A Great Letter About Chronic Pain

This post comes from a FaceBook site (see link below) and is unapologetically, a repeat of an earlier post on this blog. It's a letter that is obviously still doing the rounds on the internet but it is so well-written, also for people with severe neuropathy, that it has to be worth repeating once more. It is self explanatory but may just be worth printing out for friends and family if you suffer from neuropathic pain. The author is anonymous but he or she has my thanks.

Letter to People without Chronic Pain

 Posted by guest on May 22, 2006

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand …… These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN**********************************

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

AUTHOR UNKNOWN

http://www.facebook.com/notes/neuropathy-talk-on-line/a-letter-to-people-without-chronic-pain/10150525210097821

FDAs Opioid Letter To Prescribers

Today's post from the always excellent pain-topics.org (see link below) talks about a letter issued in march 2013 from the American FDA (Food and Drug Administration) to all prescribers of opioids. Thanks to the widespread abuse of opioids, especially in North America, the authorities are clamping down on the ease and regularity with which opioids are prescribed. This has led to many doctors and pharmacists, stopping prescription altogether to avoid legal problems. The consequence of this is that those people for who opioids are a necessary and unavoidable source of pain relief (especially from neuropathy) are finding that the drugs are, in some cases, far harder to come by. This letter from the FDA, far from rubber-stamping political pressure policies, is a sensible and well-thought out advice on how to prescribe opioids as safely as possible. Unfortunately thanks to the extent of the abuse problem, the majority are going to suffer at the expense of a minority. The drug companies can play a part by issuing slow-release versions to avoid the instant 'hits' caused by crushing tablets and then snorting them but these things take time. If you have been directly affected by this issue, please let our readers know of your experiences.

Letter from U.S. FDA to All Opioid Prescribers

Posted by SB. Leavitt, MA, PhD at  Wednesday, March 13, 2013

In early March, 2013, U.S. Food and Drug Administration (FDA) commissioner, Margaret A. Hamburg, MD, sent e-mail to select members of Congress assuring them that the “FDA is extremely concerned about the inappropriate use of opioids, which has reached epidemic proportions in the U.S., becoming a major public health challenge.” She noted that, “While much of the prescription drug abuse problem is attributable to illicit use, which can include sharing medication with family and friends or theft of the drug from home medicine cabinets, legitimate use of medications for pain may also lead to unnecessary adverse events, addiction, and death for some patients.”

Dr. Hamburg asserted the agency’s view that front-line healthcare professionals, especially physicians and other prescribers of opioid analgesics, can and should play an important role in efforts to reduce the adverse trends. In that regard, she issued an open letter to all prescribers, urging them to take advantage of educational programs and other actions designed to “promote responsible opioid prescribing, improve pain management, and minimize prescription drug abuse and diversion.”

Following is the text of the FDA’s letter to opioid prescribers, including active links (opening in separate browser windows) to the websites and documents that are referenced.

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Attention Prescribers: FDA seeks your help in curtailing the U.S. opioid epidemic

Summary

In light of the expanding opioid epidemic in the U.S., FDA urges prescribers to take advantage of training on opioid prescribing, available as of March 1, 2013. This voluntary training will be provided at little to no cost through accredited continuing education activities supported by independent education grants.


Taking advantage of training opportunities on opioid therapy, now and in the future, is one of three key roles that FDA sees for prescribers in helping to curtail this pervasive problem. The other two are: knowing the content of the most current drug labels for the opioids they prescribe, and educating patients about the appropriate use of opioids, their potential risks, and proper disposal techniques.


FDA-approved drug labels are frequently updated based on additional science, new benefit-risk information, or public health implications regarding the medication. Labels of extended release and long-acting opioid drugs were changed in July, 2012.

Introduction

Misuse and abuse of prescription opioids has reached epidemic proportions in the U.S. While much of the problem is attributable to illicit use, appropriate use of medications for pain may also lead to unnecessary adverse events, addiction, and death for some patients. No group can be more effective in reducing this trend than our nation’s front-line health care professionals, especially physicians and other prescribers.

FDA sees three key roles for prescribers in curtailing the U.S. opioid epidemic, 1) ensuring that they have adequate training in opioid therapy, 2) knowing the content of the most current opioid drug labels, and 3) educating patients about the appropriate use of opioids, their potential risks, and proper disposal techniques.

Take advantage of important training opportunities

As the opioid epidemic has evolved in recent years, extended-release (ER) and long-acting (LA) (ER/LA) opioids have clearly emerged as products with the highest potential for harm, misuse, and abuse. These products contain large amounts of opioids in a single dosage form, sometimes in sufficient quantity to be lethal, especially in children, and they are a prime target of drug abusers.

In July of 2012, FDA approved a Risk Evaluation and Mitigation Strategy or REMS for these products. A REMS is a risk management plan for a manufacturer to implement that goes beyond the requirements in the drug prescribing information to manage serious risks associated with a drug.

An important element of this REMS is the availability of voluntary ER/LA opioid training programs, at little to no cost, to all U.S. licensed prescribers. The first of these programs is available as of March 1 and more will become available. Although the programs will be funded by opioid product manufacturers, the content will be objective and independent.

The programs will be offered by independent providers of continuing medical education (CME) and based on an FDA blueprint that was developed with input from a wide range of stakeholders. Included will be information on weighing the risks and benefits of opioid therapy, the appropriate choice of therapy for each patient, and managing and monitoring patients and counseling them on the safe use of these drugs.

The program also will include learning to recognize potential for, and evidence of, opioid misuse, abuse, and addiction, as well as general and drug-specific information about ER/LA opioid analgesics. FDA encourages all opioid prescribers to take advantage of this valuable training to help ensure they have adequate and up-to-date training in opioid therapy.

More information can be found at http://www.er-la-opioidrems.com/, which will be updated as additional opportunities become available.

Review and know the most current opioid drug labels

The July 2012 REMS for ER/LA opioids also included significant changes to the FDA-approved drug labels for these products. The revisions focused on making the labeling consistent among ER/LA products, and on increasing the prominence of information available regarding risk and precautions, such as those for abuse and misuse, respiratory depression, and accidental exposure.

The drug label, or package insert, that accompanies all FDA-approved medications is the most complete source of information on the drug. Drug labels provide important safety and efficacy information and clinical data to prescribers on the benefits, risks, and appropriate use for all FDA-approved drugs. The FDA-approved drug label is one of the most useful tools prescribers have for providing safe and effective opioid therapy to their patients.

As with all FDA-approved drugs, each ER/LA opioid product label has information unique to its own chemical compound and formulation. However, ER/LA opioid labels also share many important similarities. Therefore, maintaining a thorough knowledge of the drug labels can help prescribers inform their decision-making to ensure safe, appropriate, and effective use.

Labeling for all FDA-approved opioids can be found on the Drugs@FDA website, as well as at pharmacies and on many manufacturers’ websites. Labeling is also the root source of information prescribers receive from a wide variety of commercial online reference products and other resources educating prescribers about the safe and effective use of FDA-approved drugs.

Keep up with changes to drug labels. It is important to know that drug labels may change as new information on any FDA-approved products becomes available and that these changes occur frequently. We encourage prescribers to regularly review these changes. FDA’s MedWatch site provides easy access to safety labeling changes for FDA-approved drugs. This resource clearly identifies the parts of the label that have changed.

Help educate patients to use opioids safely and effectively

Patient education is vital to safe and effective opioid use. FDA urges all prescribers to ensure patients using opioids are appropriately informed of the risks and benefits of these drugs and fully understand directions for their use. The opioid drug labels also provide prescriber information related to patient education.

FDA-approved Medication Guides are key patient education tools. Pharmacies are required to provide them to every patient who receives an ER/LA opioid. Prescribers can also download all available Medication Guides for use in their offices. Among other valuable information, Medication Guides for ER/LA opioids inform the patient on safe disposal of their unused medication. FDA has also created a patient counseling document that prescribers can use to help educate patients on the safe and effective use of opioids.

Conclusion

FDA remains committed to making sure that patients in need have continued access to appropriate pain medications, while also ensuring that all opioid products are used as safely and effectively as possible under the supervision of prescribers armed with sound information and training. Prescribers are critical to successfully curtailing this national problem.

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COMMENTARY: Attached to the letter, as examples, Dr. Hamburg provides specific information available in the FDA-approved labeling for two opioids — OxyContin® (oxycodone controlled release) and Dolophine® (methadone) — that the FDA considers to have exerted a “particular impact on the epidemic.” That information can be accessed [here].

The FDA appears to be under increasing pressure from Congress to do something about problems associated with opioid analgesics, especially overdoses and deaths that have been sensationalized in the news media. In a great many cases, reporters have focused unilaterally on tragic outcomes among persons who have misused or abused these medications in some way, without any equal balance on the millions of patients with pain who need opioid analgesics on a daily basis to thrive and survive, and are compliant with instructions for safe use of the drugs.

It is interesting that Dr. Hamburg places much emphasis on prescribers knowing and following information on FDA-approved product labeling — which is appropriate. However, the agency also is facing making a decision regarding a petition from last summer submitted by PROP (Physicians for Responsible Opioid Prescribing, most recently discussed in an UPDATE here) that would significantly change opioid-product labeling in terms of indication, dose, and duration of therapy.

Thus far, the FDA has exhibited admirable restraint in not leaping to judgments or making changes based on the weak, biased, or deficient evidence that is available to support the petition. Agency staff have patiently listened to testimony, gathered comments, and (we assume) are evaluating all input from objective, evidence-based perspectives.

Meanwhile, the new ER/LA-Opioid REMS — for extended-release and long-acting products — is still in a start-up phase, and the FDA is wise in giving that program a chance to take hold. Prescriber education is a critical component of the new REMS; although, as of this date (3/13/2013), few accredited programs are available and only one continuing education course was listed at the industry-supported website [here].

As for patient education, which is also deemed critical for reducing opioid-related problems, the selection of available materials is sparse. The patient counseling document mentioned in the FDA letter is brief, one page, and lists some essential “do and don’t” admonitions, but it does not provide a proper understanding of opioid risks and safe use, how to recognize adverse reactions or other problems, and being prepared for what to do in an emergency. For that sort of patient (and caregiver) education we recommend our Opioids911-Safety program available at Opioids911.org.

http://updates.pain-topics.org/2013/03/letter-from-us-fda-to-all-opioid.html