will not be this upfront about their desire to separate you from your medication. Protect those meds like the life-saving miracle that they are!

    Use my experience as a warning. Now, you have time to prepare yourself for the possibility of this happening to you: (1) Think of what you would say if someone you care about approached you for a pain pill, even if they came up with an excuse, like a toothache or menstrual cramps. Know that if you share meds with them, you are risking your care and they will likely come back for more. (2) Realize it is far more likely for people to take your meds, behind your back. Take every precaution–it’s better to play it safe, than have to try to explain to your doctor what happened. Or, worse yet, be pushed into a situation where you’re forced to file a police report about an incident with a family member, in order to ensure your doctor will continue to trust you and prescribe your medication.

  • Need-To-Know Basis.
    Since my eyes were opened in this most unfortunate way, I’ve decided that it is nobody’s business what medication I take, or even that I take medication for my pain. Not only do I leave the topic of meds completely out of the conversation with just about everyone outside the pain community; certain people haven’t been to my home ever since ‘the incident.’

    Even those who are invited to my home are not given an all-access pass. My bedroom door is generally closed and there is also a lock preventing anyone from even gaining access to the area where my safe is kept. I take this issue very seriously, because loss of medication is such a serious issue. Your doctor and your pharmacist count on you to keep your medication safe. Any careless behavior could mean you have a harder time getting pain medication in the future. Believe me, it happens; there are many sad stories out there. In fact, a recent articles that say the most common way young people get access to pain medication is through a friend or relative. It makes sense–just be careful!

  • Strengthening Safety at with Other Medical Professionals

    What should you do when asked about your medication use by a medical professional, other than your pain management physician? These days, I think it’s more important to protect myself than to provide specifics, whenever possible. Here’s why: I had a bad experience with a dentist when I told them exactly what medication I was taking. In order to treat me, they wanted my doctor to fill out a very detailed waiver form. Additionally, my chart had all these bright warning labels on them, causing several uncomfortable conversations. And, let’s face it, some biased treatment by people who think everyone taking pain medicine must automatically be an addict. As a result, I am now as tight-lipped as I can be, while still telling the truth.

    I provide a list of all non-pain medications, identifying them by name. Then, instead of listing my two different pain medications by name, I simply put “opioid pain medication.” I figure that this covers the topic thoroughly enough, for most circumstances. If I was ever asked for the specific names, I would provide them. However, thus far, it hasn’t come to that. I believe this does two things for me. First, it prevents me being judged by people who don’t understand. More importantly, it keeps a whole bunch of people who have access to my chart from knowing both where I live and what type of pain medication I have in my house. No matter the situation, I have to think about my safety, first and foremost.

    Why do dentists and other medical professionals ask for a list of the medications you are taking? The main reasons are to prevent drug interactions as well as to ensure you don’t have some underlying health issue that may cause you problems, if they perform a procedure. The vague term “opioid” covers that class of medications very well. A drug interaction that may exist for one opioid, likely exists for all of them. But, as I said, if I was ever asked for the complete list of my medications, I would give them–to ensure my safety in treatment, as well as the safety of my access to life-saving medication.

  • Pitter-Patter of Little Feet… or Paws.
    Adults, or even teens in the home, are one thing. But, what about small children or pets? Obviously, the strong opioid pain relievers which are intended for Intractable Pain sufferers can be dangerous, even to a grown man. It makes sense that they can be deadly to young children and pets. Did you know that even over-the-counter pain relievers can kill a cat or small dog? According to the American Veterinary Medical Association, the most common poison small animals are exposed to is medication. Over-the-counter medication is just as dangerous to young children. When it comes to prescription medication, especially pain meds, keeping them out of reach of children and pets is particularly important.

    In 2010, pain medications were the second most common poison exposure addressed by the National Capital Poison Center. (The most common exposure was cosmetics or personal care items.) Last year, 55% of all the calls received were regarding medications. Pain medications, and prescription medications in general, are far more dangerous.

    According to a 2008 study, the average age of kids ingesting meds meant for adults was 2. They were often toddlers, discovering the medication during exploration of their environment. The study brought to light many ways that children gain access to the meds, unintentionally, providing important ways to prevent infants, toddlers or pets from accidentally ingesting dangerous pain medication. It’s important to:

    • Understand child-resistant isn’t the same as ‘child-proof’–a child may still be able to open the caps.
    • Realize that a high shelf or cabinet is not a deterrent to young children–they can climb up on just about anything, making locked storage vital.
    • Discard unused medicine–if you don’t need it, why have it around? (See more information on proper disposal.)
    • Take meds with you if you’re called away–never leave them within a child’s reach, even for a few seconds.
    • Keep purses and bags out of reach, including those belonging to other people
    • Inform friends, relatives and babysitters about these dangers; it’s just as important as taking precautions yourself.

    All of these tactics are really about common sense, but as every pain patient knows, the occasional pill does spill. As the owner of 2 dogs, when this happens, it really scares me. I feel compelled to do what I can to pick up whatever I’ve dropped, as quickly as possible. However, we all know that most pills are round. They don’t just drop flatly to the ground–they roll. Because of my spinal issues, there are times when I am simply unable to get down on my hands and knees to go searching under furniture for a dropped pill–which always seems to be deliberately hiding from me! So, what can be done to keep pets and young children safe from dropped pills?

    First and foremost, try to pick them up yourself, as soon as possible. If you can’t, then you should:

    • Ask a loved one or caregiver for help, immediately, if they are available.
    • Remove pets or children from the area, until someone else can retrieve the pill.
    • Have someone vacuum your home and any vehicles you ride in, thoroughly, at least once per week (moving/vacuuming under all anything that pills could roll under).

    Because just one dropped pill can kill a child, some Intractable Pain sufferers prefer not to have young children in their home. It’s a difficult choice, but such a sacrifice does ensure children are safer. According to the study mentioned above, nearly all of the accidentally ingested medications were prescribed for an adult in the household. Furthermore, 92% of the meds were ingested by children in the home. Based on these statistics, it may be the safest choice to keep young children out of such an environment. If the child in question happens to be your own child, obviously this is not an option. Vigilance is necessary, to prevent a serious accident.

    When it comes to accidental ingestion by pets, the medications that are most appealing to pets are those with a sugar-based coating (such as ibuprofen) or a gelatin capsule or ‘gel-cap’ (commonly used for antibiotics and non-prescription supplements). Obviously, these smell like food to an animal, and are thus the most dangerous to them. This does not mean other medication is safe, left on the floor, however. Keeping this information in mind will help pet owners keep their home safer for their animals.

Strengthening Safety in the Car

  • Lock It, Hide It, Keep It.
    Just like safety in the home, common sense guidelines keep you and your medication safe, in the car. The Los Angeles Police Department released simple guidelines: Lock It, Hide It, Keep It! Always lock your car and ensure the windows are fully closed. Don’t leave your medicine or anything of value where people can see it–this includes things you typically keep in your car, such as a GPS which you affix to the window, as well as CDs. Hide these items out of view of would-be thieves–or better yet, when possible, keep them with you. People have broken into cars just to grab a pair of sunglasses!
  • Your Littlest Passengers.
    Whether medication is dropped in the home or in the car, it is equally dangerous to children and pets. If you ever have toddlers, dogs or cats in your car, it’s important to be sure they’re safe. In just seconds, your little passengers the can find whatever is on the floor of the vehicle. Ensure the car is frequently cleaned and vacuumed by someone you trust. And, of course, whenever possible, pick up dropped medication before it becomes a hazard to anyone’s safety. Because of frequent temperature changes, it is not a good idea to store extra medication in your glove compartment. I find it helpful to keep a small amount of fast-acting medication in a tiny container, in my purse, as a backup. Now sold at nearly every pharmacy chain and Amazon.com, I keep a couple of pills in a tiny resealable bag. They can be extremely useful–stick a couple of extra meds in your wallet, pocket, you name it.
  • Know Your Rights.
    Being pulled over by the authorities is a common fear among even the best drivers; for pain sufferers, this is more of a genuine concern. How do you explain the pain medication you have in your car? Several relevant issues have been addressed above, but obviously, there are greater concerns than just what container to put your medication in. There are much larger legal issues that truly would be best handled by an attorney. So, understanding that I am not an attorney and that the advice in this article is in no way a guarantee, let’s address some of these issues.

    According to the Flex Your Rights web site, and the accompanying DVD 10 Rules for Dealing With Police, there’s quite a lot you can do, to protect yourself:

    • Rule #1: Always Be Calm & Cool – A bad attitude guarantees a bad outcome.
    • Rule #2: Remain Silent – What you don’t say can’t hurt you.
    • Rule #3: You Have the Right to Refuse Searches – Saying ‘No’ to searches can’t be held against you.
    • Rule #4: Don’t Get Tricked – Remember, police are allowed to lie to you.
    • Rule #5: Determine If You’re Free To Go – Police need evidence to detain you.
    • Rule #6: Don’t Expose Yourself – Doing dumb stuff in public makes you an easy target.
    • Rule #7: Don’t Run – They’ll catch you and make you regret it.
    • Rule #8: Never Touch An Officer – Aggressive actions will only earn you a more aggressive response.
    • Rule #9: Report Misconduct – Be a good witness.
    • Rule #10: You Don’t Have To Let Them In – Police need a warrant to enter your car or home.

    All of these rules are words to live by. They were developed by a former police officer who really knows his stuff. When the authorities pull you over, get out your license, insurance and registration–be prepared to show them to the officer when asked. Put your pain medication out of sight, such as in the glove compartment or in your purse. Zip your purse closed. Even if you have a shiny cell phone sticking out, they could say it looked like a gun and thus had ‘probable cause’ to search. Don’t give them any reason to want to see what’s in there.

    As the officer approaches your car, roll down your window and keep your hands on the steering wheel, where they can see them. Smile. Politely ask why you were stopped, even if you think it’s obvious. Don’t say anything else. If they engage you in a guessing game, by asking “Why do you think I pulled you over?” Remain calm, say you don’t know. If they ask further, stand strong and nicely repeat, “I don’t know.”

    They can be really forceful. If an officer leans into your car and asks, “You don’t have any weapons in there do you? Mind if I take a look?” Questions like this are meant to throw people off-balance. You may be tempted to emphatically say, ‘No! Of course I don’t have any guns!’ The natural inclination, then, is to prove it. Police know this; don’t fall into their trap! Instead, when posed with such a question, very calmly say, “I do not consent to a search.” No explanations, keep it simple. Remember they are trained to shake your confidence.

    Trying once more to get under your skin, they may say things like “You know, innocent people consent to searches…” Hold your ground. Police also often ask compound questions to obfuscate meaning–one with a ‘yes’ and one with a ‘no’ answer. Don’t get tricked! Just state your position calmly, and do not get entrapped. Smile and repeat yourself: “I do not consent to a search.” If you give in, your rights immediately go out the window. Anything they find can, and will, be used against you.

    As an Intractable Pain sufferer, who among us can spend even one night in jail, while a mess like this gets sorted out? Don’t put yourself in a situation where you need to prove your innocence. Remember, if they don’t step into your door, they cannot find anything. Knowing your rights can save you lots of undue stress and even pain. Think you’ll forget this information, in the moment? Write these tips on an index card and put it in your glove box. Refresh yourself, if necessary. The officers always seem to take forever to approach the vehicle–it’ll give you something to do.

    Additionally, memorize your Miranda rights–they read them to you for a reason! “You have the right to remain silent. Anything you say can and will be used against you in a court of law. You have the right to speak to an attorney. If you cannot afford an attorney, one will be appointed for you. Do you understand these rights as they have been read to you?” Even though these are usually only read to you if you are arrested, these rights sum up all the areas of a traffic stop that are important, as discussed above. Keeping these in your car’s glove box could also prove beneficial.

    Other Useful Phrases: “Am I under arrest, or am I free to go?” “Am I being charged, and if so, with what?” “I retain my fourth amendment rights against unreasonable search and seizure.” These can all be useful phrases, but remember, Rule #2, above all else. If you continue to talk, they will continue questioning you. Whether in your car, your home or at the police station, remain silent as much as possible. Even if you’re just expressing your rights, you can unnecessarily lengthen your contact with the authorities. And, the police don’t especially like having ‘rights’ thrown in their face. Don’t rattle them all off, just to show what you know. If they continue to press you for answers, the most important phrase is: “I do not wish to be questioned without a lawyer present. I want an attorney.” Remember: Say only as much as is necessary, to get the heck out of there and go home!

  • Be Prepared for the Worst.
    Even more scary than being pulled over, how should we, as pain patients, handle the possibility of being drug tested? Whether at the scene of an accident or because an officer believes you’re driving under the influence, there are many important tactics you can use to protect yourself. There’s an excellent card with your rights printed on it–downloadable from the American Civil Liberties Union. It’s a very detailed paper with small print, covering every possible scenario. Read it thoroughly, and better yet, keep a copy in your car. (An easier to read copy is available at the ACLU web site.)

    A lot of what is on the ACLU card is similar to the 10 rules listed above–just in greater detail. Some additional things to keep in mind:

    • If you’re pulled over, you can refuse to consent to a search. However, if police believe your car contains evidence of a crime, it can be searched without your consent.
    • Both drivers and passengers have the right to remain silent. Many times, pain patients are passengers. If you are a passenger, you can ask if you are free to leave. If the officer says yes, sit silently or calmly leave. Even if the officer says no, you always have the right to remain silent.
    • If you are arrested, do not resist, even if you believe the arrest is unfair.
    • Say you wish to remain silent and ask for a lawyer immediately. If you can’t pay for a lawyer, you have the right to a free one. Don’t say anything, sign anything or make any decisions without a lawyer’s advice.
    • You have the right to make a local phone call. The police cannot listen if you call a lawyer.
    • Prepare yourself and your family in case you are ever arrested. Memorize the phone numbers of your family and your lawyer (Or keep a list with your license.) Make emergency plans regarding your medication; discuss this with a lawyer to determine the best way to ensure your life-sustaining treatment. Also discuss the fact that you are disabled with an attorney and find out the best way to proceed.
    • If you feel your rights have been violated, know that police misconduct cannot be challenged on the street. Don’t resist officers or threaten to file a complaint.
    • Write down everything you remember, including officers’ badge number and patrol car numbers, and any other details. Get contact information for witnesses. If you are injured, take photographs of your injuries, after seeking medical attention.
    • File a written complaint with the agency’s internal affairs division or civilian complaint board. In moscases, you can file a complaint anonymously if you wish.

      Call your local ACLU. And, of course, any questions you have should be addressed with a lawyer that is well-versed with the laws in your state. Arm yourself with quality information, so you can be as safe as possible, behind the wheel.

Strengthening Safety When You Travel

Pain sufferers realize that travel is difficult on the body, but it doesn’t have to be as stressful. When it comes to travel, ensure you have everything you need. Make sure the person you are traveling with understands your limitations, and be sure to speak up, if you need to change plans for any reason. Being open and honest will go a long way towards making your trip more enjoyable.

  • Planning Ahead.
    When it comes to packing, every pain sufferer has concerns. How exactly do you ensure safe travel–for you and your pain medication–with the ever-changing restrictions? Your first stop should be the Transportation Security Administration (TSA) web site. Be sure to check the current rules for disabled travelers. Also, visit check the TSA home page for any possible changes to these policies; up-to-the-minute changes can be found there. Ensure you are packed and ready to leave with plenty of time to spare. At least four hours before your scheduled departure, check the TSA site. Nobody wants to leave home without knowing there are unanticipated delays at their departure terminal! This web site can provide a whole lot of peace of mind.

    Beyond the TSA, there are many technological advances that make travel easier. If your departure gate has changed or the departure is delayed for any reason, most companies now have automated phone systems to provide this information. You can simply call the number listed on your ticket. When making your reservations, online or by phone, check to see if you can receive automatic updates. If you provide a mobile telephone number, you can receive text messages or even phone calls with information regarding your departure. Then, as your departure nears, you will get the information you need.

  • Luggage and Packing.
    As a pain patient, you may feel as though it is easier to put your medications into your checked luggage. Though this seem easier, it opens you up to serious risks, to both your health and the safety of your pain medication.

    Difficult or not, carry all of your medications with you, at all times. I find it easiest to keep my medications, as well as my money and identification, in a purse. (Guys, a small zippered bag works just as well.) When I travel, especially if it’s for a week or more, I take my original pharmacy vials with me. I also have a weekly pill sorter, to divide my meds into, for easy access. So long as I’ve got the pharmacy paperwork with me, there can be no doubt that it’s mine.

  • Paperwork.
    If you hadn’t already guessed, I also bring copies of my documentation from the doctor’s office, whenever I travel. You should too! If your doctor doesn’t have an annual document with proof of your diagnosis and need for pain medication, have him write a letter, similar to the agreement discussed above. Keep a copy of your diagnostic/prescription paperwork right next to your medication–it helps you answer any questions later on, if need be. Additionally, make an extra copy of this paperwork, and place it in your checked bag, in case you misplace the copies in your carry-on.

    Because I’m cautious by nature, I also make a copy of my license and/or passport, and place them with the medical papers, in my checked bag. You can never be too careful! Proof of who you are is important, no matter where you go. Plus, it provides people with your name and address, just in case your bag is lost!

    Another tip: Because I find it easier, I usually place any non-essentials, including comfort items, snacks or time-passing favorites in a separate bag–usually in a wheeled, airline approved carry-on bag. Whenever possible, I try to stow my ‘essentials’ purse inside the larger ‘non-essentials’ bag, when it is not needed (such as on my way to the airport). However, for the duration of the flight, I keep that purse with me, and stow the carry-on at my feet, or above me. I never have my medication, money or identification out of my sight!

    A final note on departure times: Leave earlier than normal for your destination. I generally give myself approximately two hours for a U.S. destination, to ensure I won’t miss my flight or cruise. Why? You want to ensure you have additional time for check-in at the airport, cruise ship, etc. Wherever you are going, assume the check-in process will be a bit longer than normal, because you will be up-front about your disability, your medication and your need for any special assistance/processes at check-in. My policy has always been: Assume the worst, hope for the best.

  • Checking In. Whether for a flight or a cruise, it’s important to let people know, as soon as possible, upon check-in, that you are disabled. Even if you do not believe you need any special assistance, letting people know you are disabled at the outset will prevent any issues during the screening process. How do you do this? Smile, ask how their day is going. Then, calmly and politely explain you are disabled and what extra precautions need to be taken, if any. Want to feel more official, as you discuss the situation with TSA? Why not invest in an inexpensive medical alert bracelet or necklace, to wear when traveling?

    For patients with a medication pump/stimulator or any other fragile medical equipment, it is always best to tell them, at the outset, where this device is located. Taking the guesswork out of an already tense situation makes things easier for you, and the screener. This is also the time to explain that you require a special manual ‘pat down’ screening. Explain that you need a private screening; no wand, no x-ray machine. Note: A private screening is the right of every traveler, disabled or not. For this reason, be sure to tell them you require this, so that your very delicate equipment is not damaged. Most TSA workers know the drill; they deal with thousands of people every day, some of them are bound to be pain patients.

    Tip: If at all possible, bring a fact sheet regarding your device with you. This helps explain what it is, what it’s for, etc. If you do not still have the paperwork that came with the device, there is sure to be something similar online. The simpler the better. Many such devices have a long, multi-page manual. They also have a slick, one-page marketing sheet, describing the device in simple terms. Always go for the simple, one-page explanation.

    If at any time your special request is not honored (or someone appears new or ill-informed), don’t back down. You need this special request, or you wouldn’t be asking for it. Smile, then confidently explain your needs and why you need them.

    I have heard from several frequent travelers that TSA Agents do not always provide a private screening in a timely manner. Screeners have explained that due to workload and number of screeners available, a private screen would take so long, the person would likely miss their flight. In these cases, pain patients have consented to a pat down screening in the open. This can be quite unpleasant, it not embarrassing.

    Keeping this in mind, if you truly want a private screen, plan ahead, giving TSA the extra time necessary to do so. If you travel out of a specific airport the majority of the time, why not call TSA and enquire about the time required to provide a private screening, to you, a disabled traveler? It never hurts to ask.

    If your airport experience is less-than-ideal, don’t be afraid to ask for a supervisor’s assistance, as calmly and politely as possible. Anyone can have a bad day; we’ve all been there. Remember, being a TSA agent is a difficult job; they’re keeping us all safe as we get where we need to go. You know the saying about the flies and the honey. Be nice and things generally go much better than if you explode. (Believe me, I know from experience–it’s not pretty!)

    One final note: If you ever feel you’ve been treated unfairly by TSA, it is your right to report the issue. Visit TSA’s Traveler Redress page for more information. Additionally, all travelers should check out TSA’s Civil Rights for Travelers. Travel can be a nightmare, but the better prepared you are, the easier it’s bound to be! And, it’ll be safer, as well.

Download a simplified guide, containing all the tips in this article now.

Written: December 30, 2010. Updated: February 10, 2011

© 2010-2011 Intractable Pain Journal & Heather Grace. All rights reserved.

%d bloggers like this: