Help Us Get Our Lives Back

By Andrea Giles, Guest Columnist

I am a 49-year old disabled nurse living in Wyoming. Since 2010, I have been diagnosed with ankylosing spondylitis, phantom limb pain and severe osteoarthritis with multiple major joint deformities.  My remaining knee is now bone on bone, requiring me to use a wheelchair. 

I lost my right leg and half of my pelvis after a total hip replacement due to the osteoarthritis, after which I developed a severe MRSA bacterial infection that resulted in the total hip disarticulation. I’ve had horrible phantom limb pain since the amputation. I also had 2 failed spinal fusions, leaving me with chronic back pain and nerve damage. Since 2010, I have had a total of 52 surgeries.

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From 2010 to 2016, I was treated with opioid medication by a pain management physician, with a stable, safe, effective and legal regimen. I followed all of the requirements, such as urine drug tests, pill counts, using the same pharmacy, etc.

Then, at an appointment in 2016, my physician told me that because of the CDC guidelines, he would no longer prescribe opioid medication to me. I was forced off my high dose (120MME) cold turkey. I was lucky, as I didn’t experience withdrawal symptoms other than the reappearance of severe, intractable pain.

I tried to use NSAIDS for the pain and developed a severe, life threatening reaction to them called Stevens-Johnson Syndrome. I came very close to death and was in intensive care for 6 weeks. Because of that, I will be unable to take NSAIDs for the rest of my life.

Because of the MRSA infection, no physician will perform any further surgeries or steroid injections on me because of the risk of activating another infection.

I have tried acupuncture, massage, chiropractic therapy, mirror therapy, physical therapy, water therapy, many different herbal and nutritional supplements, aromatherapy, music therapy, psychotherapy, hypnotherapy and mindfulness. All without relief of the severe, intractable pain.

When I was forced off opioids, I also lost my career as a very good ER nurse. I went from a functional member of society to a home-bound, miserable person who hurts too badly to keep my house clean like I always prided myself on. Many days I’m in too much pain to even shower or complete daily activities of living.

My husband and children have lost the wife and mother they were able to interact with, go places with, share activities with, everything. I have gained 50 pounds because the pain has left me unable to exercise.

After I stopped taking opioids, I developed hypertension.  Before, my blood pressure had never been higher than 130/80. Now I take medication for high blood pressure and it is still usually around 150/90.

I also developed heart arrhythmia and last year suffered 2 sudden cardiac arrests. I only survived because both times they were witnessed by my husband, who is also an ER nurse, so he immediately started CPR. The cardiologist could find no underlying causes and told me that the arrhythmia and cardiac arrests were probably due to longstanding, untreated severe pain.

There is no physician that I can find that will accept me as a chronic pain patient and my primary care doctor refuses to prescribe opioids anymore. I have literally tried every pain management physician in Wyoming and in Montana, which would have required a 6 to 7-hour drive for each appointment.

I, along with many other intractable pain patients, are working feverishly contacting our congressional representatives, federal government and civil rights groups, begging for help -- for anyone in a position of power to hear our cries of medical abandonment and neglect.

Our pleas mostly fall on deaf ears, as the government has convinced the media and the public that pain patients are all addicts and use opioids only to get high. They site false overdose statistics and refuse to acknowledge that while opioid prescriptions have declined -- causing devastating effects on the pain community -- the overdose rate continues to climb because the clear majority of overdoses are due to heroin, illicit fentanyl or polypharmacy with multiple drugs.

Many intractable pain patients are committing suicide because untreated pain takes away their quality of life and the will to live – something they had with legally prescribed and effective doses of opioid medication.

We are desperate. We don’t want to get high. We just want to make informed decisions with our physicians about our own healthcare, to regain access to opioid medication, and to get our lives back!

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Andrea Giles lives in Wyoming with her family.

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.

Cellphone Towers Amplify Pain in Amputees

By Pat Anson, Editor

For many years there has been a debate about the possible health effects of cell phone towers, power lines and other transmission devices that create electromagnetic fields (EMFs). These magnetic and electromagnetic frequency waves pass right through us, raising concern that they might cause cancer and other adverse health effects.

A new study by researchers at The University of Texas at Dallas suggests that cellphone towers may trigger neuropathic pain, especially in amputees that suffer from phantom limb pain.

"Our study provides evidence, for the first time, that subjects exposed to cellphone towers at low, regular levels can actually perceive pain," said Dr. Mario Romero-Ortega, senior author of the study and an associate professor of bioengineering in the University's Erik Jonsson School of Engineering and Computer Science. "Our study also points to a specific nerve pathway that may contribute to our main finding."

Most of the previous research into the possible health effects of cellphone towers has been conducted on individuals with no diagnosed, pre-existing conditions. This is one of the first studies to look at the effects of EMFs on amputees.

For years, retired Maj. David Underwood noticed that whenever he drove under power lines or near other electromagnetic fields, he would feel a buzz in what remained of his left arm. When traveling by car through Texas' open spaces, the buzz often became more powerful.

"When roaming on a cellphone in the car kicked in, the pain almost felt like having my arm blown off again," said Underwood, an Iraq War veteran who was injured by an improvised explosive device (IED). His injuries resulted in 35 surgeries and the amputation of his left arm.

"I didn't notice the power lines, cellphones on roam or other electromagnetic fields until I first felt them in my arm," says Underwood.

After learning about Underwood’s experiences, Romero-Ortega decided to study the phenomena.

He and his colleagues thought that neuromas -- inflamed peripheral nerve bundles that often form due to injury – could be more sensitive to EMFs. To test their theory in a laboratory, they assigned 20 rats into two groups -- one receiving a nerve injury that simulated amputation, and the other group receiving a sham treatment.

Researchers then exposed the rats to a radiofrequency electromagnetic antenna for 10 minutes, once per week for eight weeks. The antenna delivered a power density similar to what a human would be exposed to 125 feet away from a cellphone tower.

By the fourth week, 88 percent of the rats in the nerve-injured group demonstrated a behavioral pain response, while only one rat in the sham group exhibited pain. After growth of neuroma and resection -- the typical treatment in humans with neuromas who are experiencing pain -- the pain responses persisted.

"Many believe that a neuroma has to be present in order to evoke pain. Our model found that electromagnetic fields evoked pain that is perceived before neuroma formation; subjects felt pain almost immediately," Romero-Ortega said. "My hope is that this study will highlight the importance of developing clinical options to prevent neuromas, instead of the current partially effective surgery alternatives for neuroma resection to treat pain."

Romero-Ortega says since the research produced pain responses in rats similar to those in anecdotal reports from humans such as Major Underwood, the results "are very likely" generalizable to humans.

"There are people who live in caves because they report to be hypersensitive to radiomagnetism, yet the rest of the world uses cellphones and does not have a problem. The polarization may allow people to disregard the complaints of the few as psychosomatic," he said. "In our study, the subjects with nerve injury were not capable of complex psychosomatic behavior. Their pain was a direct response to man-made radiofrequency electromagnetic energy."

At one point in the study, members of the research group showed Underwood video of subjects in the experiment and their response to radiofrequency electromagnetic fields.

"It was exactly the same type of movements I would have around cellphones on roam, power lines and other electromagnetic fields," said Underwood.

Until the study was published online in PLOS ONE, there was no scientific evidence to back up the anecdotal stories of people like Underwood, who reported neuropathic pain around cellphone towers and other technology that produce EMFs. .

Phantom limb pain is a common and painful disorder that many amputees feel after their limbs are removed. The origin of the pain and sensations from the missing limb are not well understood. There are nearly 2 million amputees in the United States, according to the Centers for Disease Control and Prevention.