The Link Between Collagen Deficiency and Arachnoiditis

By Dr. Forest Tennant

A major finding in our studies of adhesive arachnoiditis (AA) is that most AA patients also have hypermobile Ehlers-Danlos syndrome (hEDS) or a related disorder now called hypermobile spectrum disorder (HSD).

AA is a chronic inflammatory condition that causes nerves in the spinal canal to form adhesions that “glue” them together, while hEDS and HSD cause deficiencies in collagen and the immune system.

How are these conditions connected?

Normal collagen is in thick strands that hold connective tissues together and helps resist infections, tearing, and autoimmune degeneration. When collagen is deficient, the strands may be thin, broken, shortened or non-existent. This allows viruses and bacteria to invade, infiltrating tissues and causing more infections than in individuals with healthy immune systems.

Spinal tissue normally contains considerable amounts of collagen, but in patients with hEDS or HSD they are weak and susceptible to deterioration, inflammation, adhesions and scarring. These spinal tissues include intervertebral discs, vertebrae, spinal canal cover (dura and arachnoid layers), ligaments, and cauda equina nerves.

Weaknesses in spinal tissue make persons with hEDS and HSD more susceptible to AA. It’s also not uncommon for them to develop one or more of these conditions before AA:   

• Tavlov cyst

• Spinal fluid leaks

• Chiari

• Tethered spinal cord

• Herniated disc

• Back pain

• Neck pain

• Spinal arthritis

We have found that persons with hEDS and HSD are also susceptible to Lyme disease, cytomegalovirus, herpes 6 virus, and especially the Epstein-Barr virus (EBV). Almost everyone has EBV, which is typically dormant, but the virus may reactivate from its parasitic life in throat membranes or lymphocytes to infiltrate the brain and spinal tissues.

Persons with hEDS or HSD who have back or neck pain for over 90 days should be screened with the new EBV 4 panel test and take measures to hopefully prevent AA. We highly recommended that they take collagen supplements.

In our studies of patients with MRI-documented AA, essentially 100% have EBV autoimmunity and about 70% show EBV reactivation. About half of those that we review do not know they have hEDS or HSD.

For more details on the link between AA, hEDS and HSD, our new book "The Ehlers-Danlos / Arachnoiditis Connection" is recommended.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis.

Readers interested in learning more about this research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can also subscribe to its bulletins here.  

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

Epstein-Barr Virus Emerging As Possible Cause of Chronic Pain

By Dr. Forest Tennant, PNN Columnist 

When most people hear about the Epstein-Barr virus (EBV), they may recall its reputation as the rather harmless "kissing disease" known as mononucleosis.  To the surprise of many, this previously unheralded virus has recently emerged as a cause of some cancers and painful disorders.

It is now clear that EBV must be contained and suppressed in order to relieve the pain and suffering of many persons with chronic pain. This column is an introduction to the critical involvement of EBV with several chronic pain conditions.

The Epstein-Barr virus is named after Drs. Anthony Epstein and Yvonne Barr. In 1964, they discovered the virus after they found it in a cancer common in Africa called Burkitt’s Lymphoma.  Since that time, EBV has been found to cause other cancers including nasopharyngeal, gastric, Hodgkin’s lymphoma, and leukemia.  Some estimate that EBV causes about 200,000 cancers a year.

About three years after Epstein and Barr discovered EBV, it was found to be the cause of infectuous mononucleosis, which is known to trigger autoimmune complications.  Autoimmunity is simply defined as some element in the body that attacks, erodes, and destroys tissue. 

In 1968, this author reported that mononucleosis could cause glomerulonephritis, an autoimmune renal disease.  Over the ensuing decades, EBV has also been associated with other autoimmune disorders, including hepatitis, rheumatoid arthritis, fibromyalgia, systemic lupus, and Sjogren's syndrome.

EPSTEIN-BARR VIRUS

In 2018, a seminal study documented that EBV could cause a number of painful medical conditions by activating specific genes.  Dr. John Harley and colleagues at Cincinnati Children's Hospital Medical Center, with funding from the National Institutes of Health, found that a viral protein called Epstein-Barr nuclear analog 2 (EBNA 2) binds to the deoxyribonucleic acid (DNA) of genes that promote autoimmunity and some chronic pain conditions.

The pain conditions that Harley and his colleagues associated with EBV are multiple sclerosis, rheumatoid arthritis, celiac disease, type 1 diabetes, inflammatory bowel disease, thyroiditis, and juvenile arthritis.  Subsequent studies added Sjogren's syndrome, mixed connective tissue disease, and polymyositis to the list of EBV autoimmune conditions.

The Harley research is compelling.  We urgently need clinical studies of EBV in severe chronic pain patients to help develop new diagnostic, prevention, and treatment measures.  To this end, I've chosen to study the EBV relationship to painful spine and connective tissue diseases, especially adhesive arachnoiditis (AA) and Ehlers-Danlos syndrome (EDS). These conditions are considered intractable pain conditions in clinical pain practice. 

So far, we have collected EBV laboratory test results from over 80 persons with confirmed AA. Every case has demonstrated abnormally high levels of EBV IgG antibodies, which suggests the presence of autoimmunity and the possible invasion of brain and spinal tissue by the virus. 

Every patient with high IgG antibody levels also has herniated discs, and the majority have hypermobile EDS. Prior to developing AA, all had conditions associated with autoimmunity, such as fibromyalgia and small fiber neuropathy. All of them now have intractable pain.

How It Begins

Patients and clinicians concerned about chronic pain need to understand the basics of how EBV causes and aggravates chronic pain conditions. 

EBV is a member of the herpes virus family, which includes the other herpes viruses and cytomegalovirus.  It is a natural, lifelong parasite that usually infects children before the age of two. 

When EBV first enters the body, it is an “active” virus that may cause a cold, sinusitis, bronchitis, or possibly even go unnoticed. Infants and young children often have the “sniffles” and it could be mistaken as a simple cold. Some children who initially become infected with EBV later develop mononucleosis in their teenage or young adult life.  

After the initial infection, EBV settles into one’s lymphocytes and lining of the throat and nasal cavity to remain for life. Under normal physiologic circumstances, it is a latent or dormant parasite that does no harm.

Over 95% of adults will test positive for low levels of IgG antibodies, decades after their initial contact with EBV during childhood. When chronic pain patients are tested, autoimmunity is suspected if IgG antibodies are above normal levels found in the great majority of adults.

Once EBV has settled into lymphocytes or the throat lining and becomes dormant, it is living a harmless, symbiotic, parasitic life with its human host.  It will remain in this state, unless the body undergoes some kind of stress, usually trauma or an infection, that lowers or degrades the body's innate or natural immunologic protection systems. 

At this time, the virus may vacate its dormant or latent state to begin what is called a "lytic" or duplicative state.  The term used to indicate this state is "reactivation," meaning that the virus is again active, and attacking and invading new tissues. 

Once reactivated, EBV may create an autoimmune state by altering genes or by developing what is called an auto-antibody that will attack tissues.  In either case, an autoimmune state has been created that attacks normal tissues to produce inflammation, adhesions, scarring, and pain. 

Lymphocytes infected with reactivated EBV may enter any number of tissues. They may cross the blood brain barrier, enter the spinal cord and brain, and attack tissues such as the cauda equina, arachnoid membrane, intervertebral discs, and glial cells. This is the pathologic process in which EBV reactivation may cause chronic pain.

It is likely that entry and invasion of spinal canal and brain tissues may be responsible for the autoimmune manifestations seen after a stroke, head trauma, or complex regional pain syndrome (CRPS).  EBV may also be a cause of centralized pain that is associated with over-sensitization, hyperalgesia, and intractable pain.  There are reports that such common chronic pain conditions as fibromyalgia, small fiber neuropathy, and some arthropathies are caused by EBV autoimmunity.

This article's major intent is to inform all concerned parties that deal with chronic pain that EBV is not just some virus that causes the "kissing disease." It is a new revelation that compels an understanding and awareness that has the distinct potential to improve the plight of chronic pain patients. 

Laboratories and clinical researchers, including this author, are scurrying to identify more diagnostic, treatment, and preventive measures for EBV-caused autoimmunity. I'm pleased to report that our EBV project has been able to identify some initial testing and treatment measures which appear to be effective and a good start in dealing with EBV autoimmunity.  We will share our findings in future articles.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. Readers interested in learning more about this research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its bulletins here.

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

Woman Files Civil Rights Lawsuit Over Denial of Pain Treatment

By Madora Pennington, PNN Columnist

In September of 2022, millions watched Tara Rule’s emotional video on TikTok, about a doctor who refused to give her a non-narcotic pain medication because it might cause birth defects. The doctor would not even name the drug, even though Rule told him she has no intention of having children because she has Ehler's Danlos syndrome (EDS), a genetic disorder that causes severe health issues.

The 32-year old Rule recently filed a civil rights lawsuit to better establish the illegality of refusing medical treatment to women simply because they are of childbearing age.

Rule’s fight began when neurologist Jonathan Braiman, MD, steered her away from an effective treatment for her agonizing cluster migraines, a common symptom of EDS. According to Yale Medical School, cluster headaches can hurt more than childbirth.

When Rule realized she was being discriminated against by her doctor, she surreptitiously switched on her cell phone to record their discussion, which is legal in New York state. 

Brainman can be heard in the recording asking Rule intrusive questions about her sex life, while ignoring her answers. Rule explained that she was already on a medication that can cause birth defects -- known as teratogenic drug -- and wasn't well enough to have children anyway.

Brainman patronizingly told her she might change her mind if she were to become pregnant. He recommended that she bring in her boyfriend to consent to any treatment that might cause birth defects. Rule left without getting the pain relief she needed for her migraines.

In the parking lot of Albany Medical Center, where the appointment took place, a distraught and tearful Rule made the video and posted it online. Her raw emotion and disturbing story quickly went viral, not only on social media, but in news stories.

In her lawsuit against Braiman and Albany Medical, Rule alleges she was retaliated against by the hospital system. Rule says she was ejected from an unaffiliated urgent care center because Albany Medical had told other hospitals not to treat her. She believes this was a violation of her medical privacy.  

Rule suspects she was blacklisted by other providers in her area. She tried to make an appointment with another neurologist, but was told she was “not an appropriate patient.” Her primary care provider sent a back-dated letter to Rule and her mother saying he was dismissing them as patients. That doctor gave no valid reason for the patient abandonment.

TARA RULE (TIKTOK)

Rule is on disability and lives on less than $1,000 per month. Being banned as a patient is a real hardship.

“Now I have to go to Connecticut to see physicians in a different hospital system. Or travel three and a half hours to New York City. With hotels and gas, it’s very hard. Some of these specialists outside the state are not fully covered by my insurance,” Rule said.

Traveling is made more complicated because Rule can’t stay just anywhere — she needs accessible hotel rooms. And she is accumulating thousands of dollars in debt.

After posting her video, Rule heard from many other patients who have also been discriminated against by their doctors. She felt motivated to find out what legal remedies existed.

With legal guidance, Rule wrote the civil rights complaint herself in what is known as a “federal question” lawsuit, an action that seeks to clarify a constitutional issue in US federal court. Rule has been advised that the medical care she sought does not fall under “conscience protections,” which allow doctors to refuse treatment on religious or moral grounds.  

In preparation for her lawsuit, Rule obtained her medical and insurance records, to help prove that privacy violations occurred. She discovered she had been billed for services not received, and believes her medical records were forged.

Albany Medical did not respond to a request for comment.

Rule’s lawsuit is potentially precedent-setting. It marks the first federal question case against a medical provider for refusing to provide teratogenic drugs because a woman is of “childbearing age.” Refusing to give routine medical care because a patient might get pregnant is discrimination. Patients cannot be forced into unnecessary restraints on their care.

"I am prepared for whatever happens,” says Rule, who is hopeful her lawsuit will help prevent other patients from being discriminated against by their doctors. 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

The Inside Story of Elvis Presley’s Death

By Donna Gregory Burch

When Elvis Presley first hit the music scene during the 1950s, he was both beloved and vilified for the hip-thrusting, leg-shaking and gyrating that changed the art form of musical performance forever.

But what many don’t realize is that Presley’s ability to do those iconic dance moves came with a cost and may have actually contributed to his sudden death in 1977 at the age of 42.

In a new book entitled “The Strange Medical Saga of Elvis Presley,” Dr. Forest Tennant, a retired physician who specialized in pain medicine and addiction treatment, explores the fascinating medical history of Elvis.

Turns out, it wasn’t all those peanut butter, banana and bacon sandwiches that killed him. But what did?

I recently had a chance to interview Tennant about his latest book and what really caused Elvis’ death.  

Donna Gregory Burch: When I think about Elvis’ death, I recall the rumors that he died while taking a bowel movement on the toilet and that his autopsy revealed a very full colon. Are either of those stories actually true?

Forest Tennant: Yes, they are. We knew about these events [surrounding his death], but we had no scientific or medical explanation as to why they occurred. Fifty years after he dies, we finally have a scientific explanation as to why he died like he did.

What happened to him and why he died so suddenly in the bathroom was … a medical controversy that … ended up in a criminal trial and with all kinds of emotionalism.

Nothing happened to Elvis Presley that we don't have a good logical, scientific explanation for now. But certainly back in those days we didn't.  

You were involved in a court proceeding about Elvis’ death. Could you tell me about that and what role you served during the lawsuit?

Well, what happened was that because he died suddenly and because the pathologists couldn't agree on why he died, and because Elvis was found to be abusing drugs as well as being prescribed a lot of drugs, a criminal trial was brought against his physician (Dr. George Nichopoulos).

The attorney that decided to defend (Nichopoulos) was a man by the name of James Neal, who was a federal prosecutor who prosecuted Jimmy Hoffa and the offenders in the Watergate scandal, and so he was the nation's top attorney at that time. He investigated the case and found out that the doctor that treated Elvis Presley was not a criminal at all and was doing his best to help him.

Some dozen physicians at the Baptist hospital in Memphis saw Elvis Presley, but nobody knew what was the matter with him. They knew he had some kind of mysterious, systemic disease, which is a disease that can affect multiple organs at the same time.

He was a baffling medical case for the doctors in Memphis at that time, and we didn't know what he had up until about three or four years ago. We did not understand the genetic collagen connective tissue disorders, now usually referred to by doctors as Ehlers Danlos syndrome (EDS). Nobody understood that his glaucoma and his colon [issues] were connected [due to EDS]. They knew it was connected somehow but they didn't have an explanation for it at that time.

What do we know today about why Elvis died that we could not explain back when he actually passed away?

He had a severe heart problem.

Elvis’ heart problem was directly tied to his diet, right? I mean he was well-known for his fat and sugar-laden diet.

Yes, his diet was part of it, but his autoimmunity also affected his heart.

But the major controversy of the day is one that's maybe a little hard for the public to understand. A drug overdose in 1977 was said to only occur if the lungs filled up with fluid. He had no fluid in his lungs, so the only thing that he had at his autopsy of any significance was a huge heart. And so the pathologist and the county medical examiner said he had to have died of a heart attack because his heart was so bad.

The catch was that he had about 11 drugs in his bloodstream. The highest level was codeine, so there became a dispute among the doctors. A certain group of pathologists who were highly qualified said he died of a heart problem. Another group of highly qualified physicians who were called forensic pathologists said no, he died of his drugs. Up until about two or three or four years ago, the argument was still going on.

Now, I hate to say thanks to the opioid crisis, but because of the overdose deaths that have occurred in recent years, a lot of studies have been done, and enzymes have been discovered, and metabolism has been discovered showing that drugs like codeine can cause a certain heart stoppage without having pulmonary edema (fluid filling the lungs].

It turns out that 24 hours before he died, a dentist gave him codeine. He was already thought to be allergic to it anyway, and that was because he had all these metabolic defects due to his genetics, and so the codeine built up in his system. He had this terrible heart, so he died suddenly, within seconds, as he was trying to sit on the commode. He fell forward.

There is a forensic pathologist, the best one of the day, called Dr. Joseph Davis, and in about 1997, he described exactly, second by second, what happened to Elvis in the bathroom. But the cause is pretty clear: He took the codeine, and it caused a cardiac arrhythmia. If he had a good heart, he might have survived, but he had a bad heart.

So, it’s really a combination. You had these two sides of doctors arguing – they even ended up in a criminal trial – but it turns out that they were both right. It was a combination of a terrible heart and a drug that causes cardiac arrhythmia, and that's why he died with no pulmonary edema.

So many times in the medical community, we always look for that one cause, right? His case is very illustrative. Because the body is so complex, it's often multiple factors that are causing health issues.

Elvis Presley had multiple diseases. He was terribly ill, and he died accidentally in some ways with a dentist giving him codeine for his bad tooth, and his bad teeth were also part of the same disease that gave him a bad colon and a bad eye and a bad liver. They were all connected.

EDS is what connects all of those health problems, correct?

Yes, scientifically, EDS is a genetic connective tissue collagen disorder, and what that means is that you are genetically predetermined to have your collagen in certain tissues either disappear or deteriorate or become defective, and to put it bluntly, you can have a rectal problem and an eye problem at the same time due to the same cause because your collagen is deteriorating in these tissues, and you were programmed to develop this when you are born. It is a major cause of the intractable pain syndrome.

Now some of the diseases are very mild. You have a little double jointedness, and your skin is a little lax, and you might develop some arthritis, but you become a good gymnast in the Olympics or you become a good football player in some of the mild cases. But if you get a severe case like Elvis Presley, your life is going to be very miserable, and you're going to die young unless you get vigorous treatments, which are being developed right now.

I don't think EDS was even recognized back when Elvis was living, was it? It wasn't even a known diagnosis. Not many people even know about it today.

No, Dr. Peter Beighton didn't even come up with the (diagnostic screening tool for EDS) until long after Elvis Presley died.

As amazing as it may seem, I'm the only person in the United States who had the autopsies of both Elvis Presley and [aviator and businessman] Howard Hughes and their medical records, and was able to interview their physicians who took care of them. So I felt obligated to put these into books. I don't care whether anybody buys the books or not, but I do think these cases are marvelous cases, and I think these are icons and heroes of the last century, and somebody needed to write it down, and I'm the only one who had the material.

And you know something? For 50 years nobody cared that I had them. Maybe they still don't, but I've got them in the books now, so it'll be recorded for posterity, and that was my goal … to make sure that history is recorded.

Was EDS responsible for the way Elvis was able to move and dance?

Yes, we've got some pictures in the book, and I think we put the question in there. Can you hold these positions and sing and hold a microphone at the same time? And of course, [most people] can't. [EDS was] why he was able to do those things.

But on the other hand, we [recently had] the Olympics, and some of those Olympic [athletes] couldn't possibly do this if they didn't have these hypermobile joints. Whether they will develop the disease in later life is unknown.

When you're young, and you have these joints that are hyperextended, you can do things that other people can't do.

In your recent book about Howard Hughes’ medical issues, you had written about how Hughes was still very successful in life despite the fact he was in an enormous amount of chronic pain due to his medical conditions. Elvis was in the same predicament, wasn’t he?

Very much so, and I'm hoping that people who have intractable pain syndrome, who have EDS, complex regional pain syndrome, autoimmune diseases and traumatic brain injuries, read these books or at least hear about the books, and get some hope and realize that here are two men who did great things in very disparate fields but were terribly ill. I've had many, many patients who read about Howard Hughes tell me that he was an inspiration to them.

Elvis was in a great deal of chronic pain as a result of his EDS. Is that what led to his addiction to opioids?

Yes, we will never quite know how much of the drug taking that Elvis was doing was him self-treating his medical condition and how much of it was just abuse, but that's just the way it is. You can't quantitate it.

I was actually asked to deal with both of these cases because, back in the 1970s, I was trying to deal with patients who appeared to abuse opioids and other drugs and also had legitimate pain, and that's how I got involved with these cases.

It's an issue to this day, and society can't deal with it. They just refuse to talk about it, refuse to deal with it. You've got one group of doctors who just want to treat the addiction. You've got another group who just want to treat the pain, but you've really got to treat some of both and have doctors who understand both, but at this point in time, it's not happening.

I would love to see these books bring about some rational discussions about opioids and about pain and addiction, but I don't see it happening. I see nothing but controversy, accusation, falsehoods, fabrications. Society and the media can't seem to have rational discussions anymore about these issues, unfortunately.

I think with all of Elvis’ health issues and his subsequent drug addiction, it was almost like the perfect storm, right? He has EDS that's causing him extreme pain. The doctors give him pain medications to try to remedy that, so he can actually perform on stage, but then he’s still not able to perform up to the standards of his fans because of his addiction to those drugs.

He was really in a damned if you do, damned if you don’t predicament.

Yes. Also, these drugs probably caused him to have a terrible traumatic brain injury. We couldn't document it, but I suspect that's what happened. He did have a terrible traumatic brain injury, which accelerated all his other problems.

Yes. Apparently, he had fallen in a bathroom and had injured his head, and that was part of what was going on with him in the last years of his life as well.

Yes, it sure was. So again as you pointed out, it was the perfect storm. That's exactly what happened.

You know what I think is so interesting about these two books that you've written? We as the public have this view of Howard Hughes that he was a recluse because he was eccentric and that was just part of his personality. But he was actually really suffering a great deal from chronic pain.

And it's the same situation with Elvis. When we think about his death, we think he was just a drug addict who took too many pills one night, fell off the toilet and died, right? But Elvis was also living with extreme pain and suffering, and he was likely just trying to medicate himself out of that misery.

In our research studies, I saw four people yesterday who have EDS as well as spinal canal problems, and they're just miserable. I sometimes don't know how Elvis and Howard Hughes and the people I hear from daily, I don't know how they make it, you know? I marvel at it.

I'm hoping that everybody who's got intractable pain syndrome or EDS or traumatic brain injuries reads these books. That's who they're written for.

Why did you think it was important to write for those audiences?

I think that the audiences that we deal with are terribly neglected in society. I hate to say it, but I think people who have intractable pain are disdained by a great segment of the population. They're ignored by the political structure, neglected by the medical profession. I hate to say it, but the people we deal with, somebody has got to look after them.

My wife and I… we've managed to put together a foundation and use our business successes to try to help people, and I think that's not normal either. My study of the best physicians over time have been doctors who stepped up to the plate for people who needed it because nobody else in society is going to.

I feel sorry for all the groups that have been out lobbying their legislators, their politicians, their medical boards, and they get deaf ears. They get nothing but yes, yes, yes, but then nothing happens. The medical profession we have, it doesn't stand up for people with intractable pain syndrome or EDS, and that is because a huge part of the medical profession is based on treating well people or simple problems.

And so these are people in society who are disdained, neglected and abused, and are put in the corner by huge segments of not only society at large and the government, but also by the medical profession itself.

Yes, I understand exactly what you're saying. I've encountered it myself as a chronic pain patient.

I bet you do.

Any final thoughts?

I have read I don’t know how many books on Howard Hughes and Elvis Presley, and almost all of them are antagonistic. They are hostile. They blame somebody. They are looking for something that's bad, okay?

And I don't know whether it's the authors. I don't know whether it's their publishers. I can't tell you, except I know one thing: In my review of Howard Hughes and Elvis Presley, and like I say, I'm the last person who knew their doctors and had any real contact with their physicians and even the media, I don't see all this negativism.

I think people as a group try to deal with the Elvis affair legitimately, honestly and with care, and the idea that somebody should be blamed, somebody should be bad-mouthed, it's just not there.

These are great stories. They're tragic stories, but I think there are an awful lot of positive, really good things that happened to these men and to people who were around them, so I don't think we're going to get anywhere dealing with some of these issues with just total negativism.

And I think the whole situation, if you read it, is somewhat uplifting and motivating. We are here to try to help our fellow man and women have better lives, and I think there's a lot of that in both of these men.

Donna Gregory Burch was diagnosed with fibromyalgia after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook, Twitter and Pinterest.

All proceeds from sales of “The Strange Medical Saga of Elvis Presley” will go the Tennant Foundation, which gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.

My Undiagnosed ‘Growing Pains’ Nearly Killed Me

By Mikki Ingram, Guest Columnist

When I was a little girl growing up in Oklahoma, I was a tomboy. I played outside constantly no matter the season and was excited to be so close to nature. I did this in spite of frequent sprains, joint dislocations and abnormally bad “growing pains” starting at age three.

To me, those things were normal. I never thought to ask anyone about their own experiences, because my parents never made any fuss. Why should I?

As I grew up, the growing pains never stopped. I remember multiple times, as I was in the throes of puberty and even after, waking up in the middle of the night, crying and rubbing my joints. I had menstrual cramps so bad that I had to miss school. No Tylenol or ibuprofen combination would touch those pains. My dad thought I was being overly sensitive.

MIKKI INGRAM

After my daughter was born in 2003, I became extremely ill. The growing pains that I had come to regard as normal were more extreme than ever. Fatigue also swept over me. I missed the first 6 months of my daughter’s life because I was asleep for most of it.

The pain was consistent, the fatigue more so, and every doctor I went to said the same thing: “You look fine. You’re too young for this.”

I was diagnosed that year with fibromyalgia by a rheumatologist who called it a “diagnosis of convenience.” I was also advised to lose weight, eat better food and that the pain was all in my head. My primary care provider even said I should put my child up for adoption.

After months of plying me with random medications, none of which worked for this pain, I went to a hospital emergency room. The nurse that I saw is a woman I’ll never forget.

She ran an ultrasound on my gallbladder and came back saying, “You have gallstones. There are four of them and one of them is almost one and a half inches wide. You need your gallbladder out. Take these slides to your doctor and get a surgery scheduled.”

I was grateful beyond measure to her. My doctor, however, wasn’t. He didn’t see the need for urgency, so he scheduled my surgery for several months later. Meanwhile, the pain refused to stop. My fat-free diet did nothing and I was in trouble. In the ER of that same hospital, they told me that if I didn’t have the gall bladder out within two days, I’d be dead.

I filed a complaint about the doctor later. Nothing was done and he continued to practice until retirement.

That same provider sent me to a spine doctor. They were trying to figure out if the pain was coming from my back. The doctor said I needed to exercise more and do yoga, and insisted I get corticosteroid injections into my spine. I dutifully obliged the doc, getting multiple injections with no positive result. They only made the pain worse, so much so that we had to beg the doctor to stop scheduling me for them.

In 2018, at the age of 35, I was finally diagnosed with hypermobile-type Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that explained my lifetime of sprains, dislocations and growing pains. I also found out that those “miracle” epidural and corticosteroid injections had further damaged my connective tissues.

That damage occurred when, prior to my EDS diagnosis, I had been given both ciprofloxacin and levaquin antibiotics to treat my chronic sinus infections. Both of those medications weakened my body’s tendons and, four years later, still give me pain. The warning labels on those antibiotics specifically say they are not for people with connective tissue disorders like EDS.

People have looked at me throughout my life and accused me of everything from faking, to lying,to being a hypochondriac. I’ve been told that it’s my weight, accused of taking methamphetamine (due to my near-scurvy levels of vitamin D and having to have all of my teeth removed) and much more, all while being told, in spite of the evidence on my chart, that I am “fine” because I somehow look fine.

When I look at me, I don’t see “fine.” I see a woman who barely sleeps because of excess adrenaline due to EDS. I see a woman who has nearly died due to medical negligence. I see a woman who has permanent nerve damage due to that same negligence. I see a woman who was used by many providers as a guinea pig for their pet projects to prove that I really was “fine.”

I see a woman who now suffers from severe post-traumatic stress syndrome, as well as Impostor syndrome, due to all the times she was called a liar in spite of mountains of evidence to the contrary. I see a woman who survived in spite of it all.

Most of all, I see a woman who fights to be treated like a person with a chronic condition, multiple comorbidities and intractable pain, instead of a person who is actually “fine.” But, maybe that’s just me. 

Mikki Ingram lives in New Mexico. Mikki is a proud supporter of the Ehlers- Danlos Society.

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

Finding Pain Relief in a Virtual World

By Madora Pennington, PNN Columnist

I am sitting on a deserted beach in Tasmania, listening to the gently lapping waves. All my worries fade in just 3 minutes.

While on my couch, I am touring the famous sites of London. Have I been on vacation? I feel as if I have.

I am by a creek in Bavaria. Water gently crashes against the rocks. Leaves fall to the ground. In four minutes, I am in state of joy.

Underwater with a school of dolphins, twisting my head to get the best views as they swim above me and all around, I forget anything that bothers me, physical or mental.

How can I be in so many places? I am using a virtual reality program designed to relieve chronic pain. I love it. I look forward to doing it every day.

Later, when I am out and about, a sound I heard during my VR sessions, perhaps the swaying of a tree, makes my body relax without effort.

The AppliedVR headset I am using looks like a blacked-out snorkeling mask. It came with a warning not to expose it to direct sunlight, and to take great care not to scratch the lenses. The company loaned me the device to try at no cost and with no stipulations for this review.

Virtual reality (VR) had its start as entertainment in video gaming. Headsets have speakers or earphones, and are usually connected to a joystick or hand controller. When the user moves their head, tracking software shifts the images, providing an immersive experience into a full 360-degree view of a 3D world.

Besides gaming, VR has a growing number of practical uses. VR technology is used to teach dangerous jobs like piloting or to give doctors simulated practice at surgery. The U.S. military uses VR to train soldiers to fight and build mental resilience for battle. Ford employees use VR to inspect and look for problems in virtual automobiles before they are even manufactured. Architects and engineers use it to evaluate and find problems in their design work.

In a medical setting, VR therapy was first used in caring for patients who suffered burn wounds, which can be so painful that even opioids can be insufficient. A study found that VR, when coupled with pain medication, provided burn patients with significant relief.

More Than Just Distraction

How does VR make such a difference in pain?

“The most acceptable theory is the Gate theory of attention. It postulates that VR reduces the perception of pain by absorbing and diverting attention away from pain,” says Dr. Medhat Mikhael, a pain management specialist.

But there’s more to it. Dr. Brennan Spiegel, director of Cedars-Sinai's Health Service Research, completed a VR study on 120 hospitalized patients in 2019, which showed that VR significantly reduces pain. It was most effective for severe pain.

“Virtual reality is a mind-body treatment that is based in real science. It does more than just distract the mind from pain, but also helps to block pain signals from reaching the brain, offering a drug-free supplement to traditional pain management," Spiegel said.

Short-term, acute pain is a different beast than chronic pain. Only a few studies have been done using VR to treat chronic pain, which can overwhelm the nervous system, making the body even more sensitive to and aware of pain. This cycle can become so entrenched it can cause the body to interpret benign stimuli, such as the light brush of fabric against skin, as painful.

Early studies on VR for chronic pain are promising. In a study published in 2016, chronic pain patients had an average 60% reduction in pain from VR treatment. A third of the participants experienced total pain relief while doing VR sessions. They had a wide variety of conditions, such as spine pain, hip pain, myalgia, connective tissue disease, interstitial cystitis, chest pain, shoulder pain, abdominal pain and neuropathy. 

Another study recently found that VR reduces pain and improves mood and sleep in people living with fibromyalgia or chronic lower back pain.  

Pain Drifts Away

I’ve had a lifetime of chronic pain from the collagen disease, Ehlers-Danlos Syndrome. My body is very weak and flimsy. Having chronic pain and disability sometimes makes me feel resentful and betrayed by my own body.

In one VR session, I stare into the heavens. I am shown a projection of a human body and nervous system. A kind, encouraging woman explains simply and compassionately the phenomenon of pain. I hate my body less in two minutes.

Ordinarily, I would never play a video game. I don’t like cartoons. Meditating makes me anxious. I find it difficult to even lose myself watching a movie. I would not have thought I would respond well to virtual reality. But from the first brief session, I did.

I learned how to calm and balance my nervous system in an animated forest. Gently encouraged to breathe in time with a giant whimsical tree, the ground and surrounding plants change, becoming ever more colorful each time I exhale. The loving woman tells me I have changed myself and the outside world. I have to agree.

Some sessions are games that teach me to redirect my attention away from pain. In a cartoon winter wonderland, I shoot snowballs at happy teddy bears, who giggle when I hit them. I have made the teddy bears and myself happy.

In others programs, I swim with jellyfish. Or sunbathe on a beach in Australia. Or sit by a stream in the snowfall. You can watch a sample of these programs below.

The benefits of VR therapy continued for me after the sessions ended. When pain or panic about pain began to set in, I found it drifts away rather than latching onto me like it used to.

After a couple weeks of VR, during a visit to physical therapist, I noticed I was no longer afraid of her touching my neck and back, and actually enjoyed it.

VR reminds me of times in my life when I was fully engaged in the moment and overwhelmed by wonder or beauty. As a child swimming in the ocean, once I was surrounded by dolphins. They clicked and called to each other. I immediately forgot how cold I was and how my wet-suit was cutting off the circulation in my hands.

VR took me back to other transcendent moments of my life, like playing in an orchestra, surrounded by instruments producing layers of organized sound. Standing in front of Van Gogh’s Bedroom. A ride at Disneyland. Falling in love.

My only criticism of VR is the weight of the headset. The device is heavy and could be difficult for someone with neck or head pain to tolerate.

AppliedVR’s technology is being used in hundreds of hospitals, but it is not yet available for home use. The company hopes for a broader launch in 2021, but getting insurance coverage will be key.

"We know that living with and managing chronic pain can be a debilitating and costly challenge that is only exacerbated by the COVID crisis.  As such, we are focused on achieving our vision of delivering safe and effective VR therapeutics into the home where the need for non-opioid chronic pain treatment options is greatest,” says AppliedVR CEO Matthew Stoudt.

“We are now focused on partnering with payers to demonstrate how our chronic pain VR therapeutic improves health outcomes, reduces costs and empowers patients to lead their best lives.  This is the key to making VR a reimbursable standard of care for pain management."

In addition to pain, VR therapy is also being used to relax people going through dental procedures, chemotherapy, physical rehabilitation, phobias, anxiety and post-traumatic stress disorder (PTSD).

You cannot talk your brain out of perceiving pain, but with VR it finds other, better things to do than just focus on pain. Cognitive behavioral therapy and self-soothing techniques do that too, but VR disengaged my brain from the pain perception cycle at a much deeper level, just as pain once hijacked my thoughts and attention.

Madora Pennington writes about Ehlers-Danlos Syndrome and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Tennant Foundation Launches Intractable Pain Research and Education Project

By Pat Anson, PNN Editor

One of the pioneers of pain management in the United States is hoping to draw more attention to intractable pain and how it differs from chronic pain. While chronic pain lasts for 90 days or more, intractable pain can persist for years, decades or even a lifetime. Many doctors fail to distinguish between the two, which leads to gaps in diagnosis and treatment.

“The pain field has been woefully negligent about this. They talk about symptomatic treatment of what to do to relieve chronic pain, but in order to deal with intractable pain syndrome you’ve got to treat the underlying cause,” says Dr. Forest Tennant, whose foundation has just released a new report called “The Intractable Pain Syndrome: A Call for Recognition and Prevention.”

“We’ve worked on it for quite some time with the goal of having every patient, doctor, nurse and family understand it. And to try and bring things out in language that is understandable by everybody.”

“This was a labor of love for all of us, born from a sincere desire to bring recognition, treatment and prevention to this devastating syndrome,” says co-author Ingrid Hollis, whose son was treated by Tennant for Arachnoiditis and Ehlers-Danlos Syndrome. “We have learned so much through the years, and I believe there is much that can be done to prevent intractable pain syndrome from developing and progressing when it occurs.”

“One of the reasons we’re doing this is to call for early recognition and vigorous treatment,” Tennant told PNN. “Someone who has this for two, five or twenty years, you can’t expect much reversal. But those people who have these conditions for six months or a year, they have a great ability to reverse a great deal of this. The earlier the treatment, the better the outcome.”

Left untreated, Tennant says intractable pain syndrome (IPS) can lead to chronic inflammation in the central nervous system that is difficult to reverse.  The inflammation not only causes constant pain, it leads to loss of brain tissue and creates dysfunction in the neurologic, cardiovascular, hormone and immune systems.  

“We’ve known for centuries that a painful injury will create what amounts to electricity. And too much electricity causes inflammation and inflammation causes tissue destruction,” says Tennant. “Intractable pain syndrome does change their basic physiology by virtue of altering physically the neurotransmitter systems that are in the brain and spinal cord. That is really the difference. And this is very objective. It’s measurable. It’s visible. It’s clear when its present.”

Tennant says these “pockets” of inflammation can be seen on MRI’s and brain scans. Someone suffering from simple chronic pain won’t have them, but people with intractable pain will.

There are five basic conditions that can cause IPS:

1. Arachnoiditis, a chronic inflammation of spinal nerves

2. Genetic connective tissue/collagen disorders such as Ehlers-Danlos Syndrome (EDS)

3. Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS)

4. Brain injuries caused by strokes or head trauma

5. Serious end-stage osteoarthritis of the spine, hips, knees or feet.

Other possible causes of IPS are porphyria, sickle cell disease, Lyme disease, interstitial cystitis, and some rare genetic disorders.   

IPS Can Be Reversed

Long recognized as incurable, Tennant says intractable pain can be reversed if diagnosed and treated early. He has pioneered some new treatments for IPS, including hormone supplements, physical therapy and better nutrition.

“Our project hopes to educate people about what they can do to reverse a lot of this,” Tennant told PNN. “Step number one is you’ve got to have vigorous treatment of the underlying cause of pain. The arachnoiditis has to be treated. The arthritis has to be treated. The RSD has to be treated. In other words, vigorous treatment of the underlying condition.

“Step number two, there are specific things they can do to slow down the inflammation inside the central nervous system. We know the body makes hormones inside the brain and spinal cord that can reduce the inflammation inside the central nervous system and regrow some of the tissue that’s been lost. People say you can’t do that, but oh yes, you can. There are studies that show this and we see this clinically.”

“I strongly believe that Dr. Tennant's concept of how intractable pain develops and progresses is absolutely correct.  His work in identifying the causes, developing diagnostic criteria, and figuring out a treatment protocol provides what doctors need to know to help people with intractable pain,” says co-author Kristen Ogden, whose husband Louis was treated by Tennant for a complex autoimmune condition.

“Louis' treatment with Dr. Tennant allowed him to improve so much in so many ways. Very effective pain control, greatly improved function and the best quality of life he ever had as an adult.  I am sure that very few people have any idea at all how much a seriously ill pain patient can improve and even regain lost function and capabilities if they have the right medical regimen that meets their needs.”

Tennant retired from clinical practice in 2018, the year after his home and office were raided by the DEA as part of an investigation into his opioid prescribing. No charges were ever filed against him. While Tennant no longer sees patients, he is continuing his research into the treatment of IPS – which notably downplays the use of opioids.

“The answer to opioid use is treating the syndrome rather than just giving symptomatic relief. Opioids are symptomatic drugs,” explains Tennant. “What we’re saying is, identify this and try to treat the condition. Don’t just throw a bunch of symptomatic antidepressants, opioids and other interventions at it. Start trying to look at it physiologically and pathologically, and treat it like we do other syndromes.”    

To learn more about the Tennant Foundation’s Intractable Pain Syndrome Research and Education Project, click here. 

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Low Dose Naltrexone Saved Me from a Lifetime of Pain

By Madora Pennington, PNN Columnist

The first place I felt a ripping pain in my body was in my feet, when I was 14 and growing fast. But that’s only because I don’t remember the severe abdominal hernias I was born with. They probably felt the same. After I screamed for the first two months of life, a surgeon repaired them. I still have the scars.

In adolescence, very soon after my feet began to fail me, I was distracted by the snapping of my kneecaps. More trouble walking. Next came the low back aching. Carrying my schoolbooks and sitting in class became unbearable.

My merry-go-round of symptoms could have driven me mad, I suppose, but I was overtaken with such debilitating fatigue, I did not have the energy for big emotional reactions. My clique of junior high friends were agony, isolation and loneliness that I was too tired to accept or reject.

Then my abdomen herniated again. That pain was drowned out by everything else, to be repaired years later when surrounding tissue got caught in it, requiring an emergency operation.

In spite of exhaustive doctor visits throughout my life, no one gave a me a name for what was wrong with me until I was 33: Ehlers-Danlos Syndrome (EDS). Ah, so that’s what the other kids had that I lacked: stable collagen. My life began to make sense.

EDS was named for the doctors who first noted it in the medical literature. If it had been assigned a descriptive name, it would be called Contortionist Syndrome.

If I had joined the circus, my job would have been freaky back bender. My spine is impressively loose and a particular source of torture. I spent the last half of my 20’s begging for a guillotine to make the pain in my neck and head stop. No one obliged. Rib dislocations have been another problem. Is this what it feels like to get stabbed in prison? I am in prison in my body, so that would be consistent.

Before you feel too sorry for me, or recoil in horror that a human could be born so flimsy, note that my story has a happy ending. By the end of my 30’s, I got experimental treatment that made my body produce better collagen, strong enough to end my life of disability and begin a new one, functioning in the world.

Pain Changes the Brain

It was one thing to have a more stable body, but I still had a problem. Pain creates a disease state of its own. I had been in chronic pain for about 25 years.

Pain signals danger to the body: Do something because you are getting hurt! But what happens when the pain never stops or cannot be adequately relieved? The more a brain experiences pain, the better it gets at experiencing it. That is how brains are. They get good at what they practice.

Ongoing, unrelieved pain causes a downward spiral of maladaptive changes. Chronic pain triggers fatigue and depression. Sufferers tend to avoid activity, often quite legitimately, out of fear of injury or pain aggravation. Chronic pain also seems to induce troublesome changes in learning, memory, and body perception that are similar to emotional disorders. As pain changes the brain, sufferers are likely to feel less motivated and become less able to initiate or complete goals.

These brain changes are real. Researchers have noted widespread abnormalities in the brain, such as “grey matter density, in the connectivity of the white matter, as well as in glutamate, opioid and dopamine neurotransmission.”

How Naltrexone Works

One promising treatment for disrupting and rehabilitating the vicious cycle of chronic pain is an off-label use of an old drug: Naltrexone. Naltrexone treats opioid addiction by blocking the opioid receptors so drugs like heroin cannot take effect.

However, given at much smaller doses, naltrexone blocks the opioid receptors only slightly. This creates a stimulating, re-regulating effect The result: relief and even healing. Even better news, naltrexone is one of the safest drugs around.

How does low dose naltrexone (LDN) have such a profound effect? Opioid receptors are not just in the brain, they are spread throughout the body in the guts, blood, joints, skin and nerves. The hypothalamus and adrenal glands produce hormones with opioid-like effects, creating a complex hormonal feedback system that governs everything from immunity, pleasure and pain, to how connected we feel to others. Naltrexone in low doses gently interrupts these inter-body communications, which can cause a cascade of healing.

Dr. Linda Bluestein is a pain doctor at Wisconsin Integrative Pain Specialists and host of the Bendy Bodies podcast. She often prescribes low dose naltrexone for her chronic pain patients.

“LDN acts on microglial cells and is a novel CNS anti-inflammatory agent,” says Dr. Bluestein, adding that LDN works well not only on persistent pain (fibromyalgia, complex regional pain syndrome, migraine, irritable bowel syndrome, etc.), but also for autoimmune diseases, inflammatory conditions, neuropathic pain, chronic fatigue syndrome and myalgic encephalomyelitis.

“Results are very positive. Many patients get outstanding pain relief. The remainder get moderate pain relief,” said Bluestein. “Some don't really observe much pain relief but want to continue taking the medication because the incidence of infections is lowered. This is because naltrexone given in low doses (1.5 to 4.5 mg) can act as an immunomodulator benefiting both autoimmune diseases and immune function.”

As for side-effects, Dr. Bluestein notes that a patient must be off opioids to take LDN.

“The most common side-effect is vivid dreams. Occasionally a patient will have GI issues, abdominal pain, or even more rarely, loose stools. Cost is sometimes a barrier as insurance rarely covers LDN. Access is another occasional barrier as it must be obtained from a compounding pharmacy,” she explained.

Back to my story, my life of pain interrupted. I have been taking low dose naltrexone for years now. In spite of healthier connective tissue, pain had ravaged me. LDN went far to undo that. Results took time, but were well worth the wait. I would say LDN gave me my personality back, which chronic pain (and also long-term opioids) had altered.

As someone with Ehlers-Danlos, my body is overly-sensitive and overly-perceptive. Activity that is moderate, normal, and completely safe can cause alarm bells of injury and trauma to my brain, even though I am not actually injured.

Why this happens with EDS is not understood, but in my experience, LDN keeps this phenomena from becoming a downward spiral of more pain, depression, fatigue and dysfunction.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Can Vitamin C Treat COVID-19?

By Madora Pennington, PNN Columnist

Viral infections like COVID-19 are difficult to treat. Unless and until a targeted anti-viral drug or vaccine is developed, symptomatic support is what is given to patients to ease suffering and prolong life -- until their own body hopefully defeats the coronavirus.

While most coronavirus infections are mild or even lack symptoms, to vulnerable patients they can be devastating. The virus can infect various organs, including the brain, lungs and nervous system, which leads to a cascading response of damaging inflammation. Patients can die from respiratory failure or septic shock, ironically caused by an over-reaction of their own immune system battling the virus.

One adjunctive therapy that emerged from the desperation to save patients in Wuhan, China is intravenous ascorbic acid. Yes, that is Vitamin C. A placebo-controlled study has begun in Wuhan to determine if Vitamin C infusions are helpful in treating 140 patients with coronavirus pneumonia. A similar clinical study is underway in Italy.

Doctors in New York are currently administering Vitamin C intravenously to coronavirus patients in large doses that are well above the recommended daily dose.

"I have to hope that this, or any new idea, may help," Peter McCaffery, Professor of Biochemistry at the University of Aberdeen in the UK, told Newsweek.  

"Just to reiterate though, taking large doses of Vitamin C tablets would be very unlikely to protect you from COVID-19 -- unless you were actually Vitamin C deficient, which with a normal diet is quite rare."

McCaffery says Vitamin C is relatively safe because, unlike many other vitamins, it does not build up to toxic levels. The worst side-effect is a potential kidney stone. Large amounts of C taken orally can also upset the stomach.

Previous studies have found that Vitamin C can help prevent death from the deadly complication of sepsis. Scientists believe Vitamin C stops the surge of immune cells that lead to lung destruction and helps reduce fluid buildup in the lungs. Vitamin C helps modulate the immune system, meaning it helps the immune system function properly, not over-reacting and not under-reacting. It also has antiviral properties.

Important for Overall Health

Vitamin C is critical for the maintenance of body functions and normal physiology. It helps the body maintain homeostasis -- the constant adjustments the body makes to keep conditions stable. For example, when a person eats and experiences a rise in glucose, insulin is produced to bring sugar levels down to normal. A breakdown in the body’s ability to maintain homeostasis is what leads to diabetes.

Vitamin C is essential for the formation of collagen, which is everywhere in the human body, gluing everything together. It is necessary for wound healing.

Vitamin C also supports the development of neurons and plays a role in learning and memory. Studies have shown that people with higher concentrations of Vitamin C are more cognitively intact compared to cognitively impaired individuals.

Some studies have shown Vitamin C can shorten the length of a cold, prevent it entirely under certain circumstances, and also reduce flu symptoms. But more research is needed in this area because findings have been mixed. Scientists suspect inconsistent results may be due to the variability of an individual’s ability to absorb Vitamin C and handle oxidative stress.

Some people need more Vitamin C than others to achieve healthy levels of ascorbic acid. Oxidative processes are especially altered in patients with obesity, cancer, neurodegenerative diseases, hypertension and autoimmune diseases. Lower concentrations of Vitamin C are also found in patients with metabolic syndrome.

Nearly all mammals manufacture their own Vitamin C when they are ill or injured. But chimpanzees and humans have a broken copy of the C manufacturing gene. We must obtain ours from food.

During the Age of Sail, a disease of profound Vitamin C deficiency — scurvy — killed an estimated 2 million sailors. At the time, no one knew Vitamin C was such a vital nutrient. Ships set sail on long voyages without enough food that contained it.

Scurvy was a terrible disease and a terrible way to die. Initially overcome with severe fatigue and weakness, sailors became unable to think or work. This created suspicion that laziness itself caused this mysterious disease.

As the body became more and more depleted of Vitamin C, healed fractures re-broke. Old wounds reopened and bled. Bruises formed at the slightest touch. Gums bled and teeth fell out. Joints ached. Flesh turned black and gangrenous. Fatal aortic ruptures or brain bleeding came on suddenly. Scurvy this severe is rarely seen in the modern world.

My interest in Vitamin C is very personal. I have an inherited collagen disorder called Ehlers-Danlos Syndrome (EDS), a poorly understood disease. Vitamin C loading is recommended for my condition, as many of my symptoms are similar to scurvy.

My doctor and I discovered I benefit exponentially from injecting Vitamin C, rather than taking it orally. Why is a mystery. For those interested in oral supplementation, liposomal C is the best choice.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Treating Chronic Pain With Lasers

By Madora Pennington, PNN Columnist

Months after surgery for my badly broken foot, the last scab finally fell off, revealing to my horror that the surgical incision had not closed. I have Ehlers-Danlos Syndrome (EDS), a genetic condition that prevents my body from building proper collagen. Poor wound healing is a common complication for people like me. 

A search for a treatment that would help led me to Dr. Harold Kraft, a Southern California anesthesiologist who has built an entire practice around using high-powered lasers. Kraft’s main focus is pain --- from sciatica and back pain to neuropathy, neuralgia and myalgia, as well as post-surgical pain and soft tissue injuries. 

Another thing lasers do is facilitate wound healing. After a few appointments, my wound closed but appeared fragile and Frankenstein-looking. With more treatments, it rapidly filled in, coming to look smooth, strong and, surprisingly, pretty.

I was eager to try laser for my Ehlers-Danlos aches as well. My strange body seems to sustain soft-tissue injuries from the ordinary tasks of life, draining my energy and taxing my nervous system. From the laser treatments, I experienced relief I had never before felt.

Kraft has learned a lot from administering over 20,000 treatments on patients. He noticed Ehlers-Danlos patients got exceptional pain relief from the laser treatments, and came to find that nearly all are super-responders.

“About 90% of EDS patients respond to laser treatment, and get faster and more profound pain relief than typical patients,” Kraft notes.

Light Amplification

The word “laser" is an acronym for Light Amplification by the Stimulated Emission of Radiation. No longer limited to science fiction movies, lasers are now a part of everyday life. You’ve probably seen lasers used as pointers during presentations, as bar code scanners, and in DVD players. In medicine, lasers can be used for precision cutting, such as in LASIK vision surgery or for excising a tumor. For cosmetic purposes, a laser can improve skin imperfections or whiten teeth.

Light particles, or photons, from the laser pass through the skin and stimulate the cells’ mitochondria to release anti-inflammatory modulators, nerve and vascular growth factor. This causes healing and repair.

Kraft came to having a pain practice late in life. He had retired from a long career of performing anesthesia during surgery and left medicine entirely for the business world, developing software for data aggregation. All that changed when his wife took their long-suffering pug for a new treatment.

Harley, a most beloved dog, had trouble walking. He had not benefited from joint supporting supplements like glucosamine and chondroitin, nor acupuncture and doggie physical therapy. But after four treatments of high dose laser from a veterinarian, Harley could walk again. The Kraft’s were elated and also intrigued.

Kraft convinced a family friend who had back pain to see that same veterinarian for lasering, even though she is a human. Like Harley, she found pain relief.

Seeing the promise of what this could offer, Kraft began training in laser techniques and got laser machines of his own. He went back to practicing medicine, treating pain exclusively with lasers. Kraft uses Class IV lasers, which are the most powerful available. He employs them at high doses, in order to do the most good for patients. Great care must be taken in this endeavor.

“The more power you use, the more care you need to operate and the more likely that misapplication can cause harm,” Kraft says. “There is no discomfort during treatment, although the patient may feel the heat from the laser. It is powerful, non-invasive, and the results can be permanent or long-lasting.”

Kraft says about 7 out of 10 patients get significant improvement, including chronic pain sufferers who failed at other treatments. Genetics seem to play a factor in how well a patient responds. Some are just faster than others. A small percentage respond immediately. Most experience benefit between 4 and 10 treatments, and only about 30% do not respond after 14 or so treatments.

What does the science say about laser therapy? While there isn’t an abundance of research on the healing power of Class IV laser, some exist and are worth noting:

• A small study in the Journal of Athletic Training concluded that Class IV laser therapy is “an effective treatment modality to increase blood flow in the soft tissues” to promote healing.

• A pilot study assessed Class IV laser therapy for postoperative pain in 100 patients who had coronary bypass surgery, and found it to be effective.

• A double-blind study of tendonitis caused by repetitive-motion found Class IV laser treatments gave long-term relief with no adverse effects.

• Another double-blind study on 38 women with fibromyalgia showed that Class IV laser therapy improves pain, upper body range of motion, and quality of life. 

Chronic and acute pain are notoriously difficult to treat, especially in an era when fewer doctors are willing to treat pain or prescribe opioid medication. Pain patients have fewer options.

Dr. Kraft imagines a world where patients will have easy access to laser therapy at their primary care doctor or physical therapist. In addition to running his busy practice, Dr. Kraft has invented an improved laser, one that would optimize treatment regimen. He hopes to have it to market in two years.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

How to Survive Self-Isolation From Coronavirus

By Madora Pennington, PNN Columnist

Like much of the world, I am self-isolating to slow down the spread of the coronavirus. As a medically fragile person, I am afraid. My immunity is poor. I get frequent lung infections and I get them fast, without warning. Would I get a bad case of Covid-19?

I can imagine my death in the ICU, without family, on a ventilator, under protective gear. It’s easy for me to reconcile myself to this possibility, even accept it. I was born with Ehlers-Danlos syndrome, which prevents the body from making proper collagen and causes a host of other health problems.

I am an expert at homebound isolation. I did it for many years, too sick and in too much pain to function. My only job was to survive another day of agony and not lose my mind. Seven years ago, experimental treatment overturned my life sentence of pain and I was freed from my prison of disability.

I sheepishly admit isolating myself from the coronavirus is a lot more fun. This time, I am not sick. Even better, I am not alone. We’re all in this together.

My old life was awful, but it was simple. I had a schedule with targets to accomplish, which may seem laughable to someone who has not experienced prolonged severe illness. Shower, water a plant, unload the dishwasher.

I awoke in the morning, feeling lucky if I got a good chunk of sleep, and resentful if I did not. My spine was so fragile, the pain of laying down on my bed led to torturous spasms. I took morphine, Vicodin and carisoprodol in hopes of falling asleep before the pain hit and hoping to stay asleep after it did. The drugs worked about half the time.

My husband was careful not to wake me as he got ready for work. Up alone, swimming slowly through the thick liquid of my morphine hangover, I faced my favorite part of the day: the bitter warmth of coffee and a view of the city.

In my old life, I lived for simple pleasures because that was all I had. Food was one of them. Cooking dinner every night. Brunches on the weekend. I felt deep appreciation for the times when my pain or my brain fog wasn’t so bad, the times when I had a little energy. I dreamed that one day I might get better.

This was before Facebook, before podcasts, before medical information was freely available on the internet. Life was lonely then, but we didn’t know anything else. We kept my struggles private. No one except my doctor knew how sick I was. That gave me a sense of dignity, as a genetic disorder is so difficult to explain. Better not to, I thought. Besides, the hopelessness brings other people down, and that’s just impolite.

We lived in a one-bedroom apartment because I didn’t have the strength to get around anything bigger. I made the bed. I took walks every day. I fought to take care of as many of the household chores as I could. There was something monastic, perhaps even spiritual about my old life, a life where I spent most of my time alone.

When I got better and exited my sickbed, my life became unbearably complicated. Drug withdrawal, integration into the world, working and building a life. I was, I shamefully admit, deeply depressed. Adjustment Disorder is an emotional disturbance one goes through while adapting to the stress of significant life changes.

Stay On a Schedule

It’s been an easy transition to coronavirus self-isolation. I remember what worked from my old homebound life. Be on a schedule. Every day do this, and then that. Shifting from one task to another makes the day seem fuller. I like to lift some weights when I get stuck writing. Or maybe scrub the kitchen sink. Jump up and fold the laundry. Reorganize something, even if it’s just one drawer, for a quick sense of satisfaction.

Commit to regular meals, as opposed to all day snacking, so you won’t go back to work with clothes that don’t fit. Get sunlight on your face, as early in the day as possible. I hope you have trees or grass or sky to enjoy. They positively affect mood.

Make your bed and stay out of your bedroom. Sleep is a conditioned response. If you lay in bed while reading or watching TV, you send your brain confusing signals about when sleep time is supposed to be. Bedtime rituals help get sleep hormones flowing. Follow the same pattern every night.

Talk on the phone or even better FaceTime or Skype with friends so your brain can have the satisfaction of mirroring and the stimulation of responding to another human’s emotions. Accept your humanness, that you don’t have much control over your life and never did.

There is so much stimulating content now, from streaming services to podcasts, Kindle and audiobooks, ways to feel part of humanity and not so alone. Type your thoughts and feelings into a journal to help process and keep them moving.

My coffee ritual is still my favorite part of the day. It’s reliable and always there for me. I stocked up on great coffee, anticipating society shutting down, along with spam and popcorn, cold medicines and laundry detergent.

You can go outside for a walk, if not many people are around. Walking is relaxing. Gently swinging your arms as you go relieves back pain. My husband and I strap on weights and walk the neighborhood. We wave to our neighbors, most of whom are also living homebound isolation. We stand far apart as we chat.

“Let me know if you need anything,” I say. “I’ll disinfect it and hurl it over to your yard.” They agree to do the same.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Patients with Arachnoiditis and Ehlers-Danlos Need Adrenaline for Pain Control

By Dr. Forest Tennant, PNN Columnist

In this era of opioid controversy and tragedy due to forced opioid reduction, the scientific information on adrenaline-type agents can help control constant, intractable pain and help reduce opioid use.

Overlooked in the opioid controversy is the key point that an adequate supply of adrenaline-related neurotransmitters – such as dopamine and norepinephrine – are necessary in the brain and spinal cord for pain relief. Unfortunately, constant intractable pain depletes the natural supply of endorphin, dopamine, adrenaline and noradrenalin, and their levels must be replaced to adequately control pain.  

Persons with a severe, intractable pain condition like Adhesive Arachnoiditis (AA) and/or a genetic connective tissue disorder like Ehlers-Danlos syndrome (EDS) will need an adrenaline agent, also called a stimulant, for pain control, maximal function, keeping opioid dosages stable, and preventing sedation and overdose. 

Adrenaline agents have long been known to boost or potentiate opioids, enhance pain relief, and allow less opioid to be used. A study by this author found that the simultaneous use of a stimulant and clonidine lowered opioid dosage by 30 to 50 percent. 

The use of a stimulant in this manner is not new. In the 1920’s, physicians at the Royal Brompton Hospital in London found that a stimulant was a necessary ingredient in the famous “Brompton Cocktail” for relief of severe pain. Today, modern pain relief agents often add caffeine as a stimulant to make the codeine and oxycodone more potent.

Most observers believe that an adrenaline agent given to an intractable pain patient will automatically raise blood pressure and pulse rate. This is generally a myth, because the person with intractable pain often depletes their reserve of dopamine, noradrenalin and adrenaline.  

The use of an adrenaline agent will serve to replace these depleted neurotransmitters and will not generally cause blood pressure and pulse rate to rise. Periodic monitoring is, however, recommended to be continued.  

Multiple Benefits  

A person with intractable pain due to AA, EDS, Reflex Sympathetic Dystrophy (RSD), or another severe and tragic condition will usually have the following conditions – all of which will benefit by an adrenaline agent:

• Weight Gain

• Attention Deficit Disorder (ADHD)

• Depression

• Sedation

• Fatigue

• Memory Loss

Descending Pain

Recent research has learned that constant, intractable pain establishes a “biologic battery” in the brain and spinal cord. This “battery” sends electric currents down the autonomic (non-spinal cord nerves) nervous system. Symptoms of this descending pain include excess heat, muscle spasms, jerking, tremors, sweating and “all-over” pain.  

In contrast to other forms of pain, descending pain isn’t well controlled by opioids and anti-inflammatory agents. The drugs clonidine and tizanidine are less effective. Only adrenaline agents stop it. Some adrenaline agents for persons with AA and EDS include:

• Phentermine

• Adderall

• Phendimetrazine

• Methylphenidate

• Dexedrine

• Modafinil  

Every person with intractable pain due to AA, EDS, RSD, cancer or other painful disease, should educate themselves on adrenaline agents and discuss them with their medical practitioners in order to either lower their opioid dosage or keep it from escalating.   

Simply stated, a person with intractable pain needs at least a small dose of an adrenaline agent for pain relief and optimal function. 

Forest Tennant, MD, MPH, DrPH, has retired from clinical practice but continues his groundbreaking 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 of the Tennant Foundation, and is republished with permission. Correspondence should be sent to veractinc@msn.com.  

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Severely Injured? Don’t Count on Getting Opioid Pain Medication

By Madora Pennington, PNN Columnist

When I went to Cedars-Sinai Urgent Care in Los Angeles recently, screaming and crying, my blood pressure dangerously high, my foot ballooning and turning blue from a household accident, the doctor wouldn’t give me opioid pain medication.

They x-rayed my foot. Two bones were broken. They gave me a shot of a NSAID that, they said, would wear off in a few hours. It did. They gave me crutches, a boot to immobilize my foot, suggested I see a surgeon and, in the meantime, take Advil. What?

It wasn’t personal. This is Cedars-Sinai’s policy. In urgent care, they won’t give opioids to anyone for any reason.

I had gone to Cedars-Sinai because I have a complex medical history. There, my records are most complete. This makes the appointment easier for the doctor and me.

Also in my records is my long-term opioid use history. I was on Vicodin and morphine daily for about six years, to treat chronic pain from Ehlers-Danlos syndrome, a rare genetic disorder that causes all the joints to be loose, or rather, permanently sprained.

When I started on daily opioids, an option no longer available, I had pain that I could not live with, no quality of life and was planning my suicide.

Those drugs gave me enough relief to endure. I became less of a burden to my caretaker. I could focus on trying to improve my health. If your day is spent fighting extreme pain, being productive is not possible.

Then I got very lucky.

In 2014, experimental treatment had improved the strength of my tendons and ligaments. My body hurt less. I went straight off the opioids and stayed off.

Withdrawal was a harrowing marathon of torture. For years after, I suffered from the physical damage opioids left behind. But I didn’t go back on them because I had never become addicted. Why? I had been warned at the start of my opioid treatment to take the drugs for physical pain only, not for emotional relief. This patient follows orders.

As a result of the war on opioids, many chronic pain patients are being denied adequate pain relief. Some forced to taper end up committing suicide from the agony of withdrawal plus untreated pain. This became such a problem, the U.S. Department of Health and Human Services issued new recommendations in October, advising doctors to look at each case individually and not to put patients on rapid opioid tapers or abruptly discontinue them.

But I had never heard of someone with a severe, acute injury forced to suffer. Even I can’t be trusted? I have a proven record of responsible opioid use with no addiction.

The doctor treating my injured foot, clearly embarrassed, told me, “This is urgent care. If it’s something severe, the patient should be in the ER or at a pain doctor.”

But I had called before I came. “Would they see me for a possibly broken foot?”

The receptionist said to come in, they would x-ray me right away. She didn’t say I would not be given adequate pain medication.

Has the war on opioids gone too far? If doctors and hospitals are too afraid of lawsuits or prosecution to prescribe, then yes.

A Mayo Clinic study found that only about 1% of patients given opioids in emergency rooms went on to long term use. Another study found less than 1% of patients being treated with opioids for post-surgical pain developed dependence or abused opioids. Does that mean the other 99% of us should not get pain medication?

Not according to the CDC, which suggests three days of opioids for acute injuries like mine.

After I left urgent care that day, I took Vicodin which had expired a year before but I’d never gotten rid of. If it hadn’t worked, I would have had to call an ambulance and gone to the ER that night, just for pain treatment.

After surgery, the podiatrist told me, “One bone was in pieces. I bolted together what I could. Some bits were too small so I picked them out and threw them away.” Well, that explains the pain I’d been in.

I vowed never to leave things on the floor that someone might trip on. And I set up Google Home to process a command to make a phone call for help.

I also filed a complaint with the state against the doctor. Medical care is about the patient, not hospital bureaucrats.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Why Getting a Diagnosis Matters

By Crystal Lindell, PNN Columnist

For me, finding out I had a genetic condition with no cure was, strangely, liberating. 

When I walked out of the doctor’s office, I went to lunch at Chipotle with my mom to celebrate. We splurged for the guac. 

No, I wasn’t ever going to get better — but at least I wasn’t crazy. 

It took about five years of debilitating chronic pain in my ribs, two trips to the Mayo Clinic, appointments at three different university hospitals, and countless specialists before I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in March 2018. 

And you know how it happened? It wasn’t some magical doctor who finally figured it out all out. No. It was my readers. A few of them emailed me suggesting I check into it, so I asked my doctor about it. He referred me to a pain specialist who diagnosed me within a month. 

I’m not going to pretend that finding out I had hEDS was all just a pile of happy pills though. I went through an extremely rough month of depression and grief as I worked to grapple with everything that came with that life-long diagnosis. There’s no cure. My body will probably just get worse over the years. And having children would be extremely risky. 

It was a loss, for sure, but it also was a gain in so many ways to finally know what I was fighting — and for others to know as well. It felt like it went from, “She’s making it all up and probably just wants pain meds,” to “She’s here legitimately,” in my medical chart. That alone was life changing. 

And based on the Facebook and Reddit patient groups I follow, I’m not alone in any of this. Hundreds, if not thousands, of people seem to post about their search for a diagnosis, and the validation they feel once they’ve gotten it. 

Knowing your enemy’s name makes it much easier to do battle. 

And yet, doctors seem to be so far behind on this. 

Here are some common myths I’ve heard both from my own doctors, and via patient stories. 

Myth: A diagnosis won’t change how the symptoms are treated. 

Fact: This simply isn’t true. For me, hEDS means I can react differently to medications and treatments. For example, I should avoid chiropractors and only see specially trained physical therapists, because if I don't, I could be seriously injured. Not to mention the fact that it also means I have additional risks that can be regularly tested for, such as issues with my heart. And the risks related to surgery also change. Be skeptical anytime someone tries to tell you that more information is a bad thing.  

Myth: A diagnosis will increase insurance rates. 

Fact: The U.S. requires insurance companies to cover pre-existing conditions now, so this simply isn’t true. 

Myth: Seeking a diagnosis means you just want to spend your days blaming everything on your condition. 

Fact: Trust me, nobody “wants” to blame everything on a genetic condition. But if a genetic condition is to blame, then it’s not crazy to connect the dots. A diagnosis also helps you see dots you didn’t even know where there.

Myth: A diagnosis doesn’t change anything.

Fact:  A diagnosis does so much more than get noted in your medical history. It also can help you apply for programs like Social Security Disability and medical marijuana cards. And maybe even more importantly, it can help you explain yourself to friends, colleagues and family.

When you show up late for a meeting because “your ribs hurt,” people give you the side-eye and then leap into a diatribe about how their back hurts sometimes and they still manage to get there on time. But if you show up late and explain that you have a rare disease called EDS, they usually rush to offer sympathy and understanding. 

So what do doctors mean when they try to tell you that a diagnosis doesn’t matter? They mean, it doesn’t matter to them. It’s similar to when they say a surgery is going to be easy, they mean it’s going to be easy for them.

But we aren’t living for them. We’re living for us. So keep fighting the good fight. Keep insisting that you get the right diagnosis. And know thy enemy.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers-Danlos syndrome. 

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.

A Zebra With the Heart of a Lion

By Dawn Tucker, Guest Columnist 

Ehlers-Danlos syndrome (EDS) sucks.  There, I said it.  I have EDS Type 3 hypermobility and it hurts. I cry every day, sometimes two and three times a day.

I have dislocated various parts of my body due to collagen deficiency.  I have what is called frequent subluxations. My neck, shoulders and wrists have sprained for no reason other than I turned too quickly or took a deep breath.  I never knew why. I just knew people judged me and were critical whenever I mentioned the severity of my pain. 

My whole life (and I am 50 years old now) has been spent listening to others tell me my pain is all in my head, or that I am lazy or crazy. So I stopped telling people about it because no one wants to listen to a constant complainer. 

Instead I isolate and spend most of my time -- when not working -- in bed trying to get my body to cooperate with me.  It doesn’t.

I have three children and five grandchildren.  One son and one grandson also have EDS, and I cry because I know they will be judged and criticized by people who don’t understand. 

I once heard someone tell my son, “Something is always wrong with you.’ And I thought to myself, they could be talking to me.  I am beset with migraines, insomnia, dental issues, allergies, fatigue, irritable bowels, sprains, pains and aches.

I too have been told, “Something is always wrong with you.”

DAWN TUCKER

And they are right.  Something is always wrong with me.  On bad days I want to give up.  Then I remember, I might be the only person my son or grandson knows, who truly understands their pain.  I cannot give up on them, even if at times I want to give up on myself.  

I try to be strong and do everything myself.  I hate to ask for help and I tire of arguing with people about my condition. Yet I know I will argue for my son and grandson.

In the last few years, I have made acquaintance with others who have EDS.  But I’ve met only two doctors that were familiar with EDS, so I took to learning more on the internet.  The internet offers a chance to get the word out about this condition. To let others know about EDS and the often painful associations because of this inherited disease. 

Medical students are sometimes told, “When you hear hoof beats behind you, don’t expect to see a zebra.” That’s why EDS is symbolized by a zebra. It is misdiagnosed, under-diagnosed or simply not considered.  

I am living proof that sometimes it really is a zebra.  I have no problem with being a zebra, but this zebra has the heart of a lion.  

Dawn Tucker lives in Ohio.

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

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