The Challenges of Living with Invisible Pain or Illness
The chronically ill and those who care for them often live in an invisible world
Post published by Toni Bernhard J.D. on Sep 28, 2011 in Turning Straw Into Gold.

Most of us who live day in and day out with chronic illness — which includes chronic pain — don’t look different from the healthy people all around us. I remember seeing tennis great, Venus Williams, on television, watching from the stands as her sister played in the U.S. Open tennis final. Williams had recently been diagnosed with Sjögren’s Syndrome, an autoimmune disease. The announcers were talking about her illness as the camera moved in for a close-up. As I watched, I was certain that most viewers would be thinking, “But she doesn’t look sick.” I’ve met a women online who suffers from Sjögren’s Syndrome, so I knew that Williams was facing a hard — and a largely invisible — struggle.

What are some of the consequences of living in the invisible world of the chronically ill?

Guilt and embarrassment. Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.

This expectation of health is especially hard on young people. Until I became chronically ill myself, I never realized how many young people struggle with their health. (I write about the extra difficulties they face in “The Extra Burdens Faced by Young People with Chronic Illness.”)

Having convinced ourselves that we’ve let them down, we may even feel guilty and embarrassed around our loved ones. I had to overcome the terrible guilt I felt over not being active in the lives of my two grandchildren. I had so many fantasies about what we’d be doing together. My oldest grandchild, Malia, lives in the city where I grew up — Los Angeles. I thought I’d be taking her to all my favorite places. My youngest grandchild, Cam, lives in Berkeley, only about an hour from where I live. I thought I’d be riding cable cars with her in San Francisco and going on Bay cruises that would take us right under the Golden Gate Bridge. Instead, I see her when my son’s family visits me in Davis.

When I finally realized that it was not my fault that I was sick, I was able to shed the guilty feeling that I was letting my granddaughters down. Once I did this, I was able to embrace my life as it is — sickness included. This freed me to look for ways to connect with Malia and Cam that didn’t include seeing them in person very often. 

Frustration at the lack of understanding.
The “list of misunderstandings” is a long one. I wrote about some of them in “Six Common Misconceptions about the Chronically Ill.” Here are four more, particularly related to the invisibility of our medical conditions.

Illness-related pain and debilitating fatigue are not cured by engaging in strenuous exercise, although I’ve read many accounts of doctors who have prescribed this very treatment. This lack of understanding from the medical community can have serious, even fatal, consequences because we may become gun-shy about seeing a doctor when a new symptom appears — one that could be a sign of a life-threatening medical problem, unrelated to our current illness.

Second, we may be treated as malingerers by family members, friends, employers, the medical profession, even the general public. After I was interviewed on a local National Public Radio show, I received an email from a listener, telling me that he didn’t want his tax dollars going to support “an amotivational slacker.” Whoa. I was confused: Did he mean I was an “amotivational slacker” as opposed to a “motivational slacker”? I’m making light of his comment now, but at the time I read it, it stung — badly. 

Third, people in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication. 

Lastly, we face misunderstanding over what it means to be disabled. Just because we’re too sick to work and be active for extended periods doesn’t mean we can’t sometimes go out to a restaurant or have people over. This misunderstanding can have tragic consequences. I’ve read about people who’ve had their long-term disability payments revoked because an investigator who was sent to check up on them saw them being active in some way, perhaps going to the store.

***

I’ve learned that the burden is on those who are chronically ill to make the invisible visible to others. This entails educating people about chronic illness, although it’s good to remember that some people may never accept that we’re disabled by invisible pain or invisible illness. This inability on their part is about them, not us. They may not have had an experience with illness; it may scare them and remind them of their own mortality.

The kindest thing we can do for ourselves when people disappoint us is to accept that disappointments are an inevitable part of life and then cultivate compassion for ourselves over any suffering we’re experiencing as a result of their lack of understanding about what it’s like to live with invisible pain and with invisible illness.

© 2011 Toni Bernhard www.tonibernhard.com

You might also find this helpful: “A Not-To-Do List for the Chronically Ill.”

Thank you for reading my work. My upcoming book (Fall 2015) is titled How to Live Well with Chronic Pain and Illness: A Mindful Guide.

I’m active on Facebook, Pinterest, and Twitter.

For The Endo Girls: What NOT To Say To A Woman With Endometriosis
by Kelle O’Connell
July 7, 2013

Endometriosis is a condition that occurs when the lining of a woman’s uterus grows in places outside of the womb causing chronic pain, internal bleeding, and often infertility.
The average time it takes for a woman to receive an accurate endo diagnosis is 10 years.
I share about this on my blog in hopes of raising awareness, decreasing that average diagnosis time, and providing a small resource for my “endo-sisters” out there.

In dealing with all the emotional and physical pain that comes with endometriosis, there are a lot of situations where kind-hearted people want to offer support, but don’t know what they should say. And often, in an effort to be loving and comforting, they end up being accidentally insulting.

So I am sharing a few less-than-helpful comments that I’ve heard from nurses, doctors, friends, family, and coworkers multiple times.

Not to embarrass anyone who has said these things to me, but to hopefully explain why these things aren’t appropriate to say to women with endometriosis and provide some positive alternatives for moments when well-intentioned people are looking to provide comfort.

If you know a woman who is suffering with endometriosis, please don’t say….

“Have you tried Ibuprofen?”

This is a really common one. I even got asked this a few times in the Emergency Room, while I was crying in pain. Women with endometriosis have often been dealing with severe, chronic pain for at least 5-10 years. Just go ahead and assume that at some point, they’ve tried Ibuprofen, Midol, and anything else they could get their hands on in the medicine aisle of their local grocery store. And for the majority of the time, those pills do not even touch the pain which is why they turn to heavier medications.

“I mean, you look like you feel well so it can’t be that bad.”

This one’s always a little rollercoaster for me. Starts as a compliment, ends as an insult. “Thanks! Oh, waiiiit… that’s not a compliment, you think I’m a liar.” Endometriosis is labeled as an “invisible illness”. Everyone’s body handles it differently. Some women have severe bloating in the abdomen and you may be able to tell when someone looks tired, but just because someone has learned to function in their life and brush their hair through their flare ups, doesn’t mean their pain doesn’t exist on an extreme level.

“You just want people to feel sorry for you.”

Most girls with endometriosis who decide to share their experiences, do so for several reasons :

1. they want to raise awareness for a disease that many people have never heard of.
2. they want to explain themselves to the friends they constantly flake on or the boss they’re calling in sick to
3. they want to connect and relate with other girls with endometriosis

Attention and sympathy don’t come up on that list. I guess maybe for some girls, but not for most.

“If there isn’t a cure, you’re going to need to just toughen up and get over it.”

First of all, don’t ever let someone take away your hope like that. There isn’t a cure but there are many treatments that women have found relief from. It’s a long process, but eventually improvement can be found if the right treatment is introduced to the right person. Second of all, women with endometriosis are tough so much of the time. This goes back to endometriosis being an ‘invisible illness’. People assume it’s something small enough that you can get over it, but it’s not. It’s emotionally, physically, and mentally draining on every level. Keep your hope but don’t ever feel like you should be able to ‘get over it’.

“It could be worse, at least you don’t have cancer.”

I never know what to say to this, so I will just share one quick quote from a doctor I recently started seeing. He is a naturopathic doctor, married to a woman who was having surgeries for her endometriosis every 2 years, like many women do, with no relief from pain. He went into natural medicine to try and find a way to help her because he saw the struggle firsthand and couldn’t believe the lack of understanding that the surgical professionals had about endometriosis cases. His words at my appointment validated me more than anything ever has :

*

“People who haven’t seen it firsthand refuse to see endometriosis as something serious and detrimental because it isn’t life threatening. No, it isn’t going to take your life. It’s just going to stop it completely. You’ll be alive, but incapable of living. You’ll work twice as hard for half the success in life. It’s not living at all.”

Every day, I am very thankful that my condition is not worse, but please do not belittle the struggle I’m going through by saying something like “at least it’s not [insert other disease].”

“I knew a girl who had that and she was fine.”

Endometriosis targets every woman differently. The same diet doesn’t work for everyone. The same treatments don’t work for everyone. The same surgeries don’t work for everyone. Everyone is different. I’m glad your friend was fine. She’s very fortunate.

“You’re so lucky, I’d love to take that many days off of work.”

** I live in constant fear that I am going to lose my job because of how many days I am unable to get out of bed and get to work. And those days that I miss are miserable because I’m sitting at home, taking medicine that I need a paycheck to afford, but not able to work for that paycheck. It’s not a vacation. It’s an anxiety ridden, terrible, painful situation. I would give anything to never call in sick again. Nothing about that is lucky.

“You just need a more positive attitude.”

A positive attitude isn’t going to detach endometrial adhesions from the sides of organs. A positive attitude isn’t going to give an woman with endometriosis a sure chance at children. A positive attitude can be helpful for a person mentally, but after years of surgeries, procedures, medications, doctors appointments, and emergency room visits, sometimes it’s really hard to keep that positive attitude. And that’s okay. You’re allowed to be sad and discouraged sometimes.

And my absolute least favorite….

“Yeah, I have cramps today too.”

::insert screetching brakes sound here::

Endometriosis is not cramps. It’s not even “bad cramps”. It’s chronic pain caused by internal bleeding and inflammation. There are two types of endometriosis pain : tolerable and intolerable. It can’t be solved with over the counter medication or a heating pad. It’s not the same thing as cramps. When they have an endometriosis flare up, most women are unable to move at all. Comparing that to cramps is incredibly degrading.

– – – – –

Again, I understand the people who said these things had good intentions and were just trying to provide help in some way, but these words cut more than they heal.

So what should you say?

The next time you see a woman going through the pain of endometriosis, instead of telling her it could be worse or that she needs a better attitude, you can tell her you think she’s a strong person, because she is.

Or instead of telling her that she looks good so she must feel well, you can tell her that you admire her ability to handle pain as gracefully as she is.

Instead of telling her she is lucky to be sick and you wish you could call-out too, you can tell her that you’re sorry she had to miss work. You know that must suck. Or you can ask if there’s anything she needs.

And there probably won’t be anything! There’s not a whole lot that anybody can do, she just has to wait it out. Better days will come. But your consideration and willingness to help will mean the world and will provide much more comfort than any other recommendation or “advice” you could give her.

For the endo girls : Did I leave out any that you’ve heard often? What would you rather have someone tell you instead?

To the rest of you, as always, thank you for reading and allowing yourself to be more informed.

Love and blessings to all of you. xoxo

– – – – –

* The doctor quote above reminds me of another endo sister’s blog entry from 2012:

Am I Even Living?
by Larissa
October 7, 2012
It’s been so long since I’ve posted due to FINALLY moving into my own house. I’ve been so very busy lately. Also, with my mom starting chemo, I have no time on my hands.

But lately, I have really overdone myself. Physically and emotionally. So my endo is pissed at me. Struggling a lot lately with severe pain, missing work because of it, and finally scheduling another surgery hopefully for November, around thanksgiving so I don’t miss much work. And of course, with a miserable endo flare up, comes terrible immune system issues. Trying to fight off a cold 🙁

I’ve been trying to explain to people the pain lately, especially coworkers and family and friends. It seems like no one gets the severity of endo. I have to mention the ER for someone to realize “oh man she’s in pain”. But little do people know, the ER does nothing for an endo patient and most ob/gyn’s will tell you the same. Since endo is an internal disease, that basically causes a war with other areas and organs, we don’t look sick, and therefore drs are unsure of what’s going on until the cut us open. Endo can’t even be diagnosed until surgery. So going to the ER means laying there, getting drugged with ivs. Sometimes when the pain is as severe as it has been, and I’m unable to go to the drs, I will go to the ER for some type of temporary relief. But this brings me to my next point.

Meds do not help endo. I have a cocktail of meds I’m on and have been on a LOTTT of pain meds even. Meds CAN take off the edge of pain, but usually that means being so drugged out and sleeping. It’s not the meds or the kind of meds that are the concern, it’s the disease. It’s a TERRIBLE, ugly disease, with no cure. My Dr made a good point thursday, every medication, procedure, surgery the do is only a “band aid” for the time being. It all comes back.

With this, I have been EXTREMELY discouraged, depressed, and down with the disease lately. I’m happy I’m alive and living, but what kind of life am I living exactly when I’m in excrutiating pain to where I can’t get out of bed, can’t work, can’t drive, can’t eat, can’t function. I want to finally feel like I’m living, not just surviving.

** Living in fear of losing our jobs because of our illness is one of the top 5 reasons why we are so stressed out. Many of us have been discriminated against in the workplace or outright fired. I’ve been fired for having this illness. Kelle’s sentiments above echo my own blog posts from August 15, 2008 and October 4, 2009.

Thanks to endo sister Angela Bivens for sharing the following blog on facebook:

For The (Non) Endo Girls : What Does Endometriosis Pain Feel Like?
by Kelle O’Connell
August 21, 2013

Endometriosis is a condition that occurs when the lining of a woman’s uterus grows in places outside of the womb causing chronic pain, internal bleeding, and often infertility.
The average time it takes for a woman to receive an accurate endo diagnosis is 10 years.
I share about this on my blog in hopes of raising awareness, decreasing that average diagnosis time, and providing a small resource for my “endo-sisters” out there.

I’ve tried for a long time to find a way to explain how endometriosis physically feels, to someone who doesn’t have it.

It’s not a question that I receive often, but since we harp so much on the fact that it’s different than cramps, I feel that us endo-girls kind of owe the rest of you an explanation as to what it does feel like, you know?

Many women with endometriosis associate their pain with the term “flare up.” I think most times, this is referring to the severe pain. Not the daily pain that many women deal with, but the times when it gets really bad. The Emergency Room times. The Percocet times. The how-the-hell-am-I-supposed-to-get-out-of-this-bed times.

I posed the question to an endometriosis Facebook group and received some helpful and honest answers. Keeping in mind that every woman is different, some may find several or all of these to be true in their case, some may not relate to any of them. But these were the most common answers.

What does an Endometriosis flare-up feel like?

It feels like someone is grabbing your insides and twisting them as tightly as they can. Like the “rug burns” that children give each other on the playground by twisting the skin on their arms, but inside of your pelvis and abdomen.

Like recurring, nonstop, appendicitis. Many women with endometriosis are actually misdiagnosed with appendicitis! I never had it, but I’ve been checked for it via ultrasound multiple times in the ER when I’ve gone in with endo pain. I heard from several ladies who have experienced both and said that endometriosis is similar or worse. Even one whose “appendix almost ruptured due to [her] high pain tolerance from endo.” Yikes, girl!

Like a dull knife making quick jabs into your abdomen repetitively for days.

It feels like your body and insides are entirely bruised. Like your legs, hips, back, and stomach have all been punched repeatedly. Like pushing on a sprain or digging your thumb into a fresh, deep bruise.

It feels like the worst food poisoning you can imagine. Your muscles are tight, you’re nauseous, dizzy, and there is an uncontrollable, sharp, pain in your stomach.

Like a large hot iron, being prodded at your insides every few minutes. And even when the iron gets pulled away, there’s a lingering pain from the burn.

There are many opinions about comparing endometriosis to labor pains, by the women who are lucky enough to experience both. (Endo is one of the leading causes of female infertility) More often than not, I hear that the pain is similar, but some mamas argue that endo is worse. I heard from two mothers :

“When I had my daughter, early labor and transition labor felt identical to endo pain.”

“I had very long and difficult labor with my first born (almost 10 lbs)….
Giving birth without epidural twice, I can say that for me endo is
much, much worse than giving birth without epidural.”

It’s throbbing. Aching. Ringing in your ears. An entire body feeling overheated, but in need of heat at the same time.

It is a relentless pain. Sharp and then dull. It teases with previews of what is to come, then magnifies your pain to points you didn’t know a person could tolerate until you had no other option.

I’m sure words can only do it so much justice.

We black out. We faint. We vomit. The room spins. For hours on end. For days in a row. And it leaves only to come back again. And we know it will be back again. Every time, we know.

And that’s why endometriosis feels like hell. Sometimes, it feels like wasting life away. Sometimes it feels like failure. Like jealousy. Bitter, isolated, and misunderstood.

Sometimes the physical pain is the least painful part, actually.

For many women with endo, and in my particular case, daily life consists of a dull discomfort. Exhaustion, nausea, aching muscles, twinges of pain in the abdomen – like a dark reminder not to get too comfortable.

And for other women, there’s none of this. Just because the pain isn’t as regular or as severe as other girls may describe it, doesn’t mean it isn’t endo. It very well could be. It’s really important to remember that everyone’s symptoms are different.

And yeah, okay.
I guess maybe sometimes it does feel like cramps.
But we call those our “good days”. 😉

Many thanks to Laurie Haughton on Facebook’s Endometriosis Support Sisters/ Awareness Group for sharing this article.

Prescription Painkiller Addiction: 7 Myths
Experts Debunk Myths About Prescription Pain Medication Addiction
By Miranda Hitti
Reviewed by Louise Chang, MD
WebMD Feature
 
Prescription pain medicine addiction grabs headlines when it sends celebrities spinning out of control. It also plagues many people out of the spotlight who grapple with painkiller addiction behind closed doors.
 
But although widespread, addiction to prescription painkillers is also widely misunderstood — and those misunderstandings can be dangerous and frightening for patients dealing with pain.
 
Where is the line between appropriate use and addiction to prescription pain medicines? And how can patients stay on the right side of that line, without suffering needlessly?
For answers, WebMD spoke with two pain medicine doctors, an expert from the National Institute on Drug Abuse, and a psychiatrist who treats addictions.
 
 Here are seven myths they identified about addiction to prescription pain medication.
 
1. Myth: If I need higher doses or have withdrawal symptoms when I quit, I’m addicted.

Reality: That might sound like addiction to you, but it’s not how doctors and addiction specialists define addiction.
 
“Everybody can become tolerant and dependent to a medication, and that does not mean that they are addicted,” says Christopher Gharibo, MD, director of pain medicine at the NYU Langone Medical School and NYU Hospital for Joint Diseases.
 
Tolerance and dependence don’t just happen with prescription pain drugs, notes Scott Fishman, MD, professor of anesthesiology and chief of the division of pain medicine at the University of California, Davis School of Medicine.
 
“They occur in drugs that aren’t addictive at all, and they occur in drugs that are addictive. So it’s independent of addiction,” says Fishman, who is the president and chairman of the American Pain Foundation and a past president of the American Academy of Pain Medication.
 
Many people mistakenly use the term “addiction” to refer to physical dependence. That includes doctors. “Probably not a week goes by that I don’t hear from a doctor who wants me to see their patient because they think they’re addicted, but really they’re just physically dependent,” Fishman says.
 
Fishman defines addiction as a “chronic disease … that’s typically defined by causing the compulsive use of a drug that produces harm or dysfunction, and the continued use despite that dysfunction.”
 
For instance, someone who’s addicted might have symptoms such as “having drugs interfere with your ability to function in your role [or] spending most of your time trying to procure a drug and take the drug,” says Susan Weiss, PhD, chief of the science policy branch at the National Institute on Drug Abuse.
 
“Physical dependence, which can include tolerance and withdrawal, is different,” says Weiss. “It’s a part of addiction but it can happen without someone being addicted.”
She adds that if people have withdrawal symptoms when they stop taking their painkiller, “it means that they need to be under a doctor’s care to stop taking the drugs, but not necessarily that they’re addicted.”
 
2. Myth: Everyone gets addicted to pain drugs if they take them long enough.
 
Reality: “The vast majority of people, when prescribed these medications, use them correctly without developing addiction,” says Marvin Seppala, MD, chief medical officer at the Hazelden Foundation, an addiction treatment center in Center City, Minn.
Fishman agrees. “In a program where these prescription drugs are used with responsible management, the signs of addiction or abuse would become evident over time and therefore would be acted on,” says Fishman.
 
Some warning signs, according to Seppala, could include raising your dose without consulting your doctor, or going to several doctors to get prescriptions without telling them about the prescriptions you already have. And as Weiss points out, being addicted means that your drug use is causing problems in your life but you keep doing it anyway.
 
But trying to diagnose early signs of addiction in yourself or a loved one can be tricky.
“Unless you really find out what’s going on, you’d be surprised by the individual facts behind any patient’s behavior. And again, at the end of the day, we’re here to treat suffering,” says Fishman.
 
Likewise, Weiss says it can be “very, very hard” to identify patients who are becoming addicted.
 
“When it comes to people who don’t have chronic pain and they’re addicted, it’s more straightforward because they’re using some of these drugs as party drugs, things like that and the criteria for addiction are pretty clear,” says Weiss.
 
“I think where it gets really complicated is when you’ve got somebody that’s in chronic pain and they wind up needing higher and higher doses, and you don’t know if this is a sign that they’re developing problems of addiction because something is really happening in their brain that’s … getting them more compulsively involved in taking the drug, or if their pain is getting worse because their disease is getting worse, or because they’re developing tolerance to the painkiller,” Weiss says.
 
“We know that drugs have risk, and what we’re good at in medicine is recognizing risk and managing it, as long as we’re willing to rise to that occasion,” says Fishman. “The key is that one has to manage the risks.”
 
3. Myth: Because most people don’t get addicted to painkillers, I can use them as I please.
 
Reality: You need to use prescription painkillers (and any other drug) properly. It’s not something patients should tinker with themselves.

“They definitely have an addiction potential,” says Gharibo. His advice: Use prescription pain medicines as prescribed by your doctor and report your responses — positive and negative — to your doctor.
 
Gharibo also says that he doesn’t encourage using opioids alone, but as part of a plan that also includes other treatment — including other types of drugs, as well as physical therapy and psychotherapy, when needed.
 
Gharibo says he tells patients about drugs’ risks and benefits, and if he thinks an opioid is appropriate for the patient, he prescribes it on a trial basis to see how the patient responds.
 
And although you may find that you need a higher dose, you shouldn’t take matters into your own hands. Overdosing is a risk, so setting your dose isn’t a do-it-yourself task.
 
“I think the escalation of the dosage is key,” says Seppala. “If people find that they just keep adding to the dose, whether it’s legitimate for pain or not, it’s worth taking a look at what’s going on, especially if they’re not talking with the caregiver as they do that.”
 
4. Myth: It’s better to bear the pain than to risk addiction.

Reality: Undertreating pain can cause needless suffering. If you have pain, talk to your doctor about it, and if you’re afraid about addiction, talk with them about that, too.
“People have a right to have their pain addressed,” says Fishman. “When someone’s in pain, there’s no risk-free option, including doing nothing.”
 
Fishman remembers a man who came to his emergency room with pain from prostate cancer that had spread throughout his body. “He was on no pain medicine at all,” Fishman recalls.
 
Fishman wrote the man a prescription for morphine, and the next day, the man was out golfing. “But a week later, he was back in the emergency room with pain out of control,” says Fishman. “He stopped taking his morphine because he thought anyone who took morphine for more than a week was an addict. And he was afraid that he was going to start robbing liquor stores and stealing lottery tickets. So these are very pervasive beliefs.”
 
Weiss, who has seen her mother-in-law resist taking opioids to treat chronic pain, notes that some people suffer pain because they fear addiction, while others are too casual about using painkillers.
 
“We don’t want to make people afraid of taking a medication that they need,” says Weiss. “At the same time, we want people to take these drugs seriously.”
 
5. Myth: All that matters is easing my pain.

Reality: Pain relief is key, but it’s not the only goal.
“We’re focusing on functional restoration when we prescribe analgesics or any intervention to control the patient’s pain,” says Gharibo.
 
He explains that functional restoration means “being autonomous, being able to attend to their activities of daily living, as well as forming friendships and an appropriate social environment.”
 
In other words, pain relief isn’t enough.
 
“If there is pain reduction without improved function, that may not be sufficient to continue opioid pharmacotherapy,” says Gharibo. “If we’re faced with a situation where we continue to increase the doses and we’re not getting any functional improvement, we’re not just going to go up and up on the dose. We’re going to change the plan.”
 
6. Myth: I’m a strong person. I won’t get addicted.

Reality: Addiction isn’t about willpower, and it’s not a moral failure. It’s a chronic disease, and some people are genetically more vulnerable than others, notes Fishman.
“The main risk factor for addiction is genetic predisposition,” Seppala agrees. “Do you have a family history of alcohol or addiction? Or do you have a history yourself and now you’re in recovery from that? That genetic history would potentially place you at higher risk of addiction for any substance, and in particular, you should be careful using the opioids for any length of time.”
 
Seppala says prescription painkiller abuse was “rare” when his career began, but is now second only to marijuana in terms of illicit use.
 
Exactly how many people are addicted to prescription painkillers isn’t clear. But 1.7 million people age 12 and older in the U.S. abused or were addicted to pain relievers in 2007, according to government data.  
 
And in a 2007 government survey, about 57% of people who reported taking pain relievers for “nonmedical” uses in the previous month said they’d gotten pain pills for free from someone they knew; only 18% said they’d gotten it from a doctor.
 
Don’t share prescription pain pills and don’t leave them somewhere that people could help themselves. “These are not something that you should hand out to your friends or relatives or leave around so that people can take a few from you without your even noticing it,” says Weiss.
 
7. Myth: My doctor will steer me clear of addiction.

Reality: Doctors certainly don’t want their patients to get addicted. But they may not have much training in addiction, or in pain management.
 
Most doctors don’t get much training in either topic, says Seppala. “We’ve got a naive physician population providing pain care and not knowing much about addiction. That’s a bad combination.”
 
Fishman agrees and urges patients to educate themselves about their prescriptions and to work with their doctors. “The best relationships are the ones where you’re partnering with your clinicians and exchanging ideas.”

Brain morphological changes associated with cyclic menstrual pain
Published in the journal Pain
Volume 150, Issue 3, September 2010, Pages 462-468
Cheng-Hao Tu, David M. Niddam, Hsiang-Tai Chao, Li-Fen Chen, Yong-Sheng Chen, Yu-Te Wu, Tzu-Chen Yeh, Jiing-Feng Lirng and Jen-Chuen Hsieh

Abstract
Primary dysmenorrhea (PDM) is the most prevalent gynecological disorder for women in the reproductive age. PDM patients suffer from lower abdominal pain that starts with the onset of the menstrual flow.

Prolonged nociceptive input to the central nervous system can induce functional and structural alterations throughout the nervous system.

In PDM, a chronic viscero-nociceptive drive of cyclic nature, indications of central sensitization and altered brain metabolism suggest a substantial central reorganization.

Previously, we hypothesized that disinhibition of orbitofrontal networks could be responsible for increased pain and negative affect in PDM. Here, we further tested this hypothesis. We used an optimized voxel-based morphometry (VBM) approach to compare total and regional gray matter (GM) increases and decreases in 32 PDM patients with 32 healthy age and menstrual cycle matched (peri-ovulatory phase) controls.

Abnormal decreases were found in regions involved in pain transmission, higher level sensory processing, and affect regulation while increases were found in regions involved in pain modulation and in regulation of endocrine function.

Moreover, GM changes in regions involved in top-down pain modulation and in generation of negative affect were related to the severity of the experienced PDM pain.

Our results demonstrate that abnormal GM volume changes are present in PDM patients even in the absence of pain. These changes may underpin a combination of impaired pain inhibition, increased pain facilitation and increased affect. Our findings highlight that longer lasting central changes may occur not only in sustained chronic pain conditions but also in cyclic occurring pain conditions.

Menstrual Cramps May Alter Brain Structure
ScienceDaily (Aug. 11, 2010)

“Primary dysmenorrhea (PDM), or menstrual cramps, is the most common gynecological disorder in women of childbearing age. Lower abdominal pain starts with the onset of menstrual flow and this ongoing pain stimulus can cause alterations throughout the nervous system.

In a study scheduled for publication in the September issue of the journal Pain, researchers report abnormal changes in the structure of the brain in PDM patients, whether or not they are in fact experiencing pain.
Lead investigator, Professor Jen-Chuen Hsieh, MD, PhD, Institute of Brain Science, National Yang-Ming University, Taipei, Taiwan, commented, “Our results demonstrated that abnormal GM [gray matter] changes were present in PDM patients even in absence of pain. This shows that not only sustained pain but also cyclic occurring menstrual pain can result in longer-lasting central changes. Although the functional consequences remain to be established, these results indicate that the adolescent brain is vulnerable to menstrual pain. Longitudinal studies are needed to probe hormonal interaction, fast-changing adaptation (intra-menstrual cycle) and whether such changes are reversible or not.”
32 PDM patients and 32 age- and menstrual-cycle-matched controls participated in the study. MRI scans of each subject were obtained when the PDM patients were not experiencing pain, and maps of gray matter (GM) were created. Both the total GM volume and the GM volume of specific brain areas were determined for both PDM patients and controls.
In these anatomical maps, significant GM volume changes were observed in the PDM patients. Abnormal decreases were found in regions involved in pain transmission, higher level sensory processing, and affect regulation while increases were found in regions involved in pain modulation and in regulation of endocrine function.”

Menstrual cramps may alter women’s brains
Posted 8/13/2010 9:00 AM
By Jenifer Goodwin, HealthDay

“Menstrual cramps are often dismissed as a mere nuisance, but new research suggests the monthly misery may be altering women’s brains.
Researchers in Taiwan used a type of brain scan known as optimized voxel-based morphometry to analyze the anatomy of the brains of 32 young women who reported experiencing moderate to severe menstrual cramps on a regular basis for several years, and 32 young women who did not experience much menstrual pain.

Even when they weren’t experiencing pain, women who had reported having bad cramps had abnormalities in their gray matter (a type of brain tissue), said study author Dr. Jen-Chuen Hsieh, a professor of neuroscience at the Institute of Brain Science at National Yang-Ming University in Taipei, Taiwan.

Those differences included abnormal decreases in volume in regions of the brain believed to be involved in pain processing, higher-level sensory processing and emotional regulation, as well as increases in regions involved in pain modulation and regulation of endocrine function.

Exactly how the changes in the brain could affect women’s experience of pain is unknown, researchers said. But the brain abnormalities suggest that menstrual pain may have similarities with other chronic pain conditions in that over time, repeated bouts of excruciating aches make the brain unusually sensitive to pain — in effect, making the experience of pain worse.

“A long-term bombardment by peripheral pain can elicit plastic changes in the central brain as a reactive adaptation,” Hsieh explained. “It can also be a crucial mechanism that perpetuates the ‘chronification’ of pain” — that is, a mechanism that can turn pain into a lingering affliction.

The study is published in the September issue of PAIN.

Menstrual cramps, or pain in the lower abdomen that occurs when the uterus contracts during menstruation, is the most common gynecological disorder in women of childbearing age, according to background information in the article.

Karen J. Berkley, a professor emeritus of neuroscience and psychology at Florida State University, said menstrual pain is too often not taken seriously.

“This is one of the first groups to call attention to menstrual cramps, the fact that the condition can have an impact on women’s lives, and it’s accompanied by changes in brain anatomy and function,” Berkley said.

Previously, the Taiwanese team reported that women suffering from menstrual cramps also have differences in brain activity as seen by positron emission tomography, another type of brain scan.

“Taken together, those two studies point to the fact that this continual cyclical pain in women is not unimportant,” Berkley said. “”

See, this is why I have my endo sisters. Rikki emailed me to let me know about a site called End Women’s Pain. Check it out!!

Apparently, the End Women’s Pain site was launched back in May, and I did get a Google Alert about it, but I am so far behind on regular updates to this blog that I did not read the email alert. In fact, I have almost 400 Google Alert emails pertaining to chronic pain and endometriosis that I still have not gone through.

Please check out the End Women’s Pain website and then contact Congress and tell them to make positive changes in health care in order to treat us more humanely.

I’d like to share one of the points they make in their analysis and policy recommendations report:

“Due to a lack of basic research on the underlying mechanisms of chronic pain, as well as pain syndromes and their treatment, the causes of these conditions remain a mystery, and evidence-based treatment options are severely limited. Sufferers are forced to experiment with a myriad of therapies, most with unknown benefits and risks, until they find a treatment or combination of treatments to relieve some of their painful symptoms.” – Chronic Pain in Women: Neglect, Dismissal and Discrimination. ANALYSIS AND POLICY RECOMMENDATIONS – May 2010

Also quoted in their report is:

“The overall quality of treatment for pain in the United States remains unacceptable for millions of patients with persistent pain.” -Pain medicine position paper. Pain Med. 2009; 10(6):972-1000

Lastly, please subscribe to the YouTube channel – Campaign To End Chronic Pain In Women, and watch this video:

 

The other day, a fellow endo blogger showed me the story you are about to read below. It affected me deeply, because I have entertained the same thoughts during the past 24-25 years I have suffered with endometriosis. Please read this story. I will be posting more about the topic.

So no one else will suffer
Posted: Thursday, December 10, 2009 1:00 am
By Lisa Fipps managing editor
editor@kokomoperspective.com

Kristi An Rose suffered with endometriosis for 12 years, from 1997 until May 7, 2009 – the day she put a gun to her head and pulled the trigger.

It was a tragic ending of a life that held great promise, a life that is dearly missed, a life that could have been different if more in the medical community knew how debilitating the condition is, knew how much those with it suffer, and knew to take it more seriously, according to her mother, Sherill Rose Hill.

Nightmare begins

In school, Kristi was very outgoing. After graduating from Northwestern High School, she was a workaholic, said Sherill. Kristi worked several jobs and loved it. She always loved art, especially photography. But at the age of 17, she was already having medical problems.

“Kristi had really bad pains in her abdomen during her periods,” Sherill said. “It wasn’t your typical cramps. It was abnormal. I took her to a couple of doctors. They all said, ‘She’s a teenager trying to get attention.’ That wasn’t Kristi at all. I ended up taking her to Indianapolis to Dr. David McLaughlin of Women’s Specialty Health Centers. He said, ‘I think I know what’s wrong.’ He did a laparoscopy on Feb. 12, 1997. He said she had endometriosis. She was so thrilled to know what was going on because everybody had said she was making it up. She knew she wasn’t.”

Endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus – usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity,” according to the Endometriosis Association.

According to the Cleveland Clinic, symptoms of endometriosis can include but are not limited to the following:

•extremely painful (or disabling) menstrual cramps; pain may get worse over time

•chronic pelvic pain (includes lower back pain and pelvic pain)

•pain during or after sex

•intestinal pain

•painful bowel movements or painful urination during menstrual periods

•heavy menstrual periods

•premenstrual spotting or bleeding between periods

•infertility

A few months later, Kristi had a microlaser laparotomy to vaporize the endometriosis.

For the first time in years, she felt better. The pain was gone. She was happy. So was Sherill. It’s excruciating to watch your child in such pain, Kristi’s mom said.

But then the endometriosis came back.

“The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following surgery,” according to the Cleveland Clinic.

Kristi’s came back in less than a year. She had another surgery to vaporize more of the tissue. It returned again.

In October 2000, Kristi and Sherill flew to Oregon to see a specialist. That doctor performed an oophorectomy, removing her left ovary. They found out that her fallopian tubes were packed with eggs. The endometriosis had prevented them from dropping down to the uterus monthly. Some would ask why Kristi didn’t have a hysterectomy. Doctors were hesitant to do that considering how young she was, Sherill said.

Besides, a hysterectomy is not a cure. Currently, there is no cure for endometriosis. Even having a hysterectomy or removing the ovaries does not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back.

After the surgery in Oregon, Kristi was still in pain. “That was a big let down,” Sherill said. “We thought it would be great. We thought it’d be all over.”

Kristi was in constant pain. Her mom searched the Internet trying to find someone who could help. In 2003, Kristi and Sherill headed to Birmingham, Ala., to see a specialist at the Chronic Pelvic Pain Treatment Center.

“When we drove there, we had big hopes,” Sherill said. “By the time we walked out of there, they’d diagnosed her with five different problems – all related to endometriosis.”

Severe pelvic congestive syndrome, vulvar vestibulitis, pelvic floor myalgia, irritable bowel syndrome, and abdominal wall trigger points.

Kristi also suffered from severe interstitial fibrosis of the bladder with chronic interstitial cystitis, a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.

The autopsy report gives a glimpse of just have pervasive the endometriosis was in Kristi’s body. It was on her liver. It was on her bowels. It was on her right kidney. Her right ovary had multiple cysts with large “chocolate cysts” (cysts that form when endometrial tissue invades an ovary), including one that had ruptured right before her death. Her fallopian tubes and right ovary had adhered to her uterus and pelvic wall. There were multiple fibrous pelvic adhesions.

“The doctor who did the autopsy said she had more endometriosis than anyone he’d ever seen,” Sherill said.

To say she was in pain is an understatement.

Kristi gave up. She was tired of doctors. She was tired of hospitals. She was tired of the pain.

In 2006, Sherill’s husband, Kristi’s stepfather, Mike Hill, developed cancer. Sherill was torn between helping her daughter who was suffering and her husband who was suffering.

“I told her, ‘We’re going to find something for you,’ ” Sherill said. She pleaded with her daughter to hang in there until they found someone who could help. By then Kristi had no insurance. Her mom and stepdad helped pay for her medical expenses. Kristi hated that. She was independent. She wanted to take care of herself.

On April 16, 2009, Mike Hill died.

“Kristi said, ‘Look at him. He’s at peace. I would love to be at peace,” Sherill said.

She began to worry about her daughter. She was sinking deeper and deeper into depression. A letter Kristi wrote on April 4 details her thoughts: “I am so tired of the pain. It is enough to drive someone crazy. Having constant pain all the time is enough to want to give up. Enough to want to put my fragile body to rest. My body can’t take any more. My brain is past the breaking point. My heart is broken. God, my heart is broken.”

“She was having grand mal seizures and pretty much bed-ridden then,” Sherill said of her daughter. “I got an uneasy feeling,” Sherill said. “So I hid the gun we kept in the house. Three days prior to her dying, she said, ‘I don’t want this anymore. They can’t fix me.’ I begged her. I said, ‘Please, let me see what I can find out. We’ll find something. She said no. ‘You’re not going to take me to another doctor, who will just take your money and say, ‘Well, we don’t know what else to do for her.’ ”

On May 7, 2009, Sherill was on her way home from a short trip to Kentucky and called her daughter.

“I told her I was almost home,” Sherill said, tears flowing down her cheeks. “She said, ‘I want you to remember one thing.’ I said, ‘What?’ She said, ‘I love you very, very, very, very, very, very, very, very, very, very much, Mom, and she just kept saying it. And I said I love you very, very, very much, too.’ ”

As Sherill drove home, Kristi searched the house and found the gun. She went outside to the back yard. She put the gun to her head. She pulled the trigger.

“When I got home, the police were in the yard,” Sherill said, sobbing. “I couldn’t pull into the driveway. My son, Tom, was there. I have another son, Michael. Tom had been in the house, and the neighbors came and got him. They said, ‘Your sister’s lying in the backyard.’ My son went out and got her. That’s just been very hard for him. He said, ‘I held her and she wasn’t talking.’ He said he kept thinking, ‘I gotta get this fixed before mom gets home.’ When I pulled up in the yard, as soon as I got out of the car, Tom grabbed a hold of me so tightly I could hardly breathe. He said, ‘Kristi shot herself.’ He held me so tight and he wouldn’t let go. I said, ‘Is she alive?’ He said, ‘Yes. They’re trying to get her stable.’ They wouldn’t let me go to the back yard. It seemed like forever and then they brought her to the front and put her in the ambulance. I yelled at her to fight like hell, and then we were on our way to the hospital. It wasn’t very long before they came out and said she didn’t make it. I said, ‘Can I see her?’ They let me see her, and when I looked at her I knew it was over for her. She suffered so much pain. Pain was a daily thing. The doctors didn’t take it as seriously as they could or should have.”

There was no funeral. Kristi had always said she wanted to be cremated. “I was with her every step of the way, I wasn’t going to let her go through that by herself,” Sherill said. “I’m not going to let her down now. I went down to Greenwood where they do it. I kissed her. I talked to her and then I watched as they took care of her.”

Sherill broke down in tears.

Her daughter killed herself 20 days after her husband died. Twenty days after her daughter’s suicide, Sherill had a dream. In it, Kristi was smiling, running, happy, free.

“That’s the one thing that’s kept me going because I know she’s not in pain anymore,” Sherill said, crying. “I’m just crying for myself now. I’m just so lonely I don’t know what to do with myself. I just don’t know what to do.”

What she has done, with her from her two sons, is have a fundraiser in Kristi’s memory, with the proceeds going to the Endometriosis Research Center.

“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”

To contact Sherill about the fundraiser, send an e-mail to endokristi [at] yahoo [dot] com.