Pain Companion: How to Survive the Holidays

By Sarah Anne Shockley, Columnist

The holiday season is upon us. For many it’s a time meant for joyful festivities, but for those of us in chronic pain, planning and participating in gatherings with coworkers, friends and family can pose significant challenges and stresses.
 
The demands on our energy, time and patience are likely going to become much higher than normal, and we’ll need to make wise choices about what we can and can’t do.

How do we find ways to participate enjoyably and not send our pain levels skyrocketing?

You Don't Have To Do It All

Learn to say no. Nicely, kindly, but firmly.

You don't have to be the person you were before you were struggling with pain, and you shouldn't try to be.

Yes, people have expectations of you and they forget that you're in pain. It's no fun, but you're going to have to gently remind others that you can't be everywhere and do everything they expect of you this holiday season.

Tell them that it's also hard on you, not be able to be as involved as you have been in the past, but that it is very necessary for your healing.

Let them know that the best way they can support your healing is to allow you to make the choices you need to make -- the choices that may keep you home a little more and out a little (or a lot) less often.

Give yourself permission to ask others to do more than usual so you can attend gatherings without wearing yourself out, and give yourself permission to stay home if you need to.

Let coworkers, friends, and family know that it's nothing personal about them. It's personal about you. You're taking care of yourself.

Give Yourself a Free Pass

Give yourself a free pass to say yes or no at the last minute, and decide you’re going to be okay with that. That means that you're going to reply with a firm "maybe" when you're invited anywhere. It means that you can leave the decision about whether you're up for something or not right up to the moment you're heading out the door. And it means preparing others to accept that.

Tell friends and family that you may need to cancel your attendance at the last minute, or that you may need to leave early, and ask for their understanding ahead of time. Let them know that you really want to be able to be with them, and your absence has nothing to do with how much you care about them. It has everything to do with taking care of yourself.

Then do what you need to do in that regard, and do it without guilt. Your priority is to find a way to take care of your need for rest and low stress, even in the midst of this demanding season.

Don't Cut Yourself Off

With that said, don't completely cut yourself off from friends and family either. Being with loved ones for special occasions can be one of the most joyful aspects of being alive, so you don't want to miss out entirely if you can help it.

So, here's my formula: Choose a small number, say 3 to 5 celebrations for the wholeholiday season that you feel are the most important to you personally. I don't mean the ones you used to think were important based on obligations to work, family and friends. I mean the ones you truly enjoy, the ones that feed your spirit, the ones you would really miss if you couldn't go.

If at all possible, find a way to get to those and only those. Go for only a brief period, if need be. Attend without contributing to food or preparations. Again, give yourself a guilt-free pass.

Let yourself have the times that are important to YOU, and say no to the rest.

This may sound selfish, but if you're in pain, you need to be a little more selfish. It isn't doing anyone any good for you to wear yourself out trying to do everything you used to do and go everywhere you used to go, if you will be raising your pain levels and not enjoying yourself.

So, instead of being exhausted and grumpy at too many functions, pick a few choice ones you can attend with enjoyment. Above all, be kind to yourself and take care of yourself first.

Find an Ally

Recruit a holiday ally -- a friend or family member who understands your situation -- who will do the explaining for you, drive you over to functions, pick up the slack in terms of bringing food or making arrangements, and agree to leave early with you if it's necessary.

You might find someone for the whole season or you might want to ask a different person for each function. Remind yourself: You need more help. You need to do less.

Don’t hide away this holiday season if you can help it, but also give yourself the gift of attending fewer functions, say yes only to the ones you really enjoy, find an ally or two who will support you, and giving yourself a free pass to say no so that you can fully enjoy the celebrations you do attend.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.

‘Spicy’ Injection Could Take Sting Out of Foot Pain

By Pat Anson, Editor

The U.S. Food and Drug Administration has given "fast track" designation to an injectable pain reliever containing a synthetic form of capsaicin, the active ingredient that makes chili peppers spicy.

The move speeds the development of CNTX-4975 as a treatment for Morton’s neuroma, a painful nerve disorder of the foot. If clinical trials are successful and CNTX-4975 gains full FDA approval, it would be the first use of capsaicin in an injectable analgesic. Capsaicin is already used in skin patches and topical ointments for temporary pain relief.

“We feel the Fast Track designation is recognition that we are pursuing an unmet need for a serious condition with a novel therapy. CNTX-4975 has the potential to help patients avoid surgery, meaning they can avoid the potential complications and recovery associated with surgery, while still achieving the pain relief they are seeking,” said Jim Campbell, MD., founder and President of Centrexion Therapeutics, which is developing the drug.

“We also believe the FDA is trying to encourage development of novel therapies, like CNTX-4975. As a non-opioid, we believe CNTX-4975 could have a major impact in the treatment of chronic pain.”

Centrexion is also studying CNTX-4975 as a possible treatment for osteoarthritis in both humans and dogs.

Morton’s neuroma involves a thickening of the tissue around a nerve leading to the toes, which causes sharp, burning pain in the foot, especially when walking.

The current standard of treatment is steroid injections or surgery to remove the nerve. The surgery often results in permanent numbness in the toes and a potentially long recovery period. 

There are currently no FDA-approved treatments for Morton's neuroma. The agency’s Fast Track process is designed to speed the review of drugs to fill an unmet medical need.

“CNTX-4975 has the potential to provide a high degree and long duration of pain relief without having to undergo surgery. Additionally, CNTX-4975 is highly selective for the capsaicin receptor, which allows it to selectively inactive the local pain fibers while leaving the rest of the nerve fiber functioning, meaning the patient won’t experience numbness in the area of the injection,” said Campbell in an email to PNN.

CNTX-4975 has a short half-life and is cleared from the body within 24 hours, but Campbell says a single injection provides pain relief that lasts for months.

A recent Phase 2b study of CNTX-4975 showed a statistically significant decrease in pain from Morton’s neuroma over a 12-week period. Centrexion plans to begin a Phase 3 trial in 2017.

The company is expecting results later this year on a Phase 2b trial of CNTX-4975 as a treatment for knee osteoarthritis in humans, as well as a study on pet dogs with canine osteoarthritis.

A recent study found that a skin patch containing capsaicin works better than Lyrica (pregabalin) in treating patients with neuropathic pain. Over half the patients using Qutenza had pain relief after about a week, compared to 36 days for those taking pregabalin.  

Lady Gaga Turns Up the Heat to Fight Chronic Pain

By Pat Anson, Editor

Lady Gaga is well known for her unconventional approach to singing, fashion and just about everything else.

So it’s not altogether surprising that the 30-year old entertainer has some unusual remedies for chronic pain -- including infrared saunas, ice baths, emergency blankets and frozen peas.  

Lada Gaga recently shared on Instagram details about her “frustrating” battle with chronic pain, along with two photos of herself getting treatment.

The first photo, posted Thursday, shows a hand apparently massaging Lady Gaga’s shoulder, along with a caption.

“Having a frustrating day with chronic pain, but I find myself feeling so blessed to have such strong intelligent female doctors. I think about Joanne too and her strength and the day gets a little easier," she wrote.   

“Joanne” is Lady Gaga’s aunt – who died from lupus at the age of 19 before the singer was even born. Although they never met, Lady Gaga has always felt a connection to her late aunt, who was the inspiration for her newest album.

After an outpouring of support from her Instagram followers, Lady Gaga posted another photo of herself on Friday, showing the singer sitting in a sauna wrapped in an emergency blanket. It’s a remedy she uses to relieve pain and inflammation.

“I was so overwhelmed by the empathy, confessions & personal stories of chronic pain in response to my previous post I thought what the hell. Maybe I should just share some of my personal remedies I've acquired over the past five years. Everyone's body and condition is different U should consult w ure Dr. but what the heck here we go!” she wrote.

“When my body goes into a spasm one thing I find really helps is infrared sauna. I've invested in one. They come in a large box form as well as a low coffin-like form and even some like electric blankets! You can also look around your community for a infrared sauna parlor or homeopathic center that has one.

"I combine this treatment with marley silver emergency blankets (seen in the photo) that trap in the heat and are very cheap, reusable and effective for detox as well as weight loss!”

Lady Gaga likes to alternate between hot and cold therapy.

“In order to not overheat my system and cause more inflammation i follow this with either a VERY cold bath, ice bath (if u can stand it, it's worth it) or the most environmentally savvy way is to keep many reusable cold packs in the freezer ( or frozen peas' n carrots'!) and pack them around the body in all areas of pain,” she wrote.

Lada Gaga reportedly suffers from synovitis, a painful inflammation of the joints, that apparently stems from a hip injury she suffered during a concert. The pain grew was so bad she was unable to walk at times.

After years of hiding her chronic pain from fans and even her own staff, Lady Gaga had surgery in 2013 to repair the injured hip and missed several concerts as a result.

She’s now one of the few celebrities to speak openly about her experience with chronic pain.

“Hope this helps some of you, it helps me to keep doing my passion, job and the things I love even on days when I feel like I can't get out of bed. Love you and thank you for all your positive messages,” she wrote on Instagram.

Scientists Use Light and Sound to Reduce Pain

By Pat Anson, Editor

British researchers have found that pain can be significantly reduced if the brain if “tuned in” to a particular frequency, a discovery that could potentially lead to new visual and sound therapies to treat chronic and acute pain.

"This is very exciting because it provides a potentially new, simple and safe therapy that can now be trialed in patients,” said Professor Anthony Jones, director of the University of Manchester Pain Consortium. “The potential is for this to be another treatment for chronic pain.”

Jones and his colleagues say nerve cells in different parts of the brain communicate with each other using different frequencies.  

Nerves in the front of the brain associated with a placebo analgesic effect are tuned in at 9-12 cycles per second, and apparently use that frequency to influence how other parts of the brain process pain.

To test their theory, researchers had 64 healthy volunteers wear goggles and headphones, and exposed them to different flashing lights and sounds while heat pain was induced with a laser on the back of their arms.

The volunteers who were exposed to an alpha frequency at 9-12 cycles felt significantly less pain than those who were exposed to other light and sound levels.

“This study provides new evidence that visual and auditory entrainment in the alpha range can influence the perception of acute pain independently of arousal and negative emotional influences,” the researchers said. “Overall, visual entrainment produced a larger effect than auditory entrainment in the mid- and lower alpha frequencies. This provides further evidence that external stimulation can modulate pain perception and requires further study to ascertain its relevance to clinical pain states.”

Further studies are needed to test the effectiveness of alpha wave therapy in patients with different pain conditions. Researchers say the simplicity and low cost of the technology should facilitate more clinical studies.

"It is interesting that similar results were obtained with visual and auditory stimulation, which will provide some flexibility when taking this technology into patient studies,” said Dr. Chris Brown, a lecturer in Psychology at The University of Liverpool who was involved in the research. “This might be particularly useful for patients having difficulty sleeping because of recurrent pain at night."

The study, which was self-funded as part of a PhD project, is being published in the European Journal of Pain.

Low Impact Exercise Reduces Pain in Seniors

By Pat Anson, Editor

Even a modest amount of exercise is effective at easing pain from arthritis, and other muscle and joint conditions in older adults, according to the latest study by the Hospital for Special Surgery (HSS) in New York City.

Since 2011, HHS has offered free, low-impact exercise programs at senior centers in Chinatown, Flushing, and Queens – and tracked the health of those who participated. Researchers presented their latest findings at the annual meeting of the American Public Health Association in Denver.

"Joints will often stiffen if not used, and muscles will weaken if not exercised. Our bodies are meant to move, and inactivity leads to weakness and stiffness, and joints with arthritis often worsen with inactivity," said Theodore Fields, MD, director of the Rheumatology Faculty Practice Plan at HSS.

The exercise program takes place once a week for eight weeks. Participants perform chair and floor mat exercises using stretch bands and other gentle exercises led by certified bilingual instructors.

The program was originally developed for Asian seniors 65 and older, many of whom live in poverty and suffer from arthritis and musculoskeletal conditions.

A survey was distributed to participants before classes began and after they ended to evaluate pain, physical function, stiffness, fatigue, balance and other health indicators. A total of 256 adults completed the questionnaires, the vast majority of them elderly women.

HOSPITAL FOR SPECIAL SURGERY IMAGE

"Overall, the program was very well-received," said Minlun (Demi) Wu, an HHS research coordinator. "After completing the classes, statistically significant differences were found in pain intensity, physical function, balance, and confidence about exercising without making symptoms worse."

Eight out of ten participants said they had less pain after participating in the program. Over 90 percent said they had less stiffness, fatigue and their balance improved. There was also significant improvement in their ability to perform daily activities, such as lifting or carrying groceries; climbing stairs; bending, kneeling and stooping; and bathing and getting dressed.

"The study results are consistent with the experience of rheumatologists and with prior studies showing that exercise, even of mild degree, helps with pain," said Dr. Fields. "Getting people up and moving does appear to help with mood, pain and overall functioning."

"Our findings indicate that implementing a bilingual low-impact exercise program can play an important role in pain relief, improved quality of life and improved levels of physical activity in the underserved Chinese community," said Wu, adding that the classes have become so popular there is a waiting list.

According to the CDC, Asian seniors have some of the highest rates of physical inactivity. Chinese Americans are also less likely to seek health care because of cost and language and cultural barriers.

Would This Meal Give You a Migraine?

By Pat Anson, Editor

The dinner on the right looks inviting – but to some people prone to migraines it could leave them with a bad headache.

Many migraine sufferers have learned to avoid or limit their consumption of foods and beverages that can cause a migraine attack. Wine, chocolate, coffee, nuts, and milk are often named as likely triggers, but did you know that some diets can actually help prevent migraines?

The role of diet in the treatment and prevention of migraine is poorly understood and somewhat controversial in the field of headache medicine because few rigorous studies have been performed.

In an effort to bring some clarity to the issue, two professors at the University of Cincinnati College of Medicine performed a comprehensive review of over 180 research studies on the subject of migraine and diet. Their two-part review, "Diet and Headache" is being published online in Headache: The Journal of Head and Face Pain. You can also see it by clicking here and here.

"One of the most important triggers for headache is the withdrawal of caffeine," says Vincent Martin, MD, a professor in the Department of Internal Medicine at the University of Cincinnati (UC) College of Medicine. “Let's say you regularly pound down three or four cups of coffee every morning and you decide to skip your morning routine one day, you will likely have full-fledged caffeine withdrawal headache that day."

Martin and co-author Brinder Vij, MD, an associate professor in the UC Department of Neurology and Rehabilitation Medicine, say there are two different approaches to preventing headaches with diet. The first is an elimination diet that avoids foods and beverages known to trigger headaches. The second approach is to adopt low fat and low carbohydrate diets that may actually help prevent headaches.

"The beauty of these diets is that they not only reduce headaches, but may produce weight loss and prevent heart disease," says Vij.

One of the most promising diets for those with frequent migraine attacks is one that boosts omega-3 fats while reducing omega-6 fatty acids. That means avoiding polyunsaturated vegetable oils (corn, sunflower, safflower, canola and soy) in favor of flaxseed oil. Foods that are rich in omega-3 fats include flaxseed, salmon, halibut, cod and scallops, while foods to avoid would be peanuts and cashews.

Martin and Vij say gluten-free diets are only helpful in lessening headaches if someone suffers from celiac disease, which can be established through a blood test or intestinal biopsy.

Other foods to avoid include anything with monosodium glutamate (MSG), a flavor enhancer used in many processed foods, including frozen or canned foods, soups, snack foods, salad dressing, seasoning salt, ketchup, barbecue sauce, and in some Chinese cooking.

"You eliminate it by eating fewer processed foods," explains Martin. "You eat more natural things such as fresh vegetables, fresh fruits and fresh meats. MSG is most provocative when consumed in liquids such as soups."

About 5 percent migraine suffers are likely to have an attack on days they consume nitrites, a preservative often used in processed meats such as bacon, sausage, ham and lunch meat. The use of both nitrites and MSG has declined, but Martin says checking food labels is a good idea.

Alcohol is another headache trigger for about a third of migraine sufferers, and studies suggest that red wines, especially those with high histamine content, are the worst. Interestingly, one study found that beer was associated with fewer headaches and migraines.

"Persons with headache and migraine have more dietary options than ever. Ultimately a healthy headache diet excludes processed foods, minimizes caffeine and includes a lot of fruits, vegetables, fish and lean meats,” Martin says.

Martin and Vij say identifying dietary triggers is challenging because there are so many different foods and ingredients that migraine sufferers are exposed to. They recommend keeping a food diary to help determine which foods to eliminate.

“It is not reasonable for persons with headache to avoid all know dietary triggers, as individuals may only be susceptible to a small number of foods or beverages,” they wrote. “The triggers could be identified by simple observation if the association is strong or through the use of a food diary if it is less obvious. The ideal would be to use a food diary as part of an app that would then determine statistically if a given food or beverage was associated with headache.”

Migraine affects about three times as many women as men. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

How to Improve Self-Care and Coping at Home

By Barby Ingle, Columnist

Whether you are in pain or caring for someone in pain, it often seems the weight of the world is on your shoulders.

Want to know some ways to lighten that load?

The Chronic Care in America survey was conducted by Harris Interactive in 2002, but still holds some valuable lessons.

The survey of over 3,000 chronically ill patients found that those who were who were organized and made lifestyle changes at home were more likely to be free of depression and to live healthier lives.

They were proactive and knowledgeable, and firmly believed their lives still had value and purpose.

I have my own list of things that I’ve done at home to improve my self-care and coping skills over nearly 20 years of living with chronic pain diseases.

The Bedroom

In the bedroom, the most used room in the house, I created a blanket support frame so that the weight of blankets or sheets does not rest directly on my feet.  I used a body pillow for $7 from Walmart and put it at the bottom of my bed. The sheets and blankets go up and over and keep me warm, but without physical contact with my feet.

You can also install blackout curtains in your bedroom so you have a quiet and dark place where you can retreat during breakthrough pain, migraines, etc. I did this throughout my entire house, which has helped so much on my severe migraine days. For safety, I added nightlights throughout the house so I can still walk around.

Keep commonly used items close to the bed for easy reach (remote control, medications, cup of water, reading materials, etc). Keep the floor from being cluttered to avoid tripping and falls. I even removed area rugs after a few trips and falls myself.

We all know how important sleep is. Keep your bedroom ventilated. Being too hot or too cold can interfere with quality sleep. Make sure your mattress is comfortable and use pillows that provide support as needed.

The Bathroom

The second most used room in the house is the bathroom. I found that drying with smaller towels so the weight of the towel doesn’t wear me out or drag across painful areas is extremely helpful. I also put small towels between me and the shower water when taking a shower, as the water drops can feel like thousands of needles poking me.

We also installed grab bars in the bathtub, shower and next to the toilet for when I am off balance and or having a migraine that has me seeing double. We also put a shower bench into the tub. I love it and so does my husband. This helps save energy pennies. Showers and baths can be one of the most draining activities we face.

My husband got me a hairdryer stand as a Christmas present a few years back. It is great -- no more having to try to hold my arms above my head. I can just sit in front of it and dry my hair with no effort. My dentist also suggested an electric toothbrush which has helped me improve my dental hygiene. And for the worst of worst days, I soak in Epsom salt baths to relax

The Kitchen

The third most used room of the house is the kitchen. I suggest you come up with easy to make recipes that are good for you and that you like. I found crock pot cooking is a great way to have a good meal and they’re easy to prepare.

Keep commonly used items at waist height so you don’t have to reach, which can increase pain and use up energy pennies. We switched out our smaller kitchen knobs for large knobs on the appliances and cabinet doors so they’re easy to open and close. Lightweight dishes and pots, as well as paper and plastic plates and cups, are also easier to use and inexpensive. They also have the bonus of when you drop them there is no glass to clean up.

Long handled brooms, dustpans and sponges make cleaning easier, and long-handled "grabbers" make it easier to reach items on high shelves or picking them up from the floor. Turntables on kitchen shelves make it easier to reach items in the back. My husband helps me split larger food items or food needing to be prepared in Tupperware. And my favorite kitchen tools are the electric can and jar openers.

I hope you find my tips helpful and that it sparks some ideas of your own so you can organize your own home. The goal is to have better daily living, spend less energy pennies, and have more time to do things that you actually want to do.  

You are worth the investment in yourself! It’s easy to put these steps on the backburner, but taking the time and energy now can help you feel better and may even help you live longer.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: The Oska Pulse Trial

(Editor’s note:  Several weeks ago we were contacted by a representative for Oska Wellness, a San Diego company that makes the Oska Pulse, a wearable device that uses Pulsed Electromagnetic Field technology (PEMF) to treat pain. According to the company, the device dilates blood vessels and releases the body’s natural endorphins, which “has been shown to reduce joint and muscle pain by reducing inflammation.” It sells online for $399.

The company was invited and agreed to provide an Oska Pulse at no cost to PNN columnist Arlene Grau for a test run.)

oska wellness image

By Arlene Grau, Columnist

As many of my fellow pain sufferers know, when it comes to finding relief most of us are willing to try anything. In order to relieve my pain I go through a long list of pain relieving strategies, including a TENS unit, opioids and pain patches. So adding the Oska Pulse wasn’t anything new, especially since the directions were so easy to follow.

In the first weeks of treatment, it’s recommended that you use the device 4-6 times a day for half an hour. Although I don't work due to my being on disability, I'm still a busy mother of two, so this seemed a bit much for me. But I followed the guidelines to get the most out of my experience.

The Oska Pulse is very easy to use. You simply wrap it over the area you want to target, push the button, ensure it beeps and lights up, and the device does the rest. You don't feel or hear anything while it's on, except for when it shuts off, which is kind of nice because you can either relax while you wear it or go about your business. I used it for both my lower back and right hip.

After about a week, I was able to get some pain relief from the Oska Pulse. I wouldn't necessarily compare it to the relief I get from opioids, but it was enough to make me feel like I didn't need to take prescription drugs every 4 hours (which is a triumph). I only took them at bedtime or once or twice for breakthrough pain during the day.

I found that wearing the device 2-3 times in the morning when my back pain and hip are usually at their worst gave me the best results. Then I would wait a few hours and wear it again for one interval. At bedtime I would lay in bed and wear it another 2-3 times.

With the exception of how often I needed to use the device, which is what I think some people may be turned off by, I think the Oska Pulse really helps.

For those of you who work, you can actually wear the Oska Pulse over your clothing and still feel the effects of it. The benefits outweigh the inconvenience of wearing it.

I originally thought the Oska Pulse was not going to work for me, since I'm used to the TENS unit shocking my body and actually feeling something happening. You don’t really “feel” anything when the Oska Pulse is on, but I felt a difference after every use.

In my personal opinion, I think the Oska Pulse did a great job at temporarily relieving my pain and minimizing my inflammation.

Arlene Grau lives in California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

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.

Pain Companion: Overcoming Victimization

By Sarah Anne Shockley, Columnist

One of the most challenging things about being in chronic pain is the powerlessness we often feel because we are unable to heal our bodies and stop the constant pain.

We may feel victimized by our conditions, pharmaceuticals, invasive procedures, the impersonal nature of most institutions, and even our own bodies.

We may feel we are at the mercy of an interlocking system of agencies and organizations, one or all of which may not present a caring or compassionate face. Medical and insurance forms, appointments, tests, procedures, and legal hearings don’t take into account that we are not at our best physically, mentally and emotionally.

Yet we may blame ourselves if we are not on top of the situation or able to answer questions clearly and accurately.

Sometimes, being ill or injured feels like a crime committed by us!

Take Responsibility

Believing that others are responsible (or guilty) places them in a position of power – leaving you to become the victim. To leave that feeling of powerlessness behind, I decided that, regardless of the circumstances of my injury, I was responsible for my situation from that point forward.

I declared myself at the center of my own emotional and physical well-being and recovery. I decided not to accept an outside source as the final authority, no matter how credible. I knew that I was the one who would ultimately heal myself anyway, regardless of the method used.

That decision alone, while not bringing with it an instantaneous and miraculous cure, at least afforded a measure of relief and a feeling of having more access to different choices, rather than living entirely at the mercy of outside authorities and systems.

Notice What You Can Control

In an effort to feel less at the mercy of outside forces and more in control of my life, I started noticing what aspects of my life were still under my control.

I noticed the decisions I was already making and congratulated myself for them. I also looked at the ones I could take back -- that I had handed over to others because I didn’t know I could make them for myself or felt I didn’t have the knowledge or strength to make on my own.

Instead of following along with everything suggested by medical practitioners without question, I took authority back for myself and became part of the decisions about medications and treatments.

Choose Your Own Path

I decided that I was in charge of my own healing path. I became as knowledgeable as I could about my condition and what modalities were available, so that I could make informed decisions about my treatment.

I researched alternative therapies, natural healing, recent studies and the latest medical breakthroughs. I read blogs and stories about how other people were coping with my condition, and how some had made improvements or found ways to cure themselves.

I looked into what I could can do for myself: How improving my diet could help healing, how I could think more positively, what herbs and supplements might be beneficial, how I could reduce the amount of stress I was under, and how I could get more restful sleep.

Some of these things made only small changes in the amount of pain I was in, but doing them gave me a greater sense of direction in terms of finding ways to live with and ease my pain. It felt empowering to make my own choices, instead of putting my condition and my pain at the helm all the time.

Living with constant pain can make you feel powerless. It’s easy to feel that you have lost control over your own destiny. But thinking of yourself as a victim of pain or a victim of circumstances does very little to help you move toward whatever healing is possible for you.

Deciding to take control of whatever is in your power, taking responsibility for your own healing path, and making conscious choices toward increased well-being on a daily basis can help relieve feelings of victimization and powerlessness. And it allows us to be more fully available to new possibilities that may come our way.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.

How Positive Thinking Helps Me Cope with Chronic Illness

By Ellen Lenox Smith

Recently, I had a column published on tips for coping with gastroparesis – a digestive disorder that interferes with the movement of food through the intestine.

Despite my research and best efforts to try all the advice I gave, I continued to have no success with elimination. My life was weekly colonics, along with home enemas on the other days.

After six months of my gut essentially being shut down, I finally went to a new doctor, to find out that the diagnosis of gastroparesis was incorrect. I was dealing instead with “motility issues” caused by Ehlers-Danlos syndrome.

Feeling frustrated and discouraged, but also determined, I decided to try one more alternative treatment to see if I could find some relief.  

I found my old DVD of the “The Secret” and forced myself to once again listen carefully to what was being described, to see if this could turn things around. I had used this process before when I first had to retire, as I was experiencing excessive stress relative to our financial situation. I was so concerned how we would survive financially without my income.

Watching the DVD, I learned to understand that energy flows where attention goes, and that life is a product of our thoughts and feelings. It seemed nuts to me at the time, but I had nothing to lose and everything to gain if the process worked.

ellen lenox smith

I began to focus on wanting to have enough money to pay our bills. And strangely enough, within a month, that stress over money seemed to leave me and I began to trust that things would fall into place.

Today, ten years later, I have remained calm about money, which still shocks me! This was not who I was before.

Now I was back to the drawing board to see if this could turn my motility issues around. Since energy flows to what you focus and think about, you have to train yourself not to focus on what you don’t want, but on what you are grateful for andwant in life.

To give this a try, I was to wake up each morning and spend a few minutes in bed thinking about what I am grateful for and then visualize what I want in life. Since it seems harmless and I needed help, I decided to try this process again.

About three weeks ago, I started doing this visualization, remembering what it was like to feel the sensation of having to eliminate and also the process of feeling the release. I know this sounds somewhat irrational, but after six months of nothing working, I was game for anything.

Within three weeks of trying it, I began to not only feel the sensation, but actually began to have success with elimination. All seems to be “on go” unless I eat foods that I react to or I’m under stress, both of which cause the GI system to shut down.  

My system has only shut down three times in the past three weeks. Something is changing and the results are thrilling and fill me with new hope.

Focusing on the positive and pushing negative situations out of the mind is not easy. Just look at the evening news! We wait until the end of the national news for one piece called “Making a Difference” that ends the broadcast with one positive report. Why don’t we sit and watch all positive things that have happened that day?

“The Secret” states: “Everything we think and feel is creating our future. If you’re worried or in fear, then you’re bringing more of that into your life throughout the day.”

What do you have to lose to give this a try? I now no longer stress about money and have added a successful movement of my gut again after six months of no success. I love how much more positive and hopeful I am feeling by practicing this simple process. Future goals to try will be imaging a walk on sand and in my yard,. along with driving again.  

Over the past eight years, I have utilized many conventional treatment modalities. Not all have proven successful, but I feel that I owe it to myself and my family to explore any treatment which might enhance the quality of my life.

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

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Wheat Protein Could Worsen Chronic Illness

By Pat Anson, Editor

Gluten isn’t the only reason why some people should avoid eating wheat.

German researchers have discovered a second protein in wheat that triggers inflammation and worsen symptoms of multiple sclerosis, lupus, rheumatoid arthritis and other chronic illnesses. The finding could help explain why some people who are not gluten intolerant and do not have celiac disease still benefit from going on a gluten-free diet.

Researchers say a family of proteins called amylase-trypsin inhibitors (ATIs) make up only about 4% of the protein found in wheat. But they can trigger powerful immune system reactions outside the digestive system, in the lymph nodes, kidneys, spleen and brain.

"As well as contributing to the development of bowel-related inflammatory conditions, we believe that ATIs can promote inflammation of other immune-related chronic conditions outside of the bowel,” said lead researcher, Professor Detlef Schuppan of Johannes Gutenberg University.

“The type of gut inflammation seen in non-celiac gluten sensitivity differs from that caused by celiac disease, and we do not believe that this is triggered by gluten proteins. Instead, we demonstrated that ATIs from wheat, that are also contaminating commercial gluten, activate specific types of immune cells in the gut and other tissues, thereby potentially worsening the symptoms of pre-existing inflammatory illnesses.”

Schuppan presented his findings at United European Gastroenterology Week. He said future clinical studies will explore the role that ATIs play on chronic health conditions in more detail.

"We are hoping that this research can lead us towards being able to recommend an ATI-free diet to help treat a variety of potentially serious immunological disorders," said Schuppan.

Celiac disease is a gastrointestinal inflammation caused by the ingestion of wheat, barley, rye, and other foods containing gluten. About 1-2% of the population has celiac disease, but most cases go undiagnosed and untreated.

People with non-celiac gluten sensitivity (NCGS) may also develop gastrointestinal symptoms, as well as headaches, chronic fatigue, fibromyalgia and allergies. Abdominal pain and irregular bowel movements are frequently reported with NCGS, which can make it difficult to distinguish from irritable bowel syndrome (IBS).

The symptoms typically appear after the consumption of gluten-containing food and improve rapidly on a gluten-free diet, even though gluten does not appear to cause the condition. Schuppan says the real culprit may be ATIs.

"Rather than non-celiac gluten sensitivity, which implies that gluten solitarily causes the inflammation, a more precise name for the disease should be considered," he said.

Chronic Pain Patients Go Underground for Relief

By Pat Anson, Editor

The stories seem a little hard to believe. Miraculous cures. Migraines that fade away.  Cataracts that disappear.  People crippled by arthritis suddenly able to walk again.

“I’ve seen people come in with crutches and throw the crutches way. I’ve seen some stuff that’s just crazy,” says Clint Feehan.

“We’ve seen a lot of miracles,” adds Irene Kohut.

We’re not talking about Lourdes or some other religious shrine, but an abandoned gold and silver mine in southwest Montana that’s been resurrected as a radon health mine.

For over 60 years, tens of thousands of people hobbled by arthritis, diabetes, fibromyalgia and other chronic conditions have visited the Merry Widow Health Mine. Many heard stories – often passed down by relatives and friends – that low levels of radon gas inside the Merry Widow will cure whatever ails them.

Radon is a colorless and odorless gas that is a natural byproduct of decomposing uranium. At high levels, radon gas can be dangerous and has been linked to cancer, but at low levels advocates say it helps reduce inflammation and has other healing properties.

Located near the hardscrabble mining town of Basin, the Merry Widow doesn’t look like much from the outside. Just a dark tunnel cut into the side of a mountain. Walk inside though and you’ll see people playing cards, reading and cheerfully chatting away in a friendly, social environment.

Many soak their hands and feet in cold spring water that seeps from the mine shaft. Others drink the water, convinced it will restore them.

“I drink it all the time. The water’s good for you. And I take water home with me. I take 20 gallons home,” says Feehan, a 64-year old Wyoming man who started visiting the Merry Widow three years ago to help with his arthritis pain.

“I could hardly get out of bed. My back, hands and ankles all hurt. So we just came up here and tried it, just for the heck of it. I had nothing to lose,” he said.

Like many, Feehan learned that it usually takes multiple trips inside the Merry Widow – for an hour or so at a time -- before he started to benefit from the experience.

“When you first came in, after a day or two, you’ll feel like you’re getting the flu. You’ll feel like you’re getting sick and you don’t understand why. And you think it’s not doing you any good. But it’s the toxins leaving your body is why you don’t feel good. And if you just keep coming, you’ll come out of it.”

That flu-like feeling is what Veronica Kim experienced when she first visited the Merry Widow in 2004. Veronica suffers from an inherited connective tissue disorder that left her unable to walk and confined to a wheelchair.  

“At first I didn’t have any result. Three days later my symptoms got worse,” Veronica says. “And my husband came to the office and said someone said this would be good for my wife but my wife’s symptoms got worse than ever. And everyone’s laughing and they said congratulations. That means its working!”

The treatments did eventually work for Veronica and she no longer needs a wheelchair.

“I can walk. I can jump. I can kick you even!” jokes Veronica, who started visiting the mine twice a year from her home in Seattle. “Seven days in spring and seven days in fall. I have to do it regularly. My body tells me I need a treatment.”

Veronica and her husband Chang -- who says the mine helped ease his back pain -- were so impressed they bought the Merry Widow in 2008.

The Kims recommend 32 one-hour visits to the mine spread out over 10 to 11 days – an obvious commitment of time and energy for anyone who wants the “full treatment.” Visitors pay $15 for an all-day pass.

“We have really nutritious water, which is mineral water, spring water. I’ve seen so many people, the water cleanses out their kidney stones,” says Chang Kim. “After two days you will see the changes in the complexions. Your face complexion starts changing. Your face shines. You detoxify.”

veronica and chang kim

Exactly how the radon gas helps people is not clear and Kim is careful not to make scientific claims about radon's benefits. He and others who’ve tried the treatment say a certain amount of faith is necessary to make it work.

“Human bodies are affected by emotional things. They got to be ready to get a treatment. You have to be in a phase believing that this mine will work,” he said.

Is it nothing more than wishful thinking? Does spending an hour or so in a cool damp mine have some kind of restorative effect? Does the social, communal atmosphere of being around other true believers play a role in making people feel better?

Irene Kohut first visited the Merry Widow 18 years ago, after a stroke left her partially paralyzed. All she knows is that the mine worked for her.

“I couldn’t brush my hair and had no feeling on one side,” she said.  “I think it helped. It always helps, but you have learn to believe in it. That’s what we come here for. And for the people.” 

Can Fish Oil Supplements Help Prevent Lupus?

By Pat Anson, Editor

Taking fish oil supplements could help prevent lupus and other autoimmune diseases, according to animal studies at Michigan State University.

Researchers gave female mice genetically disposed to lupus an omega-3 fatty acid called DHA, or docosahexaenoic acid, which is found in fatty, cold-water fish. The findings, published in PLOS ONE, were “overwhelmingly positive,” according to researchers.

“What we discovered was when lupus was triggered by crystalline silica, a toxic mineral also known as quartz that’s linked to human autoimmunity, DHA blocked the activation of the disease,” said Melissa Bates, one of the study’s lead authors and a doctoral student in MSU’s Department of Food Science and Human Nutrition and the Institute of Integrative Toxicology.

Lupus is a genetic disease that can be triggered by inhaling crystalline silica and by other environmental factors such as sun exposure. Quartz is the most common, and most dangerous form of crystalline silica, and is often found in the agriculture, construction and mining industries, where workers can breathe in the mineral dust.

“Lupus is the body’s immune system attacking itself and it can damage any part of the body including skin, joints and organs,” said James Pestka, an MSU professor of food science and human nutrition.

The study looked at the effect of DHA on lupus lesions in the lungs and kidneys of laboratory mice.  

“Ninety-six percent of the lung lesions were stopped with DHA after being triggered by the silica,” said Jack Harkema, a pulmonary pathologist. “I’ve never seen such a dramatic protective response in the lung before.”

Harkema says the DHA could be changing the way lung cells, also known as macrophages, react to the silica and somehow alter the immune system’s response.

“Cells in the lung can gobble up the silica, but it’s so toxic, it kills these cells,” Harkema said. “When they die, signals are sent out to the immune system that something is wrong. The body then produces such a strong response that it also starts to target healthy cells.

“Our next step is to figure out exactly what’s happening,” he said.

One theory is the DHA helps cells send an anti-inflammatory signal to the body so it doesn’t overcompensate and trigger an autoimmune response. Another is that DHA allows the cells to swallow up and remove the toxic silica from the lung without dying, preventing any inflammatory signals from being sent.

“What we do know is this study is a clear indication that eating DHA can prevent this one type of environmental triggering of lupus,” Pestka said. “It can suppress many of the disease’s signaling pathways, which current drugs on the market now try to target and treat.”

The National Institute for Environmental Health Sciences and the Lupus Foundation of America funded the MSU research.

DHA is produced by the algae that cold water fish eat and store in their bodies. It can also be found in fish oil supplements, which are used by more than 30 million Americans.

Previous studies have found that fish oil lowers an inflammatory response associated with autoimmune diseases. Fish oil may also help prevent cardiovascular disease and hypertension, although consuming large amounts of it may increase the risk of internal bleeding or stroke.

Don’t Take Away My Right to Kratom

By Jennifer Sage, Guest columnist

I'm on Day 5 of a withdrawal from all of my pain and anxiety meds at the moment this is written.

I just took my morning kratom about 30 minutes ago, assisted to the kitchen with my cane, and right now I can not only walk without the cane, but have zero effects of withdrawal. A very slight headache in the first few days, on and off, but that's it.

I would like to mention I'm 35, a multiple sclerosis sufferer, and a prescribed pain med patient for 7 years. I took off my fentanyl patch on Day 1. Haven't touched a hydrocodone since Day 1. Haven't taken anything other than a tapering dose of clonazepam every other day due to the deathly dangers of stopping that cold turkey.

This plant is a miracle. I've gone through the worst of withdrawals from meds that I couldn't function on to a happy, peaceful, pain-free existence without the use of any of them.

I'm a single mom, an author of 7 published novels, a finance industry employee, and I suffered immensely every day, some days even with the meds. I have wonderful doctors and I don't believe the healthcare system has let me down because they were doing all they could to keep me as productive as possible.

I took nearly a year off work 2 years ago because the MS was unmanageable. I only wish I had known about kratom sooner.

Am I going to be a felon now because I can't live in pain and I refuse to go back to that madness of life that kept me sick instead of healing me? A felon for taking a leaf that Mother Earth provided to do this very thing?

I understand the need for regulation. Put an age limit on it. Get the junk out of the smoke shops that real users of kratom don’t use. Go into the forums and you'll see that true users of this plant are buying high quality powders that we mix in water or juice and take it like we would our very dangerous pills.

JENNIFER SAGE

My 10-year old daughter just got her mom back. If you need her testimony of what life was like before kratom and after, I'm sure she would be happy to share with you. Kratom doesn't get you high. It's self-regulating. If you take too much (which I haven't, but I hear it can happen), you just get nauseous.

I've had days where I took 80-100 mg of hydrocodone on top of my fentanyl patch and was still in bed crying. I wanted to take 100 mg more just to stop hurting. But THAT would've killed me.

They've urged me to go on oxycodone and other more powerful drugs, but I get deathly ill when I take them. This is my choice. This plant that has no abuse potential, NONE, has in 5 days changed my life.

I will always be dependent on something to ease my pain. I choose kratom to be dependent on so that I can live my days without pain, and without the fog and stress of consistently wondering when my next meds can be taken. I would give my daughter this herb over the toxic pills for children once there's more research. There are no negative effects, but there are thousands of positive ones.

DEA, your war on drugs is with the meth labs and heroin that riddle our streets. Maybe if so much manpower wasn't being spent on this peaceful, harmless plant, a 10-year old girl in New Mexico would still be alive. Meth killed her and her mother. And you're going to put kratom in the same category?

It is our right to have a voice in this country, and you are trying to take ours away. Listen to the stories. We aren't trying to get high. We're trying to live our lives.

Jennifer Sage is an internationally acclaimed fantasy romance author, mother, advocate for healthy living, active hiker and, more recently, a user of kratom. Jennifer’s most recent book is The Last Valkyrie. You can learn more about her by clicking here.

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

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Nanoparticles May Help Repair Injured Joints

By Pat Anson, Editor

Injecting an injured joint with nanoparticles – tiny, ultrafine particles so small they are invisible to the naked eye – controls inflammation and may help prevent the development of osteoarthritis, according to a new study.

Researchers at the Washington University School of Medicine in St. Louis found that injecting nanoparticles into the injured joints of laboratory mice reduces inflammation and the destruction of cartilage.

The nanoparticles used are more than 10 times smaller than a red blood cell, which helps them penetrate deeply into tissues.  The nanoparticles carry a peptide derived from a natural protein called melittin that has been modified to enable it to bind to a molecule and interfere with inflammation.

“The nanoparticles are injected directly into the joint, and due to their size, they easily penetrate into the cartilage to enter the injured cells,” said Samuel Wickline, MD, a professor of Biomedical Sciences at Washington University.

“Previously, we’ve delivered nanoparticles through the bloodstream and shown that they inhibit inflammation in a model of rheumatoid arthritis. In this study, they were injected locally into the joint and given a chance to penetrate into the injured cartilage.”

The nanoparticles were injected into the mice soon after an injury to prevent the inflammation and cartilage breakdown that can lead to osteoarthritis.

INFLAMMATORY PROTEIN (GREEN) IN CARTILAGE CELLS. IMAGE COURTESY of UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE

Whether such a strategy will work in humans years after an injury -- when osteoarthritis is established and there is severe cartilage loss -- still needs to be studied. But the findings suggest that the nanoparticles, if given soon after joint injuries occur, could help maintain cartilage and prevent the progression to osteoarthritis.

“I see a lot of patients with osteoarthritis, and there’s really no treatment,” said senior author Christine Pham, MD, an associate professor of medicine. “We try to treat their symptoms, but even when we inject steroids into an arthritic joint, the drug only remains for up to a few hours, and then it’s cleared. These nanoparticles remain in the joint longer and help prevent cartilage degeneration.”

Osteoarthritis (OA) is a joint disorder that leads to thinning of cartilage and progressive joint damage. Nearly 40 percent of Americans over the age of 45 have some degree of knee OA, and those numbers are expected to grow as the population ages. Frequently, an osteoarthritis patient has suffered an earlier injury — a torn meniscus or ACL injury in the knee. The body naturally responds to joint injuries with inflammation.

“The inflammatory molecule that we’re targeting not only causes problems after an injury, but it’s also responsible for a great deal of inflammation in advanced cases of osteoarthritis,” said Linda Sandell, PhD, a professor of Orthopaedic Surgery and director of Washington University’s Center for Musculoskeletal Research.

“So we think these nanoparticles may be helpful in patients who already have arthritis, and we’re working to develop experiments to test that idea.”

The study findings are published in the Proceedings of the National Academy of Sciences. The study was funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases; the National Heart, Lung, and Blood Institute; and the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health.