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ACTION ALERT: Telling Your Chronic Pain Story Now is Important

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Reprinted with the kind permission of the National Fibromyalgia & Chronic Pain Association.

Why would telling my story make a difference? Your voice matters to policy and law makers.

DOES CHRONIC PAIN AFFECT YOU OR SOMEONE YOU CARE ABOUT?

The National Fibromyalgia & Chronic Pain Association and other pain patient organizations were recently asked to reach out to people with pain and their families directly to ask about their experiences.  People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to know if you are receiving adequate pain management and relief. Telling your story can affect their policy decisions and new areas of research.

There are three ways to provide information: (1) upload a personal letter on this website, (2) answer questions that will automatically create a letter, or (3) participate in an anonymous survey.  Legislators ask "how does this affect my constituents?" Your address is needed by congressional offices to verify you as their consituent. Being as open as possible in your letter to your legislator will help them understand the impact of living with a chronic pain illnesses.

Your letters will be combined with others and hand-delivered to legislators between June 14-18. Letters received after that date will be delivered on bi-monthly intervals. To be effective, we estimate that 10,000 responses are needed to be representative of how chronic pain affects people’s lives in the United States.  Please ask others you know to help in this major initiative.   

  1. Does chronic pain illness affect your life on a daily, weekly or monthly basis? If so, how? Below are things to consider when telling your story.

  2. Are you having a hard time getting through your day because pain stops you? If so, how?

  3. Are you unable to work productively or to the level you'd like? If so, how?

  4. Are you avoiding medical appointments due to expense? If so, how?

  5. Can you get appropriate medications or treatments for pain relief? Has that access changed over time? If so, how?

  6. What obstacles prevent you from finding appropriate access to pain care, if any?

  7. Have you disclosed your full diagnosis or experience with your chronic pain illness with those around you? If so, who (friends, family, co-workers, boss, etc.)? If not, why?

  8. Has your chronic pain illness affected your ability to work or your productivity? If so, how?

  9. Has your chronic pain illness affected your education or career goals? If so, how?

  10. Does chronic pain limit the activities you love most? If so, how?

  11. Are you unable to participate in family or social activities? If so, how?

  12. Are you hiding anxiety or feeling depressed about what the future holds with a chronic pain condition? If so, how?

  13. Are you experiencing suicidal thoughts from fear or exhaustion in dealing with constant pain? If so, how?

  14. Are you feeling that you have to defend your actions in seeking pain relief? If so, how?

  15. What led you to seek a diagnosis, and what led a clinician to diagnose you? Were there any hurdles in achieving a diagnosis? If so, what?


Take this opportunity to advocate on behalf of yourself and those you love who live with chronic pain.  Go to yourvoicematters.info and TELL YOUR STORY.

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5 thoughts on “ACTION ALERT: Telling Your Chronic Pain Story Now is Important”

  1. anna_jacobs says:

    I get a lot of relief for my fibromyalgia from taking over-the-counter magnesium. Never mind the recommended daily amount, I need at least four times that, spread out over the day. It reduces the pain by about 80%.

    I can’t seem to store magnesium in my body, so if I have a more active day, I need an extra dose. It’s also stopped my heart fluttering and the ‘restless legs’ that sometimes afflicted me.

    My nutritional medicine doctor has my magnesium tested regularly ‘in case’ but it comes out at low to normal. Go figure!

  2. Red_Lawhern says:

    As a 20-year care giver and supporter of chronic neurological face pain patients including my wife, I talk with hundreds of people in pain every week.

    Among the 100 million chronic pain patients in the US, a few million are treated with opioids as part of a long-term pain management plan. Opioids are almost never the treatment of first resort. They are used only after the failure of multiple other therapies.

    Addiction is rarely an issue among genuine chronic pain patients who are properly screened at initiation of therapy and actively managed with periodic followup assessments. However, in the current atmosphere of hysteria over a largely fictitious “epidemic” of deaths by street drugs, thousands of chronic pain patients are being involuntarily tapered down from opioids or outright deserted by doctors without referral. Doctors are going out of pain management practice fearing DEA prosecution for treating their patients effectively.

    The key culprit in this process seems to be the March 2016 issuance of restrictive treatment guidelines by the US Centers for Disease Control (CDC). Careful examination of the guidelines and the published presentations of the consultants’ working group that wrote them reveals several alarming facts:

    (1) The working group included no doctors who actually treat chronic pain patients regularly.

    (2) Much of the science claimed to support the guidelines was factually weak or biased in favor of addiction treatment specialists.

    (3) Pain patients themselves were under-represented and the input from over 4,000 public comments from the patient community was outright ignored.

    It is time to withdraw the CDC guidelines on prescription of opioids to adult non-cancer chronic pain patients. The guidelines need to be rewritten with far more attention to the lack of realistic non-opioid alternative therapies for chronic pain. Moreover, it is is time to withdraw highly restrictive State laws that are forcing the closure of pain management practices in several US States.

    IT IS TIME TO STOP THE WAR AGAINST CHRONIC PAIN PATIENTS!

  3. Kricket9 says:

    WHEN MY DOCTOR CALLED ME AFTER AN MRI SEVERAL YEARS AGO, HE TOLD ME HE WAS PUTTING ME BACK ON OXYCODONE AFTER A MEETING WITH ALL THE DOCTORS IN HIS GROUP. WE HAD TRIED CUTTING ME DOWN ON IT, NOT KNOWING WHAT AN MRI WOULD REVEAL I ASKED HIM HOW LONG WOULD I HAVE TO TAKE OXY (ASSUMING THERE WOULD BE SURGERY), AND HE SAID, “FOR LIFE.” AND IT’S WRITTEN IN THAT CHART. THERE WAS, AND STILL IS, NOTHING THEY CAN DO FOR MY BACK.

    I HAD BEEN THROUGH CHRONIC PAIN FOR MANY YEARS ALREADY AND ON AND OFF OF HYDROCODONE AND OXYCODONE. I ALWAYS THOUGHT THE NEXT DAY WOULD BE BETTER…I WOULD WAKE UP TO FIND I DIDN’T HURT, OR DIDN’T HURT AS MUCH ANYMORE. I HAD THE ATTITUDE THAT WHATEVER WAS GOING ON, IT WOULD GO AWAY. I FELT THAT WAY EACH AND EVERY DAY. I HAD BEEN THROUGH MANY PHYSICAL THERAPIES INCLUDING WATER THERAPY, AND OTHER TYPES OF ALTERNATE THINGS — I CAN’T EVEN REMEMBER THEM ALL NOW. PHYSICAL THERAPISTS WOULD ALWAYS HURT ME. I WOULD COME OUT OF PT AND BE LITERALLY INJURED — NOT JUST SORE — BUT TO THE POINT THAT I WOULDN’T BE ABLE TO GO BACK TO THE NEXT SESSION. I BELIEVE THEY ARE TRAINED BETTER NOW, SO 2 YEARS AGO I WENT BACK TO PT AND IT WAS VERY HELPFUL. IT DIDN’T ALLOW ME TO DITCH THE MEDICINE, BUT IT MADE ME FEEL BETTER. THEN… THE ACA BECAME REAL (HOW SAD) AND DISABLED PEOPLE WERE PUT IN THE BACK POCKET. NOW I CAN’T AFFORD PT OR ANY OTHER OUTSIDE THERAPY. IF I LIVED IN A CARDBOARD BOX UNDER A BRIDGE (WHICH WILL HAPPEN IN THREE YEARS EXACTLY), I COULD HAVE PT. AS IT IS, I CAN ONLY AFFORD SOME OF MY MEDS.

    I HAD PREVIOUSLY TAKEN RX NAPROCIN FOR 8 YEARS AND IT DIDN’T WORK VERY WELL, BUT I KEPT TRYING UNTIL IT STOPPED WORKING ALTOGETHER.I TOOK GOLD AND MANY OTHER ARTHRITIS REMEDIES, INCLUDING TRYING ALL THE WACKY STUFF ADVERTISED. I WAS GETTING MORE AND MORE PAIN AS TIME WENT ON. I STARTED TAKING ASPIRIN AT THE HIGHEST DOSE. IT DID HELP ME! ASPRIN IS A WONDER DRUG. BUT ABOUT 8 YEARS LATER I HAD A HOLE IN MY STOMACH (ULCER) AND HAD TO STOP IT AND TAKE STOMACH DRUGS. IF I TOOK ONE NOW, I WOULD VOMIT.

    I HAD BEEN DIAGNOSED WITH FIBROMYALGIA AND WENT THROUGH THE MAYO CLINIC WHOSE DOCTORS SAID I HAD THE WORST CASE THEY HAD EVER SEEN. I WON A DISABILITY AWARD AS I WASN’T ABLE TO WORK OR FUNCTION WELL ANYMORE.

    OVER TIME MY CONDITIONS GREW TO INCLUDE FIBRO, ME/CFS, DEG. DISK DISEASE, RHEUMATOID ARTHRITIS, LUPUS AND ALL THAT GOES WITH THOSE THINGS LIKE CHRONIC BOWEL PROBLEMS AND…WELL, A LIST OF NASTY THINGS.

    I HAVE NOW BEEN ON HIGH DOSES OF TWO OPIOIDS FOR MORE THAN 20 YEARS AND THEY WORK. DESPITE WHAT THE GOVERNMENT WANTS TO BELIEVE (AND I MIGHT ADD THAT THEY CHOOSE TO IGNORE THAT PEOPLE METABOLIZE OPIATES DIFFERENTLY, THEREFORE DOSING IS INDIVIDUAL), ABOUT THESE DRUGS, I KNOW FOR A FACT — BECAUSE I’VE TRIED IT MANY TIMES — WHAT HAPPENS WHEN I DON’T TAKE IT. THE LAST TIME I TRIED TO GO OFF, MY THEN BOYFRIEND HAD TO CARRY ME FOR SEVERAL DAYS UNTIL I COULD WALK ON CRUTCHES. (I HAD NO WITHDRAWAL SYMPTOMS BY THE WAY, BUT I IMAGINE I AM MORE DEPENDENT NOW BECAUSE MY DOSE IS HIGHER AND I TAKE TWO OPIOIDS.)

    I HAVE A PAIN MANAGEMENT DOCTOR WITH MULTIPLE DEGREES – NEUROLOGIST, NEUROSURGEON, PSYCHIATRIST, AND ANESTHESIOLOGIST. HE HAS NO PLANS TO CHANGE MY MEDS, BUT SO MANY HAVE BEEN YANKED OUT FROM UNDER THE RUG BECAUSE OF THE GOVERNMENT. DOCTORS ARE NOW SCARED OF PRESCRIBING. WHAT THE CDC DID WITH ITS GUIDELINES IS CRIMINAL. THERE ARE STRONG TIES TO BENEFITTING FROM THIS FOR SOME OF THEIR CHOSEN WORKING GROUP MEMBERS. PATIENTS WERE NOT REPRESENTED AND WERE IGNORED DURING THE COMMENT PERIOD. DR. KOLODNY IS ONE (PROP) AND AS HE RAKES IN MILLIONS TO “TREAT” ADDICTION, HE HELPS SPREAD WORD THAT OPIOIDS ARE BAD. HE’S NOT THE ONLY ONE. THERE ARE OFFICIALS AROUND THE US WHO HAVE BEEN AFFECTED BY ADDICTION, EITHER THEMSELVES OR FAMILY MEMBERS, AND THEY SPEAK AGAINST OPIOIDS. THE CDC CONVENIENTLY PUT OUT A HUGE PRESS CAMPAIGN DURING THE COMMENT PERIOD AND JUST AFTER (TIMELY) THE GUIDELINES WERE RELEASED SO THAT EVERY ONLINE AND PRINT MEDIA ENTITY IN THE U.S. WAS WRITING ABOUT THE “OPIOID EPIDEMIC” AND HOW BAD THESE DRUGS WERE AND WHAT THE DEATH/ADDICTION RATES WERE, ETC. AND ALL THE NUMBERS WERE WRONG! THEY WERE DOCTORED AND WRONG!

    I SURELY BELIEVE WE NEED TO TREAT THE ADDICT AND RESPECT THAT THEY NEED HELP, BUT DON’T SACRIFICE THE PATIENT’S TREATMENT FOR THAT. THEIR DRUGS ARE OUR MEDICINE! WE AREN’T TAKING THE STREET DRUGS FROM CHINA AND MEXICO. WE SIGN CONTRACTS WITH OUR DOCTORS AND WE ARE CHECKED FOR PROBLEMS IN CASE OF ADDICTION. AND IF SOMEONE TAKES A DRUG FROM THE BOTTLE OF A PATIENT, EITHER BY THEFT OR THE PATIENT IS SHARING, THEN SHAME ON THEM. IF A PARENT CAN’T LOCK UP THEIR DRUGS SO YOUNG PEOPLE, NEIGHBORS, WHOMEVER CAN’T START THE PROCESS OF BECOMING ADDICTED, THEN SHAME ON THEM. BUT DON’T BLAME, PENALIZE AND TAKE AWAY MEDICINE FROM PAIN PATIENTS WHO ARE FOLLOWING THE RULES.

    BOGUS STUDIES ARE COMING OUT NOW SAYING LONG-TERM USE OF OPIOIDS MAKE A PERSON WORSE! OTHER STUDIES SAY OPIOIDS DO NOT WORK FOR CHRONIC PAIN. WHAT WAS AN OPIOID MADE FOR AGAIN? PAIN! CHRONIC PAIN! A NATURAL SUBSTANCE USED 4000 YEARS AGO IS MUCH BETTER THAN THE DESIGNER DRUGS THAT HAVE NOW CAUSED NEW DISEASES AND HAVE CRIPPLED PEOPLES’ CHANCES OF GETTING ANY BETTER. DRUGS LIKE CYMBALTA ARE HURTING PEOPLE BY THE MILLIONS. LYRICA, SAME THING. AND MOST PEOPLE TAKING LYRICA, FROM WHAT I READ DIRECTLY FROM THEIR COMMENTS, DO NOT KNOW THAT GABAPENTIN IS IN LYRICA. WOW. GOOD EDUCATION.

    WHEN I SEE COMMENTS BY PEOPLE WHO DON’T UNDERSTAND OR HAVE NEVER HAD HIGH-IMPACT PAIN AND USED OPIOIDS SAY, “YOU JUST WANT DRUGS, YOU ARE PILL POPPERS, YOU THINK THEY WORK, YOU ARE DISGUSTING…..,” YOU NAME IT, WE’VE BEEN STIGMATIZED AND CRIMINALIZED FOR YEARS, I JUST WANT TO SAY, “DO YOU REALLY BELIEVE I WANT TO LIVE LIKE THIS RATHER THAN BE ABLE TO SKI AGAIN, SKATE, RUN, PLAY TENNIS, TRAVEL, HAVE A GOOD DAY, FEEL WELL INSTEAD OF SICK, ETC? NO, I DON’T THINK I WANT TO BE LIKE THIS. I DON’T GET HIGH FROM MY DRUGS BECAUSE THEY ARE WORKING IN THE RIGHT PLACES IN MY BODY. I DON’T WANT TO TAKE ONE MORE PILL OF ANY KIND EVER, BUT I’M STUCK. NOW, AT 63, I THINK MY HEART WOULD DIE IF I HAD TO ENDURE THE PAIN I WOULD HAVE WITHOUT MY MEDICATION. A SAD PART OF THAT THOUGHT IS THAT OUR SUICIDE RATE HAS INCREASED BECAUSE PEOPLE CAN’T LIVE IN SUCH TERRIBLE PAIN WITHOUT RELIEF. NOW WE LIVE IN FEAR, AND WITH ADDED STRESS JUST WONDERING WHAT IS GOING TO HAPPEN.

    PLEASE URGE THE CDC TO LISTEN TO PATIENTS AND DOCTORS, NOT THEIR LITTLE GROUPIES WHO HAVEN’T A CLUE. AS I DIG FURTHER AND FURTHER INTO THIS, I RUN ACROSS A LOT OF GOVERNMENT ISSUES, AND I’M SO SAD TO FIND OUT THAT OUR GOVERNMENT IS, INDEED, CORRUPT.

  4. EvieVNartin says:

    In having just read this post, I can feel and sympathize with the writer.

    I am an almost 76-year-old female who has had chronic pain dating back to my thirties. First, I was diagnosed at the age of 29 with cervical spine arthritis after sustaining a fall on concrete and hitting the base of my head. I was prescribed devices, gone to chiropractor and acupuncturists as well as physical therapy all to no avail.

    Unbeknownst to me, and to my surprise, at the age of 73, I was found to have scoliosis of my lower spine as well as lumbosacral steniosis. Fortunately, I had gone to a doctor who felt so sorry for me because I had difficulty climbing up on the examining table. I was given a prescription for Oxycodone. That, together with Gabapentin has alleviated the pain and discomfort but after taking one dose, I would need to take another dose after five hours. By that time, I was using a cane to ambulate althoughwalking and standing for liong periods were out of the question and so had to resort to the use of a wheelchair.

    I followed up with my surgeon who thought the next step would have to be surgery after four consecutive epidural injections failed to relieve my pain but at this point in my life, I am reluctant to have any invasive procedures done. At my age and in my present living conditions, all I want to be is comfortable for as long or as short my time in this life lasts. The surgeon wrote me a prescription fir OxyContin which my pharmacy informed me would cost $100 copay for just thirty pills (my prescription was written for sixty pills) which I decided not to fill and therefore am on Oxycodone.

    In addition my I was given a sample of Lyrica 75 mg for a two-week trial which worked very wellbut when I presented my prescription to fill, the pharmacy informed me that it was not covered by my insurance.

    The abuse of the drugs people have died from should not prevent those with “legitimate” chronic pain. If people with addiction obtain the drugs illegally and as a result die from them, we chronic pain sufferes should not be penalized.

    Doctors, on the other hand, should be more vigilant and discerning about who they give prescriptions to.

  5. EvieVNartin says:

    In having just read this post, I can feel and sympathize with the writer.

    I am an almost 76-year-old female who has had chronic pain dating back to my thirties. First, I was diagnosed at the age of 29 with cervical spine arthritis after sustaining a fall on concrete and hitting the base of my head. I was prescribed devices, gone to chiropractor and acupuncturists as well as physical therapy all to no avail.

    Unbeknownst to me, and to my surprise, at the age of 73, I was found to have scoliosis of my lower spine as well as lumbosacral steniosis. Fortunately, I had gone to a doctor who felt so sorry for me because I had difficulty climbing up on the examining table. I was given a prescription for Oxycodone. That, together with Gabapentin has alleviated the pain and discomfort but after taking one dose, I would need to take another dose after five hours. By that time, I was using a cane to ambulate althoughwalking and standing for liong periods were out of the question and so had to resort to the use of a wheelchair.

    I followed up with my surgeon who thought the next step would have to be surgery after four consecutive epidural injections failed to relieve my pain but at this point in my life, I am reluctant to have any invasive procedures done. At my age and in my present living conditions, all I want to be is comfortable for as long or as short my time in this life lasts. The surgeon wrote me a prescription fir OxyContin which my pharmacy informed me would cost $100 copay for just thirty pills (my prescription was written for sixty pills) which I decided not to fill and therefore am on Oxycodone.

    In addition my I was given a sample of Lyrica 75 mg for a two-week trial which worked very wellbut when I presented my prescription to fill, the pharmacy informed me that it was not covered by my insurance.

    The abuse of the drugs people have died from should not prevent those with “legitimate” chronic pain. If people with addiction obtain the drugs illegally and as a result die from them, we chronic pain sufferes should not be penalized.

    Doctors, on the other hand, should be more vigilant and discerning about who they give prescriptions to.

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