The Stigma of Chronic Pain
Comments
-
Normally, I wouldn't post this article here but rather on one of my RSD forums. Nor would I want Paula Abdul to be the poster-child for it---but
I guess thats my own unjust preconceived notions of her.
Never-the- less she is bringing to the forefront problems encountered by many dealing with chronic pain and the far ranging implications arising out of these perceptions----From Doctors to Pharmacists to friends to our own self image which affects QOL. It takes it's toll.
Doesn't matter the source of the pain--the stigma is there all the same
and effects all medical treatment consciously or unconsciously.
---------------------------------
Beating Back the Stigma of Pain Treatment
Paula Abdul's Stardom May Help Cut Negative Perceptions About Chronic Pain, Painkiller Use
By LAUREN COX
ABC News Medical Unit
If celebrity gossip were the stock market, Paula Abdul's shares would be on a solid uptick.
Her hit program "American Idol" started Tuesday—with no writers needed—and TVguide.com reports that she's in talks to sing at the Super Bowl halftime show.
Abdul, who has endured more than her share of bad Hollywood gossip, also has a condition not shared by many fellow celebrities. She's one of millions of Americans who suffer from chronic pain.
Acknowledging Her Pain
In a 2005 interview, Abdul was straight up with People magazine, confirming that she had taken powerful drugs before—Oxycontin, Vicodin, Soma—but all in an excruciating trial-and-error process to beat her chronic pain.
Abdul claimed to suffer from a condition called Regional Sympathetic Dystrophy, or Complex Regional Pain Syndrome. The condition, she said, started with a cheerleading neck injury that sent her body into a mysterious chain reaction of pain symptoms that spiraled into intolerable pain over decades.
Chronic pain may be mysterious, but it's not uncommon. About 10 percent of people suffer from pain that lasts longer than a year, according to 2002 statistics from the American Pain Foundation. For people with neuropathy, spinal cord injuries, rheumatoid arthritis and other diseases, chronic pain can last for decades—and sometimes require drugs with side effects that can leave people drowsy, nauseous, or suffering from memory lapses to make life tolerable.
Getting Acceptance
"We don't want sympathy at all, we just want empathy; we want understanding," says Mike K. Buckley, 51, a retired firefighter in Massachusetts who suffers from chronic pain.
In the summer of 2002, Buckley pulled a fire hose toward a blaze in full gear. With just one unnatural turn, two discs in the middle of his back bulged into his spinal cord.
This single injury has sent him to the emergency room 20 times in the past four years, every time in a bout of excruciating pain.
Buckley stayed at work for three years, even after a T-bone car accident injured a third disc in his spine, making his chronic pain condition inoperable.
"Oh you're taking Oxycontin? Are you addicted?" Buckley remembers his fellow firefighters asking. "I used to joke with people: I wished I was just getting high off of this!"
In fact, most chronic pain patients won't get high with a well-managed dose of opioids like Oxycontin, says Dr. Elliot Krane, professor of anesthesia and pediatrics at Stanford University in Palo Alto, Calif.
"All of us have had patients on grams and grams rather than milligrams of morphine or hydropmorphone, for example, who have been very functional," said Krane, "whereas the same dose would render the opioid-naïve patient comatose."
Prescription Woes
Prescriptions for opioids took off in the 1980s and 1990s with the realization that short-term painkillers could help chronic pain patients in the long term, says Dr. Joe Shurman, chairman of pain management at Scripps Memorial Hospital in La Jolla, Calif.
Unfortunately, in the late 1990s, the drug Oxycontin left a wake of reports of prescription painkiller overdoses and abuses skyrocketed.
"It gives everybody with pain a bad rap," said Buckley, whose doctors have tried Vicodin, Oxycontin and epidural injections to fix his pain before finally finding a prescription for methadone, which he says works. Each time a chronic pain patient switches drugs, he or she may take a couple of weeks to adjust to the mental and physical side effects.
"A lot of us just take it to get through the day, and a lot of times the pain wins," said Buckley.
Buckley had to retire in January of last year after a fall down some stairs, which Buckley says weren't compliant with the fire code. Though he says he still spends most of his days at a seven on the 1-10 pain scale used by doctors, Buckley may have been lucky that doctors even believed he was in pain.
Convincing Peers and Doctors
"I guess I wasn't screaming enough; I told them I was in pain, but I guess I should have been yelling at them," said Janice Dallas, a Type 1 diabetic who suffers from "fire and lightning" pain due to a degenerative nerve disease called neuropathy.
"It started out in '94 with neuropathy, it wasn't diagnosed until 2000," said Dallas. Part of Dallas' six-year wait for a diagnosis was an odd condition: She felt pain in her trunk, as opposed to the more common areas of hands and feet.
But part of Dallas' challenge to get diagnosed might have also been doctors' heightened scrutiny of anything that might resemble drug-seeking behavior.
In response to the rising Oxycontin abuse, the U.S. Drug Enforcement Administration started the official Action Plan to Prevent the Diversion and Abuse of Oxycontin in 2003.
The plan led to high-profile cases of doctors going to jail for prescribing certain opioids. Now doctors are hesitant to prescribe heavy-duty pain killers like Oxycontin. "It's shifting to being underprescribed," said Shurman.
But perhaps high profile cases of chronic pain like Abdul's could eventually help normalize the stigma and fear that come along with the proper use of prescribed painkillers.
"Unless you've really experienced pain you can't get rid of, you don't understand our world," Buckley said.
Unlike Buckley, Abdul had a chance of ending her world of pain. In her interview with People, Abdul says after more than 25 years of unsuccessful treatments she's feeling better than ever. According to the Associated Press, Abdul and her doctor report she's only taking low-side effect medication of Enbrel for arthritis and Pamidronate for complications of her chronic pain.
Buckley still feels supportive of Abdul's trial in the spotlight.
"When it comes down to it celebrities are people just like us and have to deal with this pain that changes their whole world."
Copyright © 2008 ABC News Internet Ventures
Source
January 16, 2008
-----------------------------------PS; Ms Cox should at least get the malady she's referring to accurate.
RSD is REFLEX SYMPATHETIC DYSTROPHY not REGIONAL --I guess
picayune on my part.
-
Sad, isn't it that people who are in chronic pain and take pain pills have to feel looked at like a drug addict. And doctors are too afraid to prescribe long term use of them.
At the pain clinic where my dh goes the doc was telling us about a woman who thought her husband should be off of pain meds because, after all, he had been on them long enough. The doc asked the woman if he was still in pain. The woman said yes. The doc then said then why do you want him off of them.
My dh won't take too many pain meds. He did after surgery, but won't take them otherwise. He's on Lyrica which I don't know if it's helping or not. Nor do I know if his neuro-stimulator is really working because the man doesn't use it. He sits on his but mostly. He needs to turn the contraption on and do SOMETHING top see if it's working. Damn, why did he have such painful surgery that costs some big bucks? MEN!!!
Shirley
-
I had 4 clients with RSD in my career as a case manager -- years ago and had such a difficult time educating the insurance adjusters it was a real problem and not drug seeking, let alone some of the docs. Fortunately, we had some pain docs who were on the leading edge and could diagnose it.
-
Thank you for posting this. As a chronic pain sufferer for half my life I can empathize. As Buckley stated, we want empathy, not sympathy. Add breast cancer treatment s/e's on top of it and it's a doozy. It sure does take it's toll. Hugs.
-
Interesting article.
For about 25 years I have been bothered with chronic pain, sometimes I have felt like I am imagining it all, as no-one can believe pain goes on this long. First I got the diagnosis of ME, then that turned to Fibromyalgia.... but I don't really go with either of these somehow.
I think my Drs just thought, after years of me asking for help, and not getting any, they'd stick a label on me, then I'd sit down and shut up !!
I got all my medical notes from my GP, as soon as we were allowed to under the freedom of information act, and my GP had written, at one visit, when I was in great pain from my hips, and her surgery was up 2 flights of stairs, 'I see she is on her walking stick AGAIN !!' so sarcastically!
As Angel says, add bc treatment se's to this, and its bloody hard work. I got mad at my GP not too long ago, and told her that just because I was dealing with bad se's from Arimidex, and neuropathy from my mast. my other pain just doesn't sit down and shut up !!!!
I am OK if left alone to work at my own speed, the minute I start to get pushed my pain flares up, and it looks as if I am using this to hide behind because I don't want to do something, when thats so far from the truth.
Isabella.
-
Hugs Isabella. I hear you!
Just to be clear to everyone, I don't downplay how it was before bc at all. It's been a very hard ride. Just adding to it makes you want to ask "how much more can I take?". Like Isabella says, it's not all about the se's from the bc meds. We have pre-existing conditions we're dealing with Also!
-
I suffer from chronic pain. it is the worst. And I never know what I will feel like each day. I had to take a unpaid leave of absence from work. Was supposed to go back Jan, 2008. Even though docs and i have been working hard to get me well enough to go back to work, doc thought I needed until June 30, 2008. Work denied approval of request so as of today, I'm retired. I get LTD till I am 65. I have mixed emotions about this, but I think it all works out for the best.
Ever since my first bc operation, I have had chronic pain at level 8-10 daily. Pain doc now has it down to about a 4. He has been doing stellate ganglion block injections in my neck. I had one celiac plexus block injection in my back and will be scheduled for 4 more. It sounds scary but it really isn't.
I also take 4 pain medications and depression med. We are talking about weaning me over to methadone or I can stay on what I have probably forever. People at work think I look great. I'm sure they think there's nothing wrong with me.
I view chronic pain as an invisible disability. I totally understand what Paula Abdul is going through, and anyone else with chronic pain.
The pills help the pain, but I pay the price. I am often dizzy and drowsy. I have trouble remembering a word when I am talking to someone. I lose the 2nd half of someone speaking as I try to write the minutes of a meeting. It's hard to realize that I am not the same as I was before the cancer diagnosis, and unlikely that I will be.
I am, however, going to enjoy retirement. I am signing up to volunteer at the Lymphedema Clinic for a couple hours a week. And I will have oodles of time to enjoy my 9 month old granddaughter.
In the end, for me, things worked out the best they could.
Hugs to all of the chronic pain club,
grace -
Grace ... that happens to me also with forgetting words. I've had a great increase in loss of cognitive function since my oopherectomy for bc put me into sudden instant menopause but the meds have always played a part in my ability to focus and remember. It's just gotten worse.
Enjoy that retirement and your 9 month old grandaughter. It is more than time to focus on you. You So deserve too!
Gentle hugs
-
I'm in the process of finding another pcp for this very reason. He has down played my chronic pain since I walked into his office 2 yrs ago. He doesn't believe in prescribing any addictive medication at all. He has been weaning me off my regular meds that I had to take for years like I was an addict or someone off the street. I think we need a very good relationship with our dr. that is understanding. We are grown women we know when we are in pain. This subject makes me that much more confident in leaving my pcp to find another.
-
Just as I finally finished treatment for breast cancer, my husband became disabled by chronic pain. He hasn't worked in more than three years. He applied for Social Security disability, and it's taken three years for him to finally be approved. (We still haven't seen any money, although his first payment is supposed to come Wednesday.) The loss in income and horrible medical bills drove us into bankruptcy, and I was forced to take a second job. It took the doctors two years to diagnose him with spinal stenosis, and by that time, he'd gone so far downhill there was no turning back, and painkillers don't entirely control his pain. But what bothers him the most is when people ask him what he does for a living, and he explains that he's disabled. They start telling him about their pain problems, as if they are similar (and implying that he should just toughen up and go back to work)! It infuriates me. My husband was a workaholic who never turned down an assignment, no matter how hard. Now he can't walk, stand or even sit for long, and he is terribly depressed. So am I, because there are so many things we did as a couple that are impossible now -- hiking, boating, camping, the list goes on and on. When, oh when, will people learn to just LISTEN and not make stupid assumptions?
-
People do not seem to understand about this pain
I too have some
and as Isabellea I believe said
if you overdo it, then it
comes on strong.. my neuropathy does
and also hip problems
However, when you relay this to anyone
ie family members, mainly for me
they just do not get it, can not understand
how walking up 4 flights of stairs with pkges
would agitate this (or do not want to know about it)
I do things in stages now
A shame about your hubby and disability too
People do not know what goes on
unless they are in the same shoes -
hooptiedoo, I'm so sorry that life as been turned upside down for you. I'm surprised that it took the doctors so long to figure out his problem.
I truely believe my dh is also depressed. And, there's other health problems. It sucks. I'm used to having a "man" around the house, but things have changed. He's had back problems on and off for years. I think finally one day it just errupted into a very bad situation.
He can sit and lie down without pain. I would really like to know if the neuro-stimulator they put up his spine worked well or not. IMO he hasn't given it a chance. Oh well.....
Shirley
-
I have chronic pain brought on by nerve damage from my lymph node dissection. When I was surprised by how little everyone understood it, I realized ... they didn't understand the bc itself, either. A mix of ignorance and not wanting to know. At least I have an understanding pc who has me on endocet and cymbalta. It helps a lot most of the time, but not at all other times. What I found is that overuse is the enemy. I applied for and obtained permanent disability through ss with the help of my doc. He is a gem!
-
Oh GOD BLESS THIS THREAD!!!!!!!!!!!!!!!!!! I had a thread I started a little while ago about my misery regarding my pain.
I am miserable. I was on vicodin the minute I began chemo in November of 2005, and stopped officially taking it about 2 (?) weeks ago.
Doesn't matter, because the pain is still there. I call the doctor daily to tell him to do something. He alters my nortriptyline (had me up to 125 mg) and says to "tough it out."He says that the goal is to get me off of as many meds as possible so I can go on living my life normally now.
How normal of a life is it when you are in tears because everything hurts??
Everything!I have been getting my medical records from our previous town, and was reading through them two days ago.
Now, at the risk of making my story wordy, I had a bone scan this summer, and one a few weeks ago. The results of the one a few weeks ago, I was told, showed "some arthritis."
I said, "Where? Is that why I am in misery?"
They said, "You didn't have the scan done here, sorry, we don't know where."
So, I was reading through my records from Peoria, and read that my summer bone scan said the arthritis was in both shoulders and both knees.
EUREKA!I had been telling my doctor in Chicago that my arms have been feeling like I carry 10 ton weights all the time. I tell him that my legs are so tired and achey. I asked if that was arthritis, and he said, "Most Americans suffer from some arthritis."
Now, I call him two days ago and tell him what I read. Suddenly the story changes. "Oh, that makes sense, now we know why you are in pain. Let's give it two weeks on Cymbalta and see how you do...."I called the general practitioner two days ago to see if he can help me (screw these other doctors who don't want to bother). I thought I was getting somewhere and was told at the end of the conversation, "Oh wait, you've only been here twice, you aren't an established patient. We can't treat you. Go to the pain clinic."
Duh. I have been trying to get into one for two years. I need a referral! Ok, so I get a referral.I go in there on Wednesday. Oh, wish me luck. I don't want to be on Vicodin anymore, but I DO want something to get me through the day.
Why won't they help me.......
Love and prayers, Deb -
Deb, your story wants to make me cry.
Are you going to the pain clinic Wednesday? I think that's your best choice.
I do hope they find SOMETHING to help you.
Gentle {{{{hugs}}}}
Shirley
-
Thank you Shirley.
Your support means the world to me.
I think I have to take Daniel out of school that day so I can go, but I have no choice. -
I think I need to go to the brain clinic. I just noticed in my post that in my first sentence I got my verbs mixed up...LOL
Is there anyone who can take care of Daniel for you while you see the doctor? Or, can someone go with you to your appointment?
-
Good idea about school, Shirley. I think I will ask another Mommy to take him-they live close to us.
I can't wait-I just want some relief.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team