Kratom Saved My Life

By Kim DeMott, Guest Columnist

I was diagnosed with lupus in 2013 after spending several years with unexplained chronic pain, debilitating fatigue and other awful symptoms. Lupus was the first of many chronic conditions that I would be diagnosed with in coming years, including fibromyalgia, Sjogren’s syndrome, osteoarthritis, osteoporosis, carpal tunnel syndrome, migraines, endometriosis, interstitial cystitis, chronic fatigue, chronic pain, anxiety and depression.

To treat these conditions, I was prescribed 28 different medications a day, including massive amounts of powerful opiates like oxycodone, hydrocodone and morphine, along with high doses of benzodiazepines such as Ativan, Xanax and Klonopin.

Even though I was taking all these medications, I was still in pain, had bad anxiety and no quality of life. I was housebound and practically bedridden (or at least couch-ridden) most days.  I had to use a cane, walker and even the walls in my house to walk on the really bad days, which is no way for a young woman and mother of two to live.

My health became so bad that in the fall of 2014 my doctors labeled me permanently disabled and told me to get in-home support services and file for SSI. I was only 29 years old.

I would have to tell my kids that mommy was in too much pain and too tired to take them to the park, play with them, pick them up, take them to school or be involved in any of their activities. This caused me and them to miss out on precious time and memories we can’t ever get back.

I couldn’t cook, clean, drive, go to the store or even go for a quick walk. They would see and hear me hiding in the bathroom or bedroom crying from the pain and the feeling of failure I felt as their mom.

I couldn’t take a shower, brush my teeth and get dressed in the same hour because I would have to rest after every task I did. Getting dressed consisted of putting on clean pajamas, because that’s the only thing that wouldn’t hurt to wear. I became isolated and depressed. I stopped answering my phone, texts, messages and emails.

KIM DEMOTT

KIM DEMOTT

The medications that the doctors put me on made me gain a ton of weight and made me feel incredibly dizzy, sleepy, forgetful, sick to my stomach and like I was in a fog. These side effects led to even more medications being prescribed, which meant more pills to add to the already huge amount I took daily. I was so depressed and hopeless that I actually attempted suicide a few times.

For over two years now I have enjoyed drinking my kratom tea a couple of times a day. It helps promote my mood and energy like a cup of coffee would. The tea also relieves my aching joints and muscles, making my chronic fatigue and pain much more bearable.  

I am in no way cured and my pain is not completely gone, it never is and never will be. But the discomfort is down to a level that I can deal with, live with and function at. I still have bad days, but they are nowhere near as frequent or as bad as they used to be.  

Kratom has greatly improved my quality of life and dramatically changed it for the better. I’m not spending every day on the couch or in bed anymore and my kids have their mom back. We are doing so much more together.

Not only are my kids happy, but so are my fiancé, family and friends. Everyone tells me they have seen a huge change in me and that I am much more like the old me, which is something I have longed for since everything started. For the first time in years I don't feel like a prisoner in my own body and like my chronic illnesses and pain control me.

I am healthier, happier, take better care of myself and eat better. I’ve also been able to lose weight since I can cook and exercise again because I have better mobility. I even feel confident that I will be able return to work again someday soon and plan on returning to school this year.  

I look forward to each day and excited for what the future will bring. Most importantly, I am setting a better example for my kids. All thanks to this plant. Kratom has truly not only saved my life but also given me renewed hope. Without this plant I do not believe I would still be alive today.  

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Kim DeMott lives in California with her two children.

Do you have a story you want to share on PNN? Send it 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.

Nerve Stimulator Approved for Cluster Headache

By Pat Anson, PNN Editor

A neuromodulation device that stimulates a key nerve in the neck has been cleared by the U.S. Food and Drug Administration as a treatment for the prevention of cluster headache.

The handheld device – called gammaCore – is the first and only product cleared by the FDA for the prevention of cluster headache. It has already been cleared for the relief of pain caused by cluster headaches and migraines.

Cluster headaches are a series of short but extremely painful headaches that can occur every day for weeks and months at a time. They strike suddenly and subside quickly, but are so severe they’ve been called “suicide headaches.” Men are more likely to get cluster headaches than women. The cause is unknown and there is no cure. Recommended treatments for cluster headaches are limited to oxygen and triptan. 

“The FDA clearance of gammaCore for adjunctive use for the preventive treatment of cluster headache has the potential to help the approximately 350,000 Americans impacted by this debilitating condition often referred to as a ‘suicide headache,’” said Frank Amato, CEO of electroCore, the maker of gammaCore.

“We are pleased that cluster headache patients now have a FDA-cleared option, and one that is both safe and effective, especially given the difficulty in treating cluster headache and the limitations of current treatments.”

gammaCore is available by prescription only but can be self-administered by patients. It sends a mild electric charge to the vagus nerve in the neck, which stimulates the nerve while reducing pain. It’s recommended that the gammaCore be used twice daily to prevent cluster headache and reduce its severity.

ELECTROCORE IMAGE

ELECTROCORE IMAGE

The $600 device also has regulatory approval for the treatment of cluster headache, migraine and medication overuse headache in the European Union, South Africa, India, New Zealand, Australia, Colombia, Brazil, Malaysia, and Canada. 

Potential Treatment for Lupus

The vagus nerve is the longest cranial nerve in the body, running from the base of the brain through the neck, heart, lungs and abdomen. In addition to cluster headache, scientists think vagus nerve stimulation (VNS) could be useful in treating a variety of chronic pain conditions.

FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH

FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH

In a small pilot study at the Feinstein Institute for Medical Research, researchers found that VNS significantly reduced pain and fatigue associated with lupus, an autoimmune disease that damages joints, skin and internal organs. Musculoskeletal pain is one of the most common lupus symptoms, affecting up to 95 percent of patients.

Feinstein researchers used an experimental device to stimulate the vagus nerve through the ear. Lupus patients who were treated with the device for five minutes daily had a significant decrease in pain and fatigue after just five days.

“Previous studies at the Feinstein Institute have found that under certain conditions, stimulating the vagus nerve can reduce inflammation,” Timir Datta-Chaudhuri, PhD, wrote in an email to PNN.

“With inflammation being a factor in many conditions, the vagus nerve could be used as a therapeutic target for conditions beyond lupus, and potentially for pain, when inflammation is a contributing factor. In fact, this discovery has been used in the past to develop bioelectronic devices which have been tested in clinical trials in Europe and shown to be effective in reducing the joint pain and inflammation in rheumatoid arthritis.”

Datta said there are plans to continue testing the device in clinical trials. If the results are positive, the Feinstein Institute would seek to partner with other labs and companies to create a device for wider use.

Childhood Abuse Raises Lupus Risk for Adult Women

By Pat Anson, PNN Editor

Women who experienced physical or emotional abuse as children have a significantly higher risk of developing lupus as adults, according to new research presented at the annual meeting of the American College of Rheumatology.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that causes inflammation in multiple organs. Most patients have times when the disease is active, followed by times when the disease is mostly quiet and in remission. Lupus is far more common in women than men.

In prior work, exposure to stress and stress-related disorders, notably post-traumatic stress disorder, has been associated with increased risk of subsequently developing autoimmune diseases, including lupus,” said lead author Candace Feldman, MD, an Assistant Professor at Brigham and Women’s Hospital/Harvard Medical School.

“Exposure to adverse childhood experiences has specifically been associated with higher levels of inflammation, as well as with changes in immune function.”

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To identify what kind of childhood trauma raises the risk of lupus, Feldman and her colleagues looked at health data for over 67,000 women participating in the Nurses’ Health Study II, an ongoing study of female nurses that began in 1989. There were 93 diagnosed cases of lupus among the women.

In detailed questionnaires, the women were asked whether and how often as children they experienced physical abuse from a family member, or yelling, screaming or insulting remarks from a family member. The women were also asked to recall incidents of sexual abuse by either adults or older children.

Researchers found that physical and emotional abuse were associated with a more than twofold greater risk of developing lupus. But the data did not reveal a statistically significant association between sexual abuse and lupus risk.

The study’s findings suggest that the effects of exposure to physical and emotional abuse during childhood may be more far-reaching than previously appreciated,” said Feldman. “The strong association observed between childhood abuse and lupus risk suggests the need for further research to understand biological and behavioral changes triggered by stress combined with other environmental exposures. In addition, physicians should consider screening their patients for experiences of childhood abuse and trauma.”

This is not the first study to find an association between childhood trauma and chronic illness in adults. A recent study of 265 adults in New York City found that those who experienced more adversity or trauma as children were more likely to have mood or sleep problems as adults -- which in turn made them more likely to have physical pain.

Another study found that children who witness domestic violence between their parents are significantly more likely to experience migraine headaches as adults. A large survey also found that nearly two-thirds of adults who suffer from migraines experienced emotional abuse as children.

Why Are They Being So Cruel?

By Debbie Duke, Guest Columnist

I am 63 years old and have been on pain meds consistently since the age of 38.  I have systemic lupus and scleroderma, which fortunately is in remission.  I also suffer from gout, fibromuscular dysplasia, scoliosis, kidney pain and post-operative pain from breast cancer surgery.

My experience with pain management doctors in the beginning was very pleasant and I was getting relief from my agony. I was disabled but still functional due to pain medication. 

But recently things have changed.  After several years of using a pain pump, I decided to go back to oral medication to have more control.  The pump was not that effective for breakthrough pain and made me feel disconnected. After giving up on the pump, I changed doctors and the new one gave me the medication I had been before.

On my last visit, he said a new law requires patients on pain meds to have no more than the equivalency of 90mg of morphine.  Then he cut my dose in half.  I am now in agony and can see why people would turn to other ways of getting relief or decide to end it all. 

I love life and have many reasons to live. I care for a grandchild who had nearly been lost to foster care. Now, due to my inability to get around very well, I may not be able to continue taking care of her. 

DEBBIE DUKE

DEBBIE DUKE

I can't bear to think of it. 

Why are they being so cruel to those of us who are law abiding, while the crooks get away with it?  When someone grabs grandma's meds from her purse or medicine cabinet, why is that grandma’s fault? 

Overdoses have been around for years and years. Who did we blame?  The one who stuck the needle in their arm, that's who.  Yes, we have a drug epidemic, but do something about the drugs coming across our borders. There has been enough squeezing of patients. Give them what works for them.  It sickens me to see patients treated unjustly turning to other ways to help themselves.

I'm truly afraid that everything in my life as I know it will end.  Thanks to irrational politicians who have taken away our right to be as free of pain as possible.

I think sometimes about what will be said in the future.  We'll be saying, “Remember the days when we were able to have pain relief and no one had to suffer?”

I know that people are dying, but to equate prescriptions with illegal drugs to make some political point is wrong. I wish those that are in pain could march down Pennsylvania Avenue. But we are too sick for that. 

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Debbie Duke lives in Florida.

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.

Osteoarthritis Drug Works No Better Than Placebo

By Pat Anson, Editor

Hydroxychloroquine (Plaquenil) is a medication commonly used to treat rheumatoid arthritis, lupus and other autoimmune diseases. It’s also being prescribed off-label to treat inflammation and pain caused by hand osteoarthritis, a joint condition that affects nearly a third of patients over the age of 70.

But in a new study published in the Annals of Internal Medicine, British researchers reported that hydroxychloroquine is no more effective than a placebo in relieving moderate to severe pain caused by hand osteoarthritis.

Researchers at the Leeds Institute of Rheumatic and Musculoskeletal Medicine and the Leeds Biomedical Research Centre randomly assigned 248 patients with radiographic hand osteoarthritis to either hydroxychloroquine (200 to 400 mg) or placebo for a year.

Most of the patients had symptoms of hand osteoarthritis for about 5 years, and their average pain level was 7 out of 10.

After 3, 6 and 12 months, there were no significant differences in treatment outcomes between the hydroxychloroquine and placebo groups.

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“We found that HCQ (hydroxychloroquine) was not a more effective analgesic than placebo when added to usual care in persons with moderate to severe hand osteoarthritis,” researchers reported. “Background analgesic use did not differ between groups, and baseline inflammation and structural damage did not affect response to HCQ. The study therefore presents no evidence that HCQ should be considered within the management plan of patients with hand osteoarthritis.”

Two doctors who reviewed the study say more research is needed to find drugs that can treat the inflammation caused by hand osteoarthritis, a condition for which there are no effective therapies.

“The negative findings in this carefully done trial beg the question of what went awry. Did HCQ fail to reduce inflammation, or did reduced inflammation not translate to pain relief?” wrote Elena Losina, PhD, and Jefferey Katz, MD in an editorial.

“Although HCQ is safe, it is also a weak anti-inflammatory agent seldom used in contemporary practice as a solo disease-modifying therapy for rheumatoid arthritis and other inflammatory conditions. Further therapeutic studies of the effects of anti-inflammatory therapy on nodal hand osteoarthritis will need to use more potent agents or compounds developed to more specifically target the inflammatory pathways documented in this condition.”

Common Medical Conditions Linked to Fibromyalgia

By Lana Barhum, Columnist

People with fibromyalgia are more likely than others in the general population to have other chronic conditions. But doctors have yet to figure out why fibromyalgia often coexists with other diseases – what’s known as “comorbidity.”

Fibromyalgia sufferers often have migraines, autoimmune diseases, irritable bowel syndrome, depression, anxiety and sleep disturbances. Having multiple overlapping conditions isn’t easy, and increases physical pain and suffering. 

It is important for all of us with fibromyalgia to learn about these conditions and their symptoms.  Being knowledgeable about them will help us and our medical providers better control our symptoms, pain and overall health. 

Here are several common medical conditions faced by people who also have fibromyalgia:

Migraines:  Research indicates migraine sufferers are more likely to have fibromyalgia. One study from 2011, published in The Journal of Headache and Pain, suggests migraine headaches may even trigger fibromyalgia. Researchers believe preventing migraine headaches could potentially stop or slow down the development of fibromyalgia in some people, or minimize symptoms in fibromyalgia sufferers.

"These results suggest different levels of central sensitization in patients with migraine, fibromyalgia or both conditions and a role for migraine as a triggering factor for FMS. Prevention of headache chronification in migraine patients would thus appear crucial also for preventing the development of fibromyalgia in predisposed individuals or its worsening in co-morbid patients,” Italian researchers reported.

Autoimmune Diseases:  In about 25% of cases, fibromyalgia co-exists with an autoimmune condition, according to the Centers for Disease Control and Prevention.  Two serious autoimmune diseases that may accompany fibromyalgia are rheumatoid arthritis (RA) and lupus. 

Other studies show at least 20% of RA patients also have fibromyalgia, but researchers have yet to understand the connection. The pain of RA can trigger fibromyalgia flares, worsen pain and symptoms, and vice versa. 

In 2016, researchers in the UK tried to determine whether RA patients who also had fibromyalgia had lower levels of joint inflammation.  The results of their study, published in BMC Musculoskeletal Disorders, determined RA patients with fibromyalgia had "widespread soft tissue tenderness but fewer clinically inflamed joints, have higher disease activity scores but may have lower levels of synovial [joint] inflammation."

The researchers suggested that different approaches to treatment may benefit these patients.

"These patients are less likely to respond to escalation of inflammation-suppressing therapy and may be more suitable for other forms of treatment including alternative means of pain control and psychological support,” they wrote.

It is also not uncommon for lupus and fibromyalgia to co-occur.  However, fibromyalgia is no more common in lupus than other autoimmune diseases, according to researchers out of the National Data Bank for Rheumatic Diseases

Depression and Anxiety: People with fibromyalgia frequently experience depression and anxiety.

According to a 2011 report published in the journal Pain Research and Treatment, 90% of fibromyalgia patients have depressive symptoms at least once, and 86% of those people may suffer from a major depressive disorder. Depression and fibromyalgia occur at the same time in at least 40% cases -- a connection that researchers are still trying to understand.

The prevalence of anxiety symptoms in fibromyalgia patients ranges from 13% to about 71%,  according to Portuguese researchers. 

Irritable Bowel Syndrome: A majority of fibromyalgia patients – up to 70% - also suffer from irritable bowel syndrome (IBS), a digestive disorder characterized by abdominal pain, cramping, bloating, diarrhea and constipation.

Sleep Disturbances:  Most people with fibromyalgia report problems sleeping.  No matter how long they sleep, theyrarely feel rested. Restless leg syndrome, non-restorative sleep, and sleep apnea are all sleep issues associated with fibromyalgia.

People with fibromyalgia are more likely to have restless leg syndrome (RLS) than others in the general population, according to a study from the American Academy of Sleep Medicine (AASM). RLS is a disorder that causes uncomfortable feelings in the legs and/or the urge to keep moving the legs. The AASM study, published in the Journal of Clinical Sleep Medicine, finds 33% of people with fibromyalgia also have RLS.  

Up to 90% of fibromyalgia patients experience non-restorative sleep, a feeling of not getting refreshing sleep, despite appearing to have slept.

A 2013 study published in Clinical and Experimental Rheumatology reports that 61% of men with fibromyalgia suffer from sleep apnea, as well as 32% of women. Sleep apnea is a serious sleep disorder where breathing is interrupted during sleep.  

Living with Fibromyalgia and Co-Existing Conditions                 

In addition to suffering from fibromyalgia, I also suffer from three co-existing conditions -- rheumatoid arthritis, depression, and anxiety.  Having both RA and fibromyalgia, I have struggled with more severe symptoms, including muscle and joint pain and cognitive issues.  I know dealing with this debilitating pain results in both depression and anxiety, and both have been frequent visitors to my life.   

I am aware of the effect multiple conditions have on my well-being, and work hard at improving my overall health. I know I can still have a good quality of life, despite the many obstacles that fibromyalgia and its multiple co-occurring conditions present. 

There are other conditions linked to fibromyalgia that I have not mentioned, but they are still significant. Understanding how fibromyalgia and these conditions coexist may someday help researchers develop better treatments for fibromyalgia. 

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

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

Miss Understood: A Mother’s Greatest Fear

By Arlene Grau, Columnist

As a mother your main goals are to raise your children to lead happy lives, to always love them, and to keep them safe. I want to see my children excel and get a lot further in life than anything I've ever dreamed of.

Although I have many hopes and aspirations for my two daughters, my worst fear is always lingering in the back of my head.

What if I cursed one of my daughters with a genetic predisposition for an autoimmune disease? What if they develop arthritis or lupus? I could never forgive myself if I knew they were meant to endure the suffering I've lived through.

I would give anything if they would never have to worry about seeing a medical specialist, or needing infusions, blood draws and painkillers just to get by. They already see a pain sufferer’s life through a child’s point of view and that alone is very difficult to handle for a 5 and 9-year old. But burdening them with this lifestyle would be cruel in and of itself.

I'd like to think that I could handle any amount of pain you throw at me. I'll shed some tears and break down a bit, but I think of myself as a genuinely strong individual. However, if you involve my children, then all bets are off and I become vulnerable.

When my oldest daughter was born I suffered from preeclampsia (high blood pressure) and she was born prematurely. She weighed just 4.6 lbs. at birth and was in the neonatal intensive care unit for two weeks.

The day after I was discharged, I was back at her bedside from the time visiting hours began until it was time to go home. She ended up needing surgery at 8 weeks and it was the worst experience I've ever been through.

I can remember how much I wanted both my girls to come home from the hospital with me so I can just love and protect them. My desire for children was always about how much I wanted a family, but I never stopped to think about the possibility of passing down an autoimmune  disease. Now anytime my kids tell me their back or hands hurt, I subconsciously think that it might be arthritis.

I think I may always feel that way. Not only because I'm blaming myself for any pain they may be feeling, but because I know that these diseases do not discriminate against any age group.

Arlene Grau lives in southern California with her family. Arlene 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.