Getting off Painkillers With Lidocaine Infusions

By Crystal Lindell, Columnist

I keep telling myself I’ll write about my weekly lidocaine infusions when I finally have everything figured out. 

I just need to figure out how to pay the $80-a-week co-pay, figure out who can drive me two hours each way to the hospital, and figure out how to manage the extreme fatigue I endure for at least 24 hours after each infusion. And I need to figure out how I can possibly do this every single Friday for the rest of my life.  

And then, once I figure everything out, I can tell you guys how I solved all of it and you will think I’m awesome. 

But I can’t freaking figure anything out.

I started the infusions this summer at the suggestion of my pain management doctor. I did a trial run, which was completely insane, but actually worked to cure my chronic pain for six days. And then I decided to continue the treatments weekly, because that’s how long it lasts for me. 

The first infusion was intense. Symptoms included: randomly crying and laughing because I lost control of my emotions, my lips going numb, extreme fatigue, losing coordination in my legs, nausea, and not being able to make basic life choices afterward — to the extent that I couldn’t even pick out which rice I wanted at Qdoba.  

Thankfully, the symptoms seem to be less intense as you get more of the infusions. I’m still extremely tired after each one though, and unable to drive, and my heart always feels weak. Also, I still can never decide on which rice to get. But I don’t feel like I’ve lost my mind each time. 

Each one takes about two hours at the hospital from start to finish, but that also include a saline flush at the end. I also need a full 24 hours to recover from every single one. And it’s not like an “Oh, I’m so high and this is fun!” 24 hours. It’s more of a hangover/flu/fatigue 24 hours. 

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Also, like I said above, I have an $80 co-pay every week that I cannot afford at all. But actually that’s a great deal because the total bill for each one is about $500. I’m blessed to work full-time from home and have great insurance that mostly covers it. As far as chronic pain patients go, I’m probably in the top 1 percent. But it’s still too much for me. 

Honestly though, the hardest part has been finding rides. It’s a two-hour drive each way I’m and way too out of it afterward to drive myself. I have not been able to find anyone locally who does the infusions because the treatment is relatively new for chronic pain. And my town is so rural that we don’t even have Uber. If I ever have to stop the infusions, it will probably be because of that.

At this point you might be asking, “Crystal, this sounds like A LOT! Why are you even doing this? Why not just stick with hydrocodone?”

Because it freaking works. Really freaking well. And I kind of hate that it works because it is a traumatic experience every time, and I literally lose a day of my life every week and have no money. 

But dang if I haven’t had the best summer of my (post-pain) life this year. I’ve lost 33 pounds. I’ve been walking about six miles a day, six days a week. And while I still have some flares, I have entire pain-free days with NO hydrocodone or any other types of pain meds. And that means I get to live my life AND have complete mental clarity. In short, my quality of life has improved dramatically. 

It’s been miraculous. And thus, I am highly motivated to continue this treatment. 

Since starting the infusions, I have discovered a few helpful things. For example, drinking a full-sugar Gatorade and eating a Snicker’s bar right before the infusion seems to help with the fatigue. And doing a longer saline flush also helps with the after-effects. 

Also, the less I do physically the day of the infusion, the easier it is for me to recover afterward. And it’s important to wear extremely comfortable clothes and a large sweater regardless of the weather because the medication messes with your body temperature. 

I have not figured out the transportation yet, obviously. I actually called my insurance company today to ask if they had any suggestions, and they literally said, “Have you tried Googling it?” 

Yes. I have tried Googling it. 

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I also called the hospital and they told me the only transportation they do is with an ambulance. Cool. Thanks. 

I’ve called a million local pain doctors and infusion centers and had appointments with a handful of them trying to find a local provider. One pain doctor said he could do them for me once a month, but that’s not enough and I’d just end up going on and off hydrocodone all the time. 

Every time I talk to a new pain doctor I beg them to start or expand this treatment so that others with chronic pain can get the same relief I do. 

With all the anti-opioid hysteria you would think doctors would be begging patients to try treatments like this. But alas, they are still sticking to the classic list of things that don’t really work — mindfulness, Cymbalta, nerve blocks, epidurals, and my personal favorite: “You should be taking fewer meds but I have no alternatives to offer.”

In contrast, research is showing that lidocaine infusions can be very effective. In a study recently published in Pain Medicine, they were shown to provide long-lasting and adequate analgesia in 41 percent of patients with chronic pain, most of whom had neuropathic pain. 

I am holding out hope that treatments like this will become more common and less expensive. But there’s another part of me that does worry that pumping my body full of an intense drug every week could have long-term effects that haven’t been discovered yet. 

In the end of course, treatment decisions like this have to be made on an individual level. Only you and your doctor can decide if getting drugged every week is worth it for six pain-free days.

For me though, it definitely is. 

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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.

The 4 H’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

One of my goals in this continuing series on alternative pain care is to help people find an effective treatment that they hadn’t considered before. Even we help just one person, it makes it all worthwhile.

I understand that not all treatment options work for everyone. I am also very aware that some patients would rather only do what is “traditional” for their chronic condition. But what if you could get even more relief by adding another therapy or combining multiple treatment options? I believe a treatment I received took me from a wheelchair to walking, but I know that I would have done even better by adding a multi-modal approach to my pain care.

This segment of my series will cover the 4 H’s: hypnotherapy, hyperbaric therapy, holistic living and herbal therapy.

Hypnotherapy

Hypnotherapy is used in chronic pain treatment to create a subconscious change in patients. It will not “cure” a patient of their pain or physical challenges, but it can help form new responses, thoughts, attitudes, and behavior patterns to help cope with constant pain.

Hypnotherapy is a complementary therapy that utilizes suggestive techniques that patients can use to alter their state of consciousness. Using skilled relaxation techniques, the hypnotherapist makes appropriate suggestions to relax our conscious thoughts in order to focus on the subconscious ones.

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There are multiple approaches to hypnotherapy, so learning about the different types may be helpful. A few of them include cognitive behavioral therapy, Ericksonian therapy, neuro-linguistic programming, cortical integrative therapy, and past life regression.

There is wide endorsement for hypnotherapies that can be used in habit breaking, stress-related challenges, and treating long-term conditions. We have a hypnotherapist on the iPain board of directors and the National Institute for Health and Care Excellence has also endorsed hypnotherapy for multiple uses.

But there is still a need for more testing and research to provide more concrete evidence that hypnotherapy can help and be used in tandem with traditional treatments.

Not everyone responds to hypnotherapy, as our susceptibility and commitment to the process varies from patient to patient, as do the treatments. It could be a single hypnosis session for issues like smoking cessation or it could be weekly visits for chronic pain.

Costs can vary between $50-150 per session. Some insurance companies will cover hypnotherapy, so it’s a good to check with them before making an appointment. If you want to feel more comfortable about hypnosis before trying it, I suggest that you talk to the therapist first and do some research online. If you need help finding a hypnotherapist in your area, you can start by clicking here.

Hyperbaric Therapy

Hyperbaric oxygen therapy is painless to participate in. It was originally created for deep-sea divers to help them overcome decompression sickness, but has also been used for decades to treat infections, severe burns and carbon monoxide poisoning. More recently it has been found to help people with fibromyalgia and other chronic illnesses.

Many chronic pain patients have trouble with vascular constriction and getting proper oxygen throughout the body, especially to areas that most affected by pain.

Hyperbaric therapy helps improve oxygen levels, which reduces nerve pain, fights infections, and promotes cell growth and wound healing.

Patients undergoing hyperbaric oxygen therapy sit in a pressurized room or tube. The higher air pressure allows lungs to gather more oxygen than they would normally, resulting in 10 to 15 times the normal amount of oxygen being brought to each cell.

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This stimulates cell healing and provides vital nutrients to cells that are not functioning correctly. When our cells are not getting the proper amount of oxygen and nutrients, we lose energy, tissue becomes malnourished, and it delays or prevents healing.

Most patients using hyperbaric therapy will require a few rounds of treatment over several weeks to get results. The cost can be quite high, but if you can get your provider to test your vascular constriction with a Doppler Study or another measuring device, your insurance may pay for this treatment.

Holistic Living

Holistic living is more of a lifestyle approach than a treatment, because it is aimed at improving the mind, body and spirit. Once we bring harmony into our lives physically, mentally, spiritually and emotionally, we create a balance that can make the tough times of living with chronic pain more bearable.

The good news is you can start consciously living in a holistic manner at any time. Taking one step at a time is the way to get on the path of self-improvement. Living holistic is about being conscious of all aspects of who you are and the choices you make.  

Holistic living also makes use of massage, acupuncture, acupressure, herbal medicine and other healing options. These are typically out of pocket expenses, so access to them can be limited. But with YouTube, Zubia and other online platforms, it’s easy to find videos – like the one below --to help learn how to live holistically on your own.

Herbal Therapy

Herbal therapy was first introduced to me back in college when I had a cheerleading injury and a friend took me to Chinatown to see a doctor who had been treating her.

I thought it was such a strange experience. He looked at my eyes, my fingers and my tongue. What could he see? What was he looking for? I could hardly understand him, but when he was done, we headed into a room with all kinds of herbs and plants stored in bins.

He walked around the room, chose some items for me, and wrote out on a piece of paper what to do. I took the stuff back to my dorm room and made it into a tea that I drank a little of each day. It was to help with inflammation from my injury.

Some people, including my friend, just ate the herbs and plants. But I didn’t like the taste, so making the tea was easier for me to get it down.

Just because an herb or plant is in its natural state doesn’t make it right for all of us. You should check with an herbalist who has some training in this area. Herbs can interact with some over-the-counter and prescription medications. And be sure to tell your healthcare providers about any herbal medications you are taking.

This month’s spotlight on H’s that can help with pain care are meant to be idea starters. As always, I look forward to hearing from those of you who have tired any of these modalities and whether it improved your general health and to chronic pain specifically.

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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 FoundationShe 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.

FDA Approves Advanced Spinal Cord Stimulator

By Pat Anson, Editor

The U.S. Food and Drug Administration has approved a new spinal cord stimulator developed by Medtronic that can be managed, tracked and updated remotely on a Samsung Galaxy tablet.

The Intellis stimulator is designed for patients with chronic, intractable pain of the trunk and/or limbs.

The Intellis platform can track patient activity 24/7 on the Samsung Galaxy Tab S2 tablet, enabling physicians to personalize the settings for individual patients and monitor their progress using Medtronic’s Evolve software system. 

"The launch of the Intellis platform isn't just about a new device, but about combining cutting edge hardware with optimal therapy through the Evolve workflow to enable personalized, long-term pain relief," said Marshall Stanton, MD, president of Medtronic's Pain Therapies division.

“The Intellis platform was designed based on what is most important to patients and physicians. We considered the entire patient journey - starting with the primary goal of optimal pain relief and access to important diagnostic tools, like MRI, to ease of use with simplified programming, faster recharge and a smaller implant."

MEDTRONIC PHOTO

MEDTRONIC PHOTO

Spinal cord stimulators (SCS) are often considered the treatment of last resort for chronic back and leg pain, because the devices have to be surgically implanted near the spine and connected to batteries placed under the skin. The implants send electrical impulses into the spine to mask pain.

Some patients find the stimulators ineffective and have them removed. According to one study, only about half of patients who received a traditional SCS device have a 50 percent reduction in their back and leg pain. New technologies are being developed to make the devices smaller, more effective and easier to recharge.

Medtronic says Intellis is the world's smallest fully implantable SCS neurostimulator. Its battery can be fully recharged from empty to full in about one hour and physicians can estimate recharge intervals based on therapy settings. Software upgrades are also easier to get through Samsung Galaxy tablets.

"We are excited to partner with Medtronic in their aim to simplify programming, and streamline therapy management with the Intellis platform," said Dr. Dave Rhew, chief medical officer and head of Healthcare and Fitness for Samsung Electronics America. "Samsung's Galaxy tablets-secured by the HIPAA-ready Samsung Knox mobile security platform-will support future Medtronic therapies and over the air (OTA) software upgrades to ensure clinicians using Intellis have access to the most up-to-date solutions."

One of the first implantation procedures using the Intellis platform was performed at Duke University Medical Center.

"Chronic pain is challenging to manage. Having real-time data can provide more information about patients' quality-of-life changes. This platform represents a welcome new option for managing some kinds of chronic pain," said Lance Roy, MD, a pain medicine specialist at Duke University Medical Center.

Vitamin D Levels May Help Predict Risk of MS

By Pat Anson, Editor

Vitamin D levels in the blood may help predict whether a person is at risk of developing multiple sclerosis, according to a large new study published online in the journal Neurology.

The findings provide the best evidence to date that low levels of Vitamin D may be a contributing factor to multiple sclerosis (MS), a chronic and incurable disease which attacks the central nervous system.

“There have only been a few small studies suggesting that levels of vitamin D in the blood can predict risk,” said study author Kassandra Munger, ScD, of the Harvard T.H. Chan School of Public Health in Boston. “Our study, involving a large number of women, suggests that correcting vitamin D deficiency in young and middle-age women may reduce their future risk of MS.”

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Munger and her colleagues analyzed a database derived from blood samples taken during prenatal testing of over 800,000 Finnish women. Using hospital and prescription records, they were able to identify 1,092 of those women who were later diagnosed with MS. They were compared to a control group of 2,123 women who did not develop the disease.

Of the women who developed MS, 58% had deficient blood levels of vitamin D, compared to 52% of the women who did not develop the disease.

Deficient blood levels of vitamin D were defined as fewer than 30 nanomoles per liter (nmol/L). Insufficient levels were 30 to 49 nmol/L and adequate levels were 50 nmol/L or higher.

Researchers found that with each 50 nmol/L increase in vitamin D in the blood, the risk of developing MS later in life decreased by 39 percent. In addition, women who had deficient levels had a 43% higher risk of developing MS than women who had adequate levels.

“More research is needed on the optimal dose of vitamin D for reducing risk of MS,” said Munger. “But striving to achieve vitamin D sufficiency over the course of a person’s life will likely have multiple health benefits.

"Our results further support and extend those of previous prospective studies of (Vitamin D) levels in
young adults and risk of MS, and suggests that many individuals are exposed to an increased MS risk that
could be reduced by broad population-based programs to prevent vitamin D deficiency."

Participants in the study were primarily white women, so the findings may not be the same for other racial groups or men. Also, while the blood samples were taken an average of nine years before MS diagnosis, it is possible some women may have already had MS when their blood was drawn and were not yet showing symptoms of the disease.

MS causes numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain. Symptoms begin with a series of irregular relapses, and after about 20 years MS worsens into a secondary progressive stage of the disease.

Low blood levels of vitamin D – known as the “sunshine vitamin”-- have previously been linked to an increased risk of developing MS. Danish researchers found that MS patients who spent time in the sun every day during the summer as teenagers developed the disease later in life than those who spent their summers indoors.

Ultraviolet rays in sunlight are a principal source of Vitamin D, which has a wide range of positive health effects, such as strengthening bones and inhibiting the growth of some cancers.

Lady Gaga: Chronic Pain Patients Shouldn’t Feel Alone

By Pat Anson, Editor

It’s rare for a celebrity to talk openly their health problems, but Lady Gaga is speaking up about her battle with fibromyalgia and chronic hip pain. 

During a news conference at the Toronto Film Festival promoting her Netflix documentary Gaga: Five Foot Two, Lady Gaga fought back tears as she described how “liberating” it was for the film to cover her decade-long struggle with chronic pain.

“There is an element and a very strong piece of me that believes pain is a microphone. My pain does me no good unless I transform it into something that is. So I hope people watching it who do struggle with chronic pain know that they're not alone. It's freeing for me ... and I want people that struggle with it to hear me,” the 31-year old entertainer said.

“There is a degree of self-deprecation and shame with feeling in pain a lot. And I want people that watch it — that think there's no way I live (with chronic pain) because they see me dance and sing and don't think that could possibly be — to know I struggle with things like them. I work through it and it can be done. We have to stick together. I don't have to hide it because I'm afraid it's weak.”

In a teaser for the film, there are shots of Lada Gaga wincing in pain as she receives injections on a surgical table. 

"It was incredibly hard, on a basic fundamental human level, to be near someone experiencing pain like that. There's nothing you can do, beyond filming," said director Chris Moukarbel.

"I felt I needed to continue to roll. She was very aware of people struggling with similar chronic pain. She's not even sure how to deal with it.”

a scene from "GAGA: Five FOOT TWO"

a scene from "GAGA: Five FOOT TWO"

“It's a part of me, and I'm grateful to Chris for caring. The compassion is overwhelming. That's why it makes me emotional. It's very touching,” Lady Gaga said.

The singer’s struggle with chronic pain reportedly began with physical and emotional trauma from a sexual assault. She later suffered a hip injury, but hid her pain from fans and her own staff until she required surgery in 2013. The singer now reportedly suffers from synovitis, an inflammation of the joint that can be caused by overuse or injury.

“I hid my injury until I couldn’t walk,” Lady Gaga told Arthritis Magazine in March. “I had a tear on the inside of my joint and huge breakage.

Lady Gaga also recently acknowledged that she has pain from fibromyalgia.

"I wish to help raise awareness & connect people who have it," she wrote in a Tweet.

"Thought ice helped #Fibromyalgia. I was wrong & making it worse. Warm/Heat is better. Electric Heated Blanket, Infrared Sauna, Epsom Baths."

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Last November, Lady Gaga posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket. Months later, she set aside her pain and soared around a stadium during a spectacular halftime show at theSuper Bowl.  

The singer told reporters in Toronto she was going to take a break from performing and  “slow down for a moment, for some healing.”  That prediction came true days later when she cancelled plans for a concert in Brazil because of severe pain.

"I was taken to the hospital its not simply hip pain or wear & tear from tour, I'm in severe pain. I'm in good hands w/ the very best doctors," she wrote on Twitter. "Brazil, I'm devastated that I'm not well enough 2 come to Rock In Rio. I would do anything 4 u but I have to take care of my body right now."

4 F’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

So far in my monthly series on alternative pain treatments, we’ve looked at 4 A’s (acupressure, acupuncture, aromatherapy, art therapy), 4 C’s (Calmare, Chinese medicine, chiropractic, craniosacral therapy) and 4 E’s (energy therapy, electromagnetic therapy, equine therapy, exercise).

I like my alphabet series because it offers pain sufferers a look outside the tool box for therapies they may not have considered. I know that insurance does not cover many of these treatments. And I know that nothing I am suggesting is going to cure anyone, but it may offer some pain relief. I suppose that’s the cheerleader in me -- keep going even if your team is losing and find a way to win.

Looking through the reader comments to my series, I found one from “Fred” that I liked:

"You read many commenters who say, 'I've tried them all, nothing works.' Wrong! There are hundreds, possibly thousands of potential alternative/complimentary pain modalities. Anyone claiming, 'I've done 'em all,' that person would have to be like 150 years old, given the time and dedication many require to show real effectiveness! NO ONE has done 'em all. There's always something left to try."

I want to thank Fred for his comment and to let him know that I agree with him. Far too often we say that we have tried everything and nothing works. But that doesn’t mean we should stop looking or trying.

The four F’s we’ll look at this month are faith healing, Feldenkrais Method, food, and functional medicine. Please contact a trained provider who can clear you before you try any of these suggestions, especially when it comes to movement and nourishment.  

Faith Healing

Faith healing is the practice of prayer or rituals that solicit divine intervention in spiritual and physical healing. This practice can include the “laying on of hands” and miracles.

I personally don’t know anyone who had a full recovery from divine intervention, but I did have a near death experience that taught me some important lessons.

I learned that I needed to have more patience with people and that human connection has a purpose. It helped me see my purpose in life and why I was here on earth. It didn’t take away my physical pain, but it helped me learn how to stay positive through it.

Many others have claimed miraculous recoveries through prayer. According to a Newsweek poll, 72 percent of Americans believe that praying to God can cure someone. I do believe it can happen, I just haven’t seen it yet.

In a report on faith healing, the American Cancer Society tells us that "available scientific evidence does not support claims that faith healing can actually cure physical ailments" and warns that "death, disability, and other unwanted outcomes have occurred when faith healing was elected instead of medical care for serious injuries or illnesses."

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When parents have used faith healing instead of medical care, some children have died that otherwise would have been expected to live. Similar outcomes are found in adults who rely solely on faith healing.

I continue to say my daily prayers and remain a believer that all things are possible, even if I haven’t seen it yet personally. But I will continue with my other treatment options.  

Feldenkrais Method

The Feldenkrais Method is a type of exercise therapy devised and named after Moshé Feldenkrais. The method is claimed to reorganize connections between the brain and body, and to improve body movement and the psychological state.

I am a big believer in these techniques, used by Dr. Victor Pedro, who treats multiple friends of mine. I have seen them go into remission and remain well for years, although this treatment is not cost-effective for many.  

Supporters of the Feldenkrais Method claim it can repair impaired connections between the motor cortex and the body, which benefits body movement and improves their sense of well being. They also believe that it can be helpful with many pain conditions such as autism and multiple sclerosis. 

The Feldenkrais Guild of North America claims that this treatment option allows people to rediscover their innate capacity for graceful, efficient movement and that these improvements will often enhance function in other aspects of life. The treatment consists of repetitive movements with proper body alignment, done with or without a provider.

You can watch many videos online to learn and practice the Feldenkrais Method of exercise. Here is a sample:

Food

The food that we put in our bodies is one of the underlying causes of inflammation, which increases chronic pain. This is also one area that we have complete control over and don’t need insurance to cover.

I myself have used a low-carb, high fat diet – known as the ketogenic or paleo diet -- to help lower inflammation and lose weight. I thought the diet was going to be much more expensive, but it turned out costing about the same as what I was spending on my regular food budget.

I also discovered I was not as hungry or constantly looking for snack foods as I was when I was eating my regular “American” diet. We underestimate how inflammation plays a major role in chronic pain. Knowing what foods can increase inflammation can make a big difference in how we manage pain.

One of the things I have done with my diet is add some “super foods.” Several research studies have shown that the compounds in these natural foods can reduce inflammation and even block pain signals. Research also shows that super foods can increase brain chemicals, such as serotonin, which can stop depression and make you feel happier.

The super foods that you could add to your diet to deal with chronic pain naturally include burdock root, hot peppers, yogurt, fresh ginger root, cannabis, turmeric, fenugreek leaves, onions, strawberries, garlic, olive oil, and salmon.

For more information on the ketogenic diet, I suggest reading Quick & Easy Ketogenic Cooking by Maria Emmerich.

Functional Medicine

I believe functional medicine (FM) is the future of conventional medicine. In FM, the provider works to address the root cause of disease and views the body as one system, not a collection of independent organs to be treated separately. This type of care lets us focus on treating the whole body, not just the symptoms.

I have had providers who were specialists who only looked at one body part or organ and were not willing to consider that it was all interlinked. Finding providers who believe in FM was very important to me. Having this patient centered approach to my care helped me be my own best advocate and helped my providers do a better job getting me into a state of remission and controlled pain levels.

My providers spend time with me, between 45 to 90 minutes per visit. We go over my medical history, genetic vs. environmental aspects, and lifestyle factors. I love functional medicine because it helps support individualized treatment.

With the sharp increase in people who have one or more chronic illnesses such as diabetes, heart disease, mental illness, autoimmune disorders and  cancer, we need a system of care that puts the spotlight on everyone as a whole person.

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The old way of practicing medicine is going out the window. We need to demand that all providers are on board with FM practices. We no longer want to be cookie cutter patients. We each need a unique approach to our care, and it is possible with better training for providers, research, and patient engagement.

Most providers are not adequately trained to assess the underlying causes of chronic diseases. Most can’t even adequately provide strategies such as nutrition, diet and exercise to treat and prevent future illnesses in their patients.

As patients we must push for FM and a more holistic approach. Finding a provider who is trained in FM involves them understanding disease origins, prevention, and treatment of chronic illnesses. With FM the unique genetic and environment of each patient is considered and an integrative, science-based care approach is employed using both traditional and alternative treatment options. As we focus on both internal (mind, body, and spirit) and external (physical and social environment) we will see greater improvements with our health, life and overall ability to function.

Do you have any suggestions? What alternative pain therapies have you tried that succeeded?  The more we share, the more others can see what they are able to do, what new treatments are available, and what old ones they may have overlooked.

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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 FoundationShe 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.

Smart Underwear May Prevent Back Pain

By Pat Anson, Editor

We have smartphones, smart cars, smart appliances and smart watches.

So perhaps it was inevitable that someone would invent smart underwear.

That’s exactly what a team of engineering students at Vanderbilt University in Tennessee have done, although their underwear isn’t designed to park your car, count your steps or check your blood pressure.

They’ve invented a bio-mechanical undergarment that helps prevent back pain by reducing stress on back muscles. The device consists of two sections, one for the chest and the other for the legs, which are connected by straps across the middle back, with natural rubber pieces at the lower back and glutes. It looks like something Ben Affleck might wear in the latest Batman movie.

"I'm sick of Tony Stark and Bruce Wayne being the only ones with performance-boosting supersuits. We, the masses, want our own," jokes Erik Zelik, an assistant professor of mechanical engineering at Vanderbilt who led the design team.

"The difference is that I'm not fighting crime. I'm fighting the odds that I'll strain my back this week trying to lift my 2-year-old."

Zelik experienced back pain after repeatedly lifting his toddler son, which got him thinking about wearable tech solutions. Low tech belts and braces designed to give support to tired back muscles have been on the market for years, but many are bulky, uncomfortable or just plain unattractive.

VANDERBILT UNIVERSITY

VANDERBILT UNIVERSITY

"People are often trying to capitalize on a huge societal problem with devices that are unproven or unviable," said Dr. Aaron Yang, who specializes in nonsurgical treatment of the back and neck at Vanderbilt University Medical Center. "This smart clothing concept is different. I see a lot of health care workers or other professionals with jobs that require standing or leaning for long periods. Smart clothing may help offload some of those forces and reduce muscle fatigue."

The new, as yet unnamed device is designed so that users engage it only when they need it – like moving furniture or lifting 2-year old toddlers. A simple double tap to the shirt tightens the straps. When the task is done, another double tap releases the straps so the user can sit down comfortably and go about their business.  

The device can also be controlled by an app, with users tapping their phones to engage the smart clothing wirelessly via Bluetooth.

Eight people tested the undergarment by leaning forward and lifting 25 and 55-pound weights at a series of different angles. The device reduced activity in their lower back extensor muscles by an average of 15 to 45 percent for each task.

"The next idea is: Can we use sensors embedded in the clothing to monitor stress on the low back, and if it gets too high, can we automatically engage this smart clothing?" Zelik said.

The team unveiled the undergarment last week at the Congress of the International Society of Biomechanics in Brisbane, Australia, where it won a Young Investigator Award for engineering student Erik Lamers, one of the team members. The device makes its U.S. debut next week at the American Society of Biomechanics conference in Boulder, Colorado

The smart clothing project is funded by a Vanderbilt University Discovery Grant, a National Science Foundation Graduate Research Fellowship and a National Institutes of Health Career Development Award.

When Chronic Wounds Don’t Heal

By Marisa Taylor, Kaiser Health News

Carol Emanuele beat cancer. But for the past two years, she has been fighting her toughest battle yet. She has an open wound on the bottom of her foot that leaves her unable to walk and prone to deadly infection.

In an effort to treat her diabetic wound, doctors at a Philadelphia clinic have prescribed a dizzying array of treatments. Freeze-dried placenta. Penis foreskin cells. High doses of pressurized oxygen. And those are just a few of the treatment options patients face.

“I do everything, but nothing seems to work,” said Emanuele, 59, who survived stage 4 melanoma in her 30s. “I beat cancer, but this is worse.”

The doctors who care for the 6.5 million patients with chronic wounds know the depths of their struggles. Their open, festering wounds don’t heal for months and sometimes years, leaving bare bones and tendons that evoke disgust even among their closest relatives.

Many patients end up immobilized, unable to work and dependent on Medicare and Medicaid. In their quest to heal, they turn to expensive and sometimes painful procedures, and products that often don’t work.

CAROL EMANUELE (KAISER HEALTH NEWS)

CAROL EMANUELE (KAISER HEALTH NEWS)

According to some estimates, Medicare alone spends at least $25 billion a year treating these wounds. But many widely used treatments aren’t supported by credible research. The $5 billion-a-year wound care business booms while some products might prove little more effective than the proverbial snake oil. The vast majority of the studies are funded or conducted by companies who manufacture these products. At the same time, independent academic research is scant for a growing problem.

“It’s an amazingly crappy area in terms of the quality of research,” said Sean Tunis, who as chief medical officer for Medicare from 2002 to 2005 grappled with coverage decisions on wound care. “I don’t think they have anything that involves singing to wounds, but it wouldn’t shock me.”

A 2016 review of treatment for diabetic foot ulcers found “few published studies were of high quality, and the majority were susceptible to bias.” The review team included William Jeffcoate, a professor with the Department of Diabetes and Endocrinology at Nottingham University Hospitals Trust. Jeffcoate has overseen several reviews of the same treatment since 2006 and concluded that “the evidence to support many of the therapies that are in routine use is poor.”

A separate Health and Human Services review of 10,000 studies examining treatment of leg wounds known as venous ulcers found that only 60 of them met basic scientific standards. Of the 60, most were so shoddy that their results were unreliable.

Paying for Treatments That Don't Work

While scientists struggle to come up with treatments that are more effective, patients with chronic wounds are dying.

The five-year mortality rate for patients with some types of diabetic wounds is more than 50 percent higher than breast and colon cancers, according to an analysis led by Dr. David Armstrong, a professor of surgery and director of the Southern Arizona Limb Salvage Alliance.

Open wounds are a particular problem for people with diabetes because a small cut may turn into an open crater that grows despite conservative treatment, such as removal of dead tissue to stimulate new cell growth.

More than half of diabetic ulcers become infected, 20 percent lead to amputation, and, according to Armstrong, about 40 percent of patients with diabetic foot ulcers have a recurrence within one year after healing.

“It’s true that we may be paying for treatments that don’t work,” said Tunis, now CEO of the nonprofit Center for Medical Technology Policy, which has worked with the federal government to improve research. “But it’s just as tragic that we could be missing out on treatments that do work by failing to conduct adequate clinical studies.”

Although doctors and researchers have been calling on the federal government to step in for at least a decade, the National Institutes of Health and the Veterans Affairs and Defense departments haven’t responded with any significant research initiative.

“The bottom line is that there is no pink ribbon to raise awareness for festering, foul-smelling wounds that don’t heal,” said Caroline Fife, a wound care doctor in Texas. “No movie star wants to be the poster child for this, and the patients … are old, sick, paralyzed and, in many cases, malnourished.”

kaiser health news

kaiser health news

The NIH estimates that it invests more than $32 billion a year in medical research. But an independent review estimated it spends 0.1 percent studying wound treatment. That’s about the same amount of money NIH spends on Lyme disease, even though the tick-borne infection costs the medical system one-tenth of what wound care does, according to an analysis led by Dr. Robert Kirsner, chair and Harvey Blank professor at the University of Miami Department of Dermatology and Cutaneous Surgery.

Emma Wojtowicz, an NIH spokeswoman, said the agency supports chronic wound care, but she said she couldn’t specify how much money is spent on research because it’s not a separate funding category.

“Chronic wounds don’t fit neatly into any funding categories,” said Jonathan Zenilman, chief of the division for infectious diseases at Johns Hopkins Bayview Medical Center and a member of the team that analyzed the 10,000 studies. “The other problem is it’s completely unsexy. It’s not appreciated as a major and growing health care problem that needs immediate attention, even though it is.”

Commercial manufacturers have stepped in with products that the FDA permits to come to market without the same rigorous clinical evidence as pharmaceuticals. The companies have little incentive to perform useful comparative studies.

“There are hundreds and hundreds of these products, but no one knows which is best,” said Robert Califf, who stepped down as Food and Drug Administration commissioner for the Obama administration in January. “You can freeze it, you can warm it, you can ultrasound it, and [Medicare] pays for all of this.”

When Medicare resisted coverage for a treatment known as electrical stimulation, Medicare beneficiaries sued, and the agency changed course.

“The ruling forced Medicare to reverse its decision based on the fact that the evidence was no crappier than other stuff we were paying for,” said Tunis, the former Medicare official.

In another case, Medicare decided to cover a method called “noncontact normothermic wound therapy,” despite concerns that it wasn’t any more effective than traditional treatment, Tunis said.

“It’s basically like a Dixie cup you put over a wound so people won’t mess with it,” he said. “It was one of those ‘magically effective’ treatments in whatever studies were done at the time, but it never ended up being part of a good-quality, well-designed study.”

Questionable Research

The companies that sell the products and academic researchers themselves disagree over the methodology and the merits of existing scientific research.

Thomas Serena, one of the most prolific researchers of wound-healing products, said he tries to pick the healthiest patients for inclusion in studies, limiting him to a pool of about 10 percent of his patient population.

“We design it so everyone in the trial has a good chance of healing,” he said.

“If it works, like, 80 or 90 percent of the time, that’s because I pick those patients,” said Serena, who has received funding from manufacturers.

But critics say the approach makes it more difficult to know what works on the sickest patients in need of the most help.

Gerald Lazarus, a dermatologist who led the HHS review as then-director of Johns Hopkins Bayview Medical Center wound care clinic, said Serena’s assertion is “misleading. That’s not a legitimate way to conduct research.” He added that singling out only healthy patients skews the results.

The emphasis on healthier patients in clinical trials also creates unrealistic expectations for insurers, said Fife.

“The expensive products … brought to market are then not covered by payers for use in sick patients, based on the irrefutable but Kafka-esque logic that we don’t know if they work in sick people,” she said.

“Among very sick patients in the real world, it may be hard to find a product that’s clearly superior to the others in terms of its effectiveness, but we will probably never find that out since we will never get the funding to analyze the data,” added Fife, who has struggled to get government funding for a nonprofit wound registry she heads. Not surprisingly, she said, the registry data demonstrate that most treatments don’t work as well on patients as shown in clinical trials.

Patients say they often feel overwhelmed when confronted with countless treatments.

“Even though I’m a doctor and my wife is a nurse, we found this to be complicated,” said Navy Cmdr. Peter Snyder, a radiologist who is recovering from necrotizing fasciitis, also known as flesh-eating bacteria. “I can’t imagine how regular patients handle this. I think it would be devastating.”

To heal wounds on his arms and foot, Snyder relied on various treatments, including skin-graft surgery, special collagen bandages and a honey-based product. His doctor who treats him at Walter Reed National Military Medical Center predicted he would fully recover.

peter snyder examined at walter reed medical center (khnphoto)

peter snyder examined at walter reed medical center (khnphoto)

Such treatments aren’t always successful. Although Emanuele’s wound left by an amputation (of her big toe) healed, another wound on the bottom of her foot has not.

Recently, she looked back at her calendar and marveled at the dozens of treatments she has received, many covered by Medicare and Medicaid.

Some seem promising, like wound coverings made of freeze-dried placenta obtained during births by cesarean section. Others, not — including one plastic bandage that her nurse agreed made her wound worse.

Emanuele was told she needed to undergo high doses of oxygen in a hyperbaric chamber, a high-cost treatment hospitals are increasingly relying on for diabetic wounds. The total cost: about $30,000, according to a Medicare invoice.

Some research has indicated that hyperbaric therapy works, but last year a major study concluded it wasn’t any more effective than traditional treatment.

“Don’t get me wrong, I am grateful for the care I get,” Emanuele said. “It’s just that sometimes I’m not sure they know what they’re using on me works. I feel like a guinea pig.”

Confined to a wheelchair because of her wounds, she fell moving from the bathroom to her wheelchair and banged her leg, interrupting the healing process. Days later, she was hospitalized again. This time, she got a blood infection from bacteria entering through an ulcer.

She has since recovered and is now back on the wound care routine at her house.

“I don’t want to live like this forever,” she said. “Sometimes I feel like I have I no identity. I have become my wound.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

The Four E’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

Continuing with my series on alternative pain therapies, I find it interesting that those who have not tried the treatments I cover are often the most vocal about whether they help or not. 

I want to remind readers that I am not suggesting that these are cures for any chronic pain condition, but more a way to possibly lower pain and stress levels, and increase daily activities. 

Also, please consider that pain can be bio-psycho-social in nature and may not always have a physical cause. I work with over 150 conditions in my advocacy work, and have learned that not all patients -- even with the same diseases -- respond to the same treatments. Most of the people I know that are in remission or have learned to lower or manage their pain levels are using multiple techniques and treatment options. 

The four E’s I will introduce you to are energy therapy, electromagnetic therapy, equine therapy, and exercise. 

Energy Therapy

Energy therapies, such as therapeutic touch and magnetic healing, are commonly referred to as bio-field therapies in the alternative medicine area. Supporters of these therapies believe “energy fields” flow through and around our bodies, and that when energy is flowing freely we have good emotional, physical and spiritual health. When the energy field is blocked, we become ill.

In therapeutic touch, also known as Rieke, attendants use their hands to find “blockages” and touch the patient at the blockage sites to remove the harmful energy, replacing it with their own healthy energy. In magnetic healing, the therapist places magnets at the blockage sites.

I tried an energy therapy session once and was actually in more pain when the therapist stopped than when she started.  I remained fully clothed and lay down on a massage table as the therapist moved her hands just above my body.  Because I have Reflex Sympathetic Dystrophy (RSD) and parts of my body are very sensitive, I choose the version with no touch. 

It didn’t work for me and I was told it was because the therapist didn’t follow my energy field properly. I was stressed the whole time, worried that she was going to touch me and how painful it would be. 

Energy therapy is mainly used to ease symptoms such as anxiety, fatigue, pain, nausea or vomiting. Some believe it even improves quality of life. Many people say that they feel more relaxed, calm and peaceful after an energy therapy session. I was afraid the whole time, so I didn’t get this effect. 

Some studies suggest that energy therapies work because the person experiences the focused and caring presence of a therapist, rather than a change in energy flow. More research is needed to understand the effectiveness of energy therapy, but if you are looking for a way to help lower stress and relax, this maybe a choice for you.  

Electromagnetic Therapy

Proponents of electromagnetic therapy (ET) claim that by applying low frequency electromagnetic radiation to your body that it can help lower pain levels, promote cell growth, improve blood circulation and bone repair, increase wound healing, and enhance sleep.

I tried this therapy for three months with an ET mat that I would lay on for an hour each day. The heat from the mat was relaxing and helped my circulation, but I can’t say that it worked any better than a heating blanket.

The practitioner who had me try the mat said that it could help with a wide range of symptoms and conditions, such as headaches, migraines, chronic pain, nerve disorders, spinal injuries, diabetes, arthritis, and heart disease. I think due to the increase in blood flow from the heated mat that I did get some temporary and slight pain relief.

The National Institutes of Health says there is a lack of scientific evidence about electromagnetic therapy and the American Cancer Society warns that "relying on electromagnetic treatment alone and avoiding conventional medical care may have serious health consequences." 

Equine Therapy

As the name implies, equine therapy makes use of horses (and sometimes elephants, cats, dogs and even dolphins) to help promote emotional growth. It helps to try it with an animal that can mirror human behavior. A horse is considered most effective because it can respond immediately and give feedback to the patient’s actions and behaviors.

Last year the movie "Unbridled" was released and it covered this type of therapy for physical and emotional pain. The movie is unforgettable and an uplifting story of redemption, healing, and overcoming some of life’s greatest obstacles. 

Equine therapy is usually offered for patients with attention deficit problems, anxiety, autism, dementia, delays in mental development, Downs’s syndrome, depression, trauma and brain injuries, behavior and abuse issues, and other mental health issues. 

The reason why eqine therapy has been recognized as an important area in the medical field is that some horse riders with disabilities have proven their remarkable equestrian skills in various national and international competitions. The basis of the therapy is that because horses behave similarly to humans in their social and responsive behavior, it is easier for patients to establish connection with a horse. 

I think this is an interesting concept when it comes to emotional pain. Although I haven’t done equine therapy myself, I have been intrigued over the years with the idea. That said, caring for a dog was hard for me and I can’t imagine taking care of a horse. 

Exercise

I think the word “exercise” has many different connotations for every person who hears it. Before starting any exercise program, precautions are needed to make sure you can do physical activities without further damage to your body. I have experienced unpleasant and painful exercise, which only served to make my pain worse. 

I have found that there are some exercises that are better for me than others. For instance, I can walk now for a few minutes each hour. That is more than I have done in years and I had to work my way up to it. Other pain friends can do a moderate program on stationary bicycles for 30 minutes at a time a few times a week. 

I have one friend who is doing full weight bearing activities. It causes her flares, yet she chooses to keep pushing her body until she reaches a crash. 

Please be sure to consult with a doctor before starting to exercise. Some studies suggest that moderate amounts of exercise can change your perception of pain and help you better perform activities of daily living.

It’s important to keep an open mind on what can help lower pain levels. There is no single technique or one size that fits all. From my own experience of living 20 years with chronic pain, I have explored many different options and done a fair amount of research before deciding if they were right for me to try. 

Using a multiple modality approach is often key to lowering pain levels. Nothing I have tried has been a cure, but many did help in some way.

Whether it’s one of the 4 E’s or a combination of treatments, I hope you find what helps give you a better life and that you will have continued access to it while we continue our quest for a cure.

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 FoundationShe 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.

Hypnosis and Mindfulness Reduce Acute Pain

By Pat Anson, Editor

Hypnosis and mindfulness training can significantly reduce acute pain in hospital patients, according to a small study published in the Journal of General Internal Medicine.

Researchers at the University of Utah enrolled 244 hospital patients in the study who reported “intolerable pain” or “inadequate pain control” as a result of illness, disease or surgical procedures. Participants were randomly assigned to a single 15-minute session in one of three mind-body therapies: mindfulness, hypnotic suggestion or pain coping education.

All three types of intervention reduced the patients’ pain and anxiety, while increasing their feelings of relaxation.

Those who received hypnosis experienced an immediate 29 percent reduction in pain, while those who received mindfulness training had a 23 percent reduction and those who learned pain coping techniques experienced a 9 percent reduction.

Patients who received hypnosis or mindfulness training also had a significant decrease in their desire for opioid medication.

“About a third of the study participants receiving one of the two mind-body therapies achieved close to a 30 percent reduction in pain intensity,” said Eric Garland, lead author of the study and associate dean for research at the University of Utah’s College of Social Work. “This clinically significant level of pain relief is roughly equivalent to the pain relief produced by 5 milligrams of oxycodone.”

Garland’s previous research has found that multi-week mindfulness training programs can be an effective way to reduce chronic pain and decrease prescription opioid misuse. The new study added a new dimension to that work by showing that brief mind-body therapies can give immediate relief to people suffering from acute pain.

“It was really exciting and quite amazing to see such dramatic results from a single mind-body session,” said Garland. “The implications of this study are potentially huge. These brief mind-body therapies could be cost-effectively and feasibly integrated into standard medical care as useful adjuncts to pain management.”

Garland and his research team are planning a larger, national study of mind-body therapies that involve thousands of patients in hospitals around the country. Garland was recently named as director of the university’s new Center on Mindfulness and Integrative Health Intervention Development. The center will assume oversight of more than $17 million in federal research grants.

Many chronic pain patients are skeptical of mindfulness, cognitive behavioral therapy (CT) and other mind-body therapies, but there is evidence they work for some.

A recent study found that CBT lessened pain and improved function better than standard treatments for low back pain. Another study at Wake Forest University found that mindfulness meditation appears to activate parts of the brain associated with pain control.

You can experience a free 20-minute online meditation program designed to reduce pain and anxiety by visiting Meditainment.com.

The Four C’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

I hear more than ever from others living with chronic pain that they “have tried everything” and nothing helps. But there are always new pain therapies being developed or improved; some real, some placebo, and some researched more than others. 

I personally don’t believe that there is any one treatment that cures or fixes anyone, but there are many that can help take the edge off the pain we are feeling. I also recognize that some options are not right for some people or contraindicated for certain conditions. There is no one-size-fits-all treatment for chronic pain.

Last month we looked at four alternative therapies that start with the letter “A” (acupressure, acupuncture, aromatherapy and art therapy). This month the spotlight is on four therapies that start with “C” – Calmare, Chinese medicine, chiropractic, and craniosacral therapy. 

Calmare Therapy

Calmare is a relatively new treatment that is becoming more popular. I have tried it myself, and while it was not a long-term useful tool for me, I do know others who have received major benefit and relief from it.

Calmare Therapy, also known as scrambler therapy, is a non-invasive, drug-free solution for neuropathy and other conditions that cause nerve damage. I think of it as TENS unit on steroids. 

Duringtreatment, small electrodes are placed on the skin, which are connected by wires to a box-like device. Electrical pulses are transmitted to the body, like little electric shocks. This can help block pain signals in some people with certain types of chronic pain.

The provider I hear about the most having success with this form of treatment is Dr. Michael Cooney, a chiropractor practicing in New Jersey who sees patients from all over country.

Cooney wrote a guest column about Calmare for PNN a few months ago, where you can learn more about the treatment and how it works.

Chinese Medicine

When people think about Chinese Medicine (CM), many just think of acupuncture, but CM is more than just one modality. It involves a broad range of traditional medicine practices which were developed in China over 2,000 years ago, including various forms of herbal medicine, massage, exercise and dietary therapy.

One of the basic tenets of CM is that the body's vital energy (chi or qi) circulates through channels called meridians, which have branches connected to bodily organs and functions.

CM is being used more and more in American pain treatment as an alternative to Western medical practices. Only six states (Alabama, Kansas, North Dakota, South Dakota, Oklahoma, and Wyoming) do not have legislation regulating the professional practice of CM. 

Be sure to tell all your healthcare providers about any complementary health approaches you use, as it is important to give them a full picture of what you do to manage your health. This will help ensure coordinated and safe care, which is important with more than a million Americans using forms of CM. 

The prices of traditional CM vary, depending on the practitioner and the region. Usually an initial herbal consultation ranges from $30 to $60, and follow-up consultation costs around $30. A month's supply of herbs may cost $30 to $50, but it’s a good value if it helps lower your pain levels, stress and helps regulate your neuro-inflammation.

Chiropractic

Chiropractic care is a harder subject for me. I have had positives and negatives with this treatment and with different practitioners. For the most part, my insurance has covered this type of care, but for many insurance policies it is not covered at all or it only pays for a few appointments a year. 

Chirporactic sessions can range from $34 to $106, depending on where you live, how many areas of the spine the chiropractor services, and whether more extensive exams are required.

This form of alternative care typically treats mechanical disorders of the musculoskeletal system with an emphasis on the spine, although I have had chiropractors adjust my hips, feet and shoulders. 

Chiropractic care is somewhat controversial with mainstream practitioners, including some who believe it is sustained by pseudo-scientific ideas such as subluxation and "innate intelligence" that are not based on sound research. In my own reviews of studies on chiropractic manipulation, I have not found evidence that it is effective long term for chronic pain, except for treatment of back pain.

However, chiropractic care is well established in the U.S. and Canada as a form of alternative treatment. It is often combined with other manual-therapy professions, including massage therapy, osteopathy and physical therapy.

Craniosacral Therapy

Craniosacral therapy (CST) takes a whole-person approach to healing, and the inter-connections of the mind, body and spirit. Practitioners say it is an effective form of treatment for a wide range of illnesses, and encourages vitality and a sense of well-being. Because it is non-invasive, it is suitable for people of all ages, including babies, children and the elderly. 

The intent of CST treatment is to enhance the body's own self-healing and self-regulating capabilities. This is done as the practitioner gently touches areas around the brain and spinal cord, which helps improve respiration and the functioning of the central nervous system. 

CST practitioners say it can help temporarily relieve a vast number of issues, including migraines and headaches, chronic neck and back pain, stress and tension-related disorders, brain and spinal cord injuries, chronic fatigue, fibromyalgia, TMJ syndrome, scoliosis, central nervous system disorders, post-traumatic stress, orthopedic problems, depression, anxiety and grief. 

Treatment costs range between $100 and $200 per session, and patients typically attend multiple times when chronic pain issues are being addressed. Some health insurance policies will cover CST.

Do I believe that CST will take pain away? No. But do I think it is a mindfulness tool that can help temporarily. Did it work for me? No, but it was worth a try since it is non-invasive. 

Again, I am spotlighting alternative therapy ideas that can help lower or reduce chronic pain.. Typical pain patients, including myself, find that it takes a variety of treatments to get pain levels low enough to consider it significant relief. The fact that they are treatments and lifestyle changes – and not cures -- is important to remember. 

I'd like to know if you've tried these methods and if they worked or didn’t work. The more we share our ideas and experiences, the better off others in pain will be in understanding different treatment options. 

Over the next few months I will spotlight more than 70 alternative treatments. Please only try what you are comfortable with and don’t put down others who are willing to try what they are interested in. 

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. 

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.

Study Finds No Evidence Copaiba Oil Relieves Pain

By Pat Anson, Editor

An essential oil made from the resin of a tree that grows in the Amazon rain forest shows promising results as a treatment for arthritis, but there is no clinical evidence to support its use, according to researchers at Florida Atlantic University.

Copaiba (koh-pey-buh) is an oleoresin obtained from the trunk of several pinnate-leaved leguminous trees. The resin has been used for centuries in folk medicine, and is also used in the manufacture of paint, varnish, perfume and soap. Brazil produces about 95 percent of the world’s supply of copaiba and exports more than 500 tons a year.

Essential oil made from copaiba is increasingly available in health food stores and online, where it is touted as a “wonderful analgesic” and “one of the most anti-inflammatory substances on earth.”

"Copaiba is an essential oil that is used topically with little or no side effects, but there is insufficient evidence to judge whether it reduces pain and inflammation in patients with arthritis," said Charles Hennekens, MD, senior academic advisor at Florida Atlantic’s College of Medicine and senior author of a commentary published in the journal Integrative Medicine.

"In case reports, individuals with joint pain and inflammation who used copaiba reported favorable results, however, this hypothesis is promising but as of yet unproven."

COPAIBA ESSENTIAL OIL

COPAIBA ESSENTIAL OIL

Hennekens and his colleagues say the evidence to support copaiba as a treatment for inflammatory arthritis is limited to basic research and uncontrolled clinical observations in humans. They caution that randomized trials are necessary to discern whether copaiba oil is effective or if it turns out to be "yet another beautiful hypothesis slain by ugly facts."

"Basic research has suggested mechanisms of benefit of this essential oil in treating inflammatory arthritis," said Hennekens. "Nonetheless, the only published data on copaiba on humans includes one case series and one small randomized trial of another inflammatory condition and not arthritis."

The researchers conclude that the totality of the evidence for copaiba is insufficient to judge either its benefits or risks for the relief of arthritis pain and inflammation. Despite this lack of evidence, sales of copaiba oils continue to increase as patients look for alternatives to pharmaceutical pain relievers.

"Copaiba should be first tested in a randomized trial against a placebo in patients with inflammatory arthritis," said Hennekens. "If such a trial shows a net benefit, then the next step would be direct randomized comparisons against NSAIDs and COXIBs (cyclo-oxygenase-2 inhibitors).”

Can Vitamin D and Good Sleep Reduce Pain?

By Pat Anson, Editor

Vitamin D supplements, along with good sleeping habits, could help manage chronic pain from fibromyalgia, rheumatoid arthritis, back pain and other conditions, according to a new study.

The importance of vitamin D – the “sunshine vitamin” – in maintaining bone strength and overall health has long been known.  But recent research has focused on the role it plays in inflammation, musculoskeletal pain and sleep disorders.

“Vitamin D status seems to have an important role in the bidirectional relationship observed between sleep and pain,” said senior author Dr. Monica Levy Andersen in the Journal of Endocrinology. “We can hypothesize that suitable vitamin D supplementation combined with sleep hygiene may optimize the therapeutic management of pain-related diseases, such as fibromyalgia."

Andersen and her colleagues at Universidade Federal de Sao Paulo in Brazil reviewed 35 clinical studies of vitamin D, and concluded that vitamin D supplements could increase the effectiveness of pain treatments by stimulating an anti-inflammatory response.

"This research is very exciting and novel. We are unraveling the possible mechanisms of how vitamin D is involved in many complex processes, including what this review shows - that a good night's sleep and normal levels of vitamin D could be an effective way to manage pain," said Sof Andrikopoulos, assistant professor at the University of Melbourne and Editor of the Journal of Endocrinology.

Sources of Vitamin D include oily fish and eggs, but it can be difficult to get enough through diet alone. Ultraviolet rays in sunlight are a principal source of Vitamin D for most people.

Several recent studies have found an association between chronic pain and low levels of Vitamin D in the blood.  Researchers at National Taiwan University Hospital found low levels of serum vitamin D in over 1,800 fibromyalgia patients. Danish researchers have also found an association between lack of sunlight and multiple sclerosis.

But some question quality of the studies and whether Vitamin D supplements do any good.

“Evidence does not support vitamin D supplementation for the treatment of multiple sclerosis and rheumatoid arthritis or for improving depression/mental well-being,” wrote Michael Allan, a professor of Family Medicine and director of Evidence Based Medicine at the University of Alberta in the Journal of General Internal Medicine.

Allan says much of the research is of low quality. He doesn’t dispute the overall health benefits of Vitamin D – such as building strong bones and teeth -- but thinks taking supplements is unnecessary and could even be harmful in large doses.

"The 40 year old person is highly unlikely to benefit from vitamin D," said Allan. "And when I say highly unlikely, I mean it's not measurable in present science."

The 4 A’s That Can Help Relieve Chronic Pain

By Barby Ingle, Columnist  

I often hear from pain patients who say that they have tried everything to help lower or relieve their pain levels. Many times what they mean is that their healthcare provider did all they could, and they got minimal or no relief and gave up.

We must realize that providers don’t have all the answers, insurance doesn’t cover all the options that may help, and there are new treatments and therapies that may lower your pain. Many of these treatment modalities are not covered by insurance – so providers may not even offer them. Access to them is limited unless you know your options and create a plan to get them.

Many of these treatment modalities are not covered by insurance – so providers may not even offer them. Access to them is limited unless you know your options and create a plan to get them.

In my next few columns I’m going to focus on some of these treatments, starting with the 4 A’s: acupressure, acupuncture, aromatherapy and art therapy.  

Acupressure

When it comes to acupressure, you can go to a practitioner or you can learn to do the techniques on yourself at home for free. The practitioner works with your pressure points, which are known as meridians. Putting pressure on these meridian points can reduce muscle tension, improve circulation and stimulate the release of endorphins, which are natural pain relievers. All can help lower pain levels.

They are also said to work on your body’s energy field, mind, emotions and spirit. A session with a practitioner lasts about an hour, but you can learn the techniques and do them on your own or with a caregiver.

During the session, you’ll usually lay on a flat comfortable massage table or bed. Some of the pressure points in your hands can be treated while sitting and watching a movie or TV show.

The pressure point that works best for me to calm my mind, improve memory, relieve stress, lower fatigue, and reduce my migraines and insomnia is known as the Third Eye Acupressure point.

Acupuncture

Acupuncture is a little more invasive than acupressure. Due to having a small nerve fiber disease, it is not the best option for me, but I know others who love it.

Acupuncture practitioners insert very small needles through your skin at acupuncture/meridian points. Some potential side effects can be temporary soreness, minor bleeding or bruising at the needle sites. If the needle is pushed in too deeply, it can damage muscles and organs. These are rare complication, but make sure you use an experienced practitioner.

Lower back pain is the number one reason people seek this form of treatment, and there are hundreds of clinical studies that show acupuncture can be beneficial for musculoskeletal issues like back and neck pain.

It can also help with nausea, migraines, depression, anxiety and insomnia, all challenges we can face as pain patients. There is promising evidence acupuncture helps with arthritis, spinal stenosis and inflammation.

Although relief is typically short-term for acupuncture and many other treatments, it can still give the patient back some quality of life.

Aromatherapy

Have you ever smelled something that took you back to a time and place when good things happened in your life? Like apple pie reminding you of July 4th celebrations as a child? Or pumpkin pie bringing back memories of Thanksgiving dinner? Or good times raking up the leaves in the yard?

Aromatherapy can help you get in a good mood for meditation. I use it for migraines and taking the edge off my pain levels. You can use essential oils that help with specific challenges you are facing. You just massage them into your skin or put a dab on your temples. I also use a scented light in my house to keep positive vibes flowing.

This type of therapy has been around for many years, but started to become popular in the 1980’s. Lotions, candles, oils and teas can fill your house with good smells and memories to take the edge off your pain levels. Some promote physical healing, emotional healing, relaxation, and calming properties.

When using a practitioner who combines massage with aromatherapy, the session lasts about an hour and usually involves essential oils. This way your skin absorbs the oils and you also breathe their aroma at the same time. Plus, you experience the physical therapy of the massage itself.

Evidence as to how aromatherapy works is not entirely clear. But it provides relief for many different conditions, including psoriasis, rheumatoid arthritis, cancer pain, headaches, itching, insomnia, constipation, anxiety, and agitation. Studies have shown that chronic pain patients require fewer pain medications when they use aromatherapy.

Aromatherapy products can be inexpensive and are more attainable for low income and underinsured patients.

Art Therapy

There are many forms of art therapy, from music, dancing and writing to painting, sculpting and even just watching someone else perform. One of my favorites for dystonia is working on impossible puzzles.

Art therapy can enhance one’s mood, improve emotions, and reduce stress and depression. If we can get these challenges under control, then the stress hormones and chemicals they produce in our body that aggravate pain can be lessened.

Art therapy can also help heal emotional injuries. Think of it as a form of mindfulness where we develop our capacity for self-reflection, which can alter behavior and negative thinking patterns. These forms of expression can be done at home, while on a car ride, in a quiet place during a trip or even at a rock concert as you dance and sway to the beat of the music.

Like aromatherapy, music can help bring back positive memories and get our minds off pain. I believe music is the most accessible and productive art therapy for lowering pain levels.

These techniques may be strange to you, but remember to keep an open mind and realize that there is more you can do in between doctors’ appointments to make your days better and more purposeful.

Whether you choose any of these four treatment modalities or find another that is right for you, keep looking for those things in your life that you have control over and have access to. Find ways to make the most out of life despite the physical and mental pain you may be experiencing.

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 FoundationShe 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.

Does Coffee Work Better Than Painkillers?

By Pat Anson, Editor

Insomnia and chronic sleep loss are well known to increase pain sensitivity. But an unusual animal study suggests that stimulants that keep you awake – like a cup of coffee -- may give sleep deprived patients more pain relief than morphine or ibuprofen.

That unexpected finding was reached by researchers at Boston Children's Hospital and Beth Israel Deaconess Medical Center, who studied pain sensitivity in sleep deprived laboratory mice.

Unlike other sleep studies that force rodents to stay awake walking treadmills or falling off platforms, the researchers deprived the mice of sleep in a way that mimics what happens with people: They entertained them.

"We developed a protocol to chronically sleep-deprive mice in a non-stressful manner, by providing them with toys and activities at the time they were supposed to go to sleep, thereby extending the wake period," says sleep physiologist Chloe Alexandre, PhD.

“This is similar to what most of us do when we stay awake a little bit too much watching late-night TV each weekday."

The mice wore “tiny headsets” to monitor their sleep cycles and sensitivity. Whenever they showed signs of sleepiness, the mice were given toys to keep them alert.

"Mice love nesting, so when they started to get sleepy, we would give them nesting materials like a wipe or cotton ball," says pain physiologist Alban Latremoliere, PhD. "Rodents also like chewing, so we introduced a lot of activities based around chewing, for example, having to chew through something to get to a cotton ball."

The mice were kept awake for as long as 12 hours in one session, or six hours for five consecutive days. Pain sensitivity was measured by exposing the mice to controlled amounts of heat, cold, pressure or capsaicin -- the chemical agent in chili peppers -- and then seeing how long it took the animal to move from or lick away the discomfort.

"We found that five consecutive days of moderate sleep deprivation can significantly exacerbate pain sensitivity over time in otherwise healthy mice," says Alexandre.

Surprisingly, when the mice were given ibuprofen or morphine, the analgesics didn’t seem to reduce their pain sensitivity. But when the rodents were given caffeine or modafinil, a drug used to promote wakefulness, it blocked the pain caused by sleep loss. Researchers think the caffeine and modafinil gave the mice a jolt of dopamine – a “feel good” hormone – that helped alleviate their pain.

"This represents a new kind of analgesic that hadn't been considered before, one that depends on the biological state of the animal," Clifford Woolf, a professor of neurology and co-senior author of the study. "Such drugs could help disrupt the chronic pain cycle, in which pain disrupts sleep, which then promotes pain, which further disrupts sleep."

The study only involved rodents, but researchers were quick to suggest there are lessons to be learned for people. Rather than just taking painkillers, they say pain patients would benefit from better sleep habits or by taking sleep-promoting medications at night.

"Many patients with chronic pain suffer from poor sleep and daytime fatigue, and some pain medications themselves can contribute to these co-morbidities," notes Kiran Maski, MD, a specialist in sleep disorders at Boston Children's. "This study suggests a novel approach to pain management that would be relatively easy to implement in clinical care.”

Study Finds Alcohol Risky but Effective Pain Reliever

By Pat Anson, Editor

The dangers of alcohol are well known – from drunk driving to health, work and social problems. But with opioid painkillers becoming harder to obtain, some chronic pain sufferers are turning to alcohol to dull their pain.

And now there’s research to back them up.

In an analysis of 18 studies published in the Journal of Pain, British researchers found “robust evidence” that a few drinks can be an effective pain reliever.

“Findings suggest that alcohol is an effective analgesic that delivers clinically-relevant reductions in ratings of pain intensity, which could explain alcohol misuse in those with persistent pain despite its potential consequences for long-term health,” wrote lead author Trevor Thompson, PhD, University of Greenwich.

Thompson and his colleagues say a blood-alcohol content of .08% -- which meets the legal definition of drunk driving in many U.S. states – produces a “moderate to large reduction in pain intensity” and a small elevation in pain threshold.

“It can be compared to opioid drugs such as codeine and the effect is more powerful than paracetamol (acetaminophen),” Thompson told The Sun newspaper.  “If we can make a drug without the harmful side effects then we could have something that is potentially better than what is out there at the moment.”

Despite the risks involved, some pain sufferers are turning to alcohol as a last resort and mixing it with pain relievers – a potentially lethal combination.

“My doctor took me off all opioids last year and put me on Effexor, Naproxen, and extended relief Tylenol. It barely touches my pain so I am also drinking each night to help dull the pain,” one patient told us.

“The doctor tried gabapentin but I ended up with an overnight stay in the hospital due to a bad reaction to the medication,” another patient said. “I'm now using alcohol nightly to help me sleep along with high amounts of Naproxen and Tylenol daily.”

“I suffer extreme back and neck pain. Since they no longer prescribed painkillers I started drinking and find it is helpful. I take also thousand mg of arthritis Tylenol every day,” wrote another patient.  “It's either suicide or drinking. Frankly I'd prefer death. Too bad they can't give painkillers anymore.”

How much is too much?

According to the Mayo Clinic, moderate alcohol consumption for healthy adults means up to one drink a day for women of all ages and men older than age 65, and up to two drinks a day for men age 65 and younger.

Chiropractic Therapy Gives ‘Modest’ Relief to Back Pain

By Pat Anson, Editor

When it comes to treating short-term back pain, spinal manipulation may not be all it’s cracked up to be.

In a review published in JAMA of over two dozen clinical trials involving over 1,700 patients, researchers said chiropractic adjustments provided only “modest” relief for acute low back pain – pain that lasts no more than 6 weeks.

The improvement in pain and function were considered “statistically significant,” but researchers said it was about the same as taking over-the-counter pain relievers. Over half of the patients also experienced side effects from having their spines manipulated, including increased pain, muscle stiffness and headache.

Although the study findings are mixed on the benefits of chiropractic treatment, the American Chiropractic Association (ACA) said it “adds to a growing body of recent research supporting the use of spinal manipulative therapy.”

“As the nation struggles to overcome the opioid crisis, research supporting non-drug treatments for pain should give patients and health care providers confidence that there are options that help avoid the risks and dependency associated with prescription medications,” said ACA President David Herd, DC.

Last month the ACA approved a resolution supporting new guidelines by the American College of Physicians (ACP), which recommend spinal manipulation, massage, heating pads and other non-drug therapies as first line treatments for chronic low back pain.

“By identifying and adopting guidelines that ACA believes reflect best practices based on the best available scientific evidence on low back pain, we hope not only to enhance outcomes but also to create greater consensus regarding patient care among chiropractors, other health care providers, payers and policy makers,” said Herd.

But the ACP guidelines are hardly a ringing endorsement of spinal manipulation. The overall evidence was considered low quality that chiropractic adjustments can “have a small effect on function” and that they provide “no difference in pain relief.”

In fact, the best treatment for acute low back pain may be none at all.

"Physicians should reassure their patients that acute and subacute low back pain usually improves over time regardless of treatment," said ACP President Nitin Damle, MD.

One in four adults will experience low back pain in the next three months, making it one of the most common reasons for Americans to visit a doctor. According to a 2016 Gallup survey, more than 35 million people visit a chiropractor annually.

Wear, Tear & Care: The SpineGym

By Jennifer Kilgore, Columnist

You’ve got to hand it to SpineGym’s marketing team -- when one of your device’s signature moves is visually hilarious, you could try to hide it... or you could own it.

They decided to own it.

The video was what intrigued me many months ago. I mean, it’s incredible.

I have Google Alerts set to notify me about new medical technology, and those are the types of emails sent to me by crowdfunding websites like Kickstarter and IndieGogo. The SpineGym device, which is designed to develop your back and abdominal muscles, was 928% funded nearly a year ago.

My core has as much strength as a trash bag filled with mashed potatoes. I’ve been desperate for something to help me focus on those important muscles, but I was concerned that it would be too intense for my spine at T-11 and T-12, as a facet joint in that area never healed correctly.

Upon watching the exercise video, however, it didn’t seem too physically strenuous. I reached out to SpineGym USA to ask for a test unit, and they were gracious enough to offer me one. I’ve been using the device for a couple months now. Each session is intended to be less than five minutes, a few times a week.

Surprisingly, that’s all I can physically manage.

What is the SpineGym?

The SpineGym has two parallel poles set into a floorplate that go back and forth. There is a black band between the poles that you lean back or forward on. There are also loops on the base plate where you can hook plastic bands as an alternative workout for your arms.

The machine bases a workout’s pace on the user’s strength and capabilities, because the force working against the machine is what sets the tone. The moves themselves range from simple isometrics to a variation of crunches that work the abdominal and back stabilizer muscles.

With the positioning of the machine’s arms, it changes the moves entirely. I felt my muscles in a way I never had on a yoga mat, and they engaged from my low back all the way up to the base of my neck. When you watch the video it doesn’t look hard, but it’s surprisingly difficult when you actually try it.

SPINEGYM PHOTO

SPINEGYM PHOTO

I wondered if this was because I have absolutely no core strength, so I asked my husband to try it. Here are a few key demographic differences between the two of us: He’s 6’, an ultra-marathon runner and exercises for approximately three hours a day. (Yes, I am aware of the irony.) He did agree with my assessment, however, and said that the SpineGym engaged his midsection in a way that crunches definitely do not.

SpineGym’s Data

When 20 sedentary workers aged 35-60 were given SpineGyms to use for two weeks, they were instructed to exercise for only five minutes a day. The following results were based on EMG measurements after two weeks:

  • an average 80% improvement in activation of back muscles
  • an average 141% improvement in activation of abdominal muscles
  • significant postural improvements
  • significant improvements in abdominal muscle strength
  • approximately 90% of users found the training method to be efficient or very efficient.

A second test was performed on users aged 70-90 and included three SpineGym sessions a week for two months. Each session lasted four to five minutes.

  • Standing balance improvement of 74%
  • Muscle strength and coordination: improvement of 58%
  • Walking speed improvement of 41%

Most of this improvement was reached by participants already after the first month of exercise.

How It Worked for Me

My lower back has been hurting much more recently in that “coming-back-from-the-dead” way. If I overdo it with the SpineGym -- meaning if I use it more often than once every few days -- I go into spasm and have a flare. This is when a session lasts about five minutes. It targets that specific area that needs the most work, so I am very excited about this unit.

People larger than 6’ might find it a bit flimsy for their size, as the poles are quite tall, set into a base plate that fits your shoes side by side, and is made of carbon fiber. It’s a bit of a balancing act. However, as long as your feet are firmly planted and your core is engaged, the platform should not move. Plus, there’s an anti-slip pad underneath.

The other great things? It’s relatively small and light for medical equipment (11.2 pounds or 5.1 kg). It sets up and breaks down easily and stores flat in a T-shirt-shaped bag, though I don’t ever put it away. It doesn’t take up much space, so why bother?

When I’ve been working all day and desperately need to stretch my lower and mid back, the SpineGym hits the muscles that need releasing the most. The unit targets the discomfort better than an upward-facing dog pose on the yoga mat. I just have to remind myself not to use the SpineGym too often, or I’ll be my own worst enemy in terms of progress.

You can purchase the SpineGym for $198 through Indiegogo.

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.

Study Finds Opioids Reduce Effectiveness of Massage

By Pat Anson, Editor

Massage therapy significantly improves chronic low back pain, but is not as effective when patients are taking opioid pain medication, according to a new study.

Nearly 100 patients with low back pain were given a series of 10 massages designed and provided by a massage therapist. Over half experienced clinically meaningful improvements in their low back pain.

"The study can give primary care providers the confidence to tell patients with chronic low back pain to try massage, if the patients can afford to do so," said lead author Niki Munk, an assistant professor of health sciences in the School of Health and Rehabilitation Sciences at Indiana University-Purdue University Indianapolis.

Most patients showed improvement in their pain and disability after 12 weeks, but the effectiveness of massage appeared to diminish after 24 weeks of therapy.

The study also identified several characteristics in patients that made them more or less likely to experience relief from massage:

  • Adults older than 49 had better pain and disability outcomes than younger adults.
  • Patients who were taking opioids were two times less likely to experience clinically meaningful change compared to those who were not taking opioids.
  • Obese patients experienced significant improvements, but those improvements were not sustained over time.

"The fact of the matter is that chronic lower back pain is very complex and often requires a maintenance-type approach versus a short-term intervention option," said Munk.

Another inhibiting factor is cost. Patients in the study were given free massages, but in the real world massage therapy is often not covered by insurance, Medicaid and Medicare. Researchers say more studies are needed to determine just how cost-effective massage is compared to other treatments,

"Massage is an out-of-pocket cost," Munk said. "Generally, people wonder if it is worth it. Will it pay to provide massage to people for an extended period of time? Will it help avoid back surgeries, for example, that may or may not have great outcomes? These are the types of analyses that we hope will result from this study."

The study was published in the journal Pain Medicine. 

Lower back pain is the world's leading cause of disability. Over 80 percent of adults have low back pain at some point in their lives.

Do You Really Want to Know Your Genetic Traits?

By Barby Ingle, Columnist  

A few months ago, I got a DNA saliva test done through Ancestry.com for $99. I was a surprised at the results both my husband and I received.

We were both told stories by our parents and grandparents about our heritage that could not be true based on our DNA results. We were a little shocked that so many relatives could be so wrong about our heritage.

Then I started to wonder how much it would cost to look at my genetic health traits and found a site that builds a personal health profile based on the DNA genotypes identified in the saliva test.

The second test at Promethease.com was only $5. I thought I wanted to know the results. How good or bad could they be from what I already knew? I am almost 45, have a lot of health issues, and by this age I should know what it is going to tell me. Or so I thought.  

Most of the DNA findings in tests by Ancestry and 23andMe have no meaningful impact on your health. Promethease is great for this reason -- it is a cost-effective way to see if there is anything additional that really warrants discussion with a doctor or genetic specialist.

Since I did a saliva test, there were about 2,000 points of interest that could be run on me. If I had completed a blood test, they could have run over 12,000. I settled for 2,000 and uploaded my Ancestry test data to Promethease.

When I got the results, it was recommended that I sort them by "magnitude." Anything rated as 4 or higher might be worth looking into. I thought -- given my poor health history -- that I would have more magnitude 4 results than my husband.

It turns out I had 271 and he had 237 “bad” genome finds. So either I am not as sick as him or he is just better at sucking it up. Although some of his genomes are considered bad, they are not affecting his health. One makes him prone to balding. Well, we already knew that.  

We knew a lot of other health traits they identified. A few that I found fascinating were my learning disabilities, impaired motor skills learning, dyslexia and poor reading performance, and multiple autoimmune disorders.

If it can pick up the traits I already knew about myself, then I better pay attention to what I didn’t know:  

  • 1.4 times increased risk for heart disease; increased LDL cholesterol
  • 1.7x increased risk of melanoma; increased risk of squamous cell carcinoma
  • 2.7x increased risk for age related macular degeneration
  • 3x increased risk for Alzheimer's
  • Altered drug metabolism and bioavailability
  • Increased risk for type-2 diabetes
  • Moderately increased risk for certain cancers (breast, skin, lung, thyroid)
  • susceptibility to Crohn's disease

There were also some genetic traits relating to medication. I am a slow metabolizer of dichloroacetate (a cancer drug) and I have a Coumadin resistance. I am a slow metabolizer of protein and have multiple slow metabolism issues. I am 7 times less likely to respond to certain antidepressants and have a higher likelihood of favorable postmenopausal hormone therapy.

My results also show that I have an increased risk of exercise induced ischemia. I found that out the hard way after exercising last fall and landing in the hospital. It also showed an increase risk of arthritis. I already knew that, but it is good to know it’s because of my DNA and not necessarily just from all my years as an athlete and cheerleader.

I also have an increased risk for gluten intolerance and for autoimmune disorders such as celiac disease. 

My husband found out that he is not able to get the full benefits of caffeine. No wonder he can drink so much coffee. 

It was interesting to find out that I have stronger cravings for alcohol. If I was an alcoholic, naltrexone treatment would be 2 times more successful with my DNA. Luckily for me I don’t drink.

Another interesting finding was that I am not susceptible to the placebo effect. I think that is really the best part of what I learned.  

There are some things that I would like to unlearn about myself, but overall this was a positive experience. There is still so much more to dive into with my test results and I am sure I will focus on some other areas down the line. I am also excited to talk to my providers about the results so that we can make better plans and follow up on any items that need attention.  

If you take a genetic test and something stands out, I recommend being very specific if you reach out to a genetic specialist for further clarification. Instead of just saying you took an ancestry test and need help understanding it, I was told to ask, "It looks like I might be a carrier for Disease X, can I come in to talk about it and get this confirmed?"

My results kept me glued to the computer for a few days. Once you see them they can’t be unseen. Would you want to see your test results?

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author and president of the International Pain Foundation (iPain).

More information about Barby can be found by clicking here.

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.