Can Ketamine Treat Fibromyalgia Pain?

By Pat Anson

At a time when the medical and recreational use of ketamine is coming under more scrutiny from law enforcement, a new study highlights its potential value as a treatment for fibromyalgia pain.

Ketamine is an anesthetic drug that is only FDA-approved for depression and anesthesia. But in recent years ketamine infusions are increasingly being used “off-label” for severe chronic pain conditions such as Complex Regional Pain Syndrome (CRPS).

In a small systematic review (a study of studies), researchers in Brazil found that ketamine infusions were safe and effective in relieving fibromyalgia pain. The review was small – just 6 clinical trials involving 115 patients – because ketamine has rarely been considered as a treatment for fibromyalgia due to its potency. Ketamine infusions require constant medical supervision because they put patients into a temporary dream-like state that can lead to hallucinations and out-of-body experiences.

But the Brazilian researchers found the side effects from infusions were mild and short-term, with some fibromyalgia patients experiencing pain relief that lasted for days or weeks.

Fibromyalgia is a poorly understood condition that causes widespread body pain, fatigue, insomnia, brain fog and mood disorders. The FDA has approved only three medications for fibromyalgia, two antidepressants (Cymbalta and Savella) and a nerve drug (Lyrica), but many patients consider the drugs ineffective.

Could ketamine be another option?

“Ketamine infusions might be a reasonable therapeutic approach for short-term relief of symptoms but unsatisfactory at inducing long-term analgesia in FM (fibromyalgia) patients,” the Brazilian research team reported in Advances in Rheumatology. “Future studies that evaluate the safety and effectiveness of ketamine in FM are desired for long-term follow-up. In patients refractory to conventional therapy, ketamine infusions might be a reasonable therapeutic approach.”

A recent case study suggests ketamine does have potential as a long-term treatment. A 68-year-old woman with fibromyalgia experienced “significant, widespread pain relief” after receiving several ketamine infusions over a two-week period. She continued getting infusions twice a week for the next year.    

“Pain relief has persisted under this regimen, along with a demonstrable improvement in quality of life, a reduced use of morphine, and the cessation of anti-depressant medication. This case indicates that long-term ketamine infusions show promise for chronic pain management and that more longitudinal studies on this treatment are warranted,” researchers reported.

‘Targeting and Investigating Doctors’

The positive news about ketamine is being overshadowed by the investigation into the death of actor Matthew Perry, who drowned in a hot tub last year after getting three ketamine injections in one day – none of them while under medical supervision.  Five people, two of them doctors, were recently arrested in connection with Perry’s death, including an alleged drug dealer known as the “Ketamine Queen.”

Perry had long struggled with substance abuse issues, but federal prosecutors say the defendants “were more interested in profiting off Mr. Perry than caring about his well-being.”  The two doctors charged in the case both surrendered their DEA licenses and can no longer prescribe controlled substances.      

In a recent appearance on CBS’ Face the Nation, DEA Administrator Anne Milgram likened Perry’s death to the opioid crisis, claiming that his doctors were ultimately responsible.  

“It started with two unscrupulous doctors who were violating their oath, which is to take care of their patients, and instead supplying Matthew Perry with enormous quantities of ketamine in exchange for huge amounts of money. And then it switched to the street where Matthew Perry was buying the ketamine from two drug traffickers,” Milgram said.

“Every single day, (we) are targeting and investigating doctors, nurse practitioners, others who are violating this duty of trust to their patients by over prescribing medicine or prescribing medicine that isn't necessary.”

Milgram also claimed that ketamine “has a high potential” for addiction. While experts agree the drug can be abused, ketamine is not an opioid and does not suppress respiration, the leading cause of an overdose.  

Kamala Harris’ Stepdaughter Draws Backlash for Advocating Pain Treatments

By Crystal Lindell

Ella Emhoff, the 25-year old stepdaughter of Vice President Kamala Harris, recently revealed that she has chronic back pain and shared a list of ways that she tries to address it. 

It’s a move that could give a boost to patient advocacy, especially if her stepmother moves into the White House.

Emhoff’s social media posts about pain and her lengthy list of potential treatments have gotten some pushback in the media, in part because one of the things Emhoff advocates for is ketamine infusions for chronic pain. The anesthetic has been a hot topic recently for its role in the drowning death of actor Matthew Perry. Last week prosecutors brought charges against five people who helped supply Perry with ketamine. 

Emhoff shared her chronic pain story via Instagram, where she has nearly 400,000 followers, writing that she was born with a tethered spine, which caused her back to not properly lengthen when she was growing up. That, in turn, caused kyphosis, an abnormally formed spine also known as a “hunchback.”

Emhoff said she was in and out of doctors’ offices for physical therapy for most of her adolescence, and then eventually got lower back surgery, which led to her growing taller. But she still has chronic back pain. 

After receiving a lot of responses to sharing her story, she then followed-up by sharing a link to a Google Doc list of pain management options, which she calls “The Big Pain Management List.” 

“Alright the responses have been COMING IN HOT. It's actually very comforting seeing how many people can relate to chronic pain and also very sad," Emhoff wrote, sharing a disclaimer about her list.

"These are all just recommendations made to me. These should not be taken as medical advice. I am just a girl tryna feel less pain."

INSTAGRAM

Emhoff’s list is broken down into six categories: devices, topicals, exercises, lifestyle changes and books. Most of the recommendations are probably common knowledge to anyone who's been dealing with chronic pain. But the list still offers a good, well-organized resource for anyone looking for new or old ideas to relieve pain. 

Under devices, she includes a firm mattress and red light therapy pad. For topicals, she suggests lidocaine patches and salt baths. Under exercises, Emhoff includes things like weighted squats and pilates. For lifestyle, she recommends things like shorter work days, “weed” and an anti-inflammatory diet. 

The therapies column is where she lists ketamine infusions, as well as somatic therapy and EDMR therapy. Under books, she recommends “The Pain Management Workbook" and “The Way Out.”

Personally, I find it a little disappointing that Emhoff never mentions one of the most effective pain treatments we have: opioid-based pain medication. It’s not as though she was worried about being controversial, given her inclusion of ketamine therapy. Perhaps opioids aren’t helpful for her, but they are helpful for millions of others dealing with chronic pain. 

Regardless, I’m always glad to see anyone with influence drawing awareness to the suffering those of us with chronic pain endure. My hope is that she will be able to push her powerful stepmom to advocate for broader access to some of her recommendations, such as ketamine and cannabis. 

Of course, because of Emhoff’s visibility and political connections, some publications covered her pain management suggestions as though they were controversial.  

The Daily Mail headline read: “Kamala Harris' woke step daughter pushes ketamine and shorter working days in excruciating Gen Z rant.”

The New York Post headline read: "VP Kamala Harris’ stepdaughter Ella Emhoff pushes ketamine, ‘shorter work days’ in ‘pain management’ rant."

It’s a little disappointing to see those types of headlines around the topic of chronic pain. My guess is that many of Emhoff’s followers suffer from chronic pain, and many of them may even benefit from her recommendations. But headlines like that can scare people away from trying treatments like ketamine, which is normally used for depression but some people find very useful treating some types of chronic pain. 

Thankfully, Emhoff has the ability to reach out to pain patients directly through her social media. So even if other media entities try to frame her suggestions in a poor light, she’s still able to get her message out to those who need it.

Ketamine Therapy a ‘Wild West’ for Patients

By Dawn Megli, KFF Health News

In late 2022, Sarah Gutilla’s treatment-resistant depression had grown so severe, she was actively contemplating suicide. Raised in foster care, the 34-year-old’s childhood was marked by physical violence, sexual abuse, and drug use, leaving her with life-threatening mental scars.

Out of desperation, her husband scraped together $600 for the first of six rounds of intravenous ketamine therapy at Ketamine Clinics Los Angeles, which administers the generic anesthetic for off-label uses such as treating depression or chronic pain. When Gutilla got into an Uber for the 75-mile drive to Los Angeles, it was the first time she had left her home in Llano, California, in two years. The results, she said, were instant.

“The amount of relief I felt after the first treatment was what I think ‘normal’ is supposed to feel like,” she said. “I’ve never felt so OK, and so at peace.”

For-profit ketamine clinics have proliferated over the past few years, offering infusions for a wide array of mental health issues, including obsessive-compulsive disorder, depression, and anxiety. Although the off-label use of ketamine hydrochloride, a Schedule III drug approved by the FDA as an anesthetic in 1970, was considered radical just a decade ago, now between 500 and 750 ketamine clinics have cropped up across the nation.

Market researcher Grand View Research pegged industry revenues at $3.1 billion in 2022, and projects them to more than double to $6.9 billion by 2030. Most insurance doesn’t cover ketamine for mental health, so patients must pay out-of-pocket.

While it’s legal for doctors to prescribe ketamine, the FDA hasn’t approved it for pain or mental health treatment, which means that individual practitioners must develop their own treatment protocols. The result is wide variability among providers, with some favoring gradual, low-dosage treatments while others advocate larger amounts that can induce hallucinations, as the drug is psychedelic at the right doses.

“Ketamine is the wild West,” said Dustin Robinson, the managing principal of Iter Investments, a venture capital firm specializing in hallucinogenic drug treatments.

Ketamine practitioners stress that the drug’s emergence as a mental health treatment is driven by a desperate need. Depression is the leading cause of disability in the United States for individuals ages 15-44, according to the National Institute of Mental Health, and around 25% of adults experience a diagnosable mental disorder in any given year.

Meanwhile, many insurance plans cover mental health services at lower rates than physical health care, despite laws requiring parity. Thus many patients with disorders receive little or no care early on and are desperate by the time they visit a ketamine clinic, said Steven Siegel, chair of psychiatry and the behavioral sciences at the University of Southern California’s Keck School of Medicine.

But the revelation that “Friends” star Matthew Perry died in part from a large dose of ketamine, along with billionaire Elon Musk’s open use of the drug, has piqued fresh scrutiny of ketamine and its regulatory environment, or lack thereof.

Commercial ketamine clinics often offer same-day appointments, in which patients can pay out-of-pocket for a drug that renders immediate results. The ketamine is administered intravenously, and patients are often given blankets, headphones, and an eye mask to heighten the dissociative feeling of not being in one’s body. A typical dose of ketamine to treat depression, which is 10 times lower than the dosage used in anesthesia, costs clinics about $1, but clinics charge $600-$1,000 per treatment.

Ketamine is still shadowed by its reputation as the party drug known as “Special K”; Siegel’s first grant from the National Institutes of Health was to study ketamine as a drug of abuse. It has the potential to send users down a “K hole,” otherwise known as a bad trip, and can induce psychosis. Research in animals and recreational users has shown chronic use of the drug impairs both short- and long-term cognition.

Perry’s death in October raised alarms when the initial toxicology screening attributed his death to the acute effects of ketamine. A December report revealed Perry received infusion therapy a week before his death but that the fatal blow was a high dose of the substance taken with an opioid and a sedative on the day of his death — indicating that medical ketamine was not to blame.

A Variety of Protocols

Sam Mandel co-founded Ketamine Clinics Los Angeles in 2014 with his father, Steven Mandel, an anesthesiologist with a background in clinical psychology, and Sam said the clinic has established its own protocol. That includes monitoring a patient’s vital signs during treatment and keeping psychiatrists and other mental health practitioners on standby to ensure safety. Initial treatment starts with a low dose and increases as needed.

While many clinics follow the Mandels’ graduated approach, the dosing protocol at MY Self Wellness, a ketamine clinic in Bonita Springs, Florida, is geared toward triggering a psychedelic episode.

Christina Thomas, president of MY Self Wellness, said she developed her clinic’s procedures against a list of “what not to do” based on the bad experiences people have reported at other clinics.

The field isn’t entirely unregulated: State medical and nursing boards oversee physicians and nurses, while the FDA and Drug Enforcement Administration regulate ketamine. But most anesthesiologists don’t have a background in mental health, while psychiatrists don’t know much about anesthesia, Sam Mandel noted. He said a collaborative, multidisciplinary approach is needed to develop standards across the field, particularly because ketamine can affect vital signs such as blood pressure and respiration.

The protocols governing Spravato, an FDA-approved medication based on a close chemical cousin of ketamine called esketamine, are illustrative. Because it has the potential for serious side effects, it falls under the FDA’s Risk Evaluation and Mitigation Strategies program, which puts extra requirements in place, said Robinson. Spravato’s REMS requires two hours of monitoring after each dose and prohibits patients from driving on treatment days.

Generic ketamine, by contrast, has no REMS requirements. And because it is generic and cheap, drugmakers have little financial incentive to undertake the costly clinical trials that would be required for FDA approval.

That leaves it to the patient to assess ketamine providers. Clinics dedicated to intravenous infusions, rather than offering the treatment as an add-on, may be more familiar with the nuances of administering the drug. Ideally, practitioners should have mental health and anesthesia expertise, or have multiple specialties under one roof, and clinics should be equipped with hospital-grade monitoring equipment, Mandel said.

Siegel, who has researched ketamine since 2003, said the drug is especially useful as an emergency intervention, abating suicidal thoughts for long enough to give traditional treatments, like talk therapy and SSRI antidepressants, time to take effect. “The solutions that we have and have had up until now have failed us,” Mandel said.

The drug is now popular enough as a mental health treatment that the name of Mandel’s clinic is a daily sight for thousands of Angelenos as it appears on 26 Adopt-A-Highway signs along the 405 and 10 freeways.

And the psychedelic renaissance in mental health is accelerating. A drug containing MDMA, known as ecstasy or molly, is expected to receive FDA approval in 2024. A drug with psilocybin, the active ingredient in “magic mushrooms,” could launch as early as 2027, the same year a stroke medicine with the active ingredient of DMT, a hallucinogen, is expected to debut.

Robinson said many ketamine clinics have opened in anticipation of the expanded psychedelic market. Since these new drugs will likely be covered by insurance, Robinson advises clinics to offer FDA-approved treatments such as Spravato so they’ll have the proper insurance infrastructure and staff in place.

For now, Sarah Gutilla will pay out-of-pocket for ketamine treatments. One year after her first round of infusions, she and her husband are saving for her second. In the meantime, she spends her days on her ranch in Llano where she rescues dogs and horses, and relies on telehealth therapy and psychiatric medications.

While the infusions aren’t “a magic fix,” they are a tool to help her move in the right direction.

“There used to be no light at the end of the tunnel,” she said. “Ketamine literally saved my life.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Patients Should Know the Health Benefits of Ketamine, Not Just the Risks

By Drs. Amber Borucki and Rakhi Dayal 

Recent headlines about the death of “Friends” actor Matthew Perry have pointed to ketamine as a contributing cause. Perry drowned in his hot tub last October, which the medical examiner’s office attributed to the “acute effects of ketamine,” as well as coronary artery disease and the opioid buprenorphine.

With this news, the public became more familiar with a medication they may never have heard of previously.  Ketamine is a classified by the Drug Enforcement Administration (DEA) as a “dissociative anesthetic,” meaning that it can cause the user to feel disconnected and alter their perceptions of sight or sound. 

Ketamine is used in hospital or surgical settings for anesthesia purposes, for acute pain management, in the emergency room or intensive care, and in some cases for chronic pain management. A form of ketamine (esketamine) is also used to treat mental health conditions. 

Appropriate monitoring and medical supervision are necessary for safe ketamine use. While it is important to recognize the risks of this medication when used improperly, it is also important to make sure that people don’t become overly fearful of a drug that serves an important role in patient care when delivered properly by trained healthcare providers. 

When the news broke that Michael Jackson’s death was attributed to propofol, patients were suddenly concerned about the use of this drug in their anesthesia treatment. As physicians, it is our responsibility to make sure patients understand the proper and improper uses of medications, and that we help alleviate concerns through education. As with any treatment, we need to strike the right balance between providing information on the risks, while also communicating the benefits. 

While ketamine is in the spotlight and more stories are published about its use, it is important that we take a moment to provide greater clarity about this medication.  

What Is Ketamine?  

Ketamine is an anesthetic agent that was originally developed in 1963 and gained approval from the Food and Drug Administration (FDA) as a general anesthetic in 1970. It is well established that ketamine has tremendous clinical value in providing sedation and pain relief when patients undergo anesthesia, and can also be beneficial as part of a comprehensive pain management plan. More recently, the FDA approved a form of ketamine in a nasal spray for treatment-resistant depression.   

Ketamine is used for a variety of indications, with some being FDA-approved and some being considered "off-label" uses.  

• General anesthesia (FDA-approved): Ketamine can be used as part of a general anesthetic given for surgery, and in certain clinical situations is one of the preferred medications.  When ketamine is given by a trained anesthesia provider, it is a safe and effective part of the anesthesia regimen.     

• Acute pain (off-label): Ketamine can be given to treat pain after surgery or for other significant acute pain conditions. This is commonly done by providing a low-dose infusion of ketamine through an IV while a patient recovers in the hospital. Although this is considered "off-label” use, there are joint guidelines issued in 2018 by the American Society of Regional Anesthesia and Pain Medicine (ASRA), the American Society of Anesthesiologists (ASA), and the American Academy of Pain Medicine (AAPM) to guide safe use for acute pain.

• Chronic pain management (off-label): Ketamine for chronic pain is also considered "off-label" use, but there are also consensus guidelines by the ASRA, ASA and AAPM that discuss chronic pain clinical scenarios where research found ketamine to be beneficial. 

If a patient is considering the use of ketamine for chronic pain, it is important to understand what type of medical supervision is provided and by whom. Patients should consider seeking treatment from a physician who is board certified in pain medicine, as they have extra training in pain management. The use of ketamine for chronic pain should be part of a larger umbrella of comprehensive pain treatment strategies provided in a multidisciplinary care team model.

What Are the Risks of Ketamine?

Ketamine is classified a schedule III controlled substance by the DEA, and therefore has some addictive potential. Side effects include increased heart rate, high blood pressure, increased saliva production, blurry vision, dizziness, sedation, nausea, urinary symptoms, dissociation (out of body sensation) and respiratory depression. It can even cause hallucination at certain doses. 

Caution is advised when ketamine is used with other medications that have similar adverse effects, such as sedation, respiratory depression, confusion, and delirium. Medication interactions and overdose with ketamine can lead to unconsciousness, slowed breathing, and rare severe consequences such as death. 

The medical use of ketamine in general anesthesia under the medical supervision of a trained provider is generally considered safe. Off-label use of ketamine for acute and chronic pain also has established national guidelines for medical practitioners to follow. This treatment can provide pain relief to patients safely, when provided by a board-certified anesthesiologist or pain physician using proper monitoring and safety guidelines.

Unsupervised and non-medical use of ketamine, particularly when taken in combination with other sedating medications, can lead to adverse outcomes and even death, as we saw with Matthew Perry. We encourage patients to have conversations with providers about their treatment plan and to discuss any concerns they have about the medications they are prescribed.

Amber Borucki, MD, is an Associate Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University.

Rakhi Dayal, MD is Chair of the Pain Committee for the California Society of Anesthesiologists, and Program Director of Pain Medicine and Professor of Anesthesiology & Perioperative Care at University of California, Irvine.

Ketamine Nasal Spray May Be Effective Migraine Treatment

By Pat Anson, PNN Editor

In recent years, ketamine has become a trendy drug for treating depression, anxiety, post-traumatic stress and some types of chronic pain. Usually administered by infusion or injection, ketamine is a non-opioid analgesic that acts on the brain by putting patients into a temporary dream-like state.

A new study at Thomas Jefferson University suggests that ketamine may also be an effective treatment for chronic migraine. Several previous trials have shown that intravenous ketamine is effective for chronic headache, but it required close monitoring by a pain specialist to adjust the dose and monitor any side effects.

In the new study, researchers gave 169 migraine patients a ketamine nasal spray that they could use at home without supervision. Over two-thirds of the participants suffered from daily headaches and nearly 85% had tried over 3 types of migraine prevention drugs, with limited success.

The study findings, published in the journal Regional Anesthesia & Pain Medicine, showed that nearly half the participants said the nasal spray was “very effective” and about 40% found it “somewhat effective.” Over a third said their quality of life was “much better.” 

Nearly 3 in 4 patients reported at least one side effect from ketamine, the most common being fatigue and double/blurred vision, followed by cognitive effects such as confusion, dissociation, vivid dreams and hallucinations. Most of the side effects were only temporary.

“In this descriptive study, intranasal ketamine served as an acute treatment for refractory chronic migraine by reducing headache intensity and improving quality of life with relatively tolerable adverse events. Most patients found intranasal ketamine effective and continued to use it despite these adverse events,” wrote lead author Michael Marmura, MD, Outpatient Director at the Jefferson Headache Center.

Marmura and his colleagues are cautious about who should use ketamine because of its potential for abuse. Ketamine has a short half-life of less than two hours, meaning patients may be tempted to use it repeatedly to keep chronic headaches at bay. Patients in this study used the nasal spray an average of just 6 times a month, but a small number (13.9%) used the spray daily.

“Clinicians should only consider the use of a potentially addictive medication such as ketamine for significantly disabled patients with migraine,” they warned. “(This) should be addressed carefully and individually, as some may respond only to repeated ketamine, while some may overuse it.”

In 2019, the FDA approved the use of Spravato, a nasal spray that contains a ketamine-like substance, for severe depression. Because of the risk of abuse, Spravato can only be administered in a doctor’s office, where patients can be observed for two hours after taking a dose. The use of such a spray to treat migraine would be considered an off-label use.

In addition to its medical uses, ketamine has long been known as a party drug – “Special K” -- because it can cause hallucinations and intense, dream-like states.

It didn’t take long for drug dealers to note the increase in ketamine’s popularity. Recent research published in JAMA shows that seizures of illicit ketamine in the U.S. have risen from 55 seizures in 2017 to 247 in 2022, a 350% increase. Because much of its was seized in powder form, researchers are concerned black market ketamine could easily be adulterated with illicit fentanyl.

Finding a New Ketamine Provider

By Barby Ingle, PNN Columnist 

For me, treatment with ketamine was life giving and lifesaving. I started ketamine infusion therapy in 2009, flying back and forth to Pennsylvania for treatment at Drexel University Hospital. My doctor there, neurologist Robert Schwartzman (now deceased), did much of the initial research on ketamine as a treatment for Reflex Sympathetic Dystrophy (RSD), also known as algoneurodystrphy or complex regional pain syndrome (CRPS).

I was on the ground floor with ketamine as a pain treatment, and helped bring it to Arizona with providers like Drs. Steven Siwek, Eric Cornidez, Natalie Strand at the Pain Centers of Arizona and Freedom Pain Hospital, to name a few.

One of my favorite places to go was Ketamine Wellness Centers (KWC), which operated a nationwide chain of ketamine clinics until it abruptly shut down last week. I knew many of KWC’s staff members at their Arizona and Florida offices.

I was patient zero for KWC. I remember sitting with Gerald Gaines (now deceased) and Kevin Nicholson, the current CEO, and sharing with them how ketamine changed my life. I asked them to look into ketamine and start a clinic. They did. Kevin built up the business and eventually opened 13 clinics in 10 states before recently merging KWC with another company, Delic Holdings.

The merger hasn’t worked out due to financial issues. The clinic closures significantly affect access to care for chronic pain, depression and mental health in the communities they served. KWC was one of the only places that treated both pain and depression, using ketamine in conjunction with other modalities.

As a patient, I have been through clinic closures before and providers stopping their ketamine treatment for various reasons. Upon reflection, I have been to more than 10 clinics and had close to 20 providers since starting in 2009. It is scary to think that thousands of patients like me have to start the process all over again, but having been in this situation before, I know it can work out.

My message to the former patients of Ketamine Wellness Centers is that there is hope. It may be harder depending on where they live, but other options exist. I plan on getting the same treatment that I have since 2009. I was asked how to go about finding a new ketamine provider by another patient. My response is this:

1. Know your ketamine protocol and how it works for you

2. Call ahead of your consultation and say, “This is what I had. This is what I want. Can you do it?”

3. Don't settle for less. There are many ketamine providers now. Find the one that is a fit for you.

Getting this treatment is very personal, and you need a feeling of safety, comfort and trust. It is not just about getting your IV hooked up and going from there. You should be exploring your options, just like you did the first time with KWC.  Now you have experience and know what ketamine therapy is like. 

When I got this treatment for the first time from Dr. Schwartzman, my entire life changed for the better. I went into the hospital in a wheelchair. Seven days later, I walked out. It's helped with dystonia, strength, balance, coordination and more. The most significant area of success for me was the burning fire pain. I strive never to have that pain again. Receiving ongoing treatments helps me live with my daily chronic pain issues. 

I received my latest infusions at the Ketamine Wellness Center in Tucson a few weeks ago. At the time, I had no idea that KWC was about to shutdown. I know it's a shock to all of us former patients, and I'm worried about the employees and where they will go. Their knowledge and experience will be welcomed at other clinics.

Part of the problem with KWC is that they expanded too quickly when they merged with Delic. Ketamine treatment is not a cash cow for providers, but they can make a good living and help thousands of patients who rely on ketamine to relieve their pain, be it mental or physical.

I hear that there will be lawsuits due to KWC’s abrupt closure and lack of notice, the inability of some patients to receive their medical records, employees who have not been paid correctly, and other challenges that have come to light. This will all be sorted out. It will take time, but we already know it is worth the time, effort and energy to ensure we can receive the life-giving treatments. 

I still need to receive my medical records from KWC, but I have all of my records from other providers and have changed my treatment protocol. I am already in talks with new providers. I don't have time to wait around.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com   

Ketamine and Oxytocin Provide Pain Relief for Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

Nearly every day we receive an email from someone who is having trouble getting enough pain medication to give them a good quality of life.  In this age of opioid restrictions, there is hope. 

In the past, opioids and gamma amino butyric acid (GABA) substitutes such as diazepam (Valium) and gabapentin (Neurontin) have been the mainstays for pain control of adhesive arachnoiditis (AA). Today, there are alternatives that can enhance your current program to give you better pain control.

Low dose naltrexone is the initial pain reliever recommended to newly diagnosed AA cases. There are two other potent pain relievers that can be used with both naltrexone and opioids to achieve better pain relief: ketamine and oxytocin. Either agent is a good opioid substitute.

Ketamine provides pain relief primarily by suppressing a nerve receptor called N-methyl-d-aspartate. It can be taken by several non-oral routes of administration: nasal, injectable, sublingual or troche (dissolvable tablet).

Oxytocin (not to be confused with oxycodone or OxyContin) is a hormone that is a natural pain reliever. It surges in a woman’s body at the time of delivery to provide pain relief. It acts by activating the endorphin (opioid) receptors and by blocking nerve impulses between the brain and spinal cord.

Every community now has one or more pharmacies that will compound or “make” formulations of ketamine or oxytocin. We favor under-the-tongue (sublingual) or buccal (cheek) formulations.

Ketamine and/or oxytocin can be taken between opioid dosages or within 5 to 10 minutes before or after an opioid dosage to make the opioid stronger and last longer.

Ketamine and oxytocin can be used separately or used as combination therapy. Starting dosages of ketamine are 10-15 mg and oxytocin 10-20 units, which are administered within 10 minutes of each other. Dosages can later be raised above the starting dose.

We find the combination of ketamine and oxytocin to provide equal or better pain relief that most prescription opioids. Neither ketamine nor oxytocin are opioids, so there is no bias or resistance to their use. Also, overdoses are essentially not known to occur with regular dosages.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Experimental Ketamine Pill Effective in Treating Acute Pain

By Pat Anson, PNN Editor

An experimental oral tablet that combines ketamine with aspirin was nearly as effective as an opioid in treating acute pain in emergency room patients, according to the results of a small pilot study.

Ketamine is a non-opioid analgesic that is also used to treat anxiety and depression. The drug is so potent, that it is usually administered by an infusion, injection or nasal spray under strict medical supervision. Some doctors and patients have also found ketamine effective as a treatment for certain chronic pain conditions.

“Ketamine has long been viewed as a highly promising analgesic, but its adverse effect profile, available routes of administration, and short-lasting effects limited its use. Our goal is to overcome all three of these limitations,” says Joseph Habboushe, MD, an emergency room physician and founder of Vitalis Analgesics.

Vitalis has developed a proprietary formulation of aspirin that delivers faster and stronger pain relief than traditional aspirin. The company is working to see if a combination of its aspirin with low-dose ketamine could be used to treat pain.

In the pilot study at Maimonides Medical Center in New York, 25 emergency room patients with acute musculoskeletal pain were given the ketamine-aspirin pill – called VTS-85. After an hour, their pain level scores were reduced an average of 3.8 points, pain relief similar to that of oxycodone-acetaminophen (Percocet) formulations, which reduced pain levels by 4.0 points in previous studies.

Researchers say the pain relief from VTS-85 lasted for two hours, with pain scores dropping an average of 4.4 points. Notably, only 4-8% of patients experienced the dissociation and sedation that is usually experienced when ketamine is administered intravenously.

“The results of this pilot study are highly encouraging, with pain reduction similar to studies using IV ketamine formulations but lasting longer and with lower side effects, and it’s oral,” said Habboushe.

The study findings are published in The Journal of Emergency Medicine.

“If proven in larger controlled trials, this could represent a breakthrough in the treatment of acute pain and a range of other indications,” said lead investigator Sergey Motov, MD, Department of Emergency Medicine, Maimonides Medical Center.

Vitalis has completed a second larger trial on the use of VTS-85 in emergency room patients, but the results have not yet been released. The company is also studying VTS-85 as a treatment for acute headache and postoperative pain. The ketamine-aspirin pill will require a prescription if approved by the FDA.

Ketamine Gets FDA Orphan Drug Designation for CRPS

By Pat Anson, PNN Editor

A Canadian biotech company has announced it has been granted orphan drug designation from the U.S. Food and Drug Administration to investigate the use of ketamine as a treatment for Complex Regional Pain Syndrome (CRPS)¸ a disorder of the nervous system that causes severe, intractable nerve pain. Currently, there is no FDA approved medication for CRPS.

Toronto-based PharmaTher Holdings specializes in the development of ketamine and other psychedelic drugs for mental health and pain conditions. The company also recently received an orphan drug designation for ketamine as a treatment for Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig's disease.

“Receiving our second FDA orphan drug designation with ketamine for CRPS continues our momentum in building a specialty ketamine-based product pipeline for not only mental health disorders, but also for rare and near-rare conditions present in neurological, pain and inflammatory disorders,” Fabio Chianelli, CEO of PharmaTher, said in a statement.

Ketamine is not an opioid, but acts on pain receptors in the brain in a similar manner. Although the drug is only approved by the FDA for anesthesia and depression, a growing number of clinics provide off-label infusions of ketamine to treat difficult chronic pain conditions such as CRPS. In high-dose infusions, ketamine puts patients into a temporary dream-like state that can lead to hallucinations and out-of-body experiences.

The FDA first approved ketamine in 1970 and the medical patent on it expired years ago. The goal of PharmaTher is to develop its own propriety formulation of ketamine and expand its use. Orphan drug designation helps speed that process along by encouraging companies to invest in new uses for old drugs, often jacking up the price in the process.

If successful, PharmaTher says it would have seven years of exclusive marketing rights for its ketamine formulation, as well as potential tax credits and the waiver of $2.4 million in FDA filing fees.

In 2019, the FDA approved Spravato, a ketamine-based nasal spray developed by Janssen Pharmaceuticals, as a treatment for depression. A single dose of Spravato costs about $900.

“It seems they are doing something similar to what Janssen did with Spravato,” says Kimberley Juroviesky, a retired nurse practitioner who receives ketamine infusions for CRPS. Juroviesky co-chairs an advocacy group that’s trying to get more insurance coverage of ketamine.

“They are taking ketamine and changing it slightly to create a new drug. Then they can charge hundreds for it. We are hopeful though that maybe this can help us in our fight to get generic ketamine covered by insurance,” she told PNN in an email.

PharmaTher plans to launch a Phase 2 clinical trial of its ketamine formulation in 2022. In addition to treating CRPS, the company recently began a clinical study of ketamine as a treatment for Parkinson’s disease, and has filed a patent application for ketamine as a treatment for obesity and Type 2 diabetes. PharmaTher is also developing a microneedle patch for the delivery of ketamine and other psychedelic drugs.

While ketamine is emerging as a trendy pain reliever and many patients swear by it, medical societies urge caution. Guidelines from the American Society of Anesthesiologists, American Society of Regional Anesthesia and Pain Medicine, and the American Academy of Pain Medicine only support ketamine infusions for CRPS and post-surgical acute pain. The guidelines say there is no evidence supporting ketamine infusions for any other type of pain.

A 2019 study of nearly 300 patients who received ketamine infusions found that over a third reported significant side effects such as hallucinations and visual disturbances.

Pioneering Neurologist and CRPS Expert Remembered

By Pat Anson, PNN Editor

A pioneering neurologist who helped develop new treatments for Complex Regional Pain Syndrome (CRPS) has died. Robert Schwartzman, MD, passed away last week at the age of 81.

Dr. Schwartzman was an emeritus professor and former chair of the Department of Neurology at Drexel University College of Medicine in Philadelphia. He also taught and practiced medicine at Thomas Jefferson University, University of Texas Health Science Center, San Antonio and the University of Miami. He mentored hundreds of residents and colleagues, and authored several reference books on neurology.

The primary focus of Schwartzman practice and research was chronic pain, particularly CRPS (also known as Reflex Sympathetic Dystrophy or RSD), a chronic and severe pain syndrome affecting the nervous system.

At Jefferson University, Schwartzman founded the first CRPS clinic in the U.S. and pioneered the use of ketamine as a treatment for CRPS and other pain conditions.

“I met Dr Schwartzman in 2007 at a pain conference and joined the wait list to see him as my provider for RSD. I was finally able to so do in 2009. I shared what I learned with as many people as I could and continue to this day,” says PNN columnist Barby Ingle, founder and president of the International Pain Foundation. “His impact will live on through patients like me.”

DR. ROBERT SCHWARTZMAN

Ingle wrote about her first experience as a patient of Schwartzman in a PNN column. She went into the hospital in a wheelchair, but was able to walk out a week later after a series of ketamine infusions. She continues to get infusions regularly.

“He was a brilliant doctor and world expert on Reflex Sympathetic Dystrophy who's training and 40+ years of research help teach other providers who have also gone on to help millions of patients,” Ingle said in an email. “He will forever live in my heart as he is the provider who got me from my wheelchair and bed bound to walking and living life to my fullest. I will continue sharing his pioneering works and receiving his protocol for my infusion therapy. He is a treasure to our whole community.”   

“I didn't know him personally but I knew and respected his pioneering work,” says Lynn Webster, MD, past president of the American Academy of Pain Medicine. “He challenged our thoughts and understanding about how to treat the devastating disease of CRPS.  

“Dr. Schartzman took us into unexplored areas of how to treat a crippling disease. His work inspired me and countless others who have tried to implement his treatment approach for our own patients. He has given us a legacy of research that will be the foundation on which new discoveries about the mechanism and cure for CRPS will occur. The passing of Dr. Schwartzman is a huge loss for science and humanity.”

Schwartzman retired from clinical practice in 2013 and moved to Marco Island, Florida. Funeral arrangements are private. His family requests that any donations in his memory be made to any Florida wildlife or conservation charity.

Low-Dose Ketamine Effective in Treating Trauma Pain

By Pat Anson, PNN Editor

Low doses of ketamine are just as effective at treating trauma pain in emergency room patients as larger standard doses, according to a new study by researchers at Loyola University Medical Center in Chicago.

Ketamine is a non-opioid that’s been used for decades as a surgical anesthetic, but in recent years it’s increasingly being used to treat short-term acute pain in hospital emergency rooms. A standard dose of ketamine administered intravenously is 0.30 mg/kg, but Loyola researchers wanted to see if half the normal dose could be just as effective.

"We challenged the conventional ketamine dose used to treat pain," said lead study author Shannon Lovett, MD, an emergency physician at Loyola University Medical Center (LUMC). "Our study should help demonstrate that a lower dose is sufficient to treat pain."

Lovett and her colleagues recruited 98 patient volunteers who were in moderate to severe acute pain. Half received just 0.15 mg/kg of IV ketamine, while the other half received the standard dose. Both patients and providers were “blinded” on which dose was being administered.

After 15 minutes, patients in the standard dose group had a greater reduction in pain, but experienced more side effects such as dizziness, mood changes and hallucinations. After 30 minutes, adverse events and pain levels were similar in both dosing groups.

Asked if they would take ketamine again, 76% of patients in the low-dose group said yes, while only 62% in the standard dose group said they would.

"As we continue with our research, we hope to find data that supports diminished side effects with the lower dose of ketamine with equal efficacy in treating pain," said senior author Megan Rech, PharmD, an emergency medicine pharmacist at LUMC.

The study findings are reported in the journal Academic Emergency Medicine.

Researchers said there is “robust evidence supporting the use of ketamine as an alternative to traditional opioids across a wide range of doses,” but its effectiveness is usually short-lived. Ketamine does not have a significant analgesic effect after 60 minutes. It also puts patients into a hypnotic, dream-like state in which they appear awake, but are unresponsive. For that reason, ketamine is only administered under medical supervision.

A growing number of outpatient clinics provide off-label infusions of ketamine for depression, post-traumatic stress disorder (PTSD) and difficult chronic pain conditions such as Complex Regional Pain Syndrome (CRPS). The infusions are usually not covered by insurance.

A pilot study is underway to see if an oral version of ketamine and aspirin, combined in a tablet, could be used to treat pain at home.

Advocacy Group Seeks to Expand Insurance Coverage of Ketamine

By Pat Anson, PNN Editor

A coalition of patients and healthcare providers is launching an effort to expand insurance coverage for ketamine, a non-opioid anesthetic increasingly used to treat chronic pain, depression and post-traumatic stress disorder (PTSD).

Ketamine is typically administered by infusion under strict medical supervision, a process that that can take up to an hour and cost thousands of dollars. The first goal of the Ketamine Taskforce is to get ketamine infusions fully covered by Medicare.

“Medicare doesn’t officially pay for ketamine infusions. What they will pay for is a generic infusion code similar to if someone was getting an antibiotic infused. The level of reimbursement is very low,” says Kimberley Juroviesky, a retired nurse practitioner and task force co-chair who receives ketamine infusions for Complex Regional Pain Syndrome (CRPS). 

“Since these reimbursement rates are so low, the majority of small ketamine clinics don’t accept insurance. This leaves the majority of pain patients without the pain relief they could otherwise be benefiting from.”

Ketamine is approved by the Food and Drug Administration as a surgical anesthetic, but a growing number of ketamine clinics provide off-label infusions for depression, PTSD and difficult chronic pain conditions such as CRPS. The infusions put patients into a hypnotic, dream-like state — leaving them with less physical and emotional pain once the ketamine wears off. Many insurers consider this off-label use experimental.

“If we could get Medicare to officially put ketamine on their schedule as a treatment for chronic pain, this would hopefully raise reimbursement rates to a level where all providers could afford it. Also, this would force private insurers to pay for ketamine infusions as well and no longer refuse to pay saying it’s experimental,” Juroviesky said in an email. 

PNN columnists Barby Ingle and Madora Pennington have both had ketamine infusions, Barby for CRPS and Madora while recovering from foot surgery.

“The swelling in my foot dramatically improved. Chronic, low-grade discomfort along my spine also disappeared. I felt emotional relief from past trauma, from pain and other life experiences,” Madora explained.

“I went into the hospital in a wheelchair, but walked out on my own a week later,” said Barby, after seven days of ketamine infusions. She now gets “booster” infusions four times a year and no longer takes daily pain medication.

Some ketamine users report lingering side effects, such as hallucinations and visual disturbances. Guidelines from the American Society of Anesthesiologists, American Society of Regional Anesthesia and Pain Medicine, and the American Academy of Pain Medicine only support ketamine infusions for CRPS and short-term acute pain.

“Excluding CRPS, there was no evidence supporting ketamine infusions for intermediate or long-term improvements in pain," the guidelines warn.

The Ketamine Taskforce is working with a consortium of ketamine clinics, collecting data on the safety and efficacy of infusions. That research will be shared with the Centers for Medicare and Medicaid Services (CMS) in an effort to expand Medicare coverage of ketamine for pain and mental health conditions.

Pilot Study Launched of Ketamine Tablet as Pain Reliever

By Pat Anson, PNN Editor

Ketamine has become a trendy alternative treatment for pain, depression, anxiety and post-traumatic stress syndrome (PTSD). But to get it, you’ll need to get a ketamine infusion, injection or nasal spray – usually under strict medical supervision.

But someday you may be able to take a ketamine tablet at home, just like you would most other medications. A pilot study is underway at a New York City hospital to see if an oral formulation of ketamine and aspirin could be a useful treatment for pain.

“For certain patients, ketamine could be a real game changer,” says Dr. Joseph Habboushe, an emergency room physician and founder of Vitalis Pharmaceuticals. “If you look at pain management and what we have available to send patients home with, it’s really limited. We have NSAIDs. We have opiates. We have other things that sedate. It’s a fairly limited in choice.”

Ketamine is not an opioid and does not suppress respiration, making it relatively safe to use. But in high doses, it puts patients into a dissociative, dream-like state -- making it inappropriate for outpatient use.

What Habboushe and his colleagues hope to demonstrate is that a low dose of ketamine, when combined with aspirin, can be an effective and non-addictive pain reliever that can be used safely at home.

Their observational study at Maimonides Medical Center will enroll 25 patients with acute musculoskeletal pain, who will receive 0.5 mg of oral ketamine administered simultaneously with 325mg of aspirin. Pain scores and adverse events will be recorded at various intervals for up to two hours.

The study is being led by Sergey Motov, MD, an emergency room physician who is passionate about finding alternatives to opioids.

VITALIS PHARAMCEUTICALS

"The need for safe and efficacious analgesics in the emergency department and on an outpatient basis is stronger than ever," Motov said in a statement. “Taking a novel approach to orally-administered ketamine has the potential to move physicians one step closer to successfully combatting the nation's ongoing opioid crisis.”

Vitalis has developed a proprietary formulation of aspirin -- called VTS-Aspirin -- that delivers faster and stronger pain relief than traditional aspirin. Preliminary research indicates that combining VTS-Aspirin with low-dose ketamine may boost its potency.

“This is a proof-of-concept study. If we can demonstrate that ketamine will work orally, then it can be used for acute pain, maybe later chronic pain, maybe depression and all the other indications,” Habboushe told PNN. “If we can achieve that, it will be a breakthrough that will absolutely drive a lot of value to patients by reducing opiate need and reducing their pain in a very significant way. And so, it’s worth studying.”

Vitalis is also studying the use of VTS-Aspirin with fumaric acid as a treatment for multiple sclerosis that has fewer side effects. Also undergoing research is a combination of VTS-Aspirin with niacin as a treatment for high cholesterol.

12 Holiday Gifts on Life With Chronic Pain

By Pat Anson, PNN Editor

If you live with chronic pain or illness and want to have a friend or family member get a better understanding of what you're going through -- here are 12 books and videos that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon. As an Amazon Associate, we earn from qualifying purchases. 

Finding a New Normal: Living Your Best Life with Chronic Illness by Suzan Jackson

For nearly 20 years, Suzan Jackson has lived with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a condition she shares with two of her sons. In this book, Jackson shares what she and her family have learned about living well with chronic illness and finding a “new normal” through strong relationships, healthy emotions and finding joy in everyday life. The emphasis is on living life, not just enduring it.

War on Us by Colleen Cowles

Lawyer Colleen Cowles looks at how the war on drugs and myths about addiction have created a dysfunctional drug policy that prosecutes doctors for treating pain and stigmatizes patients for seeking relief. The U.S. has spent over a trillion dollars fighting the war and has little to show for it except some of the highest rates of addiction, overdose and incarceration anywhere in the developed world.

Ketamine Infusions: A Patient’s Guide by Berkley Jones

Berkley Jones looks at the increasing use of ketamine, a non-opioid analgesic, in treating chronic pain, depression, post-traumatic stress disorder and anxiety. This book is a useful guide if you are considering ketamine infusions and want to know how to select a provider, what to expect during infusions and possible side effects. Although primarily used to treat depression, some pain patients say ketamine is effective in treating neuropathy and CRPS.

Bitten: The Secret History of Lyme Disease and Biological Weapons by Kris Newby

Author Kris Newby began looking into the origins of Lyme disease after she was bitten by a tick and became seriously ill. Her research led her to a secret U.S. government program during the Cold War that used insects as biological weapons to spread disease. Newby believes the Lyme outbreak that began 50 years ago and has infected millions of Americans may have been the result of a military experiment gone wrong.

Vagina Problems: Endometriosis, Painful Sex and Other Taboo Topics by Lara Parker

A memoir by Lara Parker that explores — with unflinching honesty — her battle with endometriosis, a chronic vaginal condition that makes daily life difficult and sex painful. As a teenager, doctors initially dismissed Parker’s pain as “bad period cramps” and suggested her pain was psychological. She nearly checked herself into a mental institution before finally getting a proper diagnosis.

A Quick Guide to CBD by Dr. Julie Moltke

CBD won’t cure you of chronic pain, but Dr. Julie Moltke says cannabidiol can reduce pain, inflammation, anxiety and insomnia — and help make life more livable. This handbook is intended for beginners who want to learn how and when to take CBD, and are puzzled by all the hype surrounding vapes, oils, gummies and edibles on the market.

Pain Warriors by Tina Petrova

A documentary produced by patient advocate Tina Petrova that examines the poor treatment and medical neglect faced by millions of pain sufferers in North America. The film is dedicated to Sherri Little, a chronic pain patient who committed suicide after one last attempt to get effective treatment. Available on DVD or for streaming on Amazon Prime.

Together: The Healing Power of Human Connection by Dr. Vivek Murthy

This timely book by former U.S. Surgeon General Dr. Vivek Murthy looks at the importance of human connections and how loneliness affects our health and society at large. To combat loneliness, Murthy recommends spending at least 15 minutes each day connecting with people we care about and to give them our undivided attention.

Bottle of Lies: The Inside Story of the Generic Drug Boom by Katherine Eban

Wonder why that generic drug you take doesn’t seem to work? About 90% of pharmaceutical drugs are generic and most are manufactured overseas. While generics are promoted as cheaper alternatives to brand name drugs, journalist Katherine Eban found the generic drug industry rampant with greed, fraud and falsified manufacturing data — resulting in many patients consuming drugs that are ineffective or have dangerous side effects.

In Pain: A Bioethicist’s Personal Struggle with Opioids by Travis Rieder, PhD

Travis Rieder is a professor of bioethics at Johns Hopkins University who severely injured his foot in a motorcycle accident and became dependent on opioids while recovering from surgery. In this book, he shares his frustration with the healthcare system and how it often abandons patients to pain, addiction or both. Rieder serves on a CDC advisory panel that is helping the agency prepare an update of its controversial 2016 opioid guideline.

The Chronic Pain Management Sourcebook by David Drum

A comprehensive guide about chronic pain by medical journalist David Drum, who summarizes the many causes, types and treatments of pain. Drum also has tips on managing stress, anxiety, lack of sleep and depression. The book is easy to understand and would be a useful resource for family members, friends and caretakers who want to understand and help someone living with chronic pain.

A Little Book of Self Care: Trigger Points by Amanda Oswald

This well-illustrated book provides 40 simple, step-by-step exercises you can use to manage back pain, migraine and other painful conditions. Author Amanda Oswald explains how “trigger points” — small knots of muscles and connective tissue — can be relieved through self-massage and the “power of touch” without visiting a chiropractor or physical therapist.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

Meeting the Doctor Who Helped Me Most

By Barby Ingle, PNN Columnist

In honor of September being Pain Awareness Month, I wanted to give homage to the doctor who helped me most over the past 20 years. He was in my life for about 6 years of this journey, before he retired, but he has given me tools for a lifetime.

When I arrived at Dr. Robert Schwartzman’s office for the first time, I was excited. I had met him a few years prior at a medical conference, where he agreed to treat me. Dr. Schwartzman is one of the world’s leading experts on Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). Due to high demand from other patients, there was a waiting list to see him.

I was in my wheelchair and had made the trip to Pennsylvania from Virginia, where I was staying with my sister and her husband. At the time, I was hurting all over and many of my symptoms were flaring due to the travel.  I had many types of pain going on: burning, stabbing, electric, shooting, deep, surface and bone pain. I was dizzy and felt nauseated.

My name was called and my sister and I went to the exam room. The nurse was very nice and asked all the right questions. She had me put on a gown. Then we waited.

When Dr. Schwartzman walked into the exam room to see me, he was followed by about 9 student doctors. His first words were, “Now she has Reflex Sympathetic Dystrophy. Anyone should be able to see it at first glance.” He then began pointing out all of the symptoms I had from the RSD. He knew things before I even said anything.

The doctors saw the blanching in my skin. From my face to my feet, I had discoloration. I never paid that much attention to how bad it had gotten over the years; maybe because it happened over time. I took pictures of it, but did not know that it meant RSD had spread to those areas.

The most severe burning pain was on the right side of my body. I had all the other types of pain on the left side, but the atrophy and lack of coordination were not as bad.

DR. ROBERT SCHWARTZMAN

When Dr. Schwartzman began to do neurological testing on both sides, I felt the pain. The right side was worse, but the left side was definitely affected. He discussed me being diagnosed incorrectly by my other doctors with Thoracic Outlet Syndrome and having my rib removed twice. He also guessed correctly that I had been diagnosed with temporomandibular joint dysfunction (TMJD) because of the facial pain and that I was having issues with my thyroid.

He remarked about my sweating, the swelling in some areas, and asked about my low-grade fevers, Horner syndrome and more. He discussed and noted the atrophy in my hands, arms, legs, feet, face, back and the dystonia in my hands and feet. By discussed, I mean he discussed it with the other doctors. Dr. Schwartzman hardly spoke to me.

Next, he had me do neurological tests. An easy one that you can do right now involves your hand. Take the tip of your index finger and tap it to the tip of your thumb as many times and as fast as you can. I thought that I did it very well, especially with my left hand. But Dr. Schwartzman explained the way I did it was awkward and slow, which was another symptom.

I did not understand, so he showed me. He could tap his fingers so fast that it looked like I was going in slow motion. Since then, when I ask others to do the same thing, I am amazed that I cannot go as fast, no matter how hard I try.

He watched me smile, had me stick my tongue out, and then asked if I had trouble swallowing and if my voice goes in and out sometimes. I said, "Yes, how did you know?" He said that the RSD was affecting my throat and intestines.

I had been diagnosed with gastrointestinal ischemia and gastroparesis a few years earlier. The hospitalist that performed the tests said there is a section of my intestines that was getting little to no blood. I did not understand how that was related to the RSD until I saw Dr. Schwartzman and learned that RSD causes vascular constriction, which can make it difficult to get an IV line inserted or even do blood tests.

I never realized that vascular constriction could also affect organs. I thought I was just eating too quickly or being lazy when I choked on food. I did not know why my voice changed or why I would lose it sometimes. The RSD even affected the way my nails and hair grow.

Dr. Schwartzman was spot on with everything. He added that whiplash or brachia plexus injuries are a leading cause of upper extremity RSD. Because of my additional traumas and surgeries, the RSD had spread.

Ketamine Infusions

Sometime near the end of the exam, Dr. Schwartzman said to the student doctors, “The only thing that will help this patient 100% is the coma treatment.”

I was shocked. I thought I was going to be getting outpatient ketamine infusions. I began to tear up. I kept telling myself not to cry. It is never good to cry at a doctor’s office. I wanted to be taken seriously and be strong. As soon as they left the room, tears flowed down my face. The nurse said she would be right back with all of the instructions and scripts that he was giving me.

I did not have any idea of the issues that were involved with RSD or that I had many of the symptoms. Instead of starting right away, I had to wait another 9 months to get a bed in the hospital, where I underwent 7 days of inpatient ICU ketamine infusions.

I went into the hospital in a wheelchair, but walked out on my own a week later, ready to live the next chapter in my life. That was Dec. 14, 2009. I still undergo ketamine infusion therapy about 4 times a year for booster treatments, but I am no longer on daily medications for pain.

I thank Dr. Schwartzman and all the research doctors out there coming up with treatments and scientific data for people like me with chronic rare diseases and severe life changing pain. We should always remember there is reason for hope. We just have to be active in seeking and using all of the resources available.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.