How Going Gluten-Free Changed My Life

By Lisa Ayres, Guest Columnist

I would like to share with readers my life-changing experience after eliminating gluten from my diet.

I had spinal implant surgery for spondylolisthesis about 24 years ago. For those who don’t know, spondylolisthesis is a defect in the spine that causes vertebra to slip to one side of the body. You can have spondylolisthesis without even knowing it. Someone may experience little to no pain and not know they have a “back issue.”

In my case, it got progressively worse as time went on.

After the surgery, I had physical therapy and even became certified in personal training to learn how to care for myself. I also took hydrocodone for pain, up to 3 tablets a day depending on my activities.

About 10 years ago, I also started having arthritis in my hands. They would throb after a few hours of gardening or similar use. I was told it was erosive arthritis. My toes also were affected and caused me a great deal of pain when I was on my feet without thick soled shoes.

My 24-year old daughter suffered from intestinal problems most of her life. After having pizza with friends one day, she came home with stomach cramps and was basically ill. I do a lot of research on issues that crop up in our lives and gluten intolerance kept popping up online as a clear possibility.

As a declaration of solidarity, and to make meals and shopping easier, I joined my daughter in going gluten and casein free. I found out that if one has gluten intolerance, they almost always have casein intolerance also. Casein is found in dairy products. 

LISA AYRES

It wasn’t easy for us to rid our diets of both gluten and casein, but to find out if my daughter’s illness was caused by them we had to start somewhere. On April 21, 2015, we cleared our diets and house of all gluten and casein products.

The first initial change was that my daughter appeared to get sicker. Stopping gluten is similar to stopping opioids for some people -- you go through a type of withdrawal. There are many websites, such as MentalHealthDaily.com, where you can learn more about gluten intolerance, withdrawal, and what you can and cannot eat. 

For 8 days she had severe joint pain and flu like symptoms. She said her joints felt worse than the pain she experienced when she broke her foot years before. But, her stomach discomfort began to subside almost immediately after giving up gluten and casein. By the ninth day the withdrawal symptoms vanished and she was feeling wonderful.

I didn’t have stomach problems caused by gluten, but my daughter and I live together and it would be not only unkind to eat restricted foods in front of her, it would be difficult to prepare separate meals, separate work areas, etc. So I changed my diet when she did. 

I had an unanticipated reaction. I had no withdrawal symptoms, but within 48 hours I had what can only be described as miraculous changes.

Due to the arthritis, my hands had a limited range of motion. My fingers were thick with swelling and I hadn’t been able to make a fist with my left hand in at least two years. My right hand also was swollen. The throbbing at night, sometimes without any particularly heavy use, was not only painful but depressing. Activities I had enjoyed were quickly running from my life. I was only 58-years old but felt decades older. The ongoing ache in my back was like an unwelcome guest that I could only get to leave with hydrocodone. 

But 48 hours after going gluten and casein free, I awoke, stretched, and moved my hands freely. My ring felt loose on my finger, the clench of my hands strong and flexible. 

This dietary change is a game changer for me. Plans I had put aside and tried to forget are now possible again. The pain in my back is now mainly managed with Tylenol and then only a couple of times a month. I have only taken hydrocodone twice since dropping gluten from my diet. My depression also has lessened. 

The systemic inflammation caused by the allergic reaction to gluten should not be ignored. A two week elimination diet is the best and only way to see if gluten really is the culprit. Tests currently are not accurate. 

My daughter had an emergency appendectomy and bowel re-section. It was advised by a gastroenterologist that she also get tested for celiac disease. Mind you, this is an experienced doctor.  They did an endoscopy on my daughter and the results were negative. However, the test results page included a disclaimer that if the patient had already cleared their system of gluten and there was no inflammation, the test wouldn’t be accurate for celiac or gluten sensitivity. 

The doctor didn’t tell us that eliminating gluten would “hide” her sensitivity. We only happened to have read the results ourselves. So the test wasn’t needed for her to know to avoid gluten!

Eliminating gluten and casein from your diet is the most accurate way to find out if you have an allergy or sensitivity to them.  I think many people aren’t aware that gluten and casein can cause such reactions. They hear how people are getting tested and clearing them from their diets, but when the results are negative, it feeds into the belief that being gluten-free is just a fad. 

If you are in pain, remember that gluten causes systemic inflammation which is pressing on sore joints and everything else in your body. You owe it to yourself to be as pain free as possible.

Lisa Ayres lives in South Florida. She suffers from spondylolisthesis, arthritis, and is gluten and casein intolerant.

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.

Updated Device Helps Prevent Migraines

By Pat Anson, Editor

A new pocket-sized wearable device is available to help treat and prevent migraine headaches.

Cefaly Technology has released the Cefaly II, an updated version of the Cefaly I, which is worn over the forehead like a headband and uses small electrical impulses to stimulate the trigeminal nerve, which has been associated with migraine headaches.

The Cefaly II is much smaller and fits in the palm of a hand. Like its predecessor, the device is worn on the forehead, but is held more securely in place by a magnet. Because of its smaller size, the manufacturer believes the Cefaly II will be more accessible and easier to use.

“This compact device is so easy to tuck in a pocket or purse and I am hopeful it will further increase compliance and bring an even larger reduction in migraine attacks to patients,” said Dr. Pierre Rigaux, Chief Executive Officer of Belgium-based Cefaly Technology.

“Now that the device is so small, it’s a big deal because patients can have their Cefaly II with them wherever they go, which means they’ll be able to use it more readily, at their most convenient time.”

cefaly technology image

The Cefaly II uses a magnet to attach itself to a self-adhesive electrode worn directly on the forehead. The rechargeable, battery powered device sends tiny electrical impulses through the skin to desensitize the upper branches of the trigeminal nerve and reduce the frequency of migraine attacks. Patients have full control of their daily 20-minute session and can ramp up the intensity to their own comfort level.

In a small study of 20 migraine sufferers, published in The Journal of Headache and Pain, the Cefaly I provided "statistically significant" pain relief and an 81 percent reduction in the number of migraine attacks. Patients in the study also said they used significantly less migraine medication.

The electrode and output of the Cefaly II is identical to the Cefaly I, according to the company.

Here’s a company produced video of how the Cefaly II works:

The Cefaly II is only available by prescription and costs $349, with a 60-day money back guarantee. The device can be ordered online by clicking here. The Cefaly I will no longer be offered, but the electrodes for it will be available for another 5 years. Cefaly Technology has sold about 20,000 of the devices in United States and 80,000 outside the U.S.

Migraine is thought to affect a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. It affects three times as many women as men. In addition to headache pain and nausea, migraine can also cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound.

How Curcumin Helped My Chronic Pain

By Judie Plumley, Guest Columnist

In 2013 I had a spinal fusion, 7 months after I had transvaginal mesh removal and reconstruction surgery.  During the operation, I contracted a severe bacterial infection in my spine called methicillin-resistant Staphylococcus aureus (MRSA). 

To make a long, painful story short, I ended up having 5 more spinal surgeries in the next year.  They did not get rid of the infection until it had liquefied 2 vertebrae and surrounding tissue. It almost killed me. 

There is extensive nerve damage, and my back is filled with rods and screws. 

During the worst of it I was on fentanyl, Dilaudid, Demerol, gabapentin (Neurontin) and oxycodone.  I spent 2015 weaning myself off the narcotics.  I was losing my insurance and I knew if I didn't, I would be in a withdrawal from hell.

I did go to two pain clinics, but just simply refused to be treated like a criminal.  I started exploring other options to deal with my pain.

Judie Plumley's spine

Since my son is a massage therapist, the first thing I started as soon as I was able was to get weekly massages while I healed.  Joseph stretched the forming scar tissue in order to allow me to move.

Next, I started using kratom, a half teaspoon twice a day.  I was amazed by the effect.  It knocked out a considerable amount of pain, but I was still spending 12 to 14 hours in bed each day.

About 2 months ago, my sister told me to try a supplement that combined curcumin – a yellow spice -- with black pepper oil. I bought it from Amazon, $15 for 120 caps. 

I am amazed with the results!  My pain is now bearable.  I can do about twice as much as I could before, and I am spending much less time in bed.

I am now in the process of getting off the gabapentin, but it is much harder than any of the narcotics.  The withdrawal is horrible.  As soon as this devil is off my back, I am done with doctors and hospitals.

curcumin

I refuse to be treated like a drug addict or a criminal.  I believe pain clinics are nothing more than a scam and that drug companies intentionally add things to their drugs to make people addicted. The antidepressants that are taking the place of opiates are even worse! Ever heard of a brain zap?

I swear, they are trying to kill us, or drive us to kill ourselves.  I don't understand why they are attacking people in chronic pain.  It's a terrible way to live.  I am lucky I have my son, a good support system, and have found something that works.  Life is hard enough as it is.

I have kept a journal since 2014.  I plan to write a book about my experience with MRSA.  Unless you’ve had it, you have no idea how dangerous and painful it is.

Judie Tucker Plumley lives in Georgia.

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.

Benefits of 'Sunshine Vitamin' Not So Clear

By Pat Anson, Editor

Maybe Vitamin D isn’t all it’s cracked up to be.

We’ve reported on several studies showing that low levels of Vitamin D are linked to a variety of chronic pain conditions, as well as anecdotal reports that taking Vitamin D supplements can relieve pain and make you feel better.

But a Canadian researcher says there is very little evidence that the “sunshine vitamin” does any of that.

"Wouldn't it be great if there was a single thing that you or I could do to be healthy that was as simple as taking a vitamin, which seems benign, every day? There is an appeal to it. There is a simplicity to it. But for the average person, they don't need it," says Michael Allan, a professor of Family Medicine and director of Evidence Based Medicine at the University of Alberta's Faculty of Medicine & Dentistry.

Allan is the lead author of a review published in the Journal of General Internal Medicine that examines the evidence for 10 common beliefs about vitamin D. Those beliefs include the ability of vitamin D to prevent rheumatoid arthritis, treat multiple sclerosis, reduce falls and fractures, and improve depression.

The review found little evidence that Vitamin D supplements have much effect at all.

"Even areas that we really thought there was good evidence for benefit early on, don't seem to be bearing out," says Allan. "It makes it really difficult to determine a lot of time if there is anything substantial there that you could tell a patient, 'You can take this and it can help you this much.' There's really not nearly enough there to say that."

Allan and his colleagues did find evidence that Vitamin D can have an impact in reducing the number of falls and fractures among the elderly. But the effect is minor.

"Many people would say taking a drug for 10 years to stop one in every 50 fractures is probably not enough to be meaningful. And that's the best vitamin D gets as far as we know now," he said.

There have been over 1,600 studies conducted on Vitamin D in the last decade alone, but Allan says much of the research was poorly executed and 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.

Most people get all the Vitamin D they need by being exposed to ultraviolet rays in sunlight. You can also get it by eating foods rich in Vitamin D, such as oily fish and eggs.

“Evidence does not support vitamin D supplementation for the treatment of multiple sclerosis and rheumatoid arthritis or for improving depression/mental well-being. Regular testing of 25-hydroxyvitamin D is generally not required, and mega-doses appear to increase harms,” Allan said. “Much of the evidence is at high risk of bias, with multiple flaws, including analyses of secondary endpoints, small and underpowered studies, inconsistent results and numerous other issues. Therefore, enthusiasm for a vitamin D panacea should be tempered.”

Despite the lack of evidence, belief in the benefits of vitamin D supplements remains strong. Allan believes much of it stems from misplaced trust in studies that show low vitamin D blood levels are linked with poor health. However, association does not prove causation.

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

Pain Companion: How to Release Pain

By Sarah Anne Shockley, Columnist

In all the discussions about pain medications, various approaches to healing and alternative treatments, we don’t want to overlook a key aspect of the nature of pain.

Chronic pain is a messenger. It is here because it has something to say.

Giving pain a voice helps it, in incremental stages, to complete, release and move on.

What does it mean to give pain a voice? You may already be familiar with journaling and finding someone to tell your pain story as ways to relieve the emotional ramifications of living with chronic pain. They are excellent and I highly recommend them, but that’s not what I’m talking about here.

Rather than expressing how you feel about pain, I recommend finding ways to let pain express itself. Think of it as allowing the part of you that is experiencing physical pain to express from within the pain and as the pain.

For example: the next time you decide to journal, instead of writing about your feelings and experiences, try taking a deep breath and stepping into the pain.

I know, at first you may think, yuck, why would I step into my pain? It’s already hard enough to live with it. But bear with me.

From the experience of being within the pain, begin to write what pain wants to say. Write as if you are the pain speaking. Write about what pain feels like to be in your body, what pain wants, and what pain is trying to accomplish by being there. Don’t try to figure this out in your head. Just go into a slightly altered state of consciousness and let the words flow, even if they seem like nonsense at first.

Ask your pain questions, and let it respond. Who are you? What are you? What are you doing in my body? What do you really want? How can I help? How can I soothe? How can I heal?

If it’s difficult to step out of your thinking mind and you find yourself trying too hard to come up with answers for pain, try writing with your non-dominant hand.

The first time you express yourself as pain may feel a little strange or silly, and you may come up blank at first. Just be patient. Pain isn’t used to being listened to in this way. It might take a moment for it to register that you actually want to hear what it has to say.

Experiment with other ways to let pain express too.  Instead of journaling, you can try speaking for pain. Designate a chair in the room as pain’s chair for a moment. Then go sit in it and speak into the room as pain (or do this from bed if you aren’t mobile right now). Just let the words flow.

Pain may surprise you. It may express as very angry about being stifled all the time. Or very tender. Or confused. Or incredibly sad.

Don’t try to analyze it while it’s happening. Just let pain express as pain wants to, however that is. Right now, even though pain feels like a nasty invader, it’s living in your body and it’s a part of your experience that needs to be heard. It’s part of you expressing as pain.

Another way to express pain is to use your voice to express pain as a sound. You might want to wait until you’re alone for this one.

Again, take a breath and go into the experience of pain in your body, and then begin to hum from that place. Experiment with very high and very low pitches. Let the hum express the sound of pain. Then, if you’re feeling adventurous, let the humming morph into other sounds: moans, groans, high pitched whines, sobs, sighs -- whatever sound wants to come from the pain in your body.

It’s most freeing to just let the sounds come out in whatever form they want to take, whether loud or soft. If you’re self conscious or there are others in the house you don’t want to disturb, you can make the sounds into a pillow. Just make sure you’re listening. You are the most important person to hear the sounds of your own pain. It is a way of witnessing, validating, and releasing the pain you’re in.

Do this for as long as you want (or until the dog starts howling). If you’re musically inclined, you might want to make up a song of lament or a song of freedom. Give pain the stage for a few moments.

This may strike you as naively over simplified, but I have found throughout my pain journey that the most potent remedies for ongoing pain are very straightforward and simple. Rest often. Reduce stress and stay as calm as possible. Release held or restricted breath and allow its life-giving and healing force to move more freely through you body. And give pain a voice.

Remember, probably no single thing you do to heal, soothe, express or release your pain is going to be the whole story of your healing. Chronic pain is multi-leveled and complex. Yet all of the simple, yet profound practices we put into effect on a daily basis have a positive cumulative effect. I can testify to that.

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.

Migraines Linked to Low Levels of Vitamin D

By Pat Anson, Editor

Low levels of Vitamin D have been associated with fibromyalgia, rheumatoid arthritis, multiple sclerosis and other chronic pain conditions. And new research suggests the “sunshine vitamin” may play a role in preventing migraines.

Researchers at Cincinnati Children's Hospital Medical Center found that a high percentage of children, teens and young adults with migraines appear to have mild deficiencies in vitamin D, riboflavin and coenzyme Q10. The latter is a vitamin-like substance found in cells that is used to produce energy for cell growth and maintenance.

"Further studies are needed to elucidate whether vitamin supplementation is effective in migraine patients in general, and whether patients with mild deficiency are more likely to benefit from supplementation," says Suzanne Hagler, MD, a Headache Medicine fellow in the division of Neurology at Cincinnati Children's Hospital Medical Center. She presented her findings at the annual meeting of the American Headache Society in San Diego.

Hagler studied a database of patients with migraines who had their blood levels checked for vitamin D, riboflavin, coenzyme Q10 and folate, all of which have been linked to migraines in previous and sometimes conflicting studies.

Many of the patients were put on migraine medications and received vitamin supplementation, if their blood levels were low. Because few received vitamins alone, the researchers were unable to determine if vitamin supplements by themselves were effective in preventing migraines.

Hagler found that girls and young woman were more likely than boys and young men to have coenzyme Q10 deficiencies. Boys and young men were more likely to have vitamin D deficiency. Patients with chronic migraines were more likely to have coenzyme Q10 and riboflavin deficiencies than those with episodic migraines.

Vitamin D helps control levels of calcium and phosphate in the blood and is essential for the formation of strong bones and teeth. Vitamin D also modulates cell growth, improves neuromuscular and immune function, and reduces inflammation

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.

Danish researchers found that exposure to sunlight may delay the onset of multiple sclerosis (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.

Low levels of serum vitamin D were found in over 1,800 fibromyalgia patients in a recent meta-analysis (a study of studies) published in the journal Pain Physician. Researchers at National Taiwan University Hospital found a “positive crude association” between chronic widespread pain and hypovitaminosis D.

Pain News Network columnist Crystal Lindell began taking Vitamin D supplements when her blood levels were found to be very low. Within a few months she was feeling better, exercising more, and losing weight. You can read Crystal’s story by clicking here.

5 Tips on Leaving Your Career Due to Health Issues

By Ellen Lenox Smith, Columnist

Leaving your career due to chronic pain and illness can be heartbreaking, but for some of us it’s a necessary step.

There was never a day in my life as a teacher that I didn’t love getting up and going to work, yet that career had to end due to the progression of Ehlers Danlos syndrome and sarcoidosis. I felt so lost and not sure who I would be without the career I had.

So, one day before retiring, I went for a walk at the Scituate Reservoir in Rhode Island with my dogs at the time, Corey and Carmel. I made the decision to not think about all the emotions entering my mind -- trying to push those negative thoughts away so I could de-stress. I only allowed myself to look and listen to nature.

Within minutes, I started to have words and thoughts come into my head. Before I knew it, I had to come home, sit at the computer and start writing. The first of what turned out to be over a hundred poems poured out of me. I always laugh when I share this experience, for I am not particularly into poetry.

This was the first of my eventual one hundred poems, which helped cleanse my emotions and prepare for announcing my need for retirement and a life with two progressive conditions:    

ELLEN LENOX SMITH

I Attended a Concert This Morning

It was that time to escape, to go for an adventure. We were attending a concert. All ten of our legs got into the car to begin the trip. No clues had been provided to us to prepare for what an impact this performance would have on the rest of our day.

We arrived, opened the door and got out, some of us more easily than others, and then shut the door off from life as we knew it…

It seems that we were late for the concert. It was already in progression. We knew when we arrived that we would have to follow the rules. We had to turn off everything from our lives; the cell, the TV, the radio, computer and most importantly, “the mind”.

We began to walk and quickly heard the concert. It felt loud and overwhelming at first. It felt crowded listening to it despite a lot of space provided. It was too much to hear, too much to absorb. And “the mind”, it wanted to come on, even though it knew it wasn’t invited. But it seemed to finally learn how to respect the rule.

As it cooperated, the concert began to take on a new dimension of sounds and feelings. It became soft, clearer, calmer and incredibly comforting. This concert became exceptional, being absorbed in every space of the mind and body.

And all that was needed to feel this was to just turn off everything else.

The concert never came to a close, but it was time we return to the car and journey back to home as we know and love it. But, we knew we had had an experience that gave us strength and renewal to our lives.

Corey, Carmel and Mom all took a moment to enjoy nature and listen to the truth of life. It was a concert that will never be forgotten. A lesson was learned, “turn it all off”, attend the concert of nature. It’s there for us all and is open at all times.

Looking back, I learned that writing about my emotions helped me face the changes that were happening to my life. It was a very cleansing process that I entered and I continue to do it.

Here are some tips if you are also dealing with the loss of your career:

1. Try writing down emotions that are swirling in your head. You will gain more than you might realize with this process. Many write to the US Pain Foundation for help and I respond to them, but often I do not hear back from them. I believe this is because they’ve cleansed their emotions by just writing down their story and frustrations.
2. Accept that you will have to redefine who you are. I was a teacher by profession, but have discovered I am still teaching, just in a different way.
3. Remember you are not alone for many have also had to face the loss of their career. Try to find comfort in knowing this. I talk to myself and say that if they can do this, so can I!
4. Mourn your losses. You are human and allowed to do this, but remember to move on from this loss too. You are more than your career. There are others things in life that will make you feel worthwhile and productive. It will take work to figure out what you will do next, but it is a worthwhile effort.
5. Try to not get stuck on “Why me?” Instead, try to find a way to move on with acceptance and grace for others to learn from. I always remind myself that although my four sons are now adults, they are still observing how I handle my life, including this process of letting go and redefining. I want to be remembered by them for trying, fighting and not giving up.

I know it is heartbreaking to have to step away from a career, especially if it is one you love. But you also have to remind yourself that you have one life to live, and you need to redefine yourself and find things that will bring meaning, joy and happiness back, despite the loss.

I know this is hard to do, but the effort will pay off in the end. Despite illness, you can discover new things about yourself and have a positive impact in life. Be strong, reach out for support and may you, too, discover there is life despite your huge loss.

Ellen Lenox Smith 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.

Ellen recently published her new book, “It Hurts Like Hell!: I live with pain -- and have a good life, anyway.”

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.

Lasers Work for Fibromyalgia, But Why So Pricey?

By Ryan Baker, Guest Columnist

I’ve had severe fibromyalgia for 14 years, and I’ve been disabled as long. Without a doubt, the pain is certainly a central issue, along with the severe fatigue, flare ups, and crashes.

It’s an absolutely miserable disease that’s intrusive and destructive. I broke commitments that really shouldn’t be broken, which put a strain on personal relationships. The pain is a level of suffering that can easily push one to insanity or worse.

I found laser therapy last October at my chiropractor’s office, where they have a $25,000 K-Laser. While it worked great, I could not get enough coverage all over my body as often as I needed, and it was just too expensive for office visits.

I was getting good results, so I dove into trying to find a laser I could use at home, and settled on a very effective unit for $2,500. Pricey, but worth the convenience of having one I could use whenever I wanted.

Since receiving the TQ Solo laser in late January, I have not taken any prescription pain pills. My hydrocodone, methocarbamol, and Klonopin, which I had whittled down long before the laser to “emergency use only” (once every 3-7 days), have gone untouched since I’ve had the laser.

I have taken 2 ibuprofens for a dehydration headache, but no other OTC meds, aside from vitamins. I take a sleep aide and blood pressure medication, that’s it.  

TQ SOLO LASER

It still astonishes me how well laser therapy works. I still suffer from fibro fog, low energy, and all of the other problems associated with fibromyalgia, but my pain levels have dropped from a constant 7-9 out of 10, to a much more tolerable 2-4. I use the laser between 20 minutes to an hour or more a day, and rather than become resistant, my body seems to respond better after getting used to treatment.

Some areas are completely free of pain at times, which hasn’t happened in 14 years, but if I stop treatment the pain returns. It’s not a cure, my fibro is still terribly limiting, but it’s an amazing treatment for the pain. The decrease in my personal suffering has been outstanding.

The laser is like an alarm clock for under active mitochondria, only stimulating the cells in need. Properly functioning tissue (not in pain) have little to no response, while damaged or inflamed tissue “wake up” and begin healing. Some areas need daily treatment, like my calves and back, while other areas can go days between treatments.

If you’re a fan of science fiction, this is the coolest thing since the smartphone made Captain Kirk’s communicator look silly.

I find the 5 hertz setting, the deepest setting, to be the most beneficial. It’s like a massage, but deeper, and there’s no pain from working tender tissue. In fact, there is very little sensation during treatment. If I can feel the treatment at all, it’s usually a mild tingle or twitch, which I consider a signal to treat more intensely.

The laser does not hurt or burn. It’s very comfortable and soothing, and treating before bed is fantastic for sleep. I don’t wake up with that stiff, poisonous feeling ache anymore.  

I began researching all sorts of red light therapy. I’ve tried several, along with some LED only therapies. I even tried a heat lamp. While the heat lamp and LED therapies felt okay, they were no match for the laser.

While searching for other light therapy devices, I found the Handy Cure. It has a striking resemblance to the TQ Solo I had purchased, but it was selling for under $600. Same frequency settings, same power, same everything. Only the handle was different, as far as I could tell.

I looked it up, and it was made by the same company that makes the TQ Solo. But why so much cheaper? Was it a knock off? Was it less potent, or somehow lower quality? I put an order in.

After using the Handy Cure side by side for weeks with the TQ Solo laser, I can’t tell any difference. It’s just as effective. I’d overpaid by $2,000. I’m not wealthy, and I assume most fibro patients aren’t either, so that hurt.

I started looking into other lasers and found the Game Day laser. It looks exactly like the Handy Cure, no doubt about it, only the labels were different. Instead of variable, 50 hertz, and 5 hertz, the menu is a simple 1, 2, and 3. It appears to me that the Game Day is simply a rebadged Handy Cure.

handy cure laser (left) and TQ solo laser(right)

You’d think the Game Day would be priced more like the Handy Cure, but it’s listed for $2,995! My jaw dropped when I saw that, but the picture became crystal clear. All of these lasers had the same manufacturer and, except for subtle differences, appear to be essentially the same products.

But one sells for under $600 and the other is marked up to nearly $3,000. Why?

I’m not against the profit motive, but I am when people are suffering and treatment is unnecessarily kept out of reach.   

One month later, I have become a distributor for the Handy Cure, making YouTube videos to bring laser therapy to the attention of fellow fibromyalgia patients. It’s been a big adjustment, but a meaningful one. I have no idea what I’m doing, I just know lasers work, and they take some of the “crazy” out of fibromyalgia.

Fibromyalgia pain is real and physical, not some form of hypochondria or mental illness. If it was, the laser would have no physical effect. But it works reliably for my pain, even when I’m particularly depressed.  

I feel vindicated, because something finally works for the pain when powerful opiates barely made a dent. It’s not in my head. 

(Editor's note: Since this article was first published, Pain News Network has been contacted by Max Kanarsky, President and CEO of Multi Radiance Medical, the maker of the Handy Cure laser. Mr. Kanarsky maintains that the "Handy Cure" featured in this article is a counterfeit reproduction of his product, is not FDA cleared, and "might present a hazard to users.")

Ryan Baker lives near Sacramento, California. You can learn more about laser therapy by visiting his website, Chronic Pain Laser.

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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Do You Have Dormant Butt Syndrome?

By Pat Anson, Editor

It’s probably not a condition or therapy they’ll be teaching in medical schools anytime soon.

But if Chris Kolba has his way, millions of Americans will get off their rear ends and start exercising their gluteus maximus, gluteus medius and gluteus minimus.

Those are the three muscles that make up the buttocks and sitting on them all day long can lead to back pain, hip pain and knee injuries -- what Kolba calls “dormant butt syndrome.”

“The entire body works as a linked system, and a lot of times when people come in with knee or hip injuries, it’s actually because their butt isn’t strong enough,” says Kolba, who is a physical therapist at Ohio State Wexner Medical Center.

“The rear end should act as support for the entire body and as a shock absorber for stress during exercise. But if it’s too weak, other parts of the body take up the slack and often results in injury.”   

Dormant butt syndrome (DBS) refers to the tightness of the hip flexors and weakness of the gluteal muscles.

When gluteal muscles are weak, muscles and joints in the hip, legs and knees  absorb more strain during exercise, sometimes leading to injuries so severe they need surgery.

But it’s not just weekend athletes who should worry about DBS. Even people who live sedentary lives due to illness or inclination can suffer from it.

“It’s actually caused quite often by inactivity and the way we sleep,” Kolba said. “Sitting for periods throughout the day weakens the gluteal muscles and puts strain on other parts of our core, as does sleeping in the fetal position.”

Kolba says making an effort to stand and walk around as much as possible can help strengthen the gluteal muscles and avoid pain and injury in other parts of the body.

In this video news release, Kolba offers tips to a marathon runner who suffered a severe knee injury he blames on DBS: 

Experts say "Dormant Butt Syndrome" affects millions, caused by weak glute muscles (COLUMBUS, Ohio) - If you're one of the millions of Americans who suffers from hip, knee or back pain, experts say your butt may be to blame.

Pain Companion: Losing Your Smarts to Pain

By Sarah Anne Shockley, Columnist

In my last column, When Pain Hijacks Your Brain, we looked at a couple of ways that living with chronic pain affects cognitive ability; specifically, blank spaces and brain freeze.

This month we’ll look at memory loss and overall loss of brain power, and share some tips I’ve learned about mitigating their impact.

What to Do About Memory Loss            

Can’t remember what you did yesterday or even two minutes ago? Short-term memory loss is common for people in pain. I believe it is because the body and brain are simply overloaded having to deal with compromised health, and the overall stress and exhaustion that pain creates in the system.                   

Sure, forgetting things happens to everyone. But for those of us living with chronic pain, it seems to happen more often and it takes longer for our brains to come back online.                 

Write yourself notes and stick them everywhere. Write the note immediately or you will forget not only what was supposed to go on the note, but that you were writing a note at all. (No kidding)                               

I keep the smallest size of Post-it Notes in my car and stick notes on the dashboard so I don’t forget where I’m supposed to be later or what I need to do when I get home. I leave these little pads all over the house with pens nearby.                   

I have Post-its all over my computer, my desk and my kitchen, and I just throw them out when I’m finished with them. I have gotten into the habit of writing EVERYTHING down the minute it comes into my head and sticking it immediately where I will find it later.                   

What about the problem of walking over to the Post-it pad and forgetting what you’re supposed to write there on the way? (You’re only laughing because something similar has happened to you, I’m sure!)

Go back to the physical spot where you were when the thought came to you and put yourself in the exact same position and wait a moment. Somehow, the body and brain sort of coordinate in resetting yourself back in time, and then your brain often sends you the same message again.                   

Oh, and don’t forget to have the Post-its and pen already in hand.        

What to Do About Loss of Brain Power                   

My brain in pain can barely make sense of how to balance my bank accounts. Truly. It scares me to look at a row of numbers. Not because numbers are scary to me or I’m terrible at math – I aced all my graduate finance and economics courses – it scares me because, when in pain, I can’t make heads or tails of them. It’s like looking at Egyptian hieroglyphs.                   

It is incredibly disconcerting to lose your smarts to pain. Focusing on anything becomes nearly impossible. I remember having a vocational aptitude test done after I was injured and not being able to read a high school level paragraph or answer the questions appropriately.

I sat there and reread the same three-sentence paragraph about four times and simply couldn’t make any sense of what they were asking me to do with it. If you’ve had an experience like this, you know how frightening it can be to realize you just don’t have access to your normal cognitive functioning. It’s like someone turned the lights off upstairs.

Your brain in pain is simply not firing on all cylinders or most of its energy is going to dealing with the pain you’re in and healing your body. There just isn’t much brainpower available to you for normal cognitive processes.                   

This was true for me during the most acute part of my pain and it went on for quite some time. Thankfully, I have been able to recover much more access to my cognitive processes since then. So, please know that if you are going through the worst of this kind of side effect right now, it can get better as you move out of the most acute pain. You can get your brain back.             

For the purpose of regaining a modicum of brainpower, and for using some of my unused mental energy, I started doing extremely easy Sudoku puzzles, a popular Japanese number game.                   

At first, doing Sudoku worked like a sleeping pill because I quickly wore my brain out just trying to make sense of the very easiest puzzles and basically knocked myself out. I kept at it as a nightly sleep aid and eventually I was able to complete the easy puzzles. I usually had to erase what I’d already filled in and start over about 3 or 4 times in order to finish one small puzzle.                

I found that, in addition to acting like a benign sleeping pill, Sudoku helped bring my brain back online over time. I was able to progress from Easy to Medium to Hard. (I have not graduated to the Evil level yet.)

This tells me that even if the brain is hijacked by pain, it is possible to bring it back by starting small. Simple crossword puzzles can work too, but initially I found that even these were too demanding and frustrating. I could come up with a number from 1 to 10 more easily than a specific word.      

There are other ways to bring the brain back online as well: Scrabble, Monopoly, cribbage, backgammon or any other game requiring some counting, but are not overwhelmingly complex.

Jigsaw puzzles, origami, scrapbooks, photo collections; anything that requires organizing visually can also be useful. If you have enough mental energy for it, small amounts of foreign language study can also do the trick. Many public library systems have easy and free courses you can use online.

These ideas seem really simple, I know, but that’s exactly where to start. Really easy and really simple.

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.

Talking Turkey: How Food Plays a Role in Pain

By Pat Anson, Editor

There’s a nugget of truth to the old saying, “You are what you eat.” And no, we don’t mean chicken nuggets. We’re talking turkey.

Researchers at Brigham and Women's Hospital in Boston say changes in diet and gut bacteria appear to influence the activity of brain cells involved in controlling inflammation and neurodegeneration. They’ve published their study in the journal Nature Medicine

"For the first time, we've been able to identify that food has some sort of remote control over central nervous system inflammation," said corresponding author Francisco Quintana, PhD, an investigator in the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital.

"What we eat influences the ability of bacteria in our gut to produce small molecules, some of which are capable of traveling all the way to the brain. This opens up an area that's largely been unknown until now: how the gut controls brain inflammation."

While studying laboratory mice, Quintana and his colleagues found that gut bacteria produce molecules that influence astrocytes -- star-shaped cells that reside in the brain and spinal cord.

The molecules, which are derived from tryptophan (an amino acid found in turkey and other foods), act as fuel that helps the astrocytes limit brain inflammation.

In blood samples from patients with multiple sclerosis (MS) – a disease that attacks the body’s central nervous system -- the researchers found lower levels of these tryptophan-derived molecules.

"Deficits in the gut flora, deficits in the diet or deficits in the ability to uptake these products from the gut flora or transport them from the gut -- any of these may lead to deficits that contribute to disease progression," said Quintana.

MS is a chronic and incurable disease that causes numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain.

In addition to turkey, tryptophan is found in other high-protein foods such as chicken, beef, nuts and cheese. Its a myth that eating lots of turkey will put you to sleep, according to the American Nutrition Association. But tryptophan does help produce serotonin, a neurotransmitter that regulates mood and mental activity,

Scientists are just beginning to recognize that food and gut bacteria play a role in multiple sclerosis and other chronic pain conditions.

Researchers at New York University’s Langone Medical Center recently found that some intestinal parasites and bacteria play a beneficial role in helping to balance the immune system, and reduce rates of inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis.

Sanitary practices have sharply reduced intestinal worm infections in developed nations, which now have some of the highest rates of Crohn’s and colitis. Scientists believe the worms help produce a certain type of bacteria that helps control inflammation. This “hygiene hypothesis” may also apply to MS, rheumatoid arthritis, type 1 diabetes, and other autoimmune diseases.

Making Everyday Life Less Painful

By Barby Ingle, Columnist

Every day is a challenge to remain independent when living with chronic pain. Normal activities such as walking, taking the stairs, squatting, sitting for long periods, and getting in and out of vehicles can be quite challenging and painful.

To get more out of life, I had to learn how to minimize disruptions in my daily routine and how to be a time and energy saver. That meant making some changes around the house.

Every pain patient and their family should assess their surroundings, perhaps with the help of professionals, and prioritize the modifications needed. This can help the patient maintain their independence and function.

Some of the lifestyle modifications you may wish to consider include: 

 Clothing

•  Flat shoes instead of heels for patients with lower extremity issues
•  Slip-on shoes
•  Velcro or zipper closures for shirts or sweaters
•  Velcro or zippers for shoes instead of shoelaces

 Bathroom

•  Elevated toilet seat
•  Grab bars in the bathtub, shower, and next to the toilet
•  Long-handled comb or brush so the patient does not have to raise his or her arm high
• Tub or shower bench 

Bedroom

• Blanket support frame so that blankets or sheets do not rest directly on the feet of a patient
• Nightlights in the bedroom and other rooms where the patient may walk if they awaken during the night

 Automobile

•  Car doors that are easy to open and close
•  Handicapped parking stickers
• Modified controls to facilitate driving
•  Seat positions that are easy to manipulate

Kitchen

• Easy grab handles for cabinets
• Large knobs on appliances requiring manipulation (stove, dishwasher, washing machine)
• Lightweight appliances (vacuum cleaner)
• Lightweight dishes and pots
•  Lightweight flatware with long handles
• Long handled cleaning appliances (brooms, dustpans, sponges)
• Long-handled "grabbers" for removing items on high shelves or picking up items from the floor
• Sliding shelves or turntables on kitchen shelves so the patient does not have to reach into cabinets to access items in the back 

Miscellaneous

• A note from your doctor recommending special accommodations, such as an aisle seat in airplanes
• Electric wheelchair to avoid upper body strain or injury
• Medical support professionals or accountants to budget medications, special appliances, home-nursing care, and other medical-related supplies and expenses
•  Nursing or home health care
• Use of wheelchairs in airports, train stations, or malls
• Voice activated lights, appliances, or computer
• Wheelchair-access modifications at home

Undoubtedly, there has been progress made in recent years by healthcare professionals and patients towards understanding and properly managing pain. Unfortunately, pain still poses a problem for patients who are under-diagnosed, over-diagnosed or misdiagnosed.

Controlling the pain you are in is essential to quality of life. Knowing the characteristics of pain and why it is happening give you an advantage in dealing and controlling aspects of pain. Taking control of your life and being responsible for yourself will assist you in lowering your pain.

I see these life changes as a way to improve my daily living -- not as defeats. Using tools in life help those with disabilities from pain have a better life. If a tool can help us accomplish more and increase independence, we should not be ashamed of using it.

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.

Study Finds Friendship ‘Stronger than Morphine’

By Pat Anson, Editor

People with more friends and large social networks have a higher tolerance for pain, according to a new study by researchers at Oxford University.

Scientists believe that social bonding activities such as music, dancing and laughter activate the body’s endogenous opioid system, releasing natural endorphins that not only make you feel better when seeing friends, but can also relieve pain.

“Endorphins are part of our pain and pleasure circuitry -- they're our body's natural painkillers and also give us feelings of pleasure,” says Katerina Johnson, a doctoral student at Oxford University, who is studying whether differences in neurobiology can explain why some people have larger social networks than others.

“To test this theory, we relied on the fact that endorphin has a powerful pain-killing effect -- stronger even than morphine.”

Johnson and her colleagues enrolled 107 healthy young adults in a squatting exercise to test their tolerance for pain. Participants were told to squat against the wall with their knees bent at a 90° degree angle, and to hold that position and endure the discomfort for as long as possible.

Questionnaires were also completed by the participants to measure their personality traits and physical fitness, and to see how often they interacted with friends.

Not surprisingly, people who were more fit were able to hold the squatting position longer. But so did people with larger social networks.  

“Obviously we had to bear in mind that fitter individuals may be able to endure this physical pain test for a longer length of time.  However, even when we take this into account, our results show that pain tolerance still significantly predicts network size,” Johnson wrote in an email to Pain News Network.

An unexpected finding was that fitter people in the study tended to have smaller social networks.

“It may simply be a question of time -- individuals that spend more time exercising have less time to see their friends. However, there may be a more interesting explanation -- since both physical and social activities promote endorphin release, perhaps some people use exercise as an alternative means to get their 'endorphin rush' rather than socializing,” she said.

Since only healthy people participated in the study, Johnson admits her research may not apply well to chronic pain patients. But since many pain patients are disabled and unable to work or participate in many social activities, there could be some lessons to learn.

“When considering chronic pain, it seems like it may be a vicious circle whereby the more an individual is in pain, the less interested they are in interacting socially with others and their smaller social networks may in turn result in reduced activity of the endorphin system (thereby worsening their pain).  Perhaps also individuals that are genetically predisposed to reduced endorphin activity (and lower social motivation) are more likely to develop chronic pain conditions,” Johnson wrote.

“Another finding of our study was that individuals with smaller social networks tend to be more stressed, and stress is also thought to exacerbate pain.  However, clearly the underlying neurochemistry in pain responses is complex, though the endorphin system is heavily implicated in pain responses given its potent analgesic properties.”

The study findings are reported online in the journal Scientific Reports. 

Improving Posture for Pain Relief

By Pat Anson, Editor

It sounds a little hard to believe. Can something as simple as changing your posture put you on a path towards pain relief?

That’s the premise behind an eight-part video series called “Becoming Pain Free” that was created by Sonima.com, a health and wellness website.

The series follows Steven Shea, a 34-year old filmmaker who suffers from chronic joint pain, as he is put through the basics of the Egoscue Method, a therapy program for chronic pain taught at over two dozen clinics around the world.

The program, which focuses on improving posture, claims to have a 94% success rate in relieving pain without the use of drugs, surgery or spinal manipulation.

scene from "becoming pain free"

“When I started talking about posture 40 years ago, you would have thought I shot the Pope. I was completely dismissed,” says founder Pete Egoscue, a 70-year old Vietnam veteran and blunt talking former Marine. “The key to an excited, engaged present life is the ability to maintain your energy, which requires the musculoskeletal system functioning at its optimal design posture. Period. Once you do that, the whole world changes for you." 

Egoscue, who is a fitness expert for Sonima, says the healthcare system is going broke because of a misguided focus on treating chronic pain with medication and surgery.

“They assume that the source of the pain and the cause of the pain are the same thing. So if you have a herniated disc, they think that’s the source of the problem. If you have a torn cartilage in your knee, they think that’s the problem. If you have migraine headaches, they look at your brain. It goes on and on and on. What’s dropped out of the diagnostic process is the ‘Why’ of things,” Egoscue told Pain News Network.

Egoscue says most forms of chronic pain are not disease or age-based, but are self-induced – the body’s way of telling us that we’re physically off balance. And instead of asking, “What wrong with me?” – he says pain sufferers should be asking, “What is my body trying to tell me?”

In most cases, Egoscue says the body simply wants to be returned to its proper alignment. That was the case with Steven Shea, who is shown in the first installment of “Becoming Pain Free” that his body is misaligned – his shoulders slumped over and his chin tilted to one side.

Chronic or severe pain affects nearly 50 million American adults, reports a new study prepared by National Institutes of Health's National Center for Complementary and Integrative Health, which was published in The Journal of Pain last summer. About half of these people are suffering from chronic pain every single day.

“By the time you see the 8th episode, you will see a completely different guy. He’s totally changed. Did that have anything to do with Egoscue? Not really. It had to do with him. He’s the guy who was driven to find the knowledge base and the actual confirmation that what he was doing was in his best interest,” Egoscue says.

Once their posture starts to improve, Egoscue says clients are energized to do other things, such as exercising more and watching their nutrition. Avoiding sugar is a priority.

“The devil of all things that the body just cannot deal with is sugar. Sugar is a killer. It’s so clear, it’s patently obvious. It kills us,” Egoscue says.  

Part two of the “Becoming Pain Free” video series can be seen by clicking here. A new episode will be shown each week on Sonima.com.

Does Washing Your Hands Raise Risk of IBD?

By Pat Anson, Editor

Many of us were taught as children to always wash our hands before leaving the bathroom and before meals. But that basic sanitary practice may be contributing to an increase in inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis, according to a new study published in the journal Science.

Researchers at New York University’s Langone Medical Center tested the so-called “hygiene hypothesis” – the theory that some intestinal parasites and bacteria are beneficial because they help balance the immune system and reduce IBD rates. Sanitary practices have sharply reduced gut worm infections in developed nations, which now have some of the highest rates of Crohn’s disease and ulcerative colitis.

“Our findings are among the first to link parasites and bacteria to the origin of IBD, supporting the hygiene hypothesis,” says parasitologist P’ng Loke, PhD, an associate professor at NYU Langone.

“The prevalence of IBD is much less in regions of the world which have heavy worm infection. In fact, I got interested in the question of how worms can be beneficial when I was contacted by an individual who had deliberately infected himself with worms to treat his symptoms of IBD and was able to put his disease into remission.”

Loke and his colleagues found that laboratory mice infected with intestinal worms experienced a thousand-fold decrease in Bacteroides — a type of bacteria linked to people with higher risk of IBD. At the same time, the number of Clostridia, a bacterium known to counter inflammation, increased tenfold in the mice.

RESEARCHERS P'ng Loke and Ken Cadwell, NYU Langone Medical Center

Researchers believe the immune response to the worms triggers the growth of Clostridia, which then either outcompete Bacteroides for nutrients or release toxins that are harmful to them.

In a second phase of the study, researchers gave mice an infusion of Clostridia – without the use of parasites – and found that it reduced the presence of Bacteroides.

“That gives us a lot of hope in terms of IBD therapy because maybe we don’t need to give people parasitic worms, which can be harmful and cause disease, and instead target the harmful bacteria by replacing them with healthy bacteria,” says microbiologist Ken Cadwell, PhD, an assistant professor at NYU Langone and the Skirball Institute of Biomolecular Medicine. “Our study could change how scientists and physicians think about treating IBD.”

Researchers say the hygiene hypothesis may also apply to other autoimmune diseases, including multiple sclerosis, rheumatoid arthritis, and type 1 diabetes, in which processes meant to attack foreign invaders instead become oversensitive and trigger an immune response to the body’s own cells.

IBD is a chronic or recurring immune response and a painful inflammation of the gastrointestinal tract. Inflammation affects the entire digestive tract in Crohn’s disease, but only the large intestine in ulcerative colitis.

According to the Crohn's and Colitis Foundation of America, IBD affects about 1.6 million Americans and tends to run in families. Caucasians are more likely than other ethnic groups to have IBD. The diseases are especially prevalent in Jews of European descent (Ashkenazi Jews). African Americans and Hispanics in the United States are also increasingly affected.