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.

Chronic Fatigue Patients Often Feel Disbelieved in ERs

By Pat Anson, PNN Editor

Patients suffering from chronic fatigue syndrome (CFS) often feel disrespected and disbelieved in hospital emergency rooms, according to a new survey by researchers at Georgetown University Medical Center.

CFS is a complex and poorly understood disorder characterized by extreme fatigue, chronic pain, impaired memory and insomnia. Because many of the symptoms of CFS overlap with other conditions -- including fibromyalgia, depression, and inflammation – a correct diagnosis is often difficult.

In the first study of its kind, Georgetown researchers surveyed 282 CFS patients about their experiences in emergency departments. Two-thirds said they would not go to an ED because they believed they wouldn't be taken seriously or because they had a previous unsatisfactory experience. Only a third said they received appropriate treatment in the ED.

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"The high proportion of patients who were basically told 'It is all in your head' by ED staff indicates that there is much misunderstanding and misgivings about the diagnosis of CFS,” said allergist and immunologist James Baraniuk, MD, senior investigator of the study published in the journal Open Access Emergency Medicine.

“These patients should feel they are respected and that they can receive thorough care when they feel sick enough to go to an ED."

The survey found that only 59 percent of the CFS patients had gone to an ED. In that group, 42 percent were dismissed as having psychosomatic complaints. Asked to collectively rate their ED caregivers' knowledge of chronic fatigue, patients gave them a score of 3.6 on a 10-point scale.

Baraniuk says more training is needed for ED staff and physicians to better understand the disorder.

"An already-available CFS Symptom Severity Questionnaire can be used in the ED to assist with the diagnosis of CFS, and to differentiate exacerbations of CFS symptoms from medical emergencies such as heart attacks or infections," Baraniuk says.

The number one reason for going to the ED was orthostatic intolerance, which occurs when a person feels faint when standing or sitting upright because not enough blood is reaching the brain and heart. The symptoms only improve when a person lies down.

"This condition is something that can be readily addressed by ED caregivers. There is a real need for physician education that will improve their efficiency in identifying and treating CFS and in distinguishing CFS symptoms from other diseases in the exam room," he said.

In 2015, an independent panel convened by the National Institutes of Health called for major changes in the way the healthcare system treats people suffering from chronic fatigue – which is also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

“Both society and the medical profession have contributed to ME/CFS patients feeling disrespected and rejected. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder,” the panel reported in its final report.

About one million Americans suffer from chronic fatigue, most of them women. There are no pathogens linked to CFS, no diagnostic tests and no known cures.

New Lyme Disease Test Could Lead to Earlier Treatment

By Pat Anson, PNN Editor

At long last, scientists are close to developing a new test to detect Lyme disease weeks sooner than current tests -- allowing patients to begin treatment earlier.

Lyme disease is a bacterial illness spread by ticks. Left untreated, it can lead to chronic conditions such as joint and back pain, chronic fatigue, fibromyalgia and neuropathy.

Borrelia burgdorferi was first identified as the bacteria that causes Lyme disease in 1983.  The antibody tests currently used to detect Borrelia were developed a decade later and have a number of shortcomings. They can take up to three weeks to get results and cannot distinguish between an active infection or an old one.

A team of scientists recently reported in the journal Clinical Infectious Diseases that advances in molecular diagnostics should make a new DNA test for Borrelia technically feasible.

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“These direct tests are needed because you can get Lyme disease more than once, features are often non-diagnostic and the current standard FDA-approved tests cannot distinguish an active, ongoing infection from a past cured one,” said lead author Steven Schutzer, MD, a physician-scientist at Rutgers New Jersey Medical School.

“The problem is worsening because Lyme disease has increased in numbers to 300,000 per year in the United States and is spreading across the country and world.”

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Early symptoms of Lyme disease include fever, chills, headaches, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite, which resembles a ring or bulls-eye. When there is no rash, a reliable laboratory test is needed to detect an active disease.

“The new tests that directly detect the Lyme agent’s DNA are more exact and are not susceptible to the same false-positive results and uncertainties associated with current FDA-approved indirect tests,” said Schutzer.

Lyme disease is usually treated with antibiotics, but some patients experience complications that lead to Lyme disease syndrome (PTLDS), with long-term symptoms such as fatigue, muscle and joint pain and cognitive issues. Autoimmune diseases have also been associated with chronic Lyme disease.

Pain Pacifist: A Poem About Pain

 

"Pain Pacifist"

By Angelika Byczkowski

 

Pain warrior no longer,

I surrender,

give up the fight,

become a pacifist.

Pain is far too big,

too strong for me

to stand against,

curb or contain.

 

It spills over

the edge of my meds,

trampling barriers

of mind eroded

by long-sustained

assault, it gives

no pause, no rest,

no redemption.

 

I'm worn down,

too exhausted

to continue this

unending battle,

fighting my own

invisible torment,

running wild in

this broken body.

 

Dreams for the future

lie shattered, love

of life destroyed,

lost to pain, and

the way ahead

looks even worse,

I change my route,

try something new.

 

I declare a truce,

one-sided, still

it brings me moments

of gentle calm,

when a window

opens briefly,

gives me a glimpse

of possible peace.

 

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and blogging about chronic pain, EDS, and fibromyalgia at EDS Info.

Pain News Network invites other readers to share their stories (and poems) with us. 

Send them to:  editor@PainNewsNetwork.org

Are Chronic Fatigue Sufferers Afraid of Exercise?

By Pat Anson, Editor

Research published in a respected British medical journal is fueling a new debate over exercise and whether it helps or hurts people suffering from chronic fatigue syndrome.

Researchers at King’s College London reported in The Lancet Psychiatry that most chronic fatigue sufferers have “fear avoidance beliefs” that exercise will only make things worse.

Chronic Fatigue Syndrome (CFS) -- also known as Myalgic Encephalomyelitis (ME) –  is characterized by severe tiredness, disturbed sleep and a weakened immune system, along with muscle and joint pain. CFS is a comorbid condition often shared by fibromyalgia and other chronic pain sufferers.

The King’s College study followed 641 CFS patients who were given cognitive behavioral therapy (CBT) and graded exercise therapy that included light exercises such as walking. CBT encourages patients to think differently about their symptoms.

When used together, researchers say the two therapies helped about a third of the patients recover from CFS, primarily by reducing their fear that exercise and activity would only worsen their symptoms.

Our results suggest that fearful beliefs can be changed by directly challenging such beliefs (as in CBT) or by simple behaviour change with a graded approach to the avoided activity,” said Professor Trudie Chalder of King’s College London. “Clinically, the results suggest that therapists delivering CBT could encourage more physical activities such as walking, which might enhance the effect of CBT and could be more acceptable to patients.”

Many CFS sufferers were outraged by the study and the way it was reported by the news media, feeling it added to a stereotype that they were lazy couch potatoes and malingerers.

“This article has made me so angry. This journalist should live my life for a few days and then maybe they’d reconsider what they wrote,” said one woman in an online comment to a Daily Mail story.

“Sometimes having a shower is like climbing a mountain,” wrote another CFS sufferer. “Until one of these ‘experts’ has had to literally crawl back to bed shaking and ill from just trying to clean their teeth I don’t think they’ll ever be able to understand what we go through.”

“Given the number of athletes and sportspeople diagnosed with this neurological disease, trying to pass it off as 'fear of exercise' is laughable. And lazy!” wrote another reader.

An American neuroscientist also weighed in, disputing the theory that exercise is an effective treatment for ME/CFS.

Our studies clearly show that dynamic exercise like walking or jogging exacerbates symptoms associated with ME/CFS,” wrote Mark VanNess, PhD, a professor at the University of the Pacific in a letter published in the ME blog, Just ME. “Fear and avoidance of what worsens symptoms is a natural defense mechanism against a harmful stimulus. In fact, many researchers here in the U.S. utilize graded aerobic exercise as a tool to worsen and amplify ME/CFS symptoms – not as a treatment meant to be beneficial.

“For a patient with ME/CFS the fear of exercise is a reasonable, knowledgeable, and learned response to a noxious stimulus. If ME/CFS patients could exercise away their symptoms they most certainly would, regardless of the pain.”

Some skeptics in the medical community refuse to accept ME/CFS as a real disease, although it was classified as a neurological disease by the World Health Organization in 1969.

According to the National Alliance for Myalgic Encephalomyelitis, nearly 1 million people in the U.S. and 17 million worldwide have ME.

Naltrexone ‘Changed Life’ of Fibromyalgia Patient

By Donna Gregory Burch

The pain in Janice Hollander’s legs was so excruciating that she wanted to cut them off. Diagnosed with fibromyalgia in 2013, she’d progressed through the normal litany of prescription drugs doled out by physicians – Lyrica, Cymbalta, gabapentin, muscle relaxers and narcotics – all without finding relief.

Then she happened to catch an episode of the Dr. Oz Show where a guest discussed using low-dose naltrexone (LDN) as a treatment for chronic pain. A few days later, she convinced her doctor to write a prescription and took her first dose of LDN.

“After about seven days, my pain lessened,” said Hollander of Michigan. “It lessened by 10 or 20 percent. That was huge! Even just that little bit of lessening was huge.”

After four weeks, the depression that had been stymying her for years lifted. At six weeks, she saw a noticeable increase in her energy levels. Her brain fog improved, and her memory returned.

Hollander has been taking LDN for about year now, and she’s probably one of its biggest fans within the fibromyalgia community. She regularly shares her success story in online support groups.

Hollander still has fibromyalgia symptoms, but they are more manageable thanks to LDN.

“I would say my leg pain is pretty much gone,” she said. “[LDN] has completely changed my life. I don’t know that I would be here today if it wasn’t for it. I don’t think I could go for another year in the misery I was in.” 

A growing number of fibromyalgia sufferers like Hollander are finding relief using LDN. It’s an unusual discovery since LDN is best known in the addiction treatment community. The U.S. Food and Drug Administration approved LDN to treat addiction to certain opiate drugs in 1984.

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Dr. Jarred Younger, who conducted two LDN/fibromyalgia studies at Stanford University, believes LDN has an anti-inflammatory effect on the brain.

“This is one of the few drugs that can do that in the brain because it crosses the blood-brain barrier,” Younger said.

In simple terms, the brain contains microglial cells that look for problems within the central nervous system. When they discover an abnormality, these cells release chemicals into the body that cause fatigue, pain, cognitive disturbances and other symptoms common among fibromyalgia patients. In a healthy person, these chemicals are intended to slow down the body, to force it to rest, so that it can heal from whatever has caused the abnormality. In fibromyalgia, some researchers hypothesize this normal central nervous system response gets activated and doesn’t shut off.

“It’s like the central nervous system thinks you have an infection when you don’t,” Younger explained.

Fibromyalgia sufferers often speculate about what caused their condition, and researchers have debated various triggers for years. Viruses (herpes, Epstein Barr, etc.), chronic stress, genetics, obesity, aging and pollution are suspects, but according to Younger, it could be all of these.

He believes LDN works because it calms the microglial cells and reduces brain inflammation.

Penn State University researcher Ian Zagon posits a different mechanism behind LDN. Zagon’s opioid blockade hypothesis surmises that LDN blocks the brain’s opioid receptors, essentially tricking the body into increasing production of natural pain-suppressing chemicals.

Theoretically, both hypotheses could be correct.

Younger’s two Stanford University studies showed LDN outperformed Lyrica, Cymbalta and Savella, the three drugs currently approved to treat fibromyalgia in the U.S., and it did so with minimal side effects. The most common side effects are headache, insomnia, vivid dreams and nausea – all of which usually disappear over time.

“Probably 65 percent of people get an appreciable decrease of symptoms,” Younger said.

But more research is needed to confirm these early findings.

Next year, Younger will conduct at least two LDN/fibromyalgia studies at his new facility, the Neuroinflammation, Pain and Fatigue Lab at the University of Alabama at Birmingham.

One study will try to parse out the most effective dose of LDN for fibromyalgia. Most LDN users are prescribed the drug off-label, between 1.5mg and 4.5mg daily. But some rheumatologists have shared anecdotal accounts that certain patients respond better to higher doses, ranging up to 9mg.

A second trial will pair LDN with dextromethorphan, a common cough suppressant that’s believed to work similarly to LDN.

But many fibromyalgia sufferers aren’t waiting for the research. They’ve found ways to secure a prescription and try LDN for themselves.

Linda Elsegood, founder of the U.K.-based LDN Research Trust, has helped thousands of people gain access to LDN. She credits LDN with stabilizing her multiple sclerosis. At her worst, Elsegood was wheelchair bound, had no control of her bowels or bladder and had lost much of her sight and hearing. After 18 months on LDN, she was able to walk again on her own and had a reversal of most of her symptoms.

After her remarkable recovery, she wanted to educate others on the benefits of LDN.

“I wanted people to know that there is a choice, if you’ve been told, like me, that there’s nothing else that can be done for you,” she said. “Look into LDN. Do your research. … It is amazing the number of people who’ve found LDN works for them for so many different conditions.”

In addition to fibromyalgia, early research has found LDN to be useful in reducing the symptoms of certain autoimmune and central nervous system conditions, including multiple sclerosis, Crohn’s disease, rheumatoid arthritis and others.

But few doctors know about LDN as an emerging treatment, so it can be difficult to get a prescription.

“Some doctors are too busy to read the information,” Elsegood explained. “Some will not think outside of the box. It’s not what they learned in medical school, so they’re not prepared to consider something that is alternative. Other doctors won’t prescribe it because there aren’t enough trials.”

Unfortunately, it’s unlikely that any of the major drug companies will ever study LDN because it’s an older, generic drug and little profit can be made from it. So it falls to innovative researchers, like Younger, who secure donations and grants to fund trials.

Patients often encounter doctors who refuse to prescribe LDN even though it has a proven safety record and a low risk of side effects. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website. For those who can’t find an LDN-friendly doctor locally, there are physicians who offer phone and online LDN consults.

“My advice is to always research it yourself, and then address it with your doctor,” Hollander said. “And if your doctor won’t agree to letting you try it, then find a doctor who will.

“I would drive to Florida to get it if I had to. It makes that big of a difference. I just wish more doctors would prescribe it, and more people would find help with it.”

For a list of helpful LDN resources, visit www.fedupwithfatigue.com/low-dose-naltrexone.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained symptoms. Donna is the founder of Fed Up with Fatigue, a blog devoted to helping those with fibromyalgia and ME/CFS live better with these conditions.

Donna is an award-winning journalist whose work has appeared online and in local newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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.

Chronic Fatigue Patients ‘Disrespected and Rejected’

By Pat Anson, Editor

An independent panel convened by the National Institutes of Health is calling for major changes in the way the healthcare system treats people suffering from chronic fatigue – a complex and poorly understood disorder that affects an estimated one million Americans, most of them women.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is characterized by extreme fatigue, chronic pain, impaired memory, insomnia, and other symptoms that do not improve with rest.  Many of the symptoms overlap with other diseases and disorders -- including fibromyalgia, depression, and inflammation – making a correct diagnosis even more difficult.

There is also a stigma often associated with chronic fatigue.

“Both society and the medical profession have contributed to ME/CFS patients feeling disrespected and rejected. They are often treated with skepticism, uncertainty, and apprehension and labeled as deconditioned or having a primary psychological disorder,” the panel states in its final report.

“ME/CFS patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms while others are treated inappropriately causing additional harm.”

Although the economic burden of chronic fatigue is estimated at between $2 billion and $7 billion annually, the panel said there has been “minimal progress” in improving the state of science for ME/CFS over the last 20 years. There are no pathogens linked to chronic fatigue, no diagnostic tests and no known cures.

"We need to learn more about the cellular and molecular mechanisms of this disease and how immunologic, neurologic, and other factors contribute to ME/CFS," said Carmen Green, MD, the panel’s chair and professor of anesthesiology, obstetrics and gynecology, and health management and policy at the University of Michigan Schools of Medicine and Public Health.

"We need to fund more studies that can be easily reproduced, and we must gain a better understanding of how ME/CFS affects people and their families in terms that are clinically meaningful to them. In addition, we need to have a greater understanding of the impact of ME/CFS across the life span, especially in underserved and vulnerable populations."

What little research that has been done has focused on Caucasian, middle-aged women.  The panel said new studies need to include children, minorities, men, patients living in rural areas, and those who are homebound.

To address these knowledge gaps, the panel is calling for more research and opportunities for new investigators to study ME/CFS. It also called for the creation of a repository of biological samples from chronic fatigue patients (e.g., serum, whole blood, RNA, DNA) to support new studies.

In addition, the panel recommended new educational training courses to help health care providers diagnose and treat ME/CFS.

"ME/CFS exists, and despite the absence of a clear definition, an estimated one million Americans are affected by it," said Green. "In order to develop primary prevention strategies and effective drug treatments, there needs to be a clear understanding of its causes and the populations it affects."

Much of the information gathered by the panel came during a public workshop and public comment period in December of last year. The five member panel, which included Penney Cowan of the American Chronic Pain Association, operated as an independent commission. Its final report is not a policy statement of the NIH or the federal government, and there are no guarantees its recommendations will be funded or acted upon.