A Migraine Sufferer Finds Hope Again

By Paul Hannah, Guest Columnist

On a Sunday morning 33 years ago, I was reading a newspaper in bed and was suddenly struck with a headache. I hadn't really had many headaches before, so I expected that this would pass with some non-prescription medication and an hour or so in bed.

I was very wrong.

I still have that headache today. If it would have stayed at a 1/10 pain level, I probably would not have done much about it. However, it didn't stay that low and that was where the problem lies.

When the headache moves to 4/10 or 5/10 I get concerned, because if I don't stop it at that point, it will rapidly scale up to a full migraine.

I have read other accounts of migraines, but very few accord with mine. My neck gets stiff, the trapezius muscles lock up, and my eyes start to hurt. I become rapidly photophobic and the pain gathers and localizes in the frontal lobe of my brain.

Once it reaches 6/10, I get a syringe from my migraine drawer and inject Maxolon into my arm muscle and immediately lie down. As a result of the photophobia, I have built myself a four poster bed so that I can draw the curtains and be in total darkness. After the Maxolon kicks in, I drink some liquids, often very strong coffee, and take as many of the various painkillers as I dare.

PAUL HANNAH

About fifty percent of the time, that is enough and spending the next five or ten hours in bed gets me well enough to function again. The other fifty percent of the time, it gets worse. Much worse.

It feels like someone is reaching into my skull and squeezing the frontal lobe of my brain with each beat of my heart. At this point, it becomes imperative, as bizarre as it seems, for me to concentrate. This is because the pain momentarily stops when I sub-consciously hold my breath, and then when I do finally breathe, it gets worse.

These migraines happen so frequently and unpredictably that I have given up traveling. I joke and say that I have seen the inside of too many foreign hospitals - but it is no joke, I love traveling. I miss it terribly.

I have a sympathetic doctor who will write scripts for pethidine (Demerol) every six weeks. It took literally years of doctor shopping to find him. If I have any pethidine left, I give myself an injection. The wave of relief that passes through me with that drug is hard to describe. I heard an opium addict describe her relief like this: "The pain is still there, you can still feel its presence, but it doesn't hurt anymore." It is like that for me.

Every migraine sufferer I have discussed this with has resonated with three annoying things that people come up with. Some women (and it always has been women in my experience) place two fingers to their temples and say, "I have a migraine". Anyone that has ever experienced a 10/10 could no more speak and function as 'normally' as that, than fly. They simply have no idea how bad it is. Fingers are regarded as among the most sensitive to pain areas of the body and anyone hitting a thumb with a hammer can attest.

Eighteen months ago I had an accident in my workshop and cut off my left index finger, half of my thumb and mashed up the other fingers in that hand. The pain level was 5/10. I took the painkillers the paramedics offered, but I didn't need them. The painkillers I took in hospital were for my head, not my hand.

The second annoying thing is when we are asked, "Have you looked into the cause?" I am barely able to contain my sarcasm when confronted with this. I desperately want to say something like "Well goodness me! That IS a good idea, why didn't I think of this thirty years ago?" But I don't, I just look away and say something equally inane.

Just as annoying are those that have an aunt who was cured by giving up coffee (tried it for 9 months, no change), going through menopause (strangely enough, not all that helpful to me) or taken some homeopathic/natural or equally nonsense cure (One said a foot massage was sure to fix it).

I am fortunate in that I live in Australia, a place where universal free healthcare is considered a citizen's right and a government's responsibility. So I have had several MRIs, X-rays and even an EEG, nothing has ever shown up as anything but normal.

When Francis Collins finished the Human Genome Project I thought it was marvelous from a human achievement point of view, but nothing more. I had no idea that it was going to change my life. But change it, it did and in all the right ways.

When I heard about this from another genuine migraine sufferer I took a blood test and for the first time in 33 years I had a non-normal result. It seems there is a genetic mutation called MTHFR, and if a person has one of them, it makes it difficult to process vitamin B. I have two of the sods.

I have spent my life being deficient in Vitamin B2, all the while my blood was full of the stuff. Both of those conditions can cause migraines. For the last eight weeks I have been taking a number of supplments and a cream - DHEA/CHYSIN, zinc, B-2, 5-MTHF and D-3. So far, I have had nothing worse than a 4/10 headache and I have every reason to suspect that this improvement will continue.

The Human Genome Project has given me something I thought I would never have again: hope. And hope to the hopeless is a marvelous thing. Truly marvelous.

I urge every migraine sufferer who can afford it to take the test. This isn't foot massage or acupuncture nonsense, it might actually work.

Paul Hannah lives in a small town just north of Brisbane, Australia on a few acres of bush populated with wallabies, koalas and a wide variety of native birds. He is retired and enjoys writing, history, astronomy and woodwork. 

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Changing Attitudes about Doctors

By Emily Ullrich, Columnist

Over the six years I've dealt with chronic pain, doctors' attitudes toward me have changed. My attitude toward them has also changed, unfortunately, for the worse.

It changed because my experiences with doctors changed. Those of you who have been dealing with chronic illness for a significant time will likely know exactly what I mean. At first, we are a challenge. They want to see if they can figure out what the last doctor could not. They want to help us.

But, when they see that we are not getting better and that the only thing that they can do is manage our symptoms, their attitude changes. This is particularly true for those of us with multiple diagnoses.

I started with pelvic pain. I had a compassionate primary care doctor and, at the time, there was not such hysteria surrounding opioid pain medicine. He did his best to manage my pain and sent me to a pelvic pain specialist.

The pelvic pain specialist gave me hope. He let me know that it was not all in my head and that he felt we could make progress. He was honest and told me that we may not be able to eliminate the pain, but he was confident that we could get it down to a level with which I could live.

He tried many different treatments over the years and things only got worse. Finally, I suggested something. And it worked. He isn't happy to see me anymore.

As time progressed, I began to develop more symptoms and more potential diagnoses. I read about six books on fibromyalgia and knew that I had it. I brought this information to my primary care doctor, who laughed at me. He told me he “did not believe in fibro.” I argued that clearly it was something that affected enough people that it was worth considering.

Reluctantly, he referred me to a neurologist, who confirmed my suspicions. I later read in my primary care doctor's notes that “she is convinced she has 'fibromyalgia.'” This made me furious. I could feel his condescending tone.

Almost every visit with my doctor, he would prescribe some new medicine (which I now know he was getting kickbacks from, because they were always the meds he had samples of). I was on a constant roller coaster of side effects, systemic agitation, and withdrawal. He changed or suddenly took me off different antidepressants, benzodiazepines, and other meds regularly. When I complained that the meds where making things worse, he became increasingly frustrated with me.

As my new ailments continued to pile up, the help I was getting began to taper down. I was angry, depressed, confused, and losing hope by the minute. Then, I read this letter from a doctor and this article by another doctor, both expressing frustration in dealing with pain patients. They made sense. Although they weren’t helpful to my health, they did explain what was happening to me with doctors.

I am a very strong-willed woman. I have a booming voice, I am confident in my intelligence and research. I come to doctor's appointments prepared and I ask questions until I get an answer I am satisfied with. I thought that most of these things were characteristics of a “good patient.” It turns out, they're not. They are things that intimidate and annoy doctors.

So, I tried to tone it down a bit. I still came prepared and well-informed about my ailments, but tried to soften by voice and approach. Instead of forging forward with my thoughts, I started to try to make doctors feel they were the ones who came up with ideas for treatment.

I felt like a phony. And it really wasn't helping in the overall picture. Doctors “liked” me better, but I didn't get what I wanted out of them.

My multitude of ailments has continued to accumulate for years. All of it seems to have been kicked off by episodes of malaria, amoebiasis (a parasite infection) and typhoid fever when I was in Kenya. I returned to the U.S. and my health hasn't been the same since. I and many of my healthcare providers suspected a connection, but I've never been able to get too far with that theory.

What I have realized is that fighting to get diagnosed with fibromyalgia was not the answer I had hoped for. In fact, it was an excuse for doctors who can't find an answer of their own. Lately, no matter what I'm suffering from, there are three possible diagnoses: fibromyalgia, irritable bowel syndrome or the fact that I take opioids.

I can almost count on it. After a doctor tries one or two treatment approaches, and I don't respond in the way they hoped or within a time frame that is considered “normal” (which, by the way, I NEVER do), it's because I take pain medicine, have IBS or fibromyalgia.

Most recently, after multiple hospital admissions with acute upper abdominal pain and vomiting (and even after a test showed ampullary stenosis, scarring of the pancreas, and reoccurring episodes of pancreatitis) the doctor still did not want to “label” me with chronic pancreatitis. Instead, he decided it is because I have IBS or fibromyalgia. After I argued about those diagnoses, the doctor settled on “narcotic bowel syndrome.”

Once you reach a certain number of diagnoses, it's like they check out. I can feel it. When they see me coming, they begin to put off a vibe of annoyance and distrust. It's heartbreaking. I need them. I need to be given a fair shot. But they don't want to deal with me. I'm too complicated.

On top of it all, I’m told I read too much. More than one doctor has said, “Stop reading.”

It’s as though they want me to just trust everything they say and never challenge it. That would be nice. I wish I could. But how can I, when they use my need for pain medicine or my pre-existing diagnoses as a crutch?

Emily Ullrich suffers from CRPS/RSD, Sphincter of Oddi Dysfunction/Papillary stenosis, carpal tunnel syndrome, endometriosis, chronic gastritis, Interstitial Cystitis, uterine fibroid tumors, migraines, fibromyalgia, osteoarthritis, Periodic Limb Movement Disorder (PLMD), Restless Leg Syndrome (RLS), Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and IBS.

Emily is a writer, artist, filmmaker, activist, and has even been an occasional stand-up comedian. She now focuses mainly on pain patient advocacy as a delegate for the International Pain Foundation, as she is able.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Companion: Talking About Pain

By Sarah Anne Shockley, Columnist

A lot of us don’t like to talk about our pain, understandably. It often seems easier just to live with it in silence than to discuss it with anyone. Ever.

If others have never experienced long-term pain or are pain-avoidant, it can be nearly impossible for them to understand what we’re talking about. We may be answered with blank stares or outright disbelief.

Or, what often happens is that others feel they must try to fix us. We are offered all kinds of medical advice, given the business card of a favorite massage therapist, or web address for the latest miracle supplement. Or we’re told exactly what we don't need to hear: buck up, carry on, be more positive, grin and bear it. Fending off the well-meaning fixers can be exhausting, so we just keep quiet.

And, when we do talk honestly and openly about our pain, sometimes it feels like we’re walking right into the center of it. We become very present to it, and if it also feels like we’re not really heard or validated, we’ve added another level of emotional pain and disappointment to our physical pain. So why bother?

These are all perfectly understandable reasons for not talking about pain.

So why would we talk about it?

Because the alternative - never fully expressing to anyone what we are going through at the deepest levels - is much harder in the long run.  As you probably know quite well, living with pain can be extremely isolating. We are alone in our unique and deeply intimate experience of pain.

While we have very good reasons not to talk about our pain with everyone, if we never talk about it we can feel increasingly disconnected from others, from life, and from ourselves. And I know from personal experience that this can be a very difficult way to live.

For eight years, the only person who understood the full extent of the pain I was in was my neurologist. For all of the reasons listed above, I simply never told anyone else how bad it really was. And I can say at this point that living with pain doesn't get easier and life doesn’t get better by not talking about it. That choice only increases the feelings of invisibility, isolation, and disconnection.

However, talking openly about pain is a tricky business. Finding someone who can be with us and just listen is challenging because so many think they are being helpful by trying to distract us from our pain, or help us overcome, avoid, or downplay it.

People are so geared toward ending pain that they are not always prepared to just be with us and be a compassionate witness. And some people are living with their own unexpressed pain, whether physical or emotional, and they just don’t have the capacity to hear about ours.

So, I would not advocate talking about your pain to just anyone.  It requires a somewhat selective process. There are friends and family that you would like to be able to share with who will not be willing or able. Think about the people in your life that you consider good listeners and who you can trust to truly have your best interests at heart.

Even if there is no one you know who has experienced physical pain in the way that you have, there will most likely be someone who has experienced a deep loss or had to face very trying circumstances that will give them a deeper sense of compassion for what you are going through. They may have been dealing with their own private pains and you may be surprised to find out that they understand about hiding, isolation and loneliness. If you feel there is no one like that in your life, then a trained therapist can be a good choice.

Once you’ve ascertained that this person is an appropriate choice and they are agreeable, then help them understand that what you need is a pair of receptive ears and a receptive heart, and that talking about your pain won’t make it worse, but will actually help you.

Tell them that what you are going to share may be difficult for them to hear, but that you really need them to just be there and hear it without offering anything back for now. Ask them to please hear you out without trying to change anything, fix anything, offer advice, or console you.

Before you have your talk, see if they are willing to agree to the following ground rules:

• Listen to your story without interrupting
• Be present with you in your pain without pity and without fixing
• To not offer advice, just witness

Let them know that the most supportive thing they can do for you right now is not to try to make it all better or make it all go away, but to just be present with you and let you have your pain and not try to change anything for now.

You may want to tell several people, but you may also find that one trusted person who can see you, hear you, and be with you in it is enough. Then, of course, express your gratitude in whatever way you feel is appropriate and let them know what a great gift they have given to you.

And, perhaps when you are done telling your story to this person, on another day, you can offer receptive ears and a receptive heart to them.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Hummingbirds: A Poem About Pain

"Hummingbirds"

By Connie Dyste Tucker

I have one of my own,

a hummingbird, bright of feather,

light of wing. She fits into my day,

sipping my sugar, hardly hovering, always

sparkling.

Bird dogs, I have one of those, too.

Keen of sight, smart of nose.

He lays at my feet

dreaming of birds, not hummingbirds,

birds of substance – quail, grouse.

Birds he can present to us, his tiny, sad gifts.

And a spooky cat, a small black blanket

who sits in a chair, scared of the world.

For good reason.

So when I see him stroll out the kitchen door,

past the dogs,

boldly, unafraid, to a lovely spot in the garden,

I think, there goes a cat who can pull it off

when he needs to, you know, the confidence

thing.

I can take my pain and put it in my pocket,

walk out the door and say to the scary world,

I am light of feather, swift of wing.

I am not this sad heavy body,

I am dreaming of birds, I can fly away from this,

I can sip sugar. I can eat my words.

Editor’s note: Connie Dyste Tucker is a family friend who passed away last year after a long struggle with lung cancer and chronic pain.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org. 

Sneeze Alert: What It’s Like to Taper off Opioids

By Crystal Lindell, Columnist

As a result of feeling a bit better lately, I have been trying to go off all of my opioid pain medications, which at one point totaled as much as 60 mg a day — three, 8-hour time release 15 mg morphine pills and then as many as three, short-acting, 5 mg hydrocodone as needed.

I worked my way down from 60 mg a day to 15 mg a day over the course of a month, and then tried to drop down to zero. It did not go well. You can read more about that here.

A little over a week after trying to go cold turkey, for various reasons involving a fresh pain flare and horrific withdrawal symptoms, I ended up back on the drugs. And I have spent the last few months working with a team of doctors trying to figure all this out and attempting to slowly taper off those last 15 mg. 

This is what it’s been like:

Withdrawal is sneezing. Every three or four minutes. As soon as the opioids wear off at all — I’m sneezing.

And it’s anxiety. And waking up drenched in sweat. And it’s the kind of diarrhea that you have to learn to accept as a part of your life now. The kind that fills the toilet multiple times a day and leaves your legs weak. 

It’s calling your high school boyfriend at 2 p.m. on a Friday because you’re in Target having an anxiety attack for no reason and you need to talk to someone, anyone, or you might actually die right there between the fitting room and the yoga pants display. It’s immediately regretting that phone call and then having anxiety about why you made it in the first place.

It’s not sleeping. God is withdrawal not sleeping. You’re lucky if you get four hours in one night. And waking up at 3 a.m.   

It’s giving up, and then trying again tomorrow.

It’s realizing that cutting your pills in half and taking them in a different time configuration actually helps a lot. And it’s tracking every dose and every symptom in Google Keep.

It’s deciding that maybe dating isn’t the greatest idea when your fight or flight response is literally kicking in every time it takes a guy more than seven minutes to respond to a text message. It’s giving in and going out with a guy on a Tuesday night anyway because the escape is worth it.  

It’s doing a lot of things you aren’t proud of.

It’s your primary care doctor telling you that other people have no problems at all going off these drugs, then qualifying his statement with, “But, I mean, I believe you,” which somehow implies he doesn’t.

It’s reaching out to your old psychologist and pleading for help, and then getting referred to a psychiatrist who specializes in this sort of thing and finally finding one person on the whole entire Earth who actually has some idea of what you’re going through.

It’s a glass of wine, and a handful of Advil, and lots of sugar candy, as you try to find anything to help manage the symptoms.

It’s slow. Withdrawal is maddeningly slow. It’s going down 1.25 mg in a day and feeling like the world is ending and waking up more anxious than you’ve ever been. And wondering if you can actually do this.

And then it’s a post anxiety-crash four hours later, and being so tired that you can’t even move your arm to check your phone.

Withdrawal is multiple people calling you a drug addict to your face because your body is physically dependent on a medication you were given by a doctor. It’s multiple people saying you just need more willpower and more prayer and more desire to get off the drugs.

It’s wondering if maybe you are a drug addict.

It’s trying to eat Taco Bell because Taco Bell usually solves everything and then realizing that you can’t even stomach a cheesy gordita crunch because the withdrawal has destroyed your appetite. 

It’s working out to help the anxiety, and using the stupid Calm App for meditations that never work, and texting your best friend 72 times an hour so that you know you’re not alone. And then texting her again. And it’s breathing her oxygen for awhile because you don’t seem to have any of your own.

It’s intestinal cramping so severe that you’re literally doubled over in pain on the couch, crying out in pain, wondering if this is the end.

It’s deciding to go back to church because for some reason, for that hour each week, you feel maybe a little bit of peace.

Withdrawal is feeling weak.

It’s wondering if you’ll ever feel normal again. It’s wondering that over and over and over and trying to convince yourself that someday you will get a full night's sleep and you won’t wake up covered in sweat and you won’t have diarrhea first thing in the morning and you won’t have the crushing feeling of anxiety as you greet the day.

Withdrawal is trying to live a normal life while your body goes through hell every day. It’s trying to work and be a good friend and a decent human being when all you want to do is die. It’s trying to figure out how much information, exactly, you should give your boss about your opioid dependence.

It’s having a pain flare and thinking that maybe the drugs were doing more than you thought, and wondering if you’re even doing the right thing.

It’s saying that John Green quote about survival to yourself 59 times a day. The one that goes, “I'm not saying that everything is survivable. Just that everything except the last thing is.” And then it’s reminding yourself that this is probably not the last thing. 

And it’s reaching out to your Facebook friend who has the same chronic pain you have and him telling you that you have to do this — it’s important that you do this — because if you don’t the next best option is in-patient treatment and you don’t want that.

It’s trying to distract yourself with The Hobbit, and Spotlight and Downtown Abbey, and Facebook.

Withdrawal is still happening. It’s ongoing. It’s a long-term goal. A hope that one day you’ll be clean — whatever that means. 

It’s praying, and crying, and giving up, and trying again.

And it’s sneezing.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Change in Pain Care Policy Overdue

By Carol Levy, Columnist

In 2003, the National Pain Care Policy Act was first introduced in the U.S. Congress, calling for “adequate pain care research, education, and treatment as national public health priorities.”

At the time, information about chronic pain and the effect it has on lost productivity and economy was important enough that Rep. Mike Rogers (R-Michigan) wanted to try and do something about it.

While the House approved his bill, the Senate refused to take any action. Three more times it was introduced. Each time the House passed it and the Senate wouldn’t even consider it.

In the last few years there has been the gigantic hue and cry about the “opioid epidemic.” More often than not, the chronic pain community is named as culprit number one.

Just imagine if the Senate had listened in 2003 when Rogers first introduced his legislation.

Nearly 13 years have passed. How many new drugs? How many new treatments and procedures might have been developed by now? Would opioids still be one of the first weapons doctors arm their patients with? Would they still be telling patients, “You just need to learn to live with it.”

I often hear this from many in the pain community: “My doctor will not continue giving me the narcotic he has had me on for years. He no longer commiserates with me and says he will do all he can to help. Now he says ‘Sorry, I have decided to no longer write those prescriptions.’”

The patient looks at him, beseechingly. “What am I supposed to do? Do you have anything else to give me, to do for me? Please.”

He shakes his head, maybe ruefully, maybe not. “Sorry. Nothing else I can do for you.”

Many of us know the next step personally. We call other physicians’ offices. “Are you accepting new patients?” Too often the answer is no.

If they say yes and you add, “I am looking for a doctor to prescribe medication for my chronic pain,” the door is slammed shut in our ear. “We do not take patients who want narcotics.”

Now we are seen as a drug seeker. All because we want to stop or at the least reduce the pain.

If we were diabetic and said, “I am looking for a doctor to prescribe my insulin,” the reception would most probably be quite different. At worst they’d say, “The doctor will decide if that's right for you or if a different form of treatment is better.”

Patients should not have to search high and low for a doctor to treat them. And a patient saying upfront what they feel they need is not a sign they are fakers, drug seekers or malingerers.

I get it. When a patient says they want oxycodone, hydrocodone or Vicodin, I can understand it being heard as “I want opiates.” Instead of a discussion about working together to figure out what to do, it is easier to dismiss the patient.

When the Affordable Care Act (ACA) passed, it included amendments that were part of the National Pain Care Policy Act of 2003.

President Obama recently said, “If we go to doctors right now and say 'Don't overprescribe' without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we're not going to solve the problem.”

It is wonderful that he recognizes this. But it is way past time to see action on the ACA's call to arms against chronic pain.

As it now stands, many in Congress want to become the third person in the consulting room, trying to proscribe what doctors prescribe if it is in the form of an opioid.

Research and development of new treatments -- including non-opioid drugs -- is what we have needed and continue to need. Opioids should be the last “go to” measure, not the first or only one.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Hospital Pain Care Needs Improvement

By Barby Ingle, Columnist 

Most hospital staffs are poorly trained in pain management, in my opinion. They are used to acute emergency situations and seeing many of the same ones over and over. So when a “zebra” (someone with a complex chronic condition) gets pushed in on a stretcher, they tend to have thoughts like these:

“Oh boy, I am going to have to work.”

“I don’t believe that this person is as bad as they say.”

“I have seen others in worse physical condition and this person looks ‘normal’ so they can’t be experiencing what they say is going on.”

I had an emergency room doctor tell me once that I didn’t have a blocked bladder. He got out a machine to measure how full my bladder was, but I think he never even turned it on. He said my bladder was empty.

I was in so much pain at the time that I told him he was reading it wrong and that my bladder was extremely full and hurt dramatically. I begged him use a catheter on me. Finally, probably after being sick of hearing me cry out in pain, he let the nurse use a catheter. Guess what? I was right. After my bladder was drained, the pain subsided and I was released to go home. The doctor apologized.

Another time I was taken to the hospital with multiple kidney stones. The ER rooms were full and patients on stretchers were lining the hallways. I was quietly crying from pain, curled up in a ball on my stretcher, watching as other patients were being paid attention to and given pain care. What were they doing different than me? They were loud and obnoxious.

I finally reached my breaking point. I allowed myself to yell out in pain and a few choice words also followed. In less than a minute, a nurse who had told me before that she couldn't give me anything for pain until they got me in a room was beside me with a dose of pain medication.

I know my body. Most people living with a chronic condition know their body and what is new, different, worse, or better. We just know. It’s time that providers trust us and realize that we are there for a reason. The vast majority of us are not trying to score opioids, but trying to get relief because we have reached our breaking point. 

One of the most important issues in an emergency room after lifesaving measures is the patient’s pain care. This is especially true in an acute situation, which is typically why we go to the emergency room in the first place. I don’t know many people who go to the ER or are hospitalized for chronic pain only.

The need for optimal pain care during hospitalization is high, but unfortunately proper and timely pain care is hit and miss at best.  

That’s why Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain patients about their treatment in hospitals.

The survey, which you can take by clicking here, will help us document how bad the problem is and what can be done to fix it.

Patients who try to be their own best advocate and take personal responsibility for their health should not be discarded because addicts or a small number of pain patients are abusing medications. Yes, abuse needs to be addressed. But pain should not be neglected. Controlling pain is important to the overall outcome of the emergency situation.

In past columns I have discussed the importance of asking for your pain medication at least 30 minutes before you may need them while in the hospital. That is because hospital nurses are trained to wait for you to ask for the medication before they order it -- even if the provider has it marked in your chart that pain medication is allowed. If you do not know to ask, your pain cycles and levels will become harder to control. I have been in this situation many times myself.

I know if I go to the hospital closest to my house, I will not get as good assistance with pain management as I would if I drove a little farther to another hospital. I have to consider other issues as well, such as how long I may have to stay at the hospital, will they have my regular medications, and will they have a staff that understands reflex sympathetic dystrophy and the secondary challenges that come with treating a ‘thick case file’ patient.

When I know I am being listened to as a valuable and knowledgeable patient and team member in my care, my pain will be better managed and I will rate the hospital higher in patient satisfaction surveys. When my underlying condition is not addressed, they’ll get a negative review.

Should a doctor be worried about how I am going to score them? Not if they treat me fairly, individually and as part of my treatment team. Does this mean they should just hand me whatever I ask for? No. It means that they need to use my personal assessment of pain as part of the planning for my care. Not doing so is neglecting the patient.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: The Face of Lupus

By: Arlene Grau, Columnist

I like to think I eat healthy since being diagnosed with lupus. It wasn't too difficult because I grew up in a home where soda was never allowed and we hardly ever ate things high in sugar.

Since becoming a mother myself I decided organic foods were the best for my kids and greasy, processed items would not be something we would be eating. I notice the difference my diet has made in my overall well-being because anytime I give into temptation and have a cheeseburger, I end up extremely sick and with swollen joints.

Although I have food figured out, I recently discovered that lupus is full of surprises.

Living in Southern California, I know that I have to wear extra sun block to protect me from the sun because I break out in rashes, usually on my arms, because of my disease. This has happened every year, and on some occasions I’d get what's known as a butterfly rash across my cheeks, usually so mild it looked like blush instead.

Two weeks ago I woke up and my cheeks looked like I had been slapped so hard that it left welts and redness. My cheeks not only had a very severe butterfly rash, they were swollen.

I tried everything I had to cover up the rash but the redness showed right through my makeup. I bought over the counter hydrocortisone cream but it didn't decrease the redness, although it did help with the burning.

Washing my face with a brush was making it worse so I had to stop. It's been two weeks and no progress has been made.

I saw my rheumatologist a few days ago because I'm having a lupus flare. Aside from the issue I'm having with the face rash, I've got swollen knuckles, fingers and knees, and a significant amount of hair loss in the last few months. Anytime I shower or brush, I get a handful of hair that falls out or breaks off.

So now I'm taking folic acid, prenatal vitamins and ovation hair therapy pills to try to repair the damage. Luckily, my rheumatologist referred me to a dermatologist at USC and my doctor says they can prescribe something stronger for my face or even inject into the rash.

I've never been the type of person who cared what others thought about her looks until I got sick. Not because I'm sick, but because of all the scars I've acquired since my surgeries. My journey is only beginning. If my rash doesn't get better it will permanently scar my face.

What's the first thing you see when you look at someone? Their face. Since getting my rash I haven't wanted to leave my house. I even missed reading to my daughter’s class because I was too embarrassed to be with the other parents.

This morning I decided I wouldn't wait for my appointment with the dermatologist next week or for the medication to kick in (once I get some). I took matters into my own hands to find a way to temporarily cover up my rash. So, I went into a cosmetic store the minute it opened, found the cutest little worker and explained my situation to her.

I don't know much about makeup because I don't wear a lot, so I was amazed when she explained why there's a green cover up that goes on first, then she applied foundation and after that a powder. The end result had me crying like a baby. I couldn't stop thanking her for what she had done for me. I was Arlene again. I was looking at myself and I couldn't believe it. There was no redness or puffiness; it was the same flawless skin I was used to having before the rash.

It may seem silly, but something as simple as getting my makeup done has completely changed the way I feel about myself. I'm okay with leaving the house to run an errand because now I know how to cover up my rash properly. It's easy for me to cover up my body if I break out in rashes, but my face is always exposed even with a hat on. But now I feel beautiful again.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why I Keep Writing About Myself Online

By Crystal Lindell, Columnist

The other month I was chatting with this guy on Tinder. To protect the guilty, we’ll just call him Jerk I Should Have Swiped Left On — or Jerk for short.

All he knew about me was my first name, that I hate the Green Bay Packers, and that I write for a candy magazine. But it was all he needed.

Jerk: Hey. Sorry I took a minute to text back. I was just reading about a hurricane.

Me: What? There’s a hurricane? WHERE? OMG?

Jerk: No, I found your column.

He was talking about this column:  “Surviving the Hurricane of Chronic Pain.”    

You know, the one where I share all the intimate details of being in chronic pain for the last three years. 

Where I allude to things like suicidal thoughts with lines like: “I spent almost six months on the verge of drowning. And eventually I just got so tired that I wanted nothing more than to close my eyes, fall back into the water, and let it all go.”

And I talk about how many drugs I take. And how I live with my mom. And how I only barely survived the last few years.  

I had never even met this man and yet he was already getting a glimpse into incredibly personal parts of my life story.  It kind of made me mad, if I’m being honest. I mean, yes, I put it all out there. But I wasn’t expecting Jerk to go looking for it all so quickly. 

I was a writer long before I woke up with rib pain in February 2013. And since then, I’ve turned to the written word to try and make sense of it all. I always say: Writing is just a part of my soul, and when I go through things, I can’t not write about it. 

Of course, choosing to share those writings with the world is another thing altogether. And it’s a choice I make with great care. 

I try to be raw, visceral and real, but at the same time there are actually some things that are off limits. There are some pieces of my writing that only my best friend has ever read because I decided they were just a bit too personal for the internet. 

But even with that filter, there’s a lot about me out there for all the world to read. And all of it includes my real name. 

Anyone with three minutes and Google can find out about my long-term health problems, my opioid use, and my struggles with suicidal thoughts. And while it kind of sucks when a Tinder guy I think I might like finds all that stuff, it’s probably worse when people I know professionally see all of that as well. 

But then, I get the emails. And the private Facebook messages. And the comments. And I remember why I keep putting everything out there. 

I get emails that say things like:

“[Chronic pain] is a tough thing to live with for sure and I've felt so much of what you've written. It’s nice to know it's not just me to be honest.”

And private Facebook messages like:

“I've not openly shared my story like this before, just beginning to live a more transparent life, sharing and caring with others. You inspire me, by being so open with your story and the writing. Soon I will be working on my YouTube channel doing just this, sharing my testimony and journey in hopes to share connect helping one another. Peace.”

And Cat, who runs an intercostal neuralgia support group on Facebook, links to my column about my Painniversary, with comments like:

“So, I've never actually met someone with my condition face to face. But this is my friend Crystal who lives in USA, and has intercostal neuralgia like me. She is a writer and this is her pain blog. We 'met' through the support page I started 4 years ago.

My Painniversary is the 1st of October 2010. My pain hasn't improved. It's changed a bit though. I don't feel like I'm being stabbed as often, and I don't get the ‘needle of icicles’ down my nipple so much either, but the 24/7 relentlessness is always there. Weird to say, but it's comforting to know there are others like me who get what I'm going through.

Pain cannot be explained only experienced, but I totally get what Crystal is saying. I understand x.”

I read all this and it stops me in tracks.

I’ll be at my sister’s basketball game or waiting for a Tinder date to show up, and I’ll get a little notification or I’ll see a comment and I’ll just stop. I promise you, I read every single comment, every single email, every single Facebook message. And every single one of them touches my heart in a way that I can’t even explain. And I have to say, thank you to every single person who has ever taken the time to read my work, and then felt compelled to comment. Seriously. Thank you.

So yes, it actually really is annoying and frustrating when Jerk on Tinder finds out way too much about me before we even share a glass of wine together. But I’m going to keep putting myself out there, sharing way too much information about my life.

Because if I literally only help one person know that they aren’t alone and they aren’t crazy, then it’s more than worth it. Even if it means that ultimately, things don’t work out with Jerk from Tinder.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Living with Chronic Blood Clots

By Martin Lemieux, Guest Columnist

My story starts when I was 18 years old, almost 20 years ago, when I had my first deep vein thrombosis (DVT), a blood clot in my lower left leg.

At first doctors thought it was due to a back sprain that had forced me to lie down for a long period. But when I started getting a blood clot about once a year thereafter, they investigated further.

When I was 21, I was diagnosed with Factor V Leiden – a blood clotting disorder – which meant I would be prone to clotting for the rest of my life. At that age, it was a scary thought. I knew people died from blood clots every single day and I later learned that clots are the third leading cause of death by disease.

My mom was especially afraid for my well-being and would constantly want me to be careful. But being extra careful all the time isn't living; it's like being in prison for the mind.

About 9 years ago, a reddish/black round spot appeared on the ankle of my left leg. After a physical day of work, I came home, took off my work boots and this spot ripped off with my sock, causing a great deal of pain and bleeding. Panicking, I went straight to the hospital. Even after extensive tests, no one had any answers. I was given outpatient wound care, which went on for awhile.

martin lemieux

The wound itself became larger, more inflamed and caused a great deal of pain. I was referred to a leading dermatologist in Canada, who determined that these chronic wounds could be due to a condition called Rheumatoid Vasculitis, a diagnosis that later proved to be false.

Not knowing for sure what is wrong with you is hard to go through, especially when answers are swirled around you for years. My family took it the hardest, since all they wanted were some answers that might one day help heal my wounds.

Any form of Vasculitis is rare. I was treated with prednisone for almost two years with no effect. I didn't want to be on prednisone anymore because of the major side-effects and the fact that my wounds were not healing. My specialists agreed, which raised the possibility that it could be another even rarer condition called Livedoid Vasculopathy (LV).

There's very little documentation on this condition and even less on ways to treat LV. I've tried many treatments, including daily injections of low-molecular weight heparin (a blood thinner) and even a daily 6-week treatment using hyperbaric oxygen tank therapy to induce oxygen where it counts most.

Unfortunately, due to my underlining conditions, any treatment we've tried has had little to no effect.

Both of my legs have been wrapped with Coban 2 layer compression bandages, Biatain ibu wound dressings, and other dressing materials for almost 9 years straight.

I've unfortunately become somewhat of a professional wound care specialist and try to educate and help others whenever I can. I've been to many wound care clinics giving presentations to new ER nurses and long-term wound care clients looking to be more independent with their own care from home.

One day at a mall, I was standing in line to get a coffee when suddenly I felt a "pop" from my right leg. A few seconds later, my foot felt extremely warm. Looking down at my leg, I was shocked to see that my foot was now standing in a pool of blood. Stunned, confused and somewhat embarrassed, I started walking down the hall to try to reach an exit in order to hail a cab to go to the hospital.

I had no idea I was leaving a trail of blood as I walked, and a few pedestrians followed my every step. I eventually collapsed from the blood loss and woke up sitting on the floor with a kind man who had wrapped his shirt around my leg to prevent more blood loss.

This was probably one of the scariest moments in my life. I was surrounded by people who were helping me while I was sitting in a pool of blood and I didn't know a single person (still don't to this day). It amazes me when people say the world is a mean place, because I've found that there are kind individuals everywhere I look. It's all in the mentality on how you chose to live, which surrounds you with what you believe in.

To date, these conditions have changed my life drastically in ways most people can't fathom. We’ve also discovered after extensive tests that I was born with one kidney, my arterial system is extremely abnormal and I have an elongated bladder. Like most people suffering from these conditions, I am forced to take an assortment of medications to help with blood clots, inflammation and pain. I have to be very careful of the type of foods I eat to enhance my energy, healing and well-being. My life has become very specific to daily tasks and necessary precautions.

One day I hope to meet a specialist willing to take a little risk here and there. At this point, I'm open to any suggestions that could provide me with some form of possibility for a better life.

Nowadays my time is dedicated to helping others, gaining knowledge and connecting with like-minded individuals who are an inspiration to myself and all who know them.

Martin Lemieux is from Ontario, Canada. Martin dedicates his time to helping patients who cannot advocate for themselves. He is currently writing two books on health care, patient care and how to be your own healthcare ambassador. Martin can be reached on Twitter at @Martin_Lemieux.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Law Enforcement and Pain Patients

By John Burke, Guest Columnist

I first need to tell you that I spent 48 years in law enforcement and recently retired in 2015 after commanding a large enforcement initiative in southwestern Ohio. I have extensive experience in  prescription drug abuse as it pertains to law enforcement and have written a monthly article for the past 15 years in Pharmacy Times magazine on the topic of drug diversion.

I am the past national president of the National Association of Drug Diversion Investigators and current president of the International Health Facility Diversion Association. In short, I am no stranger to the issues surrounding the abuse and diversion of pharmaceuticals.

I am also a self-declared pain patient advocate who strongly believes that the vast majority of controlled substances that are consumed in the U.S. are taken by legitimate pain patients.  Pain patients have no real lobbying group that can apply pressure on politicians – who are often oblivious to the plight of pain patients as they scramble to get reelected!

In 1990, I was fortunate enough to be assigned to form and command the Cincinnati Police Department’s Pharmaceutical Diversion Unit (PDU). In the early 1970’s I had seen prescription drug abuse on the streets and knew that it was a much bigger problem than was being hailed by the news media. In starting PDU, I made a point to try and educate the media on the subject, and we were very successful in doing that as it was a brand new issue as far as they knew and they flocked to our press conferences.

JOHN BURKE

In addition to the arrests, we provided community education on prescription drug abuse, but sadly we said very little about a victim I got to know well -- the chronic pain patient. I can’t honestly say that pain patients entered my mind in those days, as we stayed focused on those illegally diverting pharmaceuticals. We also specialized on the diversion of medications inside healthcare facilities, a huge problem that exists still today.

We entered a time in the 1990’s when pain patients were deemed to be undertreated, new opioid medications were developed and marketed, and as we entered the 21st century, pain pill abuse started to skyrocket. Most of this century has seen a concentration on pharmaceutical diversion issues, with the spotlight on OxyContin until Purdue Pharma successfully marketed an abuse deterrent formulation in 2010. Since then, heroin has exploded onto the illicit drug scene, accelerating the overdose death rate as even the smallest of communities cry for help.

I saw a chronic pain patient up close and personal about 10 years ago. She was my mother-in-law and she came to live with my wife and I in our home. She had been a pain patient since elementary school. Her leg was permanently fused together and over the years she fought doctors who insisted that amputation was the best route to take for her welfare.

One day, her husband came to me and said that his wife was experiencing a particularly bad time with her pain relief and was moaning most of the night, unable to sleep. Since I had participated in dozens of continuing education programs with renowned pain specialists, I did know a little about pain management -- at least enough to ask if they had told her doctor so that her pain medication could be adjusted.

The answer was that she doesn’t take any pain medication due to the fact that her former doctor, several decades deceased, had told her never to take anything stronger than an aspirin or she would get addicted! I was shocked at this and advised him to go back to her current doctor and request some pain medication for a person who had suffered with daily pain for over 60 years at this point.

Her young physician told her that she was unable to prescribe a controlled substance, something that was blatantly false, but was nonetheless a reality for this almost lifetime pain patient. I then assisted them in finding a pain specialist and after one visit she was prescribed a pain patch and immediately started using something she should have had access to years before.

Her relief was incredible. Although not pain free by any means, she came crying to me that it was by far the most significant pain relief she had ever had in her life. No doubt it was, when aspirin was the only analgesic she was taking for chronic pain. This pain had flourished for decades due to the advice of a well-intentioned, but misinformed physician, who warned her about addiction issues when her pain was becoming unbearable.

I offer no apologies for the aggressive prosecutions of criminal doctors and those who prey on drug addicts by prescribing or dispensing controlled substances merely to line their pockets rather than to provide quality pain care. These people had no intention to provide pain relief to patients, and in the end did great damage to legitimate patients by giving the public the erroneous thought that virtually all people on pain meds are nothing more than addicts!

Every presentation I give, I make it a point to remind the audience that the vast majority of pain medications are prescribed by competent caring prescribers, dispensed by caring pharmacists, and end up in the hands of those who desperately need these drugs to perform every day functions we take for granted.

Right now there is incredible pressure by uninformed politicians to suggest some drastic changes in how opioids are prescribed and dispensed in this country. Law enforcement has plenty of good laws to go after the outliers vigorously, and I strongly urge we continue to do that, but with the full realization that the plight of pain patients’ needs to be protected in the meantime. Balance is important in most things in life and this issue is certainly no exception.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

It’s Time for Pain Patients to Speak Up

By Emily Ullrich, Columnist

By definition, journalists are ethically bound to present both sides of a story; to be unbiased, objective, fair and equal. Stories that are not labeled as opinion should leave it up to the consumer to determine the truth or which side of the controversy they agree with.

But since the media have become obsessed with the so-called opioid epidemic, these necessary fundamentals seem to not apply. We, as consumers of media, need to ask why they have fallen short on this topic.

The government is also supposed to consider all sides before making laws which will potentially be detrimental to the lives and health of its citizens. But the CDC only furthered the anti-opioid hysteria by not including chronic pain patients or the doctors who treat them in the initial drafting of its opioid prescribing guidelines.

In fact, the witch hunt has gotten so bad, that we have a bipartisan majority of U.S. senators who have organized to dictate the quality of medical care for the 100 million Americans who suffer from chronic pain. (see “Senators Seek to Silence Pain Patients”)

If senators from both parties came together to speak out for or against any other hot-button issue, like gun control or abortion, there would be absolute mayhem. But, not only do people not challenge the senators’ insensitive, unilateral, and fascist attack on pain patients, we sit quietly in fear.

These lawmakers propose that pain patients should not even be allowed to give their opinions regarding pain control when filling out hospital satisfaction surveys. Now our freedom of speech is under attack, too?

Elimination of pain patients’ rights has become the new American genocide. Patients and doctors alike sit in fear, watching as we are stripped of our right to happiness, our right to adequate medical care, and our ability to treat our pain in the ways we and our doctors see fit. When will enough be enough?

On top of the inequality, there are often discrepancies in the overdose and addiction claims of the CDC, government, and media. There are blatant attempts to hide the sources, research, and financial motives of those involved in the anti-opioid hysteria. There is a significant lack of research and evidence to support this drastic upheaval of our healthcare. Still, no one speaks.

There are so many things that obviously don't add up. No one is asking the right questions and no one is challenging this shady behavior. For some time now, I have been pointing out that the media and government both continuously lump pain patients and addicts together, call our pain medication “drugs,” and lump our meds together with heroin.

This is not accidental. By brainwashing the public to believe that all pain patients are drug addicts, and that pain medicine and heroin are one in the same, they have created an atmosphere of fear. No one wants to sound like they're pro-heroin. No one wants to be seen enabling addicts to get their fix.

There is a desperate need for more mental healthcare and addiction treatment in this country. Instead of addressing this need, the government and media (both funded by the pharmaceutical companies that make the medications deemed to be the “preferred” treatments over opioids) have diabolically created this carefully planned, malignant strategy to eliminate pain patients by making them addicts instead of pain patients. They will make more money by forcing us into rehab and putting us on drugs that will ensure that they keep making far more money than pain medicines ever would, all while making people believe that it's all for our own good.

Many of these “preferred” medications have not been around long enough to determine their long-term safety. They have side effect profiles a mile long and they will only keep us sick; thereby making us lifelong pharmaceutical consumers. Anti-opioid and addiction special interest groups stand to benefit from all of this.

The few times pain patients have been included in the discussion, they are immediately treated like criminals. Boston’s NPR station recently put the onus on a patient to defend herself with questions like, “How is a doctor to know the difference between someone who is addicted and someone with chronic pain that needs to be treated?”

Since when do patients have to defend the reality of their illness? When did being a patient become a defendant? And, if that is the case, what happened to innocent until proven guilty? What happened to doctors (not government and media) determining what is best for their patients?

It is an absolute outrage that our own government officials are dismantling our constitutional and human rights. Yet the stigmas of chronic pain and pain medication run so deep in this country that we keep quiet, knowing it's wrong, but afraid to be lynched for our insubordination.

Our disabilities often prevent us from having the physical fortitude to organize, march, and protest. They are counting on that. Our bodies may be weak, but our minds are strong. Our voices are ONE HUNDRED MILLION STRONG! We need to face our fears and SPEAK UP!

Emily Ullrich suffers from Complex Regional Pain Syndrome (CRPS/RSD), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, Endometriosis, chronic gastritis, Interstitial Cystitis, Migraines, Fibromyalgia, Osteoarthritis, Periodic Limb Movement Disorder, Restless Leg Syndrome, Myoclonic episodes, generalized anxiety disorder, insomnia, bursitis, depression, multiple chemical sensitivity, and Irritable Bowel Syndrome.

Emily is a writer, artist, filmmaker, and has even been an occasional stand-up comedian. She now focuses on patient advocacy for the Power of Pain Foundation, as she is able.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Let’s Talk About Sex, Baby — and Chronic Pain

By Crystal Lindell, Columnist

The thing that nobody tells you about Cymbalta is that it takes a machine gun to your sex drive. Seriously. When I was on it, I was so repulsed by sex that I started to think maybe I was legitimately asexual. 

I mean, when the doctor hands you the prescription, it would be nice if they threw in something like, “BTW, you’re never going to want to make passionate love while you’re on this medicine.”

But of course, doctors never tell you stuff like that. And God forbid they give you a handout of some sort that maybe mentions it. No, they just leave you to Google “asexual” at 1 a.m. on a Tuesday night when you realize you’re identifying a little too much with Sheldon on the Big Bang Theory.

Don’t get me wrong, I have definitely been in such tragic levels of pain, that if someone had asked me if I wanted to give up sex so I could feel better, I wouldn’t have even thought twice about cutting off my own vagina and handing it over. 

But the thing is nobody asked me. They didn’t tell me I might have to make that sacrifice when they put me on Cymbalta. So I didn’t even know it was happening. And that’s when you get to some pretty dark places. 

Thankfully, I’ve since gone off Cymbalta, and my sex drive came back like a freight train. 

But that doesn’t mean there aren’t other issues related to sex and chronic pain.

Like when you have stabbing rib pain on your right side, so you can only tolerate sports bras, and then he goes to unhook the back, and it kills the mood because there is no hook in the back of a sports bra. And he’s mad that you’re dressed like someone planning to run a 5K, and then you’re mad that he’s mad that you’re dressed like someone planning to run a 5K, and so you just leave.

Or when he wants to cuddle, and you have to explain that, “Sorry, I can’t lay on my right side because when I do it feels like someone is jack hammering into my bones through the mattress. Hope that’s not a deal breaker!”

Not to mention the fact that when you’re in physical pain, the last thing you feel is sexy. And you most certainly don’t feel like having anyone touch you ever. 

First, there’s just the literal pain that can come from someone passionately throwing you against the wall, or even a pillow top mattress for that matter. When you feel like you always have a broken rib, even passionate love making can make you wince. 

Then, there’s the fact that the pain probably keeps you from showering as often as most Americans believe is normal, which means you probably smell, which means you’re probably not feeling very romantic. 

And of course, there’s the side effects from the medications, which make you gain weight, sleep all day, and zone out in front of YouTube videos about makeup while you simultaneously lose the ability to actually wear makeup. 

Not to mention the fact that it’s just really hard to make love to someone, while you yell things like, “OH GOD! OH GOD! OH GOD!  IF YOU TOUCH MY RIGHT SIDE AGAIN I’M GOING TO STAB YOU TO DEATH!’ or “YES! YES! YES! I NEED YOU TO AVOID MY CHEST AREA AT ALL COSTS!”

That’s the kind of stuff that can turn an evening of “Netflix and Chill” into an evening where you actually watch Netflix and chill. 

But even with so many things working against the sex lives of those with chronic pain, that doesn’t mean people should give up. 

For one, that old saying about how, “You can have great sex without having a great relationship, but you can’t have a great relationship without great sex,” is actually pretty true in my experience. Having sex is an important part of being a healthy couple. Of course, that doesn’t mean partners shouldn’t be understanding of the situation, and our pain levels. What it does mean is that avoiding sex, regardless of how legitimate the reasons for doing so are, will likely put a strain on your love life. 

Also, sex is just a good thing to have in general. It helps your mood, it can be a great pain reliever and stress reducer. And, you know, it’s fun.

So I don’t think patients should just resign themselves to the idea that having chronic pain means giving up good sex for the rest of their lives.

Unfortunately, I don’t have magical solutions to offer people with chronic pain struggling to work sex back into their daily life. But there are a couple things you can at least try.

Frist, there’s always the obvious “talk to your doctor” advice. Yes, I know that conversation can be awkward — both for the patient and the physician. If you’re up for the conversation though, I definitely recommend it. Your doctor might be able to recommend other medications that don’t kill your sex drive, some less painful positions or other techniques to help you out.

In the end though, I honestly think the best thing you can do is be open about the issues without whomever you’re making love to. Just like with anything, talking about what’s going on usually does the most good.

And if you both decide that maybe you can try to get a wire-free bra with a hook in that back because that’s what he’s into, as long as he promises to never touch your right boob, then great! Or, if you decide that having sex just isn’t worth the pain, then that’s great too.

After all, there’s always Better-than-Sex cake in a pinch.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Spreading Awareness and Hoping for a Cure

By Sarah Daniels, Guest Columnist

When I was 25 I decided to reclaim my life. I left an abusive relationship and worked very hard on my physical and mental health. With diet and exercise, I went from 240 pounds to 180 pounds in about 5 months.

I thought losing weight would make me feel better, but as soon as I dropped weight I began to have debilitating pain. It got so bad I could no longer walk. Not only was it painful, I literally couldn’t move my leg. There were days I couldn’t get out of bed.

Most of the pain was in my hips; radiating down my legs into my feet. My doctor had no idea what to make of this so she sent me to a specialist. I waited months for the referral. Finally, my prayers would be answered. The specialist would be able to help me!

Instead they laughed and told me I should join the circus because I was so flexible. I am double jointed in every part of my body. I should have known then that this was just the beginning and it was going to be a long ride.

Four doctors, two physical therapists, and $8,000 worth of useless therapies later, I finally found a specialist who diagnosed me with Congenital Hip Dysplasia. They told me I had a torn labrum, severe tendonitis of the hip, and a shallow socket that permitted my hips to dislocate with even the slightest movement. In order to “fix” me they would do a surgery called a peri-acetabular osteotomy (PAO).

SARAH DANIELS

At the time, this surgeon was one of only two in the U.S. that performed PAOs. It was fairly new but had promising results. It had been three years since the onset of my symptoms, so I was desperate.

An incision was made into the skin, through the muscle, through the nerve, and into the bone. The pelvic bone was then cut in four spots, making it freely mobile and the head of the femur bone was reshaped. Lastly, the pelvic bone was tilted forward, and the femur is fit into the head of the joint. Three huge screws held everything together.

A PAO is one of the biggest major orthopedic surgeries in existence. The recovery was supposed to be 3 months and then I would have my right side done.

It took about 3 months for me to even move my leg on my own. It took 6 months to learn to walk again. Finally, after a year of recovery, I would continue on with my new normal: constant pain.

I had complication after complication from my hip surgery. Two years went by as I told my doctors I was continuing to have excruciating pain. They ignored me and told me it would go away.

I ended up going to a chiropractor when I herniated a disc in my back. After he took the x-rays he came racing into the room. Did I know my pelvic bone was broken in three different spots?

My bones had broken around each of the screws that were holding my hip together. No wonder I was in hideous pain.

I had surgeries to remove the screws, but my health continued to deteriorate. Emergency room visits became a usual thing for me. All of my joints began to fail.

Some days I have to use a wheelchair to get around because the multiple dislocations in my knees, hips, shoulders, and wrists prevent me from using a cane or even crutches.

I finally went to a geneticist and was diagnosed with Ehlers Danlos Syndrome (EDS). It is a group of hereditable connective tissue disorders with a mutation in the collagen, the glue that holds your body together. Symptoms range from easily bruised skin, broken bones and torn ligaments to digestive disorders and life threatening cardiac issues.

This diagnosis was my saving grace. It finally connected everything. On the same token, being diagnosed with an incurable chronic illness is an entire grieving process in its own. It is important to be responsible about recognizing signs and symptoms, but you also can’t let it consume you. You have to stay positive even though there is no end at the light of the tunnel. I began to find different ways of dealing with the pain, deep breathing, meditation, and listening to music. It was tough but I was getting by.

Then another problem developed. I was constantly sick to my stomach and couldn't keep anything down. I spent most of my days throwing up and didn’t know why. I lost 70 pounds. No longer was I only dealing with pain, I had no energy or nutrients to keep me going. I went to a gastrointestinal specialist, who diagnosed me with Gastroparesis.

Ordinarily, muscles propel food through your digestive tract but with Gastroparesis, your stomach's motility works poorly or not at all.  My digestive tract was almost 100% paralyzed. I had to do something or a feeding tube would be in my near future. I had always been overweight my whole life and never thought for a second, I would literally be starving to death.

On top of everything my illnesses had already taken from me, they was now taking my body. I stopped getting my period and couldn’t stop the weight from coming off. I went from a size 12 to a size 0 in a matter of months. Friends would tell me I was lucky I was thin. Lucky? I feared for my life!

I spent most of my days with my head in the toilet, praying I wouldn’t aspirate and die. When I was too weak to sit up on my own, my boyfriend would sit with me, watching to make sure I was safe. I would give anything to be able to eat again, to be able to look in the mirror and see my vivacious frame, instead of the sunken skeletal figure that was there now, but this is a distant reality for me.

Like Ehlers Danlos Syndrome, there is no cure for Gastroparesis. With medication, a new eating plan, and a daily shot to the stomach, I have been able to get somewhat of a handle on my illness.  

In the beginning of this story I was a happy, healthy, outspoken young woman with a great job, and the world on my shoulders. I had infinite possibilities ahead of me. I am writing to you now as a 29-year-old female with the body of an 80-year old.

I completely exhausted my savings due to my numerous surgeries, office visits, and medications. I had to quit my dream job that I loved. I am no longer able to work and had to file for disability at the age of 28.

I was let go from my most recent job after two years because they thought I needed to "focus on my health." I tried to keep my job for as long as I could. It was the last thing that kept me connected to the normal world. They provided my full dental health and vision insurance, which is obviously essential to my life. I’m now stuck with an almost $600 monthly Cobra insurance bill with no idea how to pay it.

I have thousands of dollars of medical debt, I am months behind on my rent and utilities, and at the time of writing, I have no groceries or gas. My illness has taken everything from me. My body, money, job, my positive outlook, independence, and friendships!

I am lucky to have a family that loves me. I have been blessed with an amazing boyfriend that does everything in the world for me, whom I love insurmountably. But even they are overwhelmed. Loving someone with a chronic illness is not always easy and definitely not always fair.

I’m writing this not to get sympathy. Sympathy won't help me. It won't cure me or make me better. I write to you because I want people to know that this horrible illness exists.

About 1 in 5,000 people are affected by Ehlers-Danlos Syndrome and the varying comorbidities associated with it. I want people to know that there are hundreds of thousands of our fellow human beings that are suffering from this rare illness.

Most doctors think if you have EDS it just means you are flexible. I have even had doctors tell me I should join the circus. If I have to, I will single handedly wipe out all of the ignorance surrounding Ehlers-Danlos Syndrome. It has now become my goal to create and spread awareness.

I don't spend a lot of time these days wishing for my old life back. It only depresses me. However, I do take time to think about the future. With medical technology advancing every day, and with the help of others, there is no reason we should not be able to find a cure!

I know this has been a long story to read. It hasn't been the happiest story or the most positive story, but it is my story. I will do whatever it takes to spread awareness. I only ask that you can join me in fighting for this cause!

Sarah Daniels lives in the Detroit, Michigan area. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Sarah would also like you to know that that February 29 marks Rare Disease Day, which seeks to raise awareness about rare diseases such as EDS.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Patients Betrayed in Pain Management Debate

By Pat Akerberg, Columnist

I’ve often wondered whether the term “pain management” qualifies as an oxymoron.  It’s no secret that the use of opiates for management of chronic pain is a treatment strategy currently under siege – sparking polarizing debate, government intervention, and pushback by legitimate pain patients.

This is my 7th year of dealing with the intractable pain of trigeminal neuralgia (TN) in spite of many failed pain management attempts.  While interacting with hundreds of my counterparts, pleas are constant for alternative ways to effectively treat this notoriously painful disorder. 

Not one of them relishes the potential of being dependent on any medications that they take to manage pain and rightly fear the long-term negative effects that some medications have on our bodies. 

Others whose pain is tamped down to some extent with opiate medication are placed in an untenable Catch-22. They are surrounded by volatile uncertainty and shameful character judgments.

When leading neurological experts and research scientists I saw also shared their own frustrations about the lack of alternatives to or efficacy of most pain medications, my concern heightened.

Will I be left to needlessly suffer indefinitely while this controversy stalls solutions?

From my vantage point the pain management issue seems to involve at least four different issues:

1. Some abuse of opiates

2. Reactionary guidelines that further limit or curtail availability to legitimate patients

3. Multiple competing agendas thwarting progressive strides for pain management alternatives

4. Ethical imbalance placing profits, careers, and CYA (cover your ass) strategies over patient care

Unfortunately the current proposed CDC and FDA backed prescribing guidelines are an ill fated attempt to solve the first problem of opiate abuse (by some) by worsening a second problem for many legitimate patients already living severely hampered lives. This one-size-fits-all, closed regulatory approach upsets me (even though I’m not taking an opiate) because it excludes the input of those afflicted and prolongs suffering, adding more stressful setbacks to pain relief.

Ironically, the very agencies deemed to protect us from harm seem to be intent on a stance that inflicts it in varied ways.

Until we have acceptable options to abate pain (that don’t triangulate pain patients with their doctors/the medical system and the government) or put us at risk; we’ve been involuntarily forced into some part of this fight. 

This issue has been turned into such an embattled political conflict that even patient advocacy groups (with something of their own to protect) seem to be sitting on the sidelines avoiding the crossfire. Patients have become sitting ducks while others who share a stake in the chronic pain pandemic still gain by our plight. 

The third problem is about the forces that work against new research, medical institutions and companies stepping up the pace and availability of affordable new pain treatment alternatives. 

Haven’t they positioned themselves as stakeholders with missions to cure or improve the impact of diseases, disorders, and health threats that result in chronic pain and other debilitating effects?

One of the many forces in play is that rare diseases (known as orphan diseases/disorders) don’t impact enough people to make it financially appealing for drug companies to come up with targeted, affordable medications or institutions to fund research. 

As the lusty price-hiking grab of Big Pharma continues, insurance companies will keep upping their premiums and deductibles to protect their profit objectives.  While for us affordability is our burden.

Yes, the fourth problem is all about return on investment and profits weighted against some deemed acceptable number of us who will die sooner or suffer longer while living.

If you suffer from an orphan disease (like TN) you’re likely taking some off-label medication that wasn’t intended to even address your issue.

The National Institute of Health could overcome that lag to progress by applying its’ considerable leverage. It could require that research grants be granted based on collaborative initiatives, findings be openly shared across science/medical institutions, and research dollars pooled, so that discoveries and treatment innovations are accelerated for a win-win.

Why isn’t any of that happening now?  Political power and financial collusions, along with competition among stakeholders, are the short answers.  There’s no political, financial, academic, career, or ethically motivated profit incentive for open, unbiased collaboration to occur. 

As long as our disease centered (versus patient-centered), profit over patientmodel continues, collaboration is a direct threat to all special interests since they currently measure the success of their stake in advancing medical health by their own bottom lines, career progressions, and investor return.  

Until they can otherwise be held accountable to exemplary medical and just ethical standards, there’s no incentive to coalesce and dedicate their collective resources to resolving the pain management needs of millions of pain sufferers.   

It’s the medical/scientific version of our political underbelly, with pain patients involuntarily caught in its’ snare while progress sputters. The result is that effective pain management has been hijacked and diminished medically into a political football playing brinksmanship with the quality of our lives.

There’s so much wrong with how the whole “pain management” situation is evolving for us.  The real blow in all of this for me is the realization that pain patients seem to be left with no representation or clout.

Without representation, I’m concerned that while we’re the ones least able to deal with it; we’ll be left holding the bag to gain more attention, commitment, and reform for real pain management answers.   

I worry about precious time toward new alternatives wasted while the powerful lobby agendas, the government over reaches, our representation retreats, the AMA debates, and the profitable jockey to vindicate their approach.

Until then, it’s hard not to feel betrayed by the downward spiral in societal values, a slippery slope of collusion allowed to operate among some interests convincingly indifferent towards human suffering.

I really want to be proven wrong about pain management becoming an oxymoron.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.