Signing a Pain Contract in the Age of Opioid Phobia

By Crystal Lindell, Columnist

I know, I know. Opioids seem to be all that pain patients talk about these days. Blah, blah, blah. We get it, you need drugs. Let’s move on already.

But I don’t have that luxury. Opioids are, for better and for (mostly) worse, a huge part of my life. And I recently decided that I was:

A. Going to need to continue taking at least a small dose of hydrocodone long-term

B. That I really needed a slighter larger, “small dose” to be able to function.

I have what’s called intercostal neuralgia on my right side and the best way I can think to describe it is that I always feel like I have three broken ribs. The pain is no joke. And although it seems to be more manageable these days, it lingers and it hurts like hell, and opioids are the only thing I have found that even kind of helps.

Without hydrocodone I am in too much pain to shower regularly, check email, do my makeup or even sit a restaurant and eat.  With hydrocodone I can pretty much do all those things, like a typical health person who’s just a bit high. 

And yes, I know they are addictive, I know how hard they are to get off of, and I know that withdrawal is hell. I’ve been through it. I took myself down to 5 mg a day from 60 mg day when my pain became more manageable. It wasn’t easy. It took about a year for my brain to deal with that, and the withdrawal issues sucked.

So, when I say I need to be on hydrocodone, I say it with all the wisdom and caution that comes from the personal experience of dealing with opioids — and their side effects. 

And honestly, I’m among the lucky ones. When I called my doctor to ask if I could up to 10 mg a day, he agreed and knew I wouldn’t be asking if I hadn’t given lots of thought to the pros and cons of that choice. 

But that doesn’t mean dealing with opioids doesn’t also suck. 

First, I had to drive two hours each way to see him, because that’s how far away the closest university hospital is to my house and my case is too complex for the local small town doctors. And, as a reminder, I live my daily life feeling like I have three broken ribs. Driving two hours each way sucks. 

Then, when I got there, I had to take a drug test. Some politician somewhere decided people on opioids shouldn’t be using pot. Okay. But peeing in a cup sucks when you’re a woman. It gets all over your hands. You miss the cup and don’t collect enough. It’s just messy. 

But fine. Whatever. 

I peed in a cup. Good news. I’m clean. Well, I mean, aside from the hydrocodone, I’m clean. 

Signing a Pain Contract

Then, I had to sign what is formally called the “Controlled Substances Medication Agreement” — basically an opioid pain contract. At first blush it doesn’t seem like a big deal. As long as I’m a good person, there shouldn’t be any issues, right?

But the thing is literally 21 bullet points long. And it feels like I signed away all of my rights. 

The contract includes things like bullet point number 8, which requires that I get my prescription filled at the same pharmacy every month.

This is annoying because I use my local small town pharmacy, which is closed on Sundays, holidays and every night at 7 p.m. And if I’m due for a refill on a Sunday or out of town for work when my prescription expires, I can’t get it filled early, as bullet point number 14 clearly explains. 

Bullet point 14 also says I have to keep all my drugs in a locked cabinet or safe, and if they’re ever stolen I can’t get an early refill. Guys, that’s just not practical. I take these meds as needed, and sometimes that means I’m at the grocery store or visiting a friend or eating at Taco Bell, and then suddenly they are needed. And at those times, they are in my purse, which doesn’t have a lock on it. 

Bullet point number 11 says I can’t go to the emergency room for opioids, which sucks because sometimes my pain spikes and the only thing that gets it under control is a shot of dilaudid, which I usually get at the ER. I guess now when my pain spikes, I’m supposed to drive two hours to my doctor and hope he’s available to deal with it. 

Oh, and if I’m ever too sick to make that drive, nobody is allowed to pick up my hydrocodone prescription unless I have pre-authorized them, as per bullet point number 13. Of course, it has to be a written prescription — doctors cannot legally call in or fax hydrocodone  prescriptions anymore. 

I also agreed to get random drug tests, allow pill counts. and basically just give up all of my dignity. 

Fine. Okay. I need these medications. So I signed on the dotted line. And I guess I just have to hope I never get robbed, have a flare up or need a refill on a Sunday. 

The thing about opioids is that everyone assumes that if they ever need these drugs they will be able to get them. That anyone who’s truly deserving doesn’t have anything to worry about. But I have to tell you something: I’m a good person. I’m in real pain. I need these drugs. And I’m barely able to get them.

I understand how powerful these drugs are. Going off morphine was literally hell for me. But you know what else is hell? Living every day of your life feeling like you have three broken ribs. 

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.

Stay Engaged Socially If You Are Chronically Ill

By Barby Ingle, Columnist  

It is so important to stay active with your social life when you are living with chronic pain or a disabling chronic condition. It is so easy to isolate ourselves, which can lead to an increase in anxiety, depression and frustration.

Work at not isolating yourself from friends and family. Here are a few ideas that my husband/caregiver and I use:

For Patients:

• If prayer is helpful, keep doing it
• Keep exercising (or start)
• Look for support wherever you can find it
• Maintain a healthy lifestyle
• Socialize as much as possible
• Take in good nutrition
• Remember your caregivers are going through similar challenges

For Caregivers:

• If a patient is grouchy or depressed, don’t see it as an attack on you but as a reflection of their pain
• Learn as much as you can about the patient’s condition and the available medical options
• Remember the patient is not doing this on purpose and is going through many challenges
• Try not to take a patient’s anti-social behavior personally
• Try to avoid being either too babying or too harsh toward a patient
• A patient may feel less guilty if the burden does not always fall only on you. Try to find others to help with their care.

For Both of You:

• Discuss options with a loved one when they are ready to talk about them.
• Join or form a support group. This may be other family members or friends. This will allow you to take a break.

I believe that human connection is so important. When we connect with others and when we have support, we cope better, our pain levels don’t flair as often, and many other health benefits kick in.

We are meant to interact and be a part of society.

I have worked with many chronic pain patients over the years who isolated themselves. Either they or their caregiver came to me asking, “How do I get past this depression?” or “How do I get past all I have lost?”

One woman, who became a good friend over the last 10 years, was injured in her early years of life. She didn’t realize she was isolating herself and that she had stopped maturing psychologically or connecting with others.

Slowly and over time, she changed her patterns of social interaction, concentrated on her feelings, and practiced better daily living (posture, nutrition, stopped smoking). I encouraged her and her caregivers to be more social and pay more attention their feelings. She is now a social butterfly, both online and offline! 

I am also aware that social media or negative online support groups can be very draining when you don’t put up limitations and pay attention to your energy levels.

Find a good balance in life whether you are the patient or their caregiver. Remember you too can have a more meaningful social life that can make a difference for you and everyone around you. 

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. 

CDC Opioid Guidelines Are Not Rules or Laws

By Mark Helfand, DDS, Guest Columnist

I am a 62 year old dentist who had to retire 20 years ago due to Chronic Regional Pain Syndrome (CRPS). It started in my right forearm and has spread to all four extremities. Recently it has spread into my shoulders, fingers, knees and thighs.

I have seen numerous pain doctors over the years (that's another story) and have finally found a compassionate, intelligent doctor. He has the knowledge and conviction to be a physician and to treat me properly.

I feel sorry for all the other patients suffering as I do, who are being treated by people with medical degrees that are too stupid or too scared to treat their patients as they swore to do when they graduated from medical school.

Have they forgotten the Hippocratic Oath to do no harm?

The CDC opioid prescribing guidelines are just that -- guidelines -- NOT rules or laws. As a matter of fact, here is a quote directly from the guidelines:

MARK HELFAND

“The recommendations in the guideline are voluntary, rather than prescriptive standards. They are based on emerging evidence, including observational studies or randomized clinical trials with notable limitations. Clinicians should consider the circumstances and unique needs of each patient when providing care."

The so-called "doctors" (and I use the term loosely) that say they cannot prescribe narcotics anymore or cannot prescribe the same dosage, either cannot read, don't care or aren't knowledgeable enough to know what they are doing.

I have had all the past and current mainstream treatments, except hyperbaric oxygen therapy and intravenous ketamine. I have tried and been prescribed most NSAIDs and narcotics.

I am currently taking fentanyl lozenges every three hours as needed and an experimental cream with ketamine that my pharmacist read about in one of his journals.

He sent the paper to me, I brought it to my doctor, we discussed the pros and cons, and my doctor prescribed it for me.

It is helping, but I am not even close to being pain free. However, I am not "stoned" on drugs. If I was, I couldn't write this letter.

I have some semblance of a life and when the pain gets unbearable, I have the ketamine cream and can take the medication I need without having to beg some non-caring doctor in an emergency room. I have been through that and refuse to go through it again.

I genuinely feel sorry for all the chronic pain patients that haven't been as "lucky" as I am. I am cursed with this horrible, excruciatingly painful condition 24/7, but am blessed by a few angels (my pharmacist, my doctor, my niece, and 3 or 4 lay people) that help me live whatever life I have.

I hope this inspires others in my condition to search for their angels.

Dr. Mark Helfand lives in New York.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

We Need a Declaration of War Against Chronic Pain

By Carol Levy, Columnist

When my neuro-ophthalmologist wrote to a surgeon asking him to evaluate me for trigeminal neuralgia surgery he said, “She is being victimized by her pain.”

After I had undergone a number of neurosurgical procedures and treatments, one of the neurosurgeons wrote back, “We have used every weapon in our armamentarium.”

Many in the pain community use the terms “pain survivor” and “pain warrior.”

Looking at pain in the context of war is easy.  In times of war, the enemy is defined as “something harmful or deadly.”  Pain is certainly harmful.  And some patients die from their pain, some naturally and some, sadly, by their own hand.

The government declares a “war” on opioid abuse. But instead of fighting the abusers, illegal sales, pill mills, criminal cabals, unscrupulous doctors and patients who act criminally, they carpet bomb and ignore the innocent casualties.

The result emboldens the enemy (pain), and winds up costing innocent patients, doctors, insurance companies and ultimately the rest of the country.

It is a proven threat in other ways as well. People living with chronic pain who are employed use more sick days then those without pain. Those whose pain is untreated or undertreated may become disabled and leave the work force altogether. The cost of lost productivity alone is estimated at up to $335 billion a year.

Add in the cost of healthcare and the total economic cost of chronic pain is estimated at $635 billion annually, more than the yearly costs for cancer, heart disease and diabetes.

The government has declared war on those diseases. But for some reason chronic pain and its costs are ignored or denied.

War is a competition between opposing forces. Instead of pain patients and the government working together to appease the scourge of chronic pain, we have chosen sides. One side just wants the pain to go away. The other side cares more about fighting the “opioid epidemic.” The only weapon we have is our voice.

The U.S. Senate repeatedly refused to pass the National Pain Care Policy Act, despite the House passing it in 4 separate sessions, starting in 2005.

Republican congressional leaders now want to replace the Affordable Care Act (Obamacare), which would include the repeal of Section 4305, which calls for more research, education and training in pain care. Another battle being lost by the pain community.

Our goals may be different. As a patient, we want the pain to end. As a country we want the soaring cost of care to end. If we can just find a way to end the pain, we will reduce, and maybe even end, the cost to the country.

It will take more than a detente between the government and pain patients. It requires an alliance – with active involvement on both sides.

War is hell. So too is chronic pain. It is time the battle was joined. By country and by patient.

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.

Waiting for My Pain Medication to Be Stripped Away

By Sheryl Donnell, Guest Columnist

Up until recently, I thought I was coming through this opioid crisis unscathed. My pain management doctor has been with a top clinic for many years and is highly respected and generally above reproach.

We did not have that dreaded conversation virtually everyone else with chronic pain I know has had -- until September 13th, 2016.

That night, I fell and broke 5 bones in my foot, which was already affected with Chronic Regional Pain Syndrome (CRPS). The pain was so incredibly severe.

I laid on the floor from 2 am to 10 am before I could stay alert enough, and not pass out from shock and pain, to get to a phone to call my husband upstairs for help (he is deaf in one ear). It took 4 paramedics to get me off the floor and into an ambulance.

Once at the hospital, even though I was writhing in agony and still passing out literally from pain, the doctor never examined me or my foot. She didn't care I had been on an ice cold floor for 6 hours. All she heard was "chronic pain patient" and she was done with me.

SHERYL DONNELL

I begged her to call the pain experts my doctor worked with so she could get some guidelines for treating me, but she didn't see a reason. I asked if she was familiar with CRPS, and she proudly said no and it didn't matter. She sent me for x-rays. No sooner did I get back in my room from another horrifyingly painful experience did she announce nothing was broken and to go home.

I sat there stunned. I had heard the bones break. I knew there were fractures. I begged the nurses to do something. I had not even been given a single Tylenol. This doctor firmly believed I was a drug seeker and wanted to bounce me.

The nurse started reading my discharge papers, which said, "Come back if you have any of these symptoms." I started crying harder. I said I have every one of those right now! She was practically in tears herself.

Then my husband asked, “What will he do when we get home? We can't even get her into the house!” The nurse told him to call the paramedics again to help get me back inside my home, which we did.

My husband called in 24-hour care workers to help me so I could manage a bit. It was agony going to the bathroom, even with a bedside commode my mother brought.

The following morning, the paramedics came back and helped me into the car. We went downtown for a pain injection to try to stop a progression of my CRPS. While there I insisted on new x-rays, which my pain doctor of 9 years grudgingly agreed to -- mostly to shut me up. He said come back in a week for another shot.

I asked for an increase in my pain medication. My biggest shock that day was his response. He said there was no reason for an increase! What? We went home to 24-hour care and instructions to start weight bearing exercises asap!

A full week later with not a single call, we returned to my pain management doctor for my second injection. He casually mentioned the results of my x-rays, which showed that I had 5 broken bones in my foot. No call for an entire week. I was left to think I was nuts and was trying to bear weight on a severely fractured foot!

I was not offered, nor were my requests for additional pain medication granted. I was told to come in every week for four more weeks (in great agony and great difficulty) for pain injections which did very little. However, I did not have a spread of my CRPS.

I did lose about 8 weeks of my life again. My pain levels were so extreme I did nothing but sit in my recliner and do a lot of crying. And realize how lucky I was to have family support, the ability to pay for 24-hour caregivers, and to be believed I was in the kind of pain I said I was in. My adult daughter moved home for a month to help me and my husband with caregiving duties.

What do other people do?

Even after my 6 weeks of pain injections, when I requested a short term increase in pain medication to help me rehab my still very painful foot once I was cleared by my orthopedist, I was again turned down by my pain management doctor.

It is now 5 months after I broke my foot and I cannot complete my rehabilitation because my pain is still so intense. I know if this had happened 5 years ago, I would not be suffering like this.

Even though my pain has worsened and I need to rehabilitate my injury, the CDC has arbitrarily changed the rules and I must suffer. My doctor's hands are tied.

I lose more and more days spent doing things I enjoy or need to do because the CDC’s “experts” sat in a room and made decisions based on flawed data and street drugs; not real patients who follow the rules of their pain contracts and don't seek out multiple doctors or illegal methods to get medication. I follow all the rules, just like 99.5% of my peers.

We are suffering and living in fear that we will be next to have our medication stripped away from us, through no fault of our own. And then the real terror begins.

Sheryl Donnell lives in Illinois. She suffers from CRPS and fibromyalgia.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

An Epidemic of Fake Opioid News

By Roger Chriss, Guest Columnist

The New England Journal of Medicine recently published a study called “Opioid-Prescribing Patterns of Emergency Physicians and Risk of Long-Term Use.” It looked retrospectively at Medicare patients and found that some emergency room physicians prescribed up to three times more opioids than others did.

The article did not even mention words such as “abuse” or “addiction” in any context. Moreover, the data was for the period between 2008 and 2011, long before the 2016 CDC opioid guidelines or the various efforts by the FDA, DEA and state governments to restrict opioid prescribing.

The result of this study has been a surprising explosion of fake news about the opioid crisis. It is almost ironic that the spread of this news looks more like an epidemic than the actual opioid crisis does.

The New York Times published the article "Long-Term Opioid Use Could Depend on the Doctor Who First Prescribed It” on February 15, marking the first step in the outbreak of this new opioid meme.

The article noted that the study looked at elderly people in the opening paragraph, but did not mention the decline in opioid prescribing between the study period and the present.

Moreover, the article stated that "as the opioid epidemic continues to devastate communities around the country, the study was the latest attempt to identify a starting point on the path to excessive use.” This was stated despite the fact that all the study showed is that people who take opioids are more likely to become dependent or addicted to them. Clearly this result is both axiomatic and not a priori interesting.

A day later there were more articles, such as “Physicians’ opioid prescribing patterns linked to patients’ risk for long-term drug use” from the Harvard School of Public Health and “How Long You Stay On Opioids May Depend On The Doctor You See In the E.R.” from the Kaiser Family Foundation.  

Both articles add more drama to the study’s results, though each does mention that the study was done on Medicare patients. Oddly, the Harvard article waited until almost the very end to tell us that, as if this is an incidental point with respect to the study and its results.

On February 16, the fake news took a turn toward the dramatic and dire. The Chicago Tribune came up with an article called "Your ER doctor could determine your likelihood of long-term opioid use."  We are told that "physicians are often reluctant to change treatment regimens when patients are happy with what they have,” as an explanation for why doctors were resisting not prescribing opioids.

Vox took the fake news to a whole new level with an article called "Certain doctors are more likely to create opioid addicts. Understanding why is key to solving the crisis."  The Vox reporter provides a quote from the lead author of the study:

“'For patients, Barnett said the message is clear: “Patients should ask their physicians, ‘What are the side effects of me taking this opioid and do you think my pain could be treated effectively [another way], because I know how dangerous these medicines can be."

Opioids have now become dangerous medications.

Now imagine that the first headline from The New York Times had said “Medicare Patients Receive Different Amounts of Pain Medication depending on ER Physician.” That would be a fair a description of what was reported in the original NEJM article.

And consider this alternate interpretation of The Chicago Tribune quote about happy patients: These patients are elderly, at low-risk of addiction, and being treated successfully with a well-known medication. This is not something to worry about, especially since the opioid crisis is being driven by illicit substances used primarily by younger people and outside of medical settings.

Forgotten in all of this reporting is the data from the CDC and other government agencies, which clearly shows that opioid prescribing is down considerably compared to just a few years ago, while at the same time the number of overdoses and deaths involving opioids used illicitly has risen.

The data also shows that most people who abuse opioids are young, not elderly. In other words, physician prescribing is not a major driver in the opioid crisis and Medicare patients are not representative of substance abusers at all.

In a matter of days, an article in a respected medical journal describing a retrospective study of the Medicare population has morphed into some doctors being more likely than others to create opioid addicts and unlucky patients are getting hooked.

This is an epidemic spread of fake news, of a dangerous meme, and of a new challenge for chronic and intractable pain patients. Accurate information is the best defense, but that takes work.

Roger Chriss suffers from Ehlers Danlos syndrome. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The 411 on Calmare Scrambler Therapy

By Michael Cooney, DC, Guest Columnist

As a chiropractor who treats various pain conditions caused by injury or disease, my biggest frustration is when our therapies do not achieve a successful patient outcome.

Often, “treatment-resistant” patients are forced to seek out more invasive procedures – surgeries, spinal cord stimulators, or powerful narcotics such as ketamine − where success has been uneven, but side effects can be significant.

I wasn’t comfortable recommending these “next level” neuropathic pain treatments for my patients. So my partner Dr. Robert Kelly and I spent two years looking for a non-invasive therapy that didn’t cause pain or come with added side effects.

Through a contact in Italy, we discovered Calmare scrambler therapy, which treats several types of drug and treatment-resistant pain, a big plus for our practice. After undergoing clinical training to use the machine and eventually testing it on patients, we saw results after just a few treatment sessions, in the majority of cases.

I’ll be honest, our aim in adding Calmare to our treatment offerings was designed to help our patients who were not responding to traditional pain therapies. No one was more surprised than I to experience the global interest in this alternative treatment option.

We have been performing Calmare Therapy since 2011, treating patients from coast-to-coast and as far away as Australia, the UK, South Africa and Brazil.

Today, we treat children, adults and seniors battling CRPS/RSD, fibromyalgia, neuropathy after chemotherapy treatment, and pain that develops after surgery or from diabetes. We have also treated many people with neuropathic pain after a shingles diagnosis.

How Scrambler Therapy “Talks” With the Brain

The brain’s reaction to pain can be compared to learning to play the piano or memorizing a poem. The more the body processes pain, the stronger the connections between pain nerves and the brain become.

When someone is injured, the brain sets up a process to heal the injury. For example, cells carry away dead tissue or it increases blood flow to the injured area. Eventually, the brain realizes the injury has healed, and cuts off the pain message.

But for some people, the brain never sends the all-important message: “There’s no more injury here. You can stop sending that pain signal.”

That’s where Calmare scrambler therapy comes in.

Using small electrodes (think EKG pads) judiciously placed in the region of the injury, the device sends a mild electric signal to the brain through the electrodes.

This message overrides the brain’s confused pain signal and corrects it to a “there’s no pain here” message.

We recommend a series of 10 daily scrambler treatments. But in many cases, the pain is lessened for the patient as soon as the first treatment.

The machine we use, the MC-5A Calmare device, has been tested in clinical trials at some of the most prestigious research institutions, including the Massey Cancer Institute at Virginia Commonwealth University, the Mayo Clinic, and the American Society of Clinical Oncology. Their studies reported significant reductions in pain associated with cancer treatment and other chronic pain conditions.

The Value of Alternative Medicine in Treating Neuropathy

The majority of patients we treat with scrambler therapy come to us frustrated and exhausted by the endless search for pain relief. They have often resorted to unproven surgeries, experimental procedures, or have used powerful pain medications that leave them mentally and physically debilitated by the drug’s side effects.

I encourage people with treatment-resistant neuropathy and their families to research and consider less invasive, alternative solutions to combat the effects of chronic pain. In some cases, the cost can be comparable to prescription medications and in-patient co-pays. The outcome can be life-changing.

Regardless of the pain therapy you choose, keep in mind there are treatments that do not involve narcotics, surgery or invasive procedures, which can result in more pain and discomfort.

Keep looking -- network with people who have your medical condition, conduct your own research, and reach out to doctors who understand the value of alternative therapy. Ask the provider to put you in touch with another patient who had the treatment. We enthusiastically offer this service through our Patient-2-Patient program.

There may very well be a solution out there to minimize your pain. But often, it’s up to you to discover it.

Michael J. Cooney has been a doctor of chiropractic for more than 30 years at Rutherford Allied Medical Group and Calmare Therapy NJ in Rutherford, New Jersey. He is one of six certified providers of Calmare in the U.S. Dr. Cooney can be emailed at calmarenj@gmail.com.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Four Years of Chronic Pain

By Crystal Lindell, Columnist

This month marks four years since I first woke up with random pain in my right ribs.

Sometimes it feels shorter than that. Sometimes, it feels so much longer.

I didn’t want to write this column. I didn’t want to acknowledge this anniversary.

I’ve been doing so much better lately. The pain, which is likely intercostal neuralgia, is way more under control than it used to be, thanks in large part, I believe, to getting my Vitamin D levels into the normal range.

But it lingers, it’s always there, like a black shadow and a heavy cinder block, pulling me back.

And after taking myself from 60 mg of opioids a day down to 5 mg, I decided this month to go back up a bit because the pain has been too much to bear. After talking with my doctor, we decided to go with 10 mg a day.

It feels like defeat.

I don’t know why the pain seems to be worse these days. It could be stress, it could be the weather, or it could just be because I wear Mac red lipstick almost daily now — it all really does feel that arbitrary.

And even though I try to manage all the possible triggers, sometimes it just flares up and leaves me unable to get out of bed. On those days, even the hydrocodone doesn’t touch it.

It’s frustrating. And I thought maybe if I didn’t write this column — if I just ignored the four-year mark — I could pretend I was actually all better.

I’m not though. Obviously, I’m not.

The pain still impacts so much of my daily life. I still factor in time to rest after a shower. I still make careful calculations about how much driving I can really do in a day before the pain gets too bad. And I still take lots of sick time from work.

I spend more time than I should counting hydrocodone pills and figuring out which bras hurt the least and avoiding hugs.

I do feel like I’m better than I was though. I’m completely off morphine, which feels like a victory. And most of the time, the pain is completely manageable with a very small dose of hydrocodone. Also, I’m lucky in that I can fake being well long enough that most of the time it doesn’t really impact how others see me. Most people have no idea I struggle with health issues unless I outright tell them.

It’s been a long four years. And I wouldn’t wish chronic pain on anyone. All of the good things — all of the ways I’ve learned to be more compassionate, all of the writing it has inspired, all of the bonds it helped me cement with family and friends who helped me out — I would give it all back if I could live without pain.

Alas, that is not my fate. This is my fate. A constant battle between living like a healthy person and feeling like a sick person. Medical bills. Driving two hours each way to see specialists. Sleeping only on my left side. This is my life. 

But at least I have my Mac red lipstick. Even the rib pain can’t take that away from me.

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.

Should I Tell Someone About My Invisible Illness?

By Barby Ingle, Columnist

It can be tricky deciding when to tell someone about your chronic pain or invisible illness. You can never take back information once it is shared.

If you choose to disclose that you have a chronic condition or disability, you should decide when and how to do it. Take the time to think about different situations and how you wish to handle them.

Many people feel it is not their place to ask about your physical conditions, but knowing about your pain and limitations could help them understand where you are coming from with your thoughts and actions.

I know a chronic pain patient who liked a neighbor and was interested in dating him.  He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out and they had a great time.

Over the next few months, they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away.

Friends encouraged her to tell him about her medical condition and what she was going through. She did, and he stuck around for a while, but in the end it did not work out. However, they remained friends and it helped her see that she could still have a social life.

If you’re in this or another social situation, you should think about the following when deciding whether to disclose your condition and how it affects you:

• Are you able to participate in activities using your coping skills and tools?
• Do you need accommodations?
• Are you able to perform the activity safely if you choose not to disclose?
• Do you think the other person will react in a way that’s appropriate for where you are?

If you are not sure about the latter, you may want to wait until you are in a private setting.

If the situation becomes an intimate relationship, it is very important to share even if it means losing that person. It is not fair to them or you to hold that information back.

If your disability is in remission or typically under control, is there a reason to disclose? It is possible that flare-ups may keep you from future activities, so it would be a good thing to disclose ahead of time. The education you give them may also help someone else they meet along the way.

Finally, how will you address misconceptions about your chronic condition when you disclose? Some people do not believe in treating pain with narcotic medications or had a bad experience with someone else in their life with chronic pain.   

Not disclosing is wrong if you are in a situation that can cause others harm. For instance, when getting on a plane, you shouldn’t be sitting in the exit row. If assigned by mistake, notify the flight crew.

When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed.

When Will Doctors Speak Out for Their Pain Patients?

By Michael Thompson, Guest Columnist

I am a retired clinical social worker and a licensed chemical dependency counselor.

I had to retire about six years ago, at age 62, when my rotator cuffs started shredding on a chronic basis.  I also have osteoarthritis in both knees and peripheral neuropathy with severe pain in both feet and hands.  It’s been several years since I was able to wear shoes.   

I have also been diagnosed with Chronic Regional Pain Syndrome, which just means we don’t know what the problem is but were just going to call it blah, blah, blah.  That’s medicine for you – an art, not a science.

I am allergic to non-steroidal anti-inflammatory pain medication.  The last time I took naproxen, my blood pressure (which is normally high) dropped to 80/50.  I literally saw the pearly gates.  I ended up in the hospital for about a week. 

To put it lightly, my genes are rotten.  Everything seems to be breaking down in the latter years of my life and it all hurts. 

For about six years I was on a relatively high dose of opioid pain medication. Life wasn’t great, but it was pretty good.  I was able to play golf and work out three times a week in a physical therapy program.  I could work in the yard and around the house. Despite all of my multiple medical problems, I had an acceptable quality of life. 

MICHAEL THOMPSON

Then last year the CDC guidelines for opioid prescribing came out. My pain specialist freaked out and abruptly informed me that in order to keep the DEA from her door, she was going to have to reduce the amount of opiate medication she was prescribing for me.  My dose was cut in half.

In less than a month, I cratered.  I was in such intense pain 24 hours a day that I couldn’t sleep.  I couldn’t function.  My quality of life went from decent to nonexistent.  I was no longer able to work out and gained a good deal of weight. I couldn’t walk across the room because of extreme pain.  I spent my time at home waiting until it was time to take my next dose of medication. 

I tried changing my schedule, so that instead of taking a pill every six hours I would take one when I really needed it for severe pain. That seemed to work better, but I wound up taking more pills than I should and came up short at the end of the month. I was left for 48 hours with no medication at all. 

Even though I had never abused my medication, my pain doctor refused to help me out with an early refill, saying that it was just too bad and that the DEA would not let her write a new script even a half a day before it was due.  

I was stunned, though I should have known better.  For two days I thought I was going to die.  It wasn’t just the withdrawal. It was the unmasked intense pain. 

I worked for a time early in my career with an addiction physician who taught me that chemical dependence was a lot easier to treat than chronic pain, because of the all-consuming nature of pain.  He told me that with addiction you might wish you were going to die, but with the strain that untreated pain puts on the body, you might actually die.  After experiencing both, I can vouch for the truth of his words.

Needless to say, I have not made that mistake again.  Since that time I have maintained a strict regimen, even if that meant that I would have to white knuckle the last few hours before the next dose is due.

When I saw my doctor last month, she told me that the DEA had instructed her that she could not prescribe more than three pills a day to any of her patients.  Next time I see her, she will reduce me to four pills a day.  The month after that, she will only prescribe three a day. 

I don’t know what I am going to do when that happens.  It terrifies me.  I have never considered suicide as an option, but when a person is without hope that things will improve and they face intense grinding pain 24/7, I can understand how some people might find suicide appealing.  As a therapist, I never thought that I could understand that kind of thinking, but I do.

I asked for a referral to a psychiatrist because of her suggestion that with their advanced training, they might be able to prescribe more medication or a different opiate that works better. 

The psychiatrist I was referred to was the CEO of a local rehab program.  When he discovered that I was retired and on Medicare, and that I didn’t have a generous insurance package for rehab, his manner changed abruptly.  He treated me like I was a med seeking (which I was) and stone cold junky (which I was not). 

After an extremely presumptuous and rude exchange (it was clear that he was trying to impress his two cute interns and to show them just how you handle addicts), I informed him that I just did not feel that we were a good fit and left. 

It was clear that he knew nothing about my background or my history. And when he found out I didn’t have insurance money to feed his program, he lost interest in finding out anything about me.  I pity his patients and his employees. 

My next step was to seek a second referral. The doctor I was sent to was another pain specialist, who informed me that she was only prescribing two pills a day to her current patients, and so I should stay with my current provider.

I don’t know whether the issue has been a poor roll out of the CDC guidelines or if doctors aren’t reading them correctly and feel it’s better to be safe than sorry – even if that means leaving their suffering patients in the lurch. 

Either way, it’s a hell of a way to run a railroad and a lousy way to practice the healing arts.  Leaving so many people in agony is criminal.  For a doctor to do this, they might as well sell insurance for all the good they are doing their patients. What happened to the Hippocratic Oath?

I have to confess.  I am getting desperate.  With the level of pain and stress I am under, my health is breaking down. I can understand why some might consider suicide as a real option as an alternative pain solution. 

The CDC needs to consider how this will affect the aging population, for whom opiate medication may be the only path to a decent quality of life during their later years.  I mean, what are they afraid of? Lines of aging junkies sitting in the gutter with a needle in their arm? 

It is interesting to note that none of this is affecting the addict population, other than to increase the number of people seeking pain relief on the black market.  Addicts will always find a way.  Legitimate seniors with palliative and end-of-life pain concerns, and others with legitimate pain needs, have nowhere else to turn. 

Medicine is failing us. This is medicine by law enforcement. Scare the doctors and the problem will go away.  If the DEA is frightening doctors with the loss of their license, the CDC needs to step in and call off the dogs.

I just hope this communication to my pain doctor comes before I die from complications of intense pain.  What a way to go. Death by good intentions, but poor communication.

Who speaks for us, if not the doctor?

Michael Thompson lives in the Dallas, Texas area.

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 represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Safe Way to Healthy, Restorative Sleep

By Ellen Lenox Smith, Columnist

For many of us suffering from chronic pain, coping with our medical issues can be physically and emotionally draining. Often, the lack of healthy sleep is the culprit.

Living with Ehlers Danlos syndrome (EDS) and sarcoidosis, I used to constantly wake up in the middle of the night with so much pain it was impossible to get any form of rest. When I was teaching, I somehow went for years trying to teach on “empty” due to a chronic lack of restorative sleep.

I remember having to cheat and use a seating chart to remember the names of my wonderful students, who were sitting right in front of me. These were students I had known, loved and taught for months. It was embarrassing, heartbreaking, and created a sense of loss and hopelessness.

Thankfully, those days are gone. I have gone from years of almost no quality sleep to being someone who goes to bed at night and wakes up in the morning feeling well rested. I don’t even remember any dreams, so I am getting the real REM sleep!

How did I do it? A teaspoon of oil made from medical marijuana. I take it before bedtime, mixed with a little applesauce or a small amount of food.

Within an hour, my body is ready for bed and sleep. 

For years I made this oil at home on top of the stove, but today enjoy using the Magical Butter machine. We find that oil made from the indica strain of marijuana works best for sleep. Directions for making the oil can be found on our website. 

I am now both a medical marijuana patient and a caregiver in the state of Rhode Island. Patients visit us with a variety of different illnesses, but the one thing they all have in common is lack of sleep. Without sleep, you lose hope and courage to move forward with your life. Each patient that has tried this oil has found that it gives them rest and hope.

Recently, a young woman and her husband came to our home. Living with both EDS and Chronic Regional Pain Syndrome (CRPS), she had a difficult life, but was hoping to find something to make it easier. We have the same pain doctor and he suggested she get in touch with us to learn about cannabis. 

The first night that she tried the oil, she slept for eight hours and was both thrilled and shocked. She said even her face looked calmer and more rested.  She is now happier, hopeful and has more strength to get through the day.

There was another patient sent to us who was a paraplegic in constant pain. He was angry, miserable and wished he hadn’t been given life-saving surgery after his accident. He was at a loss as to what to do to cope with the life he was now given. 

He tried the oil and was shocked what it did for him. From that point on, the desperate man who first called me and couldn’t even be understood due to his level of pain, was happy, laughing and finding some meaning in his difficult life. He later passed, but the oil gave him a better quality of life and a sense of purpose again.

We have seen one success after another of pain patients getting real quality sleep and rest. We have seen it work for cancer patients, and those suffering with post-traumatic stress disorder, multiple sclerosis, back pain, fibromyalgia, arthritis and other conditions.

For those of you who are caught up in opioid hysteria and can no longer get medication, I hope you take a moment and think about trying cannabis oil at night for rest. I have used it safely for a decade, since I am not able to metabolize even an aspirin or Tylenol, let alone any opiate. May you find the courage to try it and get the same results.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis.  Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana or to contact the Smith's, visit their 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.

Pain Is Not That Simple

By Janice Reynolds, Guest Columnist

Let us stop talking about opioids for a moment and talk rather about pain. 

One of the unfortunate results of the phobia over opioids is that it has encouraged the belief that pain is a single and separate entity.  This way of thinking is being spread by the media, politicians and those who should know better, but don’t.  Pain is not that simple.

Pain affects the entire person and, when left untreated or undertreated, contributes to other health problems and can even lead to death. Acute and chronic pain can both exist in a cancer setting, as well as non-cancerous conditions.  The body does not know the difference.

What is different are the many different types and causes of acute and chronic pain.  There is also some crossover and intermingling.  Several different types of pain may exist at the same time, and acute pain can co-exist with chronic (notably as breakthrough pain).

It is usually easy to identify the source of acute pain, but there is no real evidence as to what “causes” chronic pain. We know there has been a change in neurons, which are no longer reporting a correct message to the brain. This poorly understood change is often permanent and not repairable.

People also respond differently to pain medications and therapies (what works for one may not work for another) and this is likely genetically linked. So a “study” which claims a certain medication doesn’t work for chronic pain or makes it worse has no basis in reality. There is no pain syndrome called “chronic pain.”

What is rarely talked about is the harmful effects of untreated pain. These effects are evidenced based, and can lead to increased suffering and fatal complications. Just with the cardiac system alone, pain can increase the heart rate, increase cardiac output, and contribute to heart attacks. Pain also affects the respiratory, musculoskeletal, endocrine, immune, gastrointestinal and nervous systems. Pain impairs wound healing.  

When left untreated or treated poorly, pain can also cause mental health problems, such as depression, suicide, insomnia, attention deficit, confusion, memory loss, and cognitive decline.  Many times these outcomes are blamed on medication, but pain is a much bigger impairment. Deaths are seldom evaluated to ascertain if pain was a contributing cause.

Stress has long been recognized as bad for your health.  It can worsen many illnesses and cause some as well.  We know that stress makes pain worse, but look at the amount of stress a person with pain faces almost every day in our society: losing access to a successful treatment, reading lies in the media, losing a provider, being treated like a criminal or drug addict, and so on.  This is not stress you can heal with exercise or meditation. It is relentless.

Pain may be an illness by itself, such as fibromyalgia, arthritis, headaches, interstitial cystitis, certain genetic conditions and more.  Pain accompanies many diseases or is part of their treatment: cancer, EDS, sickle cell anemia, lupus, post stroke pain, Parkinson’s, diabetes, alkalizing spondylitis, and so many more.

Pain could be a sudden onset of symptoms, such as kidney stones, gall bladder, disseminated shingles, or even an atypical heart attack. It may be the presenting symptom of other problems such as multiple myeloma, cancer metastases, ovarian cysts, torsion of the ovaries, testicles or intestines, and the list goes on. 

How many patients have died because the ER doctor hears the word “pain” and shuns them, refusing to see or treat them?  Or had a patient arrested because they refuse to leave?

Refusing to see someone in pain or denying them access to opioids or any treatment which works for them is malpractice. It certainly goes against the idea of “do no harm. ‘

The DEA has become a terrorist organization and many providers are afraid of it. “Evidence based practice” has also become a very loose term. The CDC opioid guidelines are not evidenced based.

Accusing only pain management doctors and patient advocacy groups of being influenced by the pharmaceutical industry is unethical as well, as the CDC, DEA and the addiction treatment industry also receive funding from pharma -- including support from drug testing companies.

Prescribing medication which is potentially more harmful than opioids, such as ibuprofen and acetaminophen, is also unscrupulous.  People with a history of ulcers and older adults are being told to take ibuprofen, even though ibuprofen causes 15,000 to 20,000 deaths a year when taken as prescribed. Ibuprofen was never meant for severe pain. 

People are being told they must do non-pharmacological interventions such as acupuncture, massage or physical therapy, even though they can’t afford it, it’s not covered by their insurance, or the therapy simply does not work for them.  Doctors insisting on an epidural steroid injection (which is not FDA approved) when it has not worked for someone in the past is also immoral.

There is a strong body of evidence that opioids work, no matter what an opiophobic or addiction treatment doctor will claim.

We have long fought against cook book medicine.  People with pain, whether acute or chronic, need to be considered in the whole, protected from harm, and treated with what is effective and affordable for them.  It is the ethical thing to do.    

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them. 

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.

A Pained Life: The Hand of a Stranger

By Carol Levy, Columnist

I went to the Women’s March on Philadelphia Saturday. I am very politically minded.  I love doing these things. And each and every time, I have the same problem

I forget about the pain. I forget about the specifics, logistics and potential for pain.

I have trigeminal neuralgia, which causes severe pain on the left side of my face. It can be set off just by touch. I am also legally blind on that side.

It puts me in a precarious position. It is essential that I not let anyone get close enough to accidentally brush against my face. For me, the innocuous sign of an outstretched hand or arm is dangerous. And since I can't see on that side, I have no idea how close someone might be to touching and triggering the pain.

I did not expect the size of the crowd, which was estimated at 50,000 people. Small rallies are bad enough, but this one was so enormous that as soon as I left the train station and went towards the designated rally area, I was engulfed in a sea of people.

And I was petrified. Thousands of people were bearing in on me.

I tried to make my way through the mass of people. Everyone was very nice. “Excuse me. Excuse me,” I said.  Some moved, but some could not with the press of so many bodies.

image courtesy of philadelphia mayor's office

One woman smiled as I explained to her I was trying to reach the borders of the rally, so I would not be in the midst of so many people. For this kind of event it was an odd thing to say. She looked at me quizzically. I figured I had better explain.

I have learned to be hesitant about explaining my condition. My family has been nasty about the pain. Strangers, even friends and acquaintances, can and have been unpleasant about it. As way too many of us know firsthand.

This was a “'talk with the stranger in the next seat” moment. I would never see her again, so there was no risk in explaining and no worry if she didn't understand or could not care less. Plus, my need outweighed my concerns about how she might react.

Her reaction was unexpected. She put her arm around me and held out her hand. Taking mine in hers, she led us through a bastion of folks. When we got to an area less crowded, she let go and I continued on.

What a wonderful experience and for so many reasons, not the least of which was I said what I needed and I was heard.

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.

Do Addicts Need Safe Havens to Shoot Up?

By Barby Ingle, Columnist

Lately I have been having more trouble sleeping than usual. At 3 am one night while lying in bed, my mind wandered to the more than 50 personal friends I have lost to suicide, medical complications, delays in treatment, and other health issues since 2012.

By 4 am I was watching the news. I had turned on the TV because my husband moved into a position that activated his “snore button” and I wasn’t going to be able to fall back asleep with that noise.

Then a news promo came across the screen. Next up, the announcer said, we will be discussing a proposal in San Francisco to provide addicts with a supervised facility to shoot heroin and other illegal drugs. Clean needles would be provided at no cost.

They think this will reduce the chances of an overdose death. Similar proposals have been made in other cities, like New York, Seattle and Baltimore.

I couldn’t believe what I was hearing.

I hit rewind and played it again. It really was happening! With the flood of thoughts that came to me, I knew I would never get to sleep and started thinking about the implications if this type of clinic was allowed.

How many ways would it affect our society? What message is it sending? Do I want my tax dollars to go to this type of clinic? Shooting heroin is illegal and there are people who support this?

The CDC put opioid guidelines in place last year for medications that are legal, prescribed and monitored. The guidelines caused many physicians to cut off or lower opioid doses -- even though it was not what some doctors felt was best for their patients. This has led to more suicidal thoughts, attempts, and actual deaths in the pain community.

I know one lady who was unable to get her opioid prescription filled for months. When they finally filled it, she used all the medication at one time to try and kill herself. Why? She didn’t want to face not being able to get the medication again and to go through the withdrawal pain of being without it.

She didn’t die. She was found and placed in a coma in intensive care. When the woman awoke days later, she was angry that her life had been saved.  

We are cutting off pain patients from medication that is legal because abusers may overdose and die. Yet there are plans to give drug abusers who are choosing to behave illegally a safe-haven, while denying legitimate patients access to the care their providers deem necessary.

We already have naloxone and similar medications available for people who overdose. Due to the great lobbying efforts of the “stop the abuse” team, naloxone is now available without prescription in 33 states. So basically it’s wrong to prescribe opioids, but if you choose to abuse them, we want to provide a place for you to use them safely. I am flabbergasted.

Can the legit pain patient show up and get opioids at these clinics as well?

I know if I was a heroin addict where I would be living. I would have my butt planted in a safe-haven drug facility so I could never have to go through withdrawal, be monitored so I don’t overdose, not have to pay for the care, and live the life I want.

That sounds much better than the life of the chronic pain patient, who comes in monthly at their own expense to get a prescription refilled. They are often drug tested, and if anything suspicious is found in their system, they are often taken off opioids and abandoned by their doctors.

Let’s circle back with this argument. Currently, legit pain patients are getting cut off from legally prescribed medications that help them be more productive and live better lives. This leads to withdrawal, which can cause death, and an increase in suicidal thoughts and actions. Some start looking for illegal means to help alleviate their pain.

Are we going to at least provide them with Suboxone, naloxone or methadone to help them come off the opioids more humanely?

We are helping drug abusers find new ways to keep abusing, while chronic pain patients are being ignored and discounted.

Let us not forsake one group for another. We need to find ways that address both pain and addiction concurrently, that don’t affect either side negatively or take away the rights of one group to give more rights to another. Let’s lower suicide statistics for those in chronic pain and overdose statistics for those who are abusing. It can be done. Silly proposals to provide safe-haven drug facilities for illegal drug use are wrong.

I am so looking forward to hearing everyone’s opinion in the comment section. Maybe there is something I am missing as to why anyone would think this is a good idea?

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the Power of 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.

How to Cope With Fibromyalgia Fog

By Lana Barhum, Columnist

My day job in the legal field can be pretty demanding, involving numerous phone calls, emails, deadlines, and other verbal and written communications. Some days, fibromyalgia fog makes my job a whole lot harder. 

Whether it is memory issues, trying to find the right words, misplacing things, or transcribing phone numbers correctly, fibro fog can affect the quality of my work.

It also affects my personal life, sometimes leaving me forgetful, confused, flustered carrying on conversations, and even lost trying get to destinations often traveled.

Fibro fog is the term used to describe the cognitive difficulties associated with fibromyalgia. According to a 2015 review in Rheumatology International, some fibromyalgia patients reported that fibro fog is even more difficult to manage than their pain and fatigue.

At least half fibromyalgia patients “experience distressing subjective cognitive impairment,” according to a 2015 report in Arthritis Care and Research.  

Fibro fog can cause short term memory loss, distraction, forgetfulness, difficulty in carrying on conversations, inability to process new information and occasional disorientation.  In most cases, fibro fog is a mild symptom, but for some people it can be quite scary, especially for those used to functioning at very high levels.

Fibro fog can leave me temporally disorientated and unable connect my thoughts. My thoughts come in, but they are not being processed correctly, or in a way I can properly put into words. And that can be stressful and frightening.

Causes of Fibro Fog

The reasons for fibro fog are not well understood.  But doctors speculate fibro fog is a result of fibromyalgia patients' inability to get restorative sleep.

"Therefore they're chronically fatigued," says Corey Walker, MD, a rheumatologist at the Intermountain Health Care System in Logan, Utah. "Their minds aren't rested." 

Non-restorative sleep is the number one sleep issue among fibromyalgia patients. Even after getting a full night's sleep, you may still wake up feeling exhausted, or as if you have not slept at all. Up to 90% of fibromyalgia patients experience non-restorative sleep, according to a 2016 report in the Journal of Pain and Relief by researchers at Luigi Sacco University Hospital in Milan, Italy. These sleep problems can contribute to pain, daytime fatigue, and fibro fog.

"A large percentage of FM patients report sleep disturbance, including difficulties in falling or staying asleep, early morning awakenings and non-restorative sleep," says Maurizio Rizzi, MD, and colleagues. The researchers conclude managing sleep disorders could actually reduce fibromyalgia symptoms, including fibro fog.

Other theories blame pain levels for fibromyalgia fog. When people experience fibromyalgia pain, the belief is that some parts of their brains do not receive enough oxygen, causing confusion and disorientation. Pain also stimulates areas of the brain involved in cognitive tasks. Quite simply, it is just hard to concentrate when you are in pain.

Overexertion, extreme fatigue, stress and side effects of fibromyalgia medications are also blamed for fibro fog.  My fibro fog is worst when I am exhausted, and as a single parent, I have been known to push myself to the point of cloudiness. Overstimulation, such as background noise and fluorescent lights, is also a fibro fog trigger, along with not getting a good night's sleep.  All of these things can make it harder to focus on the things I need to do.

Coping With Fibro Fog

While there are no specific treatments for fibro fog, you can alleviate fibro fog by following your doctor's treatment plan. Your doctor may also prescribe medications to manage specific symptoms.  For example, he or she may prescribe a sleep aid to help improve sleep, and if sleep quality is better, you’ll feel more alert and focused. 

Here are some other strategies for coping with fibro fog.

Get Quality Sleep. Because lack of sleep is a big reason for fibro fog, improving sleep habits may provide relief. For example, try going to bed at the same time every night and get up in the morning at the same time every day. 

Stay Active. Even though you struggle with pain, you should still keep moving. Low impact activities, such as walking, are easy to do. Try to stay active throughout the day by sitting less, taking stairs more often, and parking further away.

Maintain a healthy diet. Cognitive functions do improve when you eat real food. This includes fruits and vegetables, whole grains, lean meat, and low-fat dairy.

Avoid caffeine. Most people think caffeine helps with alertness and awareness. But, caffeine makes symptoms worse for fibromyalgia patients, and contributes to sleep issues. Moreover, it is a stimulant that gives you energy and forces you to crash once it wears off.

Stop stressing. Stress triggers and worsens fibro fog.  Do your best to avoid stressful situations. Try relaxation breathing when you are feeling overwhelmed.

Keep a calendar. A calendar is a lifesaver when you can't think straight.  Keep track of appointments and events on a paper calendar or computer program.  Set timers and alarms as appointment reminders.

Have routines. Having routines for simple tasks helps, too.  For example, you may want to keep your purse, coat, and keys in the same place, so you are less likely to be searching when you need them and fibro fog is making it difficult to think straight.

Don’t Take Life So Seriously

Like most other fibromyalgia symptoms, there is no magic, one-size-fits-all solution to combat fibro fog. It usually requires a combination of strategies and habits to reduce cognitive issues. You will need to try and practice coping strategies until you find what works for you.

Remember to be kind to yourself when you struggle with mental unclarity.  Slow down if you are feeling frustrated and regain focus.  Lastly and most importantly, stop pushing yourself to adjust and just take care of yourself.

I have learned to not take life so seriously and to have a tongue-in-cheek attitude about my cognitive struggles. There are plenty of foggy -- yet funny – moments, like when I put my keys in the fridge and the milk in the cabinet.  I can either get depressed or laugh at these silly mishaps.  Taking yourself lightly will give you an emotional boost and put a smile on your face, and there are plenty of good health benefits when you are happier.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.