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.

Wear, Tear & Care: The Edge Desk

By Jennifer Kilgore, Columnist

Let’s talk about how much I hate sitting.

I have two neck fusions, a permanently messed-up thoracic spine, and bulging discs in the lumbar spine. All of these combined make it very difficult for me to sit for long periods of time. This was a large part of why I had to leave the traditional working world and work from home.

I am always looking for improvements to my physical work setup. I already have a kneeling chair that I’d used in my old office, and even that -- my best option -- is something I can only do for a limited period of time before my back flares.

It seemed that coupling a kneeling chair with a normal desk was sometimes an odd combination because the height difference could mean bending my wrists to type (bad) or adjusting my neck (also bad). For some reason, I couldn’t figure out the right height to put the kneeling chair to correlate with my computer monitor.

So the question became, is there a desk that’s made specifically to work with kneeling chairs?

Why yes! There is!

I backed the Edge Desk on Kickstarter in March 2016. Every square inch of my house is occupied by something and I have no extra space. I bought this desk without caring about that.

As of now the desk is sitting in the middle of my office, where it’s blocking the printer and two bookcases (it’s not a big office).

This thing came fully assembled in a huge box in the middle of December. Now I’ve had enough time to use it and gather my thoughts.

courtesy: edge desk

Thoughts on the Edge Desk

●       It’s ergonomic

There’s something about kneeling that makes you sit up straight. It’s not an uncomfortable sort of straight, though -- a lot of the pressure is taken by your shins and thighs. Most importantly, it doesn’t bother your shins or knees, or at least it shouldn’t. This ensures proper alignment of the spine. I actually also felt like it kept me alert and more awake at my desk in a way that normal chairs do not.

●       It’s compact and light

I am not a strong person. Let’s get this out of the way right now. I am basically an anthropomorphic noodle. However, I can manipulate this desk myself if I try. It’s still something I’d ask my husband to carry for me, were that option to arise -- it’s 25 lbs., though it folds down to an impressive 6 inches and can fit underneath a twin bed for storage. So, once I decide to move it from its current position in the middle of my office, it won’t take up too much room. 

●       Angle of the easel

The really cool thing about this desk is the connected tabletop. It can be flat, or it can tilt at an angle, like an artist’s easel. It can also tilt at a very sharp degree, like an architect’s table.

Most of my work is done on a computer, which this desk can still accommodate, but as some of my spine damage affects my hands, I’ve been trying to think of interesting new activities to work on my manual dexterity. I’ve tried knitting, and now I’m experimenting with calligraphy. This new desk is great for that purpose.

I’m perfectly okay with letting this desk float around my house until we can find a proper place for it. It’s very portable, so at least it won’t be difficult to move around!

courtesy: edge desk

All in all, I quite like the Edge Desk. It’s very good for people who require an ergonomic setup that is gentle on the spine, yet it’s sturdy enough to travel to an office if needed. And it’s a talking piece, because who else has anything like it?

You can purchase the Edge Desk for $350 through the company’s website.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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.

Will End of Obamacare Hurt the Chronically Sick?

By Barby Ingle, Columnist

When a pebble is thrown into a pond, it creates a ripple effect that is noticeable, but no long-term damage occurs.

But if an asteroid were to land in the ocean, it could be catastrophic to all life on earth. We are simply not prepared for such a disaster.

The chronic pain community was hit by an asteroid of sorts last year with the release of the CDC’s opioid prescribing guidelines. The tsunamis are still hitting patients in its aftermath. To make any change to the healthcare system without having something to replace it is never a good idea.

Now we are anxiously waiting for details on what President-Elect Donald Trump and the Republican-led Congress will offer to replace Obamacare.

Although things won’t change overnight, the early signs are that “Trumpcare” could affect the already limited healthcare that the poor, elderly and chronically ill receive.

Some of you who are not chronically ill may feel like I am saying the sky is falling. But many of us are already unable to afford proper and timely treatment with the coverage we have now, because the system is set up to give priority to acute care, not chronic care.

Republican lawmakers can’t wait until Obamacare is repealed and replaced. But they need to take the time to develop a system that is effective for patients, providers, educational institutions, insurance companies, pharmaceutical companies and government agencies. Patients and providers are far too often left out of the discussion about treating the chronically ill and appropriate compensation for those providing their care.

In the first few days of 2017, GOP leaders such as House Speaker Paul Ryan and Health and Human Services Secretary-nominee Dr. Tom Price announced that they will target the Medicare system with major restructuring. They have not yet offered any details on their plans, but say they will lower healthcare costs for taxpayers. 

Medicare is an east target. With the number of elderly increasing as baby boomers move into retirement age, it’s inevitable that health care costs are going to increase. In 2015, Medicare spending grew 4.5% to $646 billion, and Medicaid grew twice as fast, by 9.7% to $545 billion.

"Value-Based" Medicine

Based on their recent announcement, congressional leaders are likely to try to convert Medicaid from an entitlement program for low-income, elderly and disabled Americans to one that is “value based” with fixed federal contributions to the states. They have not yet offered details on how those payments would be calculated or whether they would keep pace with inflation. 

Measuring a providers’ pay using a value based system is not going to work with chronic illness. There is not enough incentive in the current system that gives providers the compensation they need. We have already seen many providers across the country choose to stop treating people with chronic pain diseases. 

Every patient is also different. There is no one-size-fits-all cure for any disease. Two people can be given the same medication for cancer, and while it may work for one patient, the other one may have to try other treatments. This is the same for every single chronic disease. 

A person who breaks a bone can go to the emergency room, get the bone set, and wear a cast while it heals. They don’t have to think about how they are going to keep living with an incurable disease and the roadblocks they have to face in getting treatment.

Now we have people who don’t understand the complexity of treatment for chronic care patients deciding what additional roadblocks they can put up to keep costs down. 

Can we start by paying Congress with a value based system, like they want to do with our providers? Can we punish lawmakers with fines for needing extra hearings to get a bill passed or blocked? I don’t think so. Yet the current leadership wants states to provide better healthcare at a lower cost by giving them greater flexibility in setting eligibility and benefits. I see it as taking away even more of the limited coverage we currently have. 

Without federal guidelines, states will push poor people out of programs, eliminate important benefits, and cut already-low payment rates to providers to save money.

I remember a time in Arizona when poor men and women qualified for state assistance for health and food. Now, you must have children to qualify for many of our assistance programs. 

Every state is different in what its Medicaid program covers and the eligibility requirement. Giving additional incentives states to “cut costs” instead of putting the focus on patient care is a big mistake and will cost society more in the long run. 

It reminds me of something I have seen in the insurance industry. Insurers want to lower emergency room costs, so they put payment practices in place to discourage chronic care patients from seeking the care they need. 

I have personally been in the position of not wanting to go to the ER because I knew they wouldn’t do anything to help me. As soon as the attending doctor sees my complicated medical history, they don’t want to treat me for the acute issue that I am having due to the extra precautions they need to take due to my chronic disease. They spend more time trying to find another hospital to transfer me to than they spend working on me! 

This past September, I had two hospital doctors fight in front of me because one didn’t want to be my attending provider. I am a complicated case, and he knew he was not going to be compensated properly for taking care of me. The outcome was leaving me in the emergency room for over 12 hours before getting me a room. This gave him enough time to pressure me to check myself out and head to another hospital, which was suggested more than once. 

The emergency room provider knew I needed to be in the hospital, so she loudly spoke up to keep me there and worked hard to help me as best she could. The delays in getting me treatment only wound up increasing the insurance bill.

New congressional proposals would phase out enhanced federal payments to the states to cover low-income adults. States need to save money as well, so what will they do to offset these costs? They will either raise taxes or cut what is covered to those in need. Long-term care coverage items seem to get cut first, as they are the most costly. 

President-elect Trump campaigned on not touching Medicare and promised to make sure everyone has access to healthcare. But we don’t know whether he will go along with the healthcare agendas of top congressional leaders. We do know that the Trump administration is receptive to the states' Medicaid waiver proposals. This would impose more patient-responsibility requirements. Chronic care patients already have trouble paying insurance premiums, sustaining employment, and dealing with illnesses that last a lifetime. Putting time limits on benefits for a chronically ill person is ridiculous.

Congressional leaders are now saying they are working to turn Medicare into a program that would pay private plans and the traditional fee-for-service program a fixed amount per beneficiary by 2024. If traditional Medicare competes with private plans on equal terms, there will be a loss in coverage of long-term care needs for the chronically ill. 

We are not equal to a healthy working individual and our coverage needs are critically different. It is also important to remember those who are disabled and qualify for Medicare have earned it by paying into the system when they could work. Demanding someone to be engaged in meaningful work to receive Medicare benefits when they are disabled is ridiculous.  

Let’s not wait to move until the asteroid hits. Let us unite and voice our needs so we are not overlooked as these new policies are developed. Let’s demand that our congressional leaders give chronically ill patients a seat at the table, and take the time to create a health system that is right for all Americans. Don’t let them forsake the chronically ill to save money. 

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.

Finding the Right Doctor to Treat Fibromyalgia

By Lana Barhum, Columnist

Numerous studies show patients have better health outcomes when they have a doctor they trust and who listens to their health concerns.  Further, patients who trust their doctor are more likely listen to their advice and be compliant with treatment.

According to a 2014 breakdown of 13 clinical studies, a good doctor-patient relationship can have significant effects on positive health outcomes. The research, published in the PLOS One online journal, looked at studies where doctors were randomly assigned to either practice their normal care methods or take additional training to provide more empathy and patient focused care. The health benefits of patient focused care showed measurable results towards better patient outcomes. 

"The patient-clinician relationship has a small, but statistically significant effect on healthcare outcomes,” the researchers found.  

If you think you might have fibromyalgia, you will need to work closely with your doctor to diagnose and treat it.  You want a doctor who is knowledgeable about fibromyalgia and treatment options, including medicinal and non-medicinal therapies. 

In addition, your doctor should be someone you can confide in when you have concerns about treatments, symptoms, pain and lifestyle.

What Doctors Treat Fibromyalgia?

The American College of Rheumatology’s (ACR) updated fibromyalgia diagnostic criteria has made it easier for medical professionals to learn about the diagnosis and management of fibromyalgia. Still, not every doctor understands fibromyalgia, so it is important to find one who is up-to-date on the latest treatment and research. 

The following doctors can treat fibromyalgia:

Rheumatologists. Rheumatologists treat arthritis and other diseases of the bones, joints and muscles. This includes fibromyalgia, osteoarthritis and autoimmune arthritis, such as rheumatoid arthritis and lupus. 

Neurologists. A neurologist diagnoses and treats patients with nervous system disorders. Researchers have long speculated fibromyalgia is the result of a pain processing disorder, which causes amplified pain that shoots through the bodies of sufferers. 

"Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition," said Daniel Clauw, MD, a professor of anesthesiology at the University of Michigan.

Neurologists might be in the best position to treat fibromyalgia, as they are able to narrow down pain and symptoms and treat them more specifically. 

Pain Specialists.  Pain specialists are experts in diagnosis and treatment of chronic pain.  They offer a variety of treatments that include both medical and psychological therapies.  They generally work in private pain management clinics or as part of pain treatment centers in hospitals and university medical centers.

Family Practice Doctors and Internists. Traditionally, fibromyalgia fell under the scope of rheumatologists. These days, however, family practice doctors and general internists are seeing more patients with fibromyalgia.

Finding the Right Doctor

Here are a few tips to find the right doctor to treat your fibromyalgia:

Support Groups. Local fibromyalgia or arthritis support groups are great places for referrals to someone who treats fibromyalgia. 

Don’t limit yourself to rheumatologists.  While the ACR's rheumatologist search is a great resource, there is no reason to limit yourself.  Rheumatologists generally have demanding patient loads and it could take months to get in for an appointment. 

Check with pain clinics. Pain clinics may treat fibromyalgia patients separately from pain management.  They also provide referrals to fibromyalgia specialists.

Call your insurance company. Your insurance company may have a list of health care providers   covered by your policy that will also include doctors who treat fibromyalgia.

Your family practice doctor. Your family doctor likely knows someone who specializes in fibromyalgia treatment. He or she may also be qualified to treat you.

Ask around. Someone you trust, such as a loved one or co-worker, may know a fibromyalgia doctor.  You may also find someone else who is living with fibromyalgia.

Hospital websites. Hospital websites offer directories of medical providers on their websites.  They share doctor resumes and expertise, which may include experience in treating fibromyalgia.

My Experience Finding the Right Doctor

Because fibromyalgia is still controversial in the medical community, finding an informed doctor can help you to get the best control of your situation, the medical help you need, and relief for pain and symptoms. 

My current treating doctor -- a rheumatologist -- understands that our doctor-patient relationship is a partnership.  She respects my time, never makes me feel rushed and answers my questions.  Moreover, she is knowledgeable about my diagnosis, treatment plan and lifestyle, and doesn’t rely on my chart for answers.   But I didn’t always have a doctor I trusted, who listened and addressed my concerns.

In 2009, I didn’t know what a successful doctor-patient relationship looked like. I had a doctor who dismissed my worries, felt fibromyalgia could only be treated with diet, exercise, and anxiety medications, and did not want to hear how fibromyalgia affected my life as a young mother in my early 30s.  After that first miserable year with fibromyalgia, I came to the conclusion that if I wanted a healthy and thriving life, I would first have to find the right person to treat me.

Experience has taught me the relationship I have with my fibromyalgia doctor is the main determinant of how successful my treatments will be.   That first fibromyalgia doctor told me I'd be disabled within four years, but it has been over eight years and I am not disabled and still able to work and care for my family.  I know this couldn’t be possible if I continued to see that doctor. 

Finding a doctor who understands fibromyalgia may take time, but don’t get discouraged. Look for a doctor who is knowledgeable about fibromyalgia, believes in team work, is empathetic and who listens. 

And if you find yourself with one that isn't a good fit, as I did, it is okay to look for someone else. But keep the current one until you find someone new.

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.

A Pained Life: Keep it Simple

By Carol Levy, Columnist

Simple always seems… so simple to me, especially if it’s medical-related and even more so when it involves pain.

When I was 23, I developed a terrible pain in my left arm. And oddly, whenever I turned my head, the pulse in that arm disappeared. 

My journey was typical. I had trouble getting a diagnosis and was told it was psychological. The doctors were not thinking it through. How can someone psychologically obliterate a pulse? 

Finally, I was diagnosed with thoracic outlet syndrome (TOS). My symptoms were text book.

At the time, I was a physician assistant student and one doctor had lectured on TOS. Knowing I had it and without asking me, he directed students to have me turn my head and feel the pulse disappear.

Finally a thoracic surgeon told me, “I'll operate and remove your first rib. That should help.”

It sure did. I woke up from anesthesia and the pain was gone, and my pulse no longer disappearing.

A physical therapist also suggested an exercise: “Run your fingers up and down the wall a few times every day.” She never explained why.

“This is so silly,” I said to myself. After all, I was 23. I knew everything. What good can something this simple do? Just silliness. So I didn’t do it.

And I have had problems with my shoulder ever since. For over 40 years. All because simple seemed... too simple.

One more example. This time easy as pie escaped the doctors, except for one. 

Facial paralysis from trigeminal neuralgia sometimes causes my left eye to not close completely. As a result, my eye sometimes dries out to the point where it needs to be sewn closed. I abhor this, but I have had it done a number of times through the years. In truth, they wanted it to be done permanently 30 years ago. But they respected my choice not to.

On one occasion, three doctors agreed the eyelid had to be closed. Even the one who usually held out came on board. A fourth doctor was relatively new -- new enough to think outside the box -- and realized there might be another solution. 

Every night I taped the eye shut, using tissue paper and tape on both sides of the eye patch.

“Before we close it, let’s try this,” she said. “I want you to add one more piece of tape, directly down the middle.”

Seemed silly. You know, too simple. But I tried it anyway. And voila! The eye cleared within a day.

Between me and the doctors, simple often seems too silly, too unsophisticated, and unscientific. We are so accustomed to the harder answers: more drugs, more treatments, and more surgeries.

I regret greatly that the easy answer for my arm seemed so preposterous at the time that I refused to even try it. But I am so grateful that Dr. Smith saw the simple and made the suggestion anyway.

We get accustomed to high tech solutions, higher level treatments, stronger doses and more difficult surgeries.

I realized my journey is akin to going up a ladder. It is tempting to skip the first or even the second step on the ladder, forgetting or ignoring your pain. But each step carries more risk, and climbing the ladder becomes more difficult and dangerous the higher you go. 

Sometimes simple is exactly what we need.

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.

Relieving Pain Should Be a Pro-Life Issue

By Anne Fuqua, Guest Columnist

There’s an article in the Boston Globe this week about doctors who stopped prescribing opioid pain medication, even when they knew it might be harmful to patients.

As a registered nurse, I never expected to be on the other side of this issue.  But primary generalized dystonia and surgical complications inducted me into the “chronic pain club” 17 years ago.

As a patient in Alabama, I can attest to the fact that there is an overwhelming atmosphere of fear among physicians about prescribing opioids.

In 2012, seven Alabama doctors were investigated for over-prescribing.  Two years later that number sky-rocketed to 44 investigations.  The very few doctors that still prescribe are now distrustful of their most reliable, long-term patients. 

When my own well-respected doctor of nine years left pain management out of fear for his license, I had my medical records sent to almost 60 different physicians in the state. 

None of them were willing to treat me.

This was the most difficult and physically painful time of my life.  In just a few weeks’ time, I went from driving and being thrilled to start a part-time job as an “Obamacare Navigator” to being barely able care for myself independently.  I had no quality of life whatsoever.  Over a year later, I still have lasting physical effects from the wear and tear of severe spasms on my body. 

Beyond simple pain relief, opioid medication has always exerted a direct effect on my dystonia and makes a huge difference.  It’s far more than the benefit I received from any of the medications typically prescribed for dystonia (and without their side effects).  I’m so grateful to have the life I have today, even if I don’t live in the same body I did before I was forced to taper my medications.

Of the nearly 60 doctors I contacted 18 months ago, not a single one is still treating chronic pain patients. Those that didn’t stop out of fear for their licenses have been investigated by the state medical board or raided by law enforcement. 

We have entered an era where politicians, bureaucrats and licensing board members are now practicing unlicensed medicine by dictating the care that healthcare professionals should provide. 

Forcing patients with chronic pain to suffer because some people abuse opioids is no different than jailing someone just because you think they might commit a crime someday. This type of government over-reach directly contradicts the principles on which our nation was founded

We need more emphasis on determining who is at risk of developing addiction and the ability to provide a necessary structure for their safe use of medication.  Treatment should be available without stigma for those who need it. 

The same grace of withholding stigma that we provide to addicts should also be given to chronic pain patients.  Responsible patients have done nothing to deserve the horrible stigma they often face because they require opioids for a decent quality of life. 

Life without quality isn’t living at all.  There is no more of a “pro-life” issue than controlling pain and providing quality of life.  If you are pro-life and don’t support physician-assisted death, then you need to support physician-assisted quality of life. And that means pain management that utilizes opioids when necessary. 

This isn’t a special interest issue.  It’s everyone’s business. If you haven’t been affected or known someone who has, you will.  As a society, it’s our moral imperative to care for the least among us.  Relieving pain is the least we can do – and when life expectancy is limited, it’s the most we can do.

Anne Fuqua has primary generalized dystonia.  She is a former registered nurse and does volunteer work with at-risk youth and in animal rescue.  Anne is very involved with patient advocacy efforts, pushing for access to all forms of therapy, including opioids.

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 Pain Poem: Do You Ever Wonder Why?

"Why"

By Angelika Byczkowski

People sometimes ask:

Do I ever wonder why?
 

When I was still invincible,

my shining star still on the rise,

my future still unscathed and bright,

anything seemed possible.

Anything but this.

A cosmic roll of the genetic dice

comes into play and shows its face:

I'll be living in pain the rest of my days. 

Do I ever wonder why?

They ask this, not I.

For me, such questions don't apply.

I've accepted and adapted,

adjusted to a life with pain,

asking nothing of the future,

giving up my yesterdays.

I've been changed and the world is changed,

my altered view sees everything new.
 

Perhaps there'd been a danger

of complacency, a lazy habit

of ease unearned, a passiveness,

a willingness to go along.
 

Perhaps life was becoming stale,

perilously smooth and tame,

hazardously even-keeled,

and dangerously boring.
 

Perhaps my life would have remained

inadequate, unchallenged,

never having fully grown

to its frightening potential.
 

Why did this fate befall me?

Well, it did and that is that.

And when I stopped resisting,

allowed the change,

it changed me.

Why not?

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various four-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

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