Cross-Country Bike Ride Raising Awareness About Peripheral Neuropathy

By Madora Pennington, PNN Columnist

Gregory Maassen, a 55-year-old with debilitating peripheral neuropathy, sits in a tent in Ely, Nevada charging his e-bike, drone and cameras. He has been e-biking from Washington DC to San Francisco to raise funds for The Foundation for Peripheral Neuropathy, collecting video for a documentary along the way.

When Maassen was at his most ill, a 3,400-mile solo bike trek would have been only a fantasy. But he dreamed of such things when he was bedbound. Hope, he believes, is a key to improving.

Maassen had been a successful international businessman, until his life changed in 2018 when he found himself covered with tics while working in South Africa. He became sick with flu-like symptoms and later a burning sensation all over his body.

Finding no cause or cure, doctors told Maassen his physical symptoms were from stress and to get psychiatric help. Arguing with them was useless. 

“If you are diagnosed as psychosomatic, you don’t get the right care and treatment,” said Maassen, who was unable to work, slept 18 hours per day and sank into a deep depression.

Eventually, doctors at Johns Hopkins Hospital in Maryland took tissue samples from the skin on his legs. They could see the nerve damage that was causing the consuming, burning pain. Once diagnosed correctly with post-infectious small fiber neuropathy, Maassen was started on medications that helped.

Damaged Nerves

According to the National Institutes of Health, there are more than 100 kinds of peripheral neuropathy, a type of nerve damage. Peripheral neuropathy affects 20 million Americans, but some believe that estimate is low because many patients are misdiagnosed or not tested for neuropathy at all.

Nerves are the network cables of the body, allowing the body to communicate with itself. Some nerves control physical movements, others sense input such as light, touch, temperature and pain, and some regulate automatic processes like breathing and digestion. Damaged nerves transfer incorrect signals or may interrupt them altogether.

Physical injury, infection, auto-immune disease, cancer, and diabetes are some common causes of peripheral neuropathy. Treatment varies depending on where the damage is and the symptoms. Exercise is often recommended because the increased blood flow nourishes nerves and strengthens muscles. 

When Maassen’s doctors recommended exercise, he tried returning to his passion for hiking, but it proved too strenuous. Not being able to hike added to his depression.

Cycling at the time seemed impossible because the area around him was too hilly. He tried swimming, but the chlorine aggravated his symptoms. He was so weak he could not finish even beginner lessons of Pilates he found on YouTube.

Because he is Dutch by birth, cycling is part of Maassen’s culture. It was never a passion of his, just what many people in his native country do. Maassen turned to an electric bike, or e-bike.

Rather than relying solely on the rider’s strength, an e-bike has a small motor that boosts the rider’s pedaling power. Hills and distances can be manageable, even for a debilitated person.

At that time, there was little Maassen could physically do for himself. His wife provided what he describes as “a marathon of support.” But it was also a lonely time for him, as it is for many with chronic illness.

“When you are endlessly sick, you lose your support,” Maassen says. “People don’t want to listen to you. Only your closest friends will continue to reach out.”

Maassen’s e-biking gave him small adventures that restored his fitness, and eased his depression and loneliness. Running an errand or visiting a friend made his brain active and happy by registering something positive. Later, he began kayaking. Very slowly, he rebuilt his strength. Within a few months, Maassen was able to go on long rides. He resumed working the next year and started an e-bike club.

To raise awareness for peripheral neuropathy and encourage the sport of e-biking for all, Maassen embarked on his e-bike journey along the Lincoln Highway on April 2nd of this year. So far, he has raised over $120,000. He has another dream: to establish this route as a new transcontinental cycling route for e-bikers. Unlike cyclists, e-bikers need electricity to re-charge their bikes.

Maassen is an FAA-certified drone pilot. He is using his drone to film, sometimes as he rides. He does interviews on stops and rest days and gets more footage for future documentaries about e-biking and this route.

Maassen still has bad days where he suffers burning pains “like crazy,” but he forces himself to do things and not focus on the pain. While on this journey he makes a conscious effort to fully engage in the moment, relishing the beautiful scenery and the warm people he meets. He stays in campgrounds or cheap hotels to keep the costs of the trip low. His favorite meal is a spicy Italian Subway sandwich.

Maassen recently became a U.S. citizen, but he travels with a souvenir from his home country – Dutch wooden shoes, which helps to start conversations. He still feels sorrow at the horrible period before he was correctly diagnosed. He hopes his ride will contribute to education and awareness.

“Maybe people will recognize the tingling, burning, the sinking into depression. I hope they will go to the Foundation’s website or maybe see a neurologist,” he told me. “With proper support from the medical profession, understanding your limitations, and making lifestyle changes you can make a difference in your life.”

To donate to the Foundation for Peripheral Neuropathy, click here. For updates on Maassen’s ride, click here. To donate to the E-bike Across the U.S. campaign, click here.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

What You Should Know About Neuropathy

By Barby Ingle, PNN Columnist

November is Nerve Pain Awareness Month. Or as we like to call it at iPain, “NERVEmber.”

There are dozens of chronic conditions that involve nerve pain. Neuropathy is a collection of disorders that occur when nerves of the peripheral nervous system are injured or damaged. The peripheral nerves are the ones outside of the brain and spinal cord — in our arms, legs, hands and throughout the body.

There are 3 types of peripheral nerves:  

• Autonomic nerves regulate biological activities that people do not control consciously such as breathing, digesting food and heartbeat. 

• Motor nerves control movements of muscles under conscious control such as walking, grasping things and talking.

• Sensory nerves transmit information about sensory experiences such as feeling a light touch or the pain resulting from a cut.

Some neuropathies affect all three types of nerves, others affect one or two types. Some of the diagnostic terms you might hear are predominately motor neuropathy, predominately sensory neuropathy, sensory-motor neuropathy and autonomic neuropathy.  

Neuropathy often causes pain, tingling or numbness in the hands and feet. Healthcare professionals had a longstanding belief that neuropathy pain is just a symptom of an illness and therefore not a disease. 

We now know that chronic nerve pain is a disease in itself, and the medical community and public are beginning to look at it in this way.

There are approximately 150 known types of neuropathy and the causes of many are not yet known.

Thirty percent of neuropathies are caused by diabetes, 30% are idiopathic or of an unknown cause, and the other 40% are attributed to autoimmune disorders, tumors, genetic, infections, environmental toxins and nutritional imbalances.

A great resource for patients is Dr. Norman Latov’s book, “Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won't Stop.” This book helps us understand the causes of neuropathies in greater detail.

We need to increase awareness, conduct research, provide better clinical training, and better tools for diagnosing and treating neuropathy. Funding for neuropathy research is difficult to obtain because clinical professionals do not fully understand all of the complexities of neuropathy diseases and conditions. Far too often, if a patient does not have a known neuropathic condition, providers will say they could not possibly have a neuropathy.

Nerve Pain Is Not Just a Symptom

But neuropathy is not just a symptom of another disease, it can be a disease in itself.  When medical professionals fail to recognize the disease or causes of neuropathy, it leads to misdiagnosis, failure to diagnose, and delays in getting proper treatment. This can cause further damage to the patient.  

I have had some doctors tell me that neuropathy does not affect the upper body, hands or face, so I could not possibly have neuropathy and it must be something else going on. Know your limitations and your healthcare providers’ limitations. Sometimes it is difficult for them to understand all of our symptoms or the daily problems we face living with neuropathy.

It is important that we increase our communication skills as patients and caregivers. Better communication allows for better care and better answers. Too often our healthcare professionals stop short of proper diagnostic procedures due to assumptions, poor attitudes, and limited treatment options available to them. They also get pressure from insurance companies that limit payments for treatment and testing. Some providers also fail to understand the potential serious impact of these conditions going undiagnosed and undertreated.  

There are times when a doctor might believe that you can do something that you know will increase your symptoms or set off a flare. Communicate these limitations to your doctor and find out their knowledge of your condition.

Here are 5 tips to better access to proper and timely care.  

1. Seek credible information, keep your mind open to new treatments and provide copies of your research to your doctor when necessary. Remember – our providers see many patients day after day and do not always have the time to do research. You may be the first one to bring new information to them.

2. With better treatment options, we will be less frustrated as patients and can make greater progress in our goal to improve daily living.

3. Use a multidisciplinary approach to treatment. Include on your team of providers doctors who specialize in pain management, internal medicine, neuromuscular neurologists, physical therapists and psychologists/psychiatrists. Depending on the type of neuropathy you have, you may want to add doctors of immunology, radiology, oncology, hematology (liver), cardiology, pulmonology, orthopedics, urology, gastroenterology, podiatry, or other medical disciplines. 

4. When you read books by other patients or hear of new treatments in your social circles, be sure to have your own treating provider consult on those ideas. Patients are not one-size-fits-all. What works for someone else may not work for you.

5. Work with a healthcare provider who works with neuropathy patients on a regular basis. They tend to be more familiar with the daily challenges we face as patients.

Until research provides better answers and tools for diagnosing neuropathy, good doctor-patient communication is essential to diagnose and treat neuropathy in a timely manner.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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. 

This column 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.  

Vietnam Veteran: 'I'm Done Fighting'

By Gregg Gaston, Guest Columnist

My story is one of hopelessness. I am 62 years old and a navy Vietnam veteran. I did my time in Vietnam and was discharged honorably as a Chief Petty Officer in 1985 but did not retire.

I went to Kuwait as a logistics advisor for the Kuwait Air Force, stayed there for two years and then returned to the U.S. Desert Storm happened two years after that and I received a phone call wanting to know if I wanted to go back to support the Kuwait Air Force in efforts to retake their homeland. Back I went and stayed through 1995.

In 2002, I developed chronic back pain and had back surgery a few years later. The surgery went badly from the start and was not successful. The pain only grew worse and I was eventually diagnosed with peripheral neuropathy and failed back surgery syndrome. 

Then came the Veterans Administration, which diagnosed me with presumptive Agent Orange exposure. The VA would only pay for treatments for the myriad of things related to Agent Orange, such as pain meds for my legs and medications for high blood pressure. This medicine was prescribed through the local civilian pain management clinic.

I tried every combination of painkillers you can imagine, including but not limited to hydrocodone, methadone, gabapentin and morphine.

My doctor wanted to implant a morphine pain pump, but I refused. 

GREG GASTON

Time passed, and things got worse at the VA. A new voucher system, changing regulations, scheduling problems and constantly changing doctors took its toll on me -- as well as trying to differentiate between what happened during which war. At that point I fired the VA and embarked on my journey into privatized medical care. 

I was exposed to sarin gas during Desert Storm, so by then my ailments included chronic back and neck problems, peripheral neuropathy, post-traumatic stress syndrome (PTSD) and extreme blood pressure problems. No drug completely relieved the pain, but I would take anything that helped even just a little. Over the years my doctors kept admitting they knew I needed more, but pressure from the government and the insurance companies limited what they could prescribe. 

Now we're into the present day and recently my doctor dropped me from three 50mg tramadol down to one 50mg tramadol per day. TRAMADOL for God's sake! I promptly told him where he could stick his tramadol. 

My doctor and I previously had a talk when I was hospitalized with two strokes on the same day. My directives to him were very simple. If you're not going to treat my pain, you're not going to treat anything. With that I stopped taking all my medications. I tried to explain about quality of life, which at this point I had none. It seemed to go over his head. Hospitals now only treat you for why you are in the emergency room, and even though you're admitted that's all they're treating. 

I've given up and am waiting now to die. I've lived a great life and have no expectations of my quality of life improving. 

I'd like to thank the VA, the other government agencies involved, legislatures and my local doctors for putting all their efforts into making things tough on people that are addicted or need pain medication.  

They have a problem which they don't know how to solve, so they’re taking the easy way out by taking all the meds away from EVERYONE. Screw those who really and legitimately need them. 

Common sense is fast disappearing. I'm done fighting, but I'll always be proud of my naval service and of my service to the State of Kuwait. Good luck to us all. 

Greg Gaston grew up in south Jersey and now lives in Texas. He has two daughters, six grandchildren and two great grandchildren.

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.

Medication Could Reverse Peripheral Neuropathy

By Pat Anson, Editor

Blocking a sensory nerve signal with medication could prevent or even reverse symptoms of peripheral neuropathy, according to new research published in the Journal of Clinical Investigation. 

About 20 million Americans suffer from peripheral neuropathy, which often causes a painful stinging or burning sensation in the hands or feet.  

"Peripheral neuropathy is a major and largely untreated cause of human suffering," said lead author Nigel Calcutt, PhD, a professor of pathology at the University of California San Diego School of Medicine. "It has huge associated health care costs."

In studies on diabetic laboratory rats, Calcutt and his colleagues identified a molecular signaling pathway that, when blocked with the drug pirenzepine, promotes sensory neuron growth and prevents or reverses the nerve damage caused by peripheral neuropathy.

The discovery suggests that pirenzepine and other anti-muscarinic drugs – a class of nerve medication that is already used to treat Parkinson’s disease, motion sickness, irritable bowel syndrome and other conditions – could be used as a new treatment for peripheral neuropathy.

"This is encouraging because the safety profile of anti-muscarinic drugs is well-characterized, with more than 20 years of clinical application for a variety of indications in Europe," said senior study author Paul Fernyhough, PhD, a professor in the departments of pharmacology and therapeutics and physiology at the University of Manitoba in Canada. "The novel therapeutic application of anti-muscarinic antagonists suggested by our studies could potentially translate relatively rapidly to clinical use."

The first symptoms of peripheral neuropathy are usually a tingling or numbing sensation in the toes, feet, and hands caused by small fiber nerve damage. The symptoms progress, spread and become more painful, dramatically affecting quality of life.

Researchers say treating the disease in its early stages is key.

“Since small fiber degeneration develops early in the human disease and can be reliably quantified using a variety of minimal or noninvasive techniques that can be applied iteratively, future clinical trials of anti-muscarinic drugs might feasibly focus on reversal of these early indices of neuropathy,” they said.

“Further, as anti-muscarinic drugs were effective in augmenting collateral (nerve) sprouting in our in vitro assay, this new therapeutic approach may be most effective during the early stages of a dying-back neuropathy prior to overt and/or complete fiber loss.”

Nearly 26 million people in the United States have diabetes and about half have some form of neuropathy, according to the American Diabetes Association.  Small fiber neuropathy can also be caused by lupus, HIV, Lyme disease, celiac disease or chemotherapy.

An Opportunity to Make Ourselves Heard

By Richard “Red” Lawhern, Guest Columnist

Many kinds of chronic pain are represented by the readers of Pain News Network -- among them, several forms of peripheral neuropathic pain.  PNN readers might not be aware that a public meeting was recently held by the U.S. Food and Drug Administration on “Patient-Focused Drug Development for Neuropathic Pain Associated with Peripheral Neuropathy.” 

You can watch and listen to the June 10th meeting by clicking here.

The FDA maintains a public gateway for comments on the meeting and its goals.  I urge anyone who wishes to influence this issue to submit their comments. The public comment period ends August 10th. 

As of July 2nd, only 27 comments have been received! 

To get any notice at all, we need 2,700 -- or better yet, 27,000 comments -- not 27.  Silence will almost certainly be maliciously interpreted by the FDA to mean that pain patients are doing okay with presently available remedies, which all of us realize we most decidedly are not.

To make a comment, the FDA gateway may be reached by clicking here.

The following was the questionnaire filled out by meeting attendees.  Follow-up comments may be more effective if focused on these areas:

          Topic 1: Disease symptoms and daily impacts that matter most to patients.

1)  How would you describe your pain associated with peripheral neuropathy? What terms would
you use to describe the most bothersome aspects of pain? (Examples may include stabbing
sensations, electric shocks, burning or tingling, etc.)

2)  Are there specific activities that are important to you but that you cannot do at all or as fully as
you would like because of your neuropathic pain? (Examples may include sleeping
through the night, daily hygiene, participation in sports or social activities, intimacy with a
spouse or partner, etc.)

3)  How does your neuropathic pain affect your daily life on the best days? On the worst days?

4)  How has your neuropathic pain changed over time?

5)  What worries you most about your condition?

Topic 2: Patients’ perspectives on current approaches to treatment

1)  What are you currently doing to help treat your neuropathic pain associated with peripheral neuropathy? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as physical therapy). How has your treatment regimen changed over time, and why?

2)  How well does your current treatment regimen control your neuropathic pain? How well have these treatments worked for you as your condition has changed over time? Would you define your condition today as being well managed?

3)  What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital or clinic for treatment, time devoted to treatment, restrictions on driving, etc.)

4)  Assuming there is no complete cure for your neuropathic pain, what specific things would you look for in an ideal treatment for your neuropathic pain?  What would you consider to be a meaningful improvement in your condition (for example specific symptom improvements or functional improvements) that a treatment could provide?

5)  If you had the opportunity to consider participating in a clinical trial studying experimental treatments for neuropathic pain, what things would you consider when deciding whether or not to participate? (Examples may include how severe your neuropathic pain is, how well current treatments are working for you, your concern about risks, etc.)

Mine was one of the first comments submitted.  After summarizing my background as a chronic pain patient advocate, I offered several inputs.  Two seem particularly aligned with the concerns of PNN readers:

1)  Despite the legal restrictions still placed on medical marijuana, there is ample evidence in patient reports that several strains of this natural plant can be used effectively in pain management for a wide variety of chronic pain conditions, including peripheral neuropathy. Federal funding is needed to bring marijuana research out of the shadows and integrate it into mainstream medicine. If legislative changes are needed, then seek them soon.

2)  The most important near term outcome that this public meeting can reinforce is recognition that legally prescribed opioid medications play an indispensable role in present treatment of chronic neuropathic pain which is refractory to other therapies. In this context, the recently published CDC “voluntary” guidelines on prescription of opioids in adult chronic non-cancer pain need to be withdrawn immediately and rewritten to make this role clear -- for both peripheral neuropathic pain and many other chronic pain conditions.

In their present form, the CDC guidelines have become a de facto restrictive practice standard that is driving doctors out of pain management and thousands of patients into unmitigated agony. The basis for the guidelines is also scientifically weak and may have reflected professional or financial self-interest bias on the part of some participants in the “Core Expert Group” that supported the guidelines.

Insofar as I can determine, the working group did not include a SINGLE practicing board certified pain management specialist who is actively treating patients. Revisions of the guidelines need to reflect a much more patient-centered frame of reference, with explicit recognition that dose levels must be tailored to the individual patient and that effectiveness is highly variable between patients due to genetic factors which make some people poor metabolizers of this class of medication.

Richard “Red” Lawhern, PhD, became a patient advocate 20 years ago after his wife developed trigeminal neuralgia, a chronic facial pain disorder. He presently supports 20 groups on Facebook with a membership of over 15,000 patients and family members.

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.

Can Viagra Treat Diabetic Neuropathy?

By Pat Anson, Editor

An experimental animal study suggest that sildenafil, an erectile dysfunction drug commonly known by the brand name Viagra, may be effective in relieving symptoms of peripheral neuropathy in men with long-term diabetes. The study is published online in PLOS ONE.

Diabetic peripheral neuropathy causes nerves to send out abnormal signals. Patients feel pain, tingling or burning sensation in their toes, feet, legs, hands or arms. Nearly 26 million people in the U.S. have diabetes and about half have some form of neuropathy, according to the American Diabetes Association. 

In previous animal studies, researchers at Henry Ford Hospital in Detroit found that sildenafil improved blood supply to the sciatic nerve and relieved symptoms of neuropathy. However, it was not known if this therapeutic effect held true for long-term peripheral neuropathy, because the diabetic mice used in the previous experiments were relatively young - 16 weeks old.

"Generally, young diabetic animals with an early stage of peripheral neuropathy are used to investigate various drug treatments," said Lei Wang, MD, the Henry Ford neuroscientist who led the research. "But patients with diabetes who are enrolled in clinical trials often are older and have advanced peripheral neuropathy.

To mimic clinical trials in which diabetes patients have advanced peripheral neuropathy, Wang and his colleagues chose male mice with type II diabetes that were 36 weeks old, roughly equivalent to middle age in humans.

In one group, 15 diabetic mice were treated with an oral dose of sildenafil/Viagra every day for eight weeks. A control group of 15 age-matched diabetic mice were treated daily with the same amount of saline.

Researchers found after a battery of nerve and function tests on both groups of mice that sildenafil markedly improved sensory function after six weeks of treatment.

“Treatment of diabetic mice at age 36 weeks with sildenafil significantly increased functional blood vessels and regional blood flow in the sciatic nerve,” said Wang. “Functional analysis showed that the sildenafil treatment considerably improved motor and sensory conduction velocities in the sciatic nerve and peripheral thermal stimulus sensitivity compared with the saline treatment.

“These findings provide new insights into mechanisms underlying the neurological dysfunction of long term diabetic peripheral neuropathy and may lead to the development of a sildenafil therapy for long term diabetic peripheral neuropathy.”

Since becoming available in 1998, Viagra has been found to relieve several other conditions beside erectile dysfunction, such as jet lag and altitude sickness. Some professional athletes also believe that Viagra enhances their performance by opening their blood vessels and increasing oxygen supply to their muscles.