It’s understood that disease is a symptom — it’s a signal that something’s wrong. However, there is a significant number of people that suffer from chronic pain and, partly because of this, the discussion is now turning to whether pain, itself, should be classified as a disease. As with a lot of things, there is good news and (maybe) not-so-good news in this. Read more in my article at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/is-pain-a-disease/
The physical pain of a chronic illness is bad enough, but there’s a lot of emotional pain involved as well. A good amount of this is caused by remarks made by other people. Sometimes this is well-meaning (but uninformed) and other times it’s more malicious. After almost a decade with the disease, I’ve come up with some personal tactics to deal with these.
Read about them here: www.rheumatoidarthritis.net/living/sticks-and-stones-arent-the-only-things-that-hurt/
One of the blogs I follow is healthskills.wordpress.com. It’s written by a woman in New Zealand who originally trained as an occupational therapist but who has since achieved her masters in psychology followed by her Ph.D. The blog’s audience is health care providers but I find the posts approachable as well as being quite thoughtful and insightful, especially when they enter into areas of why things are done or why they happen and the effects not only on the patient but the therapist.
A recent article discusses the question, “What is Pain For?”. It turns out the answer isn’t quite as straightforward as you might think and has a lot to do with both being aware of and defining one’s self. I was especially struck by a quote in the post, as follows:
Our sense of self also disappears when we experience pain we can’t escape and we can’t make sense of. Throughout the time while people are trying to label their pain, establish the meaning of their symptoms, and while people are searching for a solution to their pain, people’s experience of both time and “who I am” is threatened (Hellstrom, 2001).
My husband always knows when I’m not feeling well — not because I tell him — but because I get quiet. I stop interacting. I lose interest in doing things I usually enjoy. I stop being the person he knows me usually to be.
I know this is true of a lot of people. When they hurt, they get quiet or grouchy. They don’t want people around. All they can really focus on is trying to be as comfortable as they can and perhaps find a way around or through what’s causing the pain.
Which now brings me to my rant. (You’ve been warned …)
When we deny deserving people appropriate pain relief, we are denying them their right to be themselves. We have denied them their ability to express themselves as their true individual selves. All we have left them with is their ability to respond to their pain.
I don’t use opioid pain relievers on any kind of regular basis (primarily for post-surgical pain), but I am touched by the lives of many people who do. They use them responsibly, and often as a last resort, to manage the chronic and debilitating pain that comes with long-term illness. These drugs are essential to their ability to function as humans and, as it turns out, the ability to define who they are as people.
I understand, but at times can’t fathom, the current opioid crisis that we’re in. However, the current climate of overreaction to the point of denying people the ability to control their pain is not the answer.
We have to do better.
**Note that these views are my own and do not reflect any views expressed by the author of HealthSkills.wordpress.com.
I got an interesting comment from Open Doctor on one of my posts concerning the recent restrictive guidelines for prescribing opioids. It was information on a website (http://www.opendoctor.io) that allows you to search for doctors, not only for pain but for a number of conditions. The possibly unique thing about this site is that it lists the doctor’s opioid prescription experience.
Let me just say that I am providing this information as just that — information. Other than taking a cursory test drive of the site, I know nothing about the site, how the doctors are listed or qualified or how accurate the information is. But in an effort to provide those that visit my blog with a wide range of information, I am happy to pass it along so you can add it to the mosaic of resources that you might find useful.
I found it a bit clunky to use, but I did eventually successfully come up with an extensive list of doctors (both MD’s and DO’s) in Dallas that included information on their opioid prescription experience. I would say that a number of these doctors were surgeons who appropriately prescribe pain medications for their post-surgery patients and who, therefore, might not be candidates for overall pain management. This was, no doubt, a result of the search terms I used and you could probably come up with a more defined list.
If someone were to ask my advice on finding a pain doctor, I would first recommend talking to your existing medical team for recommendations. Ask your PCP, your rheumatologist, and/or any orthopedic surgeons on your team.
As a second resource, many health insurance websites have a “find a doctor” function on their website. This is a great tool because you can be assured that the doctors are within your insurance network which can be important.
As a third resource you can use a simple internet search. I googled “Pain Doctors in Dallas” and got 754,00 hits. If you choose this more general route, I would suggest that you do some due diligence on the qualifications of the physician you choose.
The more I research the opioid situation the more I am amazed. It’s not only the opioid-related deaths, in 2012 there were more than 700,000 hospital stays related to opioid overuse in the US. That’s nearly 2000 hospital stays every single day.
The problem I have is that the statistics being used by health, legislative and law enforcement bodies lump the illicit opioids (including heroin and other opioids obtained without a prescription) with the legitimate pain management used by people who live with chronic pain. The guidelines I’ve seen that outline recommended non-prescription pain methods have a lot of merit. However, the people I know with chronic, debilitating pain have already tried all of those methods — exercise, meditation, acupuncture, etc. If they worked, they would happily use them. Unfortunately for many, the only thing that stands between them and a life of disabling misery is pain medication.
I applaud the efforts of recognizing that we need to take control of opioid abuse. But we cannot and should not implement those efforts at the expense of the most vulnerable in our midst — those that live in chronic pain.
Thanks for checking in.
Meet CARA. CARA stands for the Comprehensive Addiction and Recovery Act which was overwhelmingly passed by Congress then signed into law by President Obama in mid-July. The legislation is designed to empower both medical professionals and law enforcement officials with more tools to help drug addicts. There is, predictably, a lot of discussion about this act (particularly in an election year), not the least of which is how the now-approved programs will be funded. But what concerns many of those in this country who suffer from a chronic disease is that it appears to focus on those who abuse drugs with little regard to those with a legitimate need for pain relief.
Read the rest of this article at: https://rheumatoidarthritis.net/living/what-about-the-patient-in-pain/
So, pop quiz. Describe your RA in one word. (And please feel free to share your word with the rest of us in the “comments” section below.)
At various times since my diagnosis eight years ago, I’ve been asked to describe or explain or discuss RA a number of times. This latest one-word question was asked as part of RheumatoidArthritis.net’s 2016 RA in America Survey. (If you haven’t taken it, I encourage you to take a few minutes to do so. Links to this year’s survey and the results of last year’s are on their site.)
My word: Relentless.
I’ve used a lot of words to describe my RA, some of them with four letters. And maybe this is just how I’m feeling at the moment. But honestly, I am really, really tired of having RA and its relentless attack.
I go on vacation; RA comes with me. I try to sleep at night; RA wakes me up. I try to get stuff done in the day; RA interrupts. I’m feeling really good; RA decides to flare.
Prior to RA, everything was temporary. Got a cold? Wait a week. Have an infection? Take some antibiotics. Sprain an ankle? Take it easy for a few days. That’s because prior to RA everything would eventually go away.
I think when you’re told that you have a chronic, incurable disease, your mind goes back to prior experience, or at least mine did. And that experience included colds, infections, and sprains that eventually cleared up. I had this image of joint pain popping up a couple of times a year (maybe) then leaving me alone the rest of the time.
I do okay most of the time, but I’ve learned to live with — or perhaps “live around” — RA. I know to move slowly in the morning because everything is going to be stiff and painful for a while (generally until I have a hot shower). I wear comfortable shoes and try to eat right and take my meds and show up to have labs done every four weeks. RA and I have become uncomfortable roommates.
Even on those days where I’m feeling pretty good, I can tell I’m losing ground. I can’t grip as well or as for as long as I used to, even a few months ago. Standing (or for that matter, sitting) for long periods is out of the question. Kind of like a new grey hair or a new “smile line” around my eyes, it seems like I find more evidence of RA’s relentless pursuit every day.
But I also have other words for RA. Words like “hopeful” because there are so many more new treatments on the horizon, and there is so much more education and information and, especially, patient empowerment than ever before.
So share your word (PG13-rated, please). And thanks for checking in.
You know that question they ask? The one where they want you to rate your pain on a scale from one to ten. Sometimes there’s even a chart with a smiley-faced “one” that progressively changes into a very unhappy “ten”. I hate that question. First of all, the person asking it may not really care, they’re just filling out a form. Secondly, RA-related pain can vary not only from day-to-day but minute-to-minute, so how do you quantify it?
I once built my own pain scale based around Disney’s Seven Dwarfs. The scale ranged from “Happy”, meaning no pain, to “Doc” when it hurt badly enough to see a doctor, to “Dopey” when I had to take enough pain medicine that I wasn’t functioning very well. It wasn’t any more useful than the “one-to-ten” scale, but it was a lot more fun.
Doctors and patients both will tell you that pain is very subjective. What is extremely painful for one person can be perceived as mildly painful for another. There is a lot of discussion of why this is including individual tolerances for pain as well as associated emotional elements. And while perception really is often reality, it seems that it would helpful for everyone if there were clinical, quantitative ways to actually measure pain.
Which brings me to something very interesting that’s been happening to me.
Read the rest of the post here: https://rheumatoidarthritis.net/living/can-pain-be-measured/
With RA it seems like there is always something going on: pain, swelling, even the occasional fever. So how do you sort out what’s “normal” and when you need to see a doctor (outside your normal checkups)?
First of all, just let me say that in case of any doubt, seek medical attention immediately. This includes severe things like profuse bleeding, vomiting, symptoms of heart attack or other life-threatening signs.
But beyond those things that are clearly emergencies, I use a series of “check-boxes” to decide if something is outside the norm enough to warrant a doctor visit.
Read the rest of the post here: https://rheumatoidarthritis.net/living/when-to-see-the-doctor/
Today I read a MedPageToday.com article about experts responding to the new FDA Opiod Action Plan. I won’t take the time to paraphrase the article which contains links to the agency’s statement as well as other insights, but you can access it here: http://www.medpagetoday.com/PainManagement/PainManagement/56178?xid=nl_mpt_DHE_2016-02-13&eun=g999342d0r.
Coincidentally I read an article in this morning’s The Dallas Morning News about the widening lifespan gap between the rich and poor. http://www.dallasnews.com/lifestyles/headlines/20160212-life-span-gap-continues-to-widen-between-rich-and-poor.ece While factors like wealthier people smoke less and are less obese were mentioned, the article also stated, “More recently, the prescription-drug epidemic has ravaged poor white communities …”
If you do a Google search, you can find pages of links to discussions about drug abuse and addiction but very few about the actual number of people who are in great pain and who depend on prescription pain relief just to make it through the day. As Time magazine reported in January 2013 after the FDA announced its last revamp of opioid drug regulations (http://healthland.time.com/2013/01/31/fda-action-on-vicodin-may-mean-more-pain-not-less-addiction-or-overdose/), those regulations may result in more pain but not decreased addiction or overdose. Certainly that round of regulations placed considerable barriers for people with legitimate need for these drugs in their chronic battles against pain. However, it does not appear that the regulations made any impact on the number of people who were abusing them. If anything, abuse has continued to rise.
And yes, there is abuse. Unfortunately, there is abuse of all kinds in our society. There is abuse by corporate executives who raid the corporate till, by politicians who take bribes, charities that misspend trusted funds, alcoholics that drink the rent money, teachers that have sex with underage students. The list goes on and on and on. But we don’t comprehensively condemn all executives or charities or politicians or even alcoholics.
Prescription opioid drugs are a tool that makes many people’s daily lives livable – just like a wheelchair does for many people. Just as wheelchairs make people mobile, pain medications are the vehicle that enable people to actually participate in life. So I wondered: what if we substituted the word “wheelchairs” for “drugs” in the conversation.
While I read about many politicians ranting about opioid drug use, I can’t see the same rhetoric coming out of their mouths if the topic were wheelchairs. Instead, I believe there would be a more reasonable discussion about targeting wheelchair abuse rather than making wholesale changes to policies that could condemn deserving people to a life of immobility. Can you hear a politician saying that we should require a patient to go to their doctor every month to make sure they’re still disabled enough to use their wheelchair for thirty more days? It’s a bit ridiculous, but no more ridiculous than thinking that chronic pain caused by an incurable condition like RA or MS or fibromyalgia will magically disappear.
And I have to wonder, just in general, WHY? Perhaps, unlike drug cartels who import illegal drugs into the country or home-grown meth dealers with bathtub chemistry sets, opioid pain relievers in this country are manufactured and/or distributed by American pharmaceutical companies that are already among the most highly regulated businesses in the world. Unlike pouring millions of dollars into the war against drugs, it takes very little effort to tighten the screws a little bit more on an industry you already have under your thumb.
But the fact of the matter is, pain is torture. It always has been. From the medieval torture dungeons and the Spanish Inquisition through potentially illegal activities at Guantanamo Bay, torture/pain is what we use to punish people. By placing barriers and restrictions that inhibit patients in pain from receiving needed medication, we wind up potentially sentencing millions of innocent people to torture. These types of sanctions, as history has already demonstrated, do not impact illegal use, but they do punish people who are already suffering.
In researching some of these facts, I found very few balanced articles or sites that support patients’ rights in this area. One of them is http://www.uspainfoundation.org/. I am not recommending that you join any particular organization. What I am recommending is that one way or the other you make your voice heard.
Wishing you a pain-free day. Thanks for checking in.
I recently read an interesting article about how humans formulate words that connect and convey internal physiological/physical situations to the outside world. A couple of early examples would be the infant crying when they are hungry or in pain morphing into the toddler who can actually say “hungry” or “hurt”. Humans also learn words that convey external situations to internal feelings, like “hot”.
It struck me that this process does not stop as we grow. In fact, this early development helps define our reaction when we hear others say those words. The word “hurt” may conjure up the pain of a skinned knee for one person compared to more traumatic pain for someone else.
In addition, I realized we continue to connect both our emotional and physiological feelings to specific words as we have new experiences. For example, since my RA diagnosis seven years ago, I’ve had conversations with or read many discussions by patients concerning the infusion experience. The words used by (and therefore both the emotional and physiological impact on) patients varied greatly depending on the infusion environment. Probably the most extreme examples are the experiences discussed by patients who undergo infusion in a highly clinical environment, often side-by-side with terminal cancer patients who are also receiving infusion treatments. Compare this experience to patients who receive infusions in a more private, comfortable setting. The people in the clinical environment use words like stressful, depressing and discouraging. Those who receive their infusions in the other setting use words like calm, easy, and reassuring. I can’t help but believe that the same word, “infusion”, conjures up a completely different response and imagery from the two groups of people. Given the demonstrated effect of both stress and positive thinking on medical outcomes, I can only wonder if the less-clinical environment also helps support a more favorable response to the medication.
Read the rest of this post here: https://rheumatoidarthritis.net/living/the-power-of-words/