Descending Pain: A New Way to Control Severe Chronic Pain

By Dr. Forest Tennant and Ingrid Hollis

The control of severe chronic pain in medical practice today is almost exclusively based on “ascending” or “neuropathic” pain:

Ascending pain occurs when a pain signal is transmitted from the site of injury or disease up the spinal cord to the brain. Neuropathic pain is the pain that results when there is damage or dysfunction of nerve tissue in the brain, spinal cord or peripheral nerves. 

In recent years, researchers discovered that when chronic pain centralizes, it creates a third type of pain called “descending” pain. This is a critical issue for persons with adhesive arachnoiditis and other diseases that cause severe chronic pain, because descending pain requires different medications than those used for ascending and neuropathic pain.

A person with constant pain will produce excess bioelectricity (central sensitization or centralized pain) in the glial cell matrix of the brain. This bioelectricity “descends” or travels down the spinal cord and vagus nerve. It not only produces pain, but over-stimulates the cardiovascular system. 

Descending pain is controlled by the noradrenergic receptor.  The neurotransmitter to this receptor is called noradrenalin or norepinephrine. 

Symptoms of Descending Pain

Descending pain will be present in persons who have constant, unremitting pain. Here are the symptoms:

• Pulse rate elevates

• Periodic hot flashes

• Cold hands/feet

• Excess sweating

• Allodynia (pain upon light touch) 

Over-Reliance on Opioids and Neuropathic Agents

The lack of awareness about descending pain is one reason why high doses of opioids and neuropathic agents (i.e., gabapentin, diazepam) may be over-prescribed. Physicians may simply raise the opioid or gabapentin dosage if they are not aware that the cause is descending pain.  What’s more, the increase in dosage may be ineffective or even harmful.

This also applies to opioids in implanted pumps.  Countless persons have been treated with an implanted device or “pain pump” with the erroneous belief that no medication, except intrathecal opioids, are needed.  Patients with these devices soon learn that their pain is poorly controlled by opioids alone. 

Opioids and neuropathic agents have little effect on descending pain.  It must be treated separately.

Pain treatment and relief are based on a medicinal that activates or stimulates a specific receptor (think “action point”) that is present in nerve cells in the brain, spinal cord or peripheral nervous system. Here is how the three types of pain and their receptors can be treated:

1. Ascending pain needs to be treated with medications that activate the endorphin or opioid receptor. 

2. Neuropathic pain control depends on activation of a receptor called gamma amino butyric acid (GABA). 

3. Descending pain control must activate the norepinephrine (noradrenalin) receptor.

To achieve good control of severe, chronic or intractable pain, all three of these receptors must be simultaneously activated.  Severe chronic pain is commonly undertreated, because all three receptors are not simultaneously activated.

Medication Classes for Descending Pain

Three medication classes are used to treat descending pain.  Medical practitioners and patients have choices, and can experiment to help decide which medications and supplements bring the most comfort.

1. Bioelectric Blockers: Tizanidine, propanolol, clonidine, tapentadol (Nucynta).

2. Receptor Activators: Modafanil (Provigil), methylphenidate (Ritalin), dextroamphetamine, amphetamine salts (Adderall), phentermine, lisdexamfetamine (Vynanse). Non-prescription activators: lion’s mane, mushroom extract, St. John’s wort, rhodiola, mucuna, whole adrenal gland.

3. Precursor (Amino Acids) of Noradrenaline: Phenylalanine at 1,000 to 2,000mg a day. Tyrosine at 1,000 to 2,000mg a day.

When not controlled, chronic pain, inflammation and autoimmunity will deplete a number of neurotransmitters and hormones.  When that happens, noradenaline (norepinephrine) will often be depleted. 

Supplements of either amino acids (phenylalanine or tyrosine) and daily protein intake may help reduce both background and flare pains. Phenylalanine and/or tyrosine need not be taken every day, but they are highly recommended at least two days a week. They can and should be taken with a bioelectric blocker or receptor activator.

Noradrenergic receptor activators do not raise pulse rate or blood pressure in a constant pain patient like they do in a normal person.  They may actually lower blood pressure and pulse rate.  That’s because chronic pain, inflammation and autoimmunity deplete noradrenalin.

One medication, tapentadol (Nucynta), is both an opioid and norandrenergic blocker. It is highly recommended.

Descending pain is a new discovery that must be recognized and controlled to achieve relief from severe chronic pain.  A sole reliance on opioid and neuropathic agents may often provide inadequate pain relief.

To learn more about descending, ascending and neuropathic pain, you can watch a recent episode of DocToks with Dr. Forest Tennant and Friends.

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 his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its bulletins here.

Ingrid Hollis is a person in pain, patient advocate, and advisor to the Tennant Foundation.

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

Cactus-Like Plant Shows Promise as Treatment for Intractable Cancer Pain

By Pat Anson

Throughout history, humans have often turned to plants and herbs for pain relief. Poppy plants gave us opium, aspirin was derived from willow trees, and peppermint oil is used to relieve everything from migraines to joint pain. Turmeric, ginger, lavender, eucalyptus and capsaicin are staples in many topical analgesics.

Researchers at the National Institutes of Health (NIH) say a cactus-like shrub native to Morocco also shows promise as a treatment for severe cancer pain and other types of intractable pain.

In a small pilot study recently published in the journal NEJM Evidence, they reported that injections of resiniferatoxin (RTX), a molecule derived from resin spurge (Euphorbia resinifera), provided durable pain relief to patients with terminal end-stage cancer.

"The effects are immediate," lead author Andrew Mannes, MD, chief of the NIH Clinical Center Department of Perioperative Medicine, said in a press release. "This is a potential new therapy from a new family of drugs that gives people with severe cancer pain an opportunity to return some normality to their lives."

The study involved 19 patients with terminal end-stage cancer who did not get adequate pain relief from opioids and other pharmaceutical drugs. But after a single injection of RTX, their worst pain intensity fell by 38% and their use of opioids by 57%. Quality of life also improved, allowing the patients to reengage with family and friends in their final days.

NIH scientists believe RTX has the potential to treat other pain conditions, including other types of cancer pain, neuropathy, post-surgical pain, trigeminal neuralgia, and chronic nerve pain caused by chemotherapy.

"Targeting specific nerves brings many pain disorders into the range of RTX and allows physicians to tailor the treatment to the patient's pain problem. This interventional approach is a simple path to personalized pain medicine," said senior author Michael Iadarola, PhD, a research scientist in the NIH Clinical Center Department of Perioperative Medicine.

RTX acts similarly to capsaicin, the active molecule in chili pepper, by numbing nerve fibers in damaged tissue and blocking them from sending pain signals to the brain. RTX enters the TRPV1 ion channel in the peripheral nervous system, allowing an overload of calcium to flood into the nerve fiber. Patients are still able to feel mild sensations like touch, pressure and pin pricks, but more severe pain signals are blocked.

"Basically, RTX cuts the pain-specific wires connecting the body to the spinal cord, but leaves many other sensations intact," Iadarola said. "These TRPV1 neurons are really the most important population of neurons that you want to target for effective pain relief."

"What makes this unique from all the other things that are out there is that it is so highly selective," Mannes said. "The only thing it seems to take out is heat sensation and pain."

People in North Africa knew this thousands of years ago. The first written record of Euphorbia resinifera being used for pain control dates back to the time of the Roman Emperor Augustus, when dried latex from the plant was used as medicine.

The NIH is planning further studies of RTX in clinical trials.

5 Cool Things to Help You Endure Summer Heat With Chronic Pain

By Crystal Lindell

As temperatures heat up this summer, it can be difficult to get through hot sunny days when you’re also dealing with chronic pain and chronic illness. 

Weather is such a huge factor in the severity of day-to-day chronic pain levels, and if you’re on certain medications heat can also impact your body in other ways, like skin irritation and ankle swelling. 

Here are 5 things I use to get through the summer months while also dealing with chronic pain and chronic illness. 

Gold Bond Friction Defense Stick

My number one summer survival item is the Gold Bond Friction Defense Stick. I use it on my arms and thighs to prevent the heat and humidity from chaffing my skin if I’m wearing shorts, a tank top, a bathing suit or any light summer clothing. 

And this stuff seriously works! Putting it on after my morning shower makes such a huge difference in my quality of life throughout the summer. 

If you have a long day of walking, or swimming you may need to re-apply a few times, but for most day-to-day activities, I have found that once in the morning is more than adequate. 

Find it on Amazon here.

Compression Socks

Every summer my excessive ibuprofen use combines forces with my Ehler-Danlos Syndrome to make my ankles swell up – especially if the humidity is high.

So I swear by these compression socks, which virtually eliminate that symptom, even after long car rides. I have multiple packs of these in multiple colors, and throughout the summer months, I wear them almost daily. 

No, they aren’t super stylish with shorts, but if you wear them underneath pants, nobody can even tell. 

Find them on Amazon here. 

Light, Airy Pants

Speaking of pants, I tend to prefer them to shorts most of the time, even in the summer months. And these light, airy pants are great for enduring the heat. 

They offer all the comfort of pants, with all the breathability of shorts. I use them as pajamas, as well as pants to wear over my bathing suit at the pool, and even for lounging around during the day.

According to my Amazon order history, I have literally ordered these pants eight times! I have them in every color and even in multiple sizes. They’re also great at enduring weight fluctuations that are common when you’re on a lot of medications and dealing with chronic pain because of how stretchy the waist is. 

But the best things about these pants might be that they have pockets! If you’re familiar with the world of women’s pants, you know just how valuable and rare that feature is! 

Find them on Amazon here. 

Adjustable Fan

Sometimes chronic pain and related medications make us especially sensitive to heat and humidity, but a personal, adjustable fan can be a great way to cope. 

We have this fan in multiple colors, and we use them throughout the summer to direct air flow exactly where we want it. 

It’s relatively quiet for a fan, but it still packs a punch when it comes to cooling you off during the summer months. 

Find it on Amazon here. 

Summer Reading Club

If you’re looking for a comforting summer read, I can’t recommend “Garden Spells” by Sarah Addison Allen enough. It’s a very light, easy read that follows the stories of two sisters who have to navigate common sibling friction with the added stress of coming from a magical family that the whole town thinks is “weird.”

I read it for a book club recently and flew through it in two days. It’s a great light read, even if you’re have a chronic pain flare and can’t get off the couch. It also takes place in the south, and the heat is a common theme, making it perfect for getting into the summer state of mind.

Find it on Amazon here. 

What products do you use to get through the hot and humid summer months while dealing with chronic pain? We’d love to hear your recommendations in the comments below! 

The Pain News Network may make a small commission on items purchased through the links above. 

Care and Control of Adhesive Arachnoiditis Depends on Water

By Dr. Forest Tennant

Chronic illness tends to decrease one’s desire to drink fluids. If you have Adhesive Arachnoiditis (AA), however, you must drink some fluids about every 2 hours while awake. Why?

AA is an inflammatory disease of the spinal canal in which cauda equina nerve roots become attached by adhesions to the arachnoid-dural membranes covering the spinal canal. 

The arachnoid membrane is unique among tissues in the body as it doesn’t have its own blood supply. No arteries feed into it. Consequently, it depends on a “full tank” of spinal fluid that comes from the fluids you drink. Spinal fluid brings nutrients and medication to the arachnoid. It also bathes the inflamed area and washes away inflammatory waste and toxins.

Spinal fluid must be constantly kept at a high level. The body makes about 500 milliliters (17 ounces) of spinal fluid a day. If you are dehydrated due to lack of regular fluid intake, you may not make enough spinal fluid to control AA, including its pain.

Water Soak Every Day

Soaking in water daily is also important to control pain and inflammation from AA.

Water soaking is an age-old remedy for pain that is still worthwhile. It is believed to relieve pain by relaxing muscles and increasing blood flow to damaged areas of the body.  

Water soaking also extracts excess bioelectricity and inflammatory toxins that have accumulated due to inflammation and damage to the neurologic circuitry in the body. 

Here is a list of water soaking measures that are applicable to a person with AA: 

1. Stand in the shower and let water flow off your back, neck and legs.

2. Immerse your body up to your neck in a bathtub, hot tub, jacuzzi or pool.

3. Drape a warm, water-soaked towel over your back.

4. Soak your feet and ankles in warm water.

The soaks should be done for 5 to 15 minutes. Minerals or herbs can be put in foot baths. The most popular mineral preparation is Epsom Salts.

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 his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.

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

The Two Most Common Causes of Adhesive Arachnoiditis

By Dr. Forest Tennant

Adhesive arachnoiditis (AA) doesn’t just happen out-of-the-blue or overnight. It is the tragic end result of sequential pathologic damage, over time, to multiple spinal tissues.

AA may develop from a direct spinal injury or from an inflammatory, autoimmune disease that originates outside the spine.  The discovery that inflammatory-autoimmune diseases can originate outside the spine and spread into spinal tissue is a new medical concept.

Here are the two common pathologies that can cause AA, and the early symptoms that precede AA itself:

Pathology #1: Spinal Trauma

The first pathologic journey is accidental spine trauma or a medical procedure such as an epidural injection that damages the spinal canal cover, which consists of an outer layer (dura) and an inner layer (arachnoid).

Direct spinal injuries may occur to persons in good health.  Examples are auto accidents or electrocution in an industrial accident. The arachnoid layer becomes inflamed after trauma, just like a finger that has been hit with a hammer. The inflammation may progress and then spread.

Eventually, the inflammation will contact cauda equina nerve roots and spread into them. After a time ranging from weeks to months, the inflammatory adhesions “glue” cauda equina nerve roots to the arachnoid, forming the disease called adhesive arachnoiditis.

Pathology #2: Degenerative Discs

Spinal discs degenerate when they become inflamed, due to a pathologic generator such as an infection, autoimmunity or trauma.

Persons who have a genetic connective tissue disease like Ehlers-Danlos, a spine anatomic abnormality, or an autoimmune disease are at high risk to develop degenerative disc disease. Once inflammation sets in, the disc softens, shrinks and slips out of its space, pressing against the spinal canal cover (dura and arachnoid layers).

The inflammation in the disc may spread to the arachnoid membrane and cauda equina nerve roots. As stated in Pathology #1, when inflammation produces sticky adhesions in the cauda equina nerve roots and arachnoid, they may glue together forming AA.

Early Symptoms

If the arachnoid becomes inflamed after trauma, epidural injection, spinal puncture or surgical procedure, there will be headaches, localized back pain, feverishness and dysphoria (a state of unease, depression and fatigue). This usually starts 7 to 10 days after the procedure or trauma.

When the cauda equina also becomes inflamed, the first early symptoms are shooting pains into the buttocks and legs, burning feet, and the tingling sensation of water or insects on the buttocks or legs.

Prevention of AA may be possible in these circumstances by use of one or more anti-inflammatory drugs that are effective inside the spinal canal. You can learn more about the symptoms and treatments for AA on our website.

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

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

How Chronic Pain Impacts Romantic Relationships

By Crystal Lindell

The more you love someone with chronic pain, the more likely it is that their pain will cause you emotional distress. 

That’s according to new research published in the Journal of Health Psychology, which looks at the ways middle-aged romantic partnerships are impacted when one person has chronic pain. 

The researchers collected twice-daily surveys over the span of 30 days from 147 couples who were at least 50 years of age and had one partner who suffered from chronic back pain. 

Using the couples' answers to questions about distress and relationship closeness, as well as reports of pain severity from the pain-affected partner, they examined how emotional, behavioral and cognitive closeness affected the quality of couples’ daily interactions.

On the positive side, researchers found that emotional closeness between couples dealing with chronic pain led to more marital satisfaction on days when the couple felt close. 

However, on the other side of things, the closer the couple felt emotionally on any given day, the more likely it was that the non-pain partner experienced more distress. The non-pain partner apparently feels empathy for the pained partner, which results in them feeling stressed. 

As anyone who’s ever been in love knows, empathy is the required price. When your partner is sad, you will also tend to be sad on their behalf. 

This is not inherently a bad thing. Feeling empathy for your partner when they are dealing with pain makes it more likely that you’ll work harder to ease their pain, by doing things like advocating for them in healthcare settings and allowing them to rest while you do the household chores. 

The researchers framed this as something to avoid though, which I guess makes sense if it’s happening excessively.

“Couples have to find a balance that is ideal for them in managing closeness versus independence — this is true for all couples, not just those dealing with the impacts of chronic pain. But for those dealing with chronic pain, we can help them learn how to balance the benefits of closeness with minimizing shared distress stemming from a chronic condition,” lead researcher Lynn Martire, PhD, a professor of human development and family studies at Penn State’s Center for Healthy Aging, said in a press release.: 

The findings suggest that methods could be developed to help couples find the right balance in closeness, which would protect them from causing more pain and distress for each other. Martire and her colleagues plan further studies on the roles of behavioral and cognitive closeness.

“I’m excited to dive deeper into the other research questions we can examine from this data set,” Martire said. “We gathered data using different measures of relationship closeness, how they differ between patients and partners and how relationship closeness changes over time. We are poised to learn a great deal about the impact of pain on couples.”

Prior studies show that closeness is associated with many positive and beneficial relationships, including higher levels of commitment and satisfaction, and a lower risk of the relationship ending. 

However, researchers also say their findings suggest that too much closeness may transfer negative emotions and physical symptoms between partners.

“These findings illustrate a complex interplay between closeness and personal well-being in couples managing chronic illness and suggest the need for interventions that target both the benefits and potential costs of closeness,” they concluded. 

Yes, indeed, there are “benefits and potential costs” in any close relationship. It’s a contradiction that countless poets have spent centuries trying to navigate. 

Love comes at a price, but most of the time, the price is worth it. 

The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

When I first started having debilitating rib pain more than 10 years ago, doctors would constantly ask me to rate my pain on a scale of 1-10. 

It was the worst pain I had ever experienced, but I didn’t want to sound too dramatic, so I would almost always tell them an 8 or a 9. 

However, I started to notice a troubling pattern: No matter what number I said, the doctors still treated me with the same mostly dismissive attitude. 

So, regardless of whether I said my pain was a 7, a 3, or even an 11, the doctors I was dealing with did not seem to believe me. They seemed to think I was being dramatic no matter what. 

At the time, I blamed myself. Surely I must not be communicating the severity of my pain well, if these doctors are still ignoring me, I thought. 

So I started scrounging around online for alternatives. I assumed that if I just explained myself better, then they would react with the urgency that I felt the situation called for.  

I also thought that perhaps I was picking the wrong number, which was causing doctors to dismiss me as someone who couldn’t accurately assess my own body. 

The first thing I found was a pain scale written out, where each number was explained, like this one from “My Health Alberta.” 

It includes a written description with each number, starting with:

0 = No pain.

1 = Pain is very mild, barely noticeable. Most of the time you don't think about it.

2 = Minor pain. It's annoying. You may have sharp pain now and then.

3 = Noticeable pain. It may distract you, but you can get used to it.

And so on. 

Looking at that chart, I decided that my new rib pain – which was eventually diagnosed as intercostal neuralgia that was caused by Ehlers-Danlos Syndrome – was a: “8 = Very strong pain. It's hard to do anything at all.”

The fact that I would often just lay on the exam table silently crying while I prayed that whatever doctor I was in front of would actually help me, made me feel pretty confident in my assessment of an “8.”. 

It was, indeed, very strong pain that made hard to do anything at all. 

I was also naive enough to believe that if I personally added the descriptor when I gave my number, that it would serve as some sort of magic spell that would finally unlock access to the treatment I needed. 

Alas, that did not work. Doctors just nodded and typed “8” into their little online chart and then moved on through the appointment the same way that they always had: With their trademark unsympathetic arrogance and suggestions about taking more gabapentin.  

After that, I went a step further: I tried to find a pain scale that felt more relevant. Eventually, I discovered the Quality of Life Scale, (QOLS). It’s designed for chronic pain patients to show how their pain is impacting their daily life.  

It's a reverse of the traditional pain scale, in that 0 is the worst pain, while 10 means you're doing pretty well. 

It features descriptions like: 

0: Stay in bed all day. Feel hopeless and helpless about life. 

1: Stay in bed at least half the day. Have no contact with the outside world. 

All the way up to:

10: Go to work/volunteer each day. Normal daily activities each day. Have a social life outside of work. Take an active part in family life. 

At the time, I was about a 4: Do simple chores around the house, minimal activities outside the home two days a week. 

Although those "activities" were just doctor's appointments, I was technically leaving my house every few days.

Looking back, I truly believed that using the QOLS scale with my doctors would be the breakthrough moment for my relationship with them. I remember printing it off and putting it in my healthcare binder full of hope that they would finally understand how bad things were for me. 

Alas, I was mistaken. 

Before I started having chronic pain, I was working a full-time job and a part-time one, and living independently. But my pain had gone untreated for so long that I had cut back on everything possible in my life. I shifted my full-time job to a work-from-home position, quit my part-time job, gave up my apartment, and moved in with family, who lived 2 hours away. 

I still remember thinking that when I told the two doctors I was seeing regularly about how I needed to quit my job and move in with my mom, that they would FINALLY see how severe my pain had been. Afterall, these were the real-life implications of where I was on the QOLS pain scale! 

Wrong again. Instead, both doctors just expressed quiet relief that I was moving out of the area, and thus I’d no longer be their problem! 

Thankfully, when I moved, I did find a new doctor who did take my pain seriously. And although it took some time to get the pain treatment situation under control, it’s been relatively well managed for years now. 

What I have come to realize about the pain scale is that most of the time, it’s not so much an assessment tool as it is a way for patients to feel a false sense of agency over their medical situation.

It’s like a little breadcrumb that doctors give patients to make them feel included in their own healthcare. 

Because in practice, doctors don’t give much weight to whatever number you say your pain is at. Instead, they rely on their own visual and sometimes physical assessment to determine how much pain they think you are in. 

This can be especially problematic for patients from oppressed or marginalized groups, because doctors are less likely to take their pain seriously in general. 

It’s also a huge problem for patients with chronic pain. That’s because when you live with pain every single day, you don’t react to a 10 on the pain scale the same way someone with acute pain would. It’s just not possible to live everyday screaming at the top of your lungs, or performing whatever stereotypical action doctors assume that someone with “real” pain would exhibit. 

For example, one of the things I learned quickly is that I needed to keep myself as calm as possible during a pain flare, because the more stressed and anxious I got, the more it elevated my pain. 

However, a 10 on the pain scale is still just as horrific, even if you’ve been at a 10 for months at a time. And it should elicit the same sense of urgency that would be customary for someone in acute pain saying that their pain was at a 10. 

In fact, I’d go so far as to argue that a 10 for a chronic pain patient can be even more harmful, because if you’re dealing with that level of pain for a long time, it will likely destroy your life. 

Unfortunately, most doctors can’t grasp any of this. So if you show up to an emergency room with an eerie sense of calm while trying to tell them that your pain is a 10/10, they are likely to be very skeptical. 

I wish I could end this column with some sort of solution for patients, but sadly, I don’t think I have one. If your doctor isn’t taking your pain seriously, they probably won’t change their approach just because you show them a different version of a pain scale. 

No, the solution to the frustrating experience of the pain scale will have to come from the other side: from doctors. 

My suggestion is that they start by just believing all patients and then responding accordingly. Unfortunately, under our current healthcare system, I don’t see that happening any time soon.

So all I’ve got for now, is all I’ve ever got: My hope for you that you’re not in too much pain today. 

Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome

By Madora Pennington

What would you do if your child were in pain? Not just in pain, but in screaming agony, day in and day out? If your child could no longer function?

The documentary "Complicated" follows four families who have a child with Ehlers-Danlos Syndrome (EDS), a rare genetic disorder that causes collagen and other body tissue to be fragile. EDS, named after the two doctors who first identified its peculiar symptoms, impacts those who have it in wildly different ways.

Collagen makes up a third of the body’s protein and is the glue that holds tissue together. To have defective collagen that stretches when it should hold firm can cause almost any part of the body to malfunction.

Over a century after its discovery, EDS is still poorly understood. There are no treatments to remedy the collagen defect itself. Patients and providers are often left groping for solutions for the damage flawed collagen wreaks.

If you have EDS like I do, you already know that what you are told to do to get better depends on the opinions of the specialists you happen to see. Don’t be surprised if they contradict each other, recommend treatments that have no studies behind them, have no understanding or experience with EDS at all, or recommend what is most lucrative for them.

As we see in Complicated, adolescence can be a particularly fraught time for the EDS child. As the body grows, the weight and stresses of longer, heavier limbs can overload the joints.  A growing EDS child may suddenly blow up in pain in places that used to be fine. Former activities can be impossible.

For reasons not well understood, the changing hormones of puberty can provoke a downturn in functioning, with issues like profound fatigue, GI problems, dizziness, allergic reactions, and so on.

Kids who become unable to eat get misdiagnosed with eating disorders. Kids too fatigued to get out of bed get labeled with depression, avoidance, or malingering. These kids are very sick in very strange ways that don’t happen to people with normal collagen.

Failed Surgeries

Spoiler alert and trigger warning for Complicated: two of the teenagers with hypermobile Ehlers-Danlos Syndrome (one of 13 varieties of EDS) tragically succumb in early adulthood. Both underwent extensive spine repairs in their teenage years.

These invasive treatments not only didn’t work, but lead to dangerous complications like loose and infected hardware implanted in their spines that, in the end, could not be repaired and destroyed all quality of life. Unfortunately, the documentary’s audience is left in the dark about how these families came to select these surgeries.

A study from 2012 warned against such surgery, concluding that half the EDS patients experience complications, despite a conservative surgical approach. “The surgeon choosing to operate on EDS patients must do so with extreme caution,” researchers warned.

Another horrifying outcome that Complicated does explore is how EDS families can be accused of medical child abuse (MCA). Also called Munchausen syndrome by proxy, MCA occurs when a parent or caregiver falsifies or exaggerates symptoms in their child and demands treatment that turns out to be harmful. Families with rare, poorly understood and very difficult conditions like EDS can go to extraordinary lengths to seek relief for their child’s suffering.

Andrea Dunlop, host of the podcast “Nobody Should Believe Me” and author of "The Mother Next Door: Medicine, Deception, and Munchausen by Proxy," explains how parents can fall into this trap.

“Munchausen is not seeking a second opinion or even hamming it up a little bit to make sure the doctor takes you seriously. It is a pattern of deliberate and often extremely well-researched deception perpetrated for the intrinsic reward of sympathy, attention, and — to a degree — the sheer thrill of fooling people,” Dunlop wrote.

MCA is diagnosed through medical records. If the records show parents claiming diagnoses for which there is no evidence, diagnoses never actually given by a doctor, or a caregiver’s demand for escalating interventions that pose great risk, those are red flags that something more sinister may be happening.

Complicated leaves out the specifics of how these families ended up under the microscope for MCA. It ends with one family’s joyous reunion and return to a place they love: Disneyland.

For this child, the family complied with child protective services and the courts by stopping excessive medical interventions. For all the EDS cases the documentary looks into, this child fared the best.

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.  

Arachnoiditis Is an Autoimmune Disease

By Dr. Forest Tennant

After several years and numerous studies, we have determined that Adhesive Arachnoiditis (AA) is an autoimmune disease – a condition in which autoantibodies or cellular elements erroneously recognize tissue as virulent or pathologic and attack it, producing inflammation and tissue destruction.

AA only occurs when inflammation forms jointly in the cauda equina and arachnoid membrane of the spine. After the inflammation becomes significant, adhesions form which fuse or “glue” cauda equina nerve roots to the arachnoid membrane. An autoimmune process is the generator and initiator of this inflammation.

The primary generator of the autoimmune process that causes AA is almost always reactivation of the Epstein-Barr virus (EBV) from its normal, dormant, parasitic state. EBV reactivation may occur multiple times over a lifetime.

This same process is now known to be a major causative factor in several cancers and other autoimmune diseases, including multiple sclerosis and systemic lupus erythematosus.

The autoimmune process of EBV has two components: autoantibodies and auto-reactivity. The latter occurs when the virus enters a cell and releases high amounts of self-antigen, which stimulates tissue destruction.

In rare cases, a virus other than EBV may generate autoimmunity and cause AA. Other viruses, especially cytomegalovirus, herpes 6, and covid, may also accelerate or potentiate EBV autoimmunity.

In the past it was generally assumed that epidural injections, spine surgery, contamination of spinal fluid by toxins, or spine trauma were the cause of AA. It is now known that these events may trigger EBV autoimmunity in spinal tissues. Our studies plainly show that AA is preceded and/or accompanied by other autoimmune conditions such as arthritis, migraine, and irritable bowel.

Medical practitioners and persons afflicted with AA must now recognize, diagnose, and treat AA as an autoimmune disease caused by EBV reactivation.

Doctors are more prone to want to treat a disease than they are to treat pain, so classifying AA as an autoimmune disease may improve pain treatment. I'm getting a lot of doctors who are coming on board with this, who see that a patient has a legitimate disease and don't mind prescribing some Vicodin, Tramadol, or Percocet to treat it.

More information about the Epstein-Barr Virus and its relationship to AA and other chronic pain conditions can be found in our book: "The Epstein-Barr Virus: A New Factor in the Care of Chronic Pain."  

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 his 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.    

Why Life With Chronic Pain Makes Every New Ache Extra Terrifying

By Crystal Lindell

Late Sunday night, while putting freshly cleaned sheets onto my bed, I twisted a little weird and threw out my back.

By Monday morning, the pain was so debilitating that I was sobbing as my fiancé tried to help me out of our bed. But beyond dealing with the immediate physical pain, I was also terrified of the future.

As a chronic pain patient, every time I get any new illness or affliction I worry that it will become what the rib pain I woke up with in 2013 became: Permanent. 

When you develop chronic health issues of any sort, you lose one of the healthy population’s greatest luxuries: The ability to assume that you’ll eventually get better. 

Thankfully, I seem to be recovering from this flare up of back pain. Three days after the initial onset, I’m able to lift myself out of bed, and even do some light cooking in the kitchen. 

This is the first time I’ve ever experienced any type of severe back pain like this though, and I had been very stressed that my back would never recover.

This isn’t the first time I’ve faced this fear. 

When I had a bad case of COVID in 2022, I spent the first few nights awake with the most severe cold-related muscle aches I’d ever experienced.

In my fever state, I frantically Googled to see if this was a symptom that could become permanent. I was petrified that my body was just broken like this forever. Thankfully it wasn’t, but I know all too well that there’s no guarantee of recovery when it comes to the human body.

It’s not just my health I worry about either. 

Anytime a loved one tells me about a chest cold, some new joint pain, or any type of new health issue, I panic that their body will never recover. Or worse, what if it kills them?

This fear has only been made worse since 2020, when COVID, which first presents as cold symptoms, started spreading. In the years since it has killed multiple people I knew. 

Now anytime anyone I know develops so much as a sore throat, I worry that they’re going to die.

I keep this to myself because there’s nothing to be gained by spreading my worry to them, but I worry nonetheless. I know firsthand how fragile our bodies are, how delicate our health truly is. I am all too aware of the fact that any of us can lose it at any time. 

As I've been enduring the new back pain all week, cursing myself for taking my ability to bend over for granted, I’ve thought a lot about my late-father, who died from COVID in 2022. 

I have vivid memories of him throwing his back multiple times throughout my childhood. Now that it has happened to me, I’ve realized that I didn’t spend nearly enough time asking him how he coped with it, and then seemingly got past it. 

My dad’s back was so bad that he was walking with a cane at age 35, when my younger brother was born in 1989. But the cane was gone within a few years and I don’t remember him needing it again after that. 

Talking with my brother this week, he told me our dad blamed his back pain on driving a truck for a living, a profession he eventually gave up so he could pursue computer programming. So, I assume it was the career change that alleviated his back pain. But now that he’s dead, I’ll never really know for sure how he healed his back, or if he even really did.

My late-grandfather on my mother’s side also spent decades of his life battling seemingly untreatable back pain. He passed away when I was a toddler, but stories about his back pain continued long past his death. 

Now, as an adult, I suspect he was one of the links in the genetic Ehlers-Danlos chain that we now know runs along my mom’s side of the family. We both battled the same condition, but he’ll never know that.

Pain is always bad, but as our bodies age in the same ways our parents, and their parents before them have, it does have one small, silver lining: It can help us connect to our ancestors in new ways, helping us more fully grasp the lives they lived before us. 

After battling this back pain flare up this week, I have a new appreciation for how much pain my dad and my grandfather must have endured due to their back problems, and a more fully developed sense of empathy for their troubles. 

So while I will continue to worry that every new health issue will become permanent, including my new back pain, I can take small comfort in knowing that even if that’s the case, enduring it just makes me part of a long line of my ancestors who’ve endured the same before me. 

Human beings suffer, but when we suffer together, it does tend to alleviate our sorrows ever so slightly. 

How Do We Decide Which Drugs Are Bad and Which Ones Are Good?

By Crystal Lindell

I was in elementary school during the height of the original DARE campaign. I vividly remember fully uniformed police officers coming into my classrooms to share the Drug Abuse Resistance Education’s program’s very direct message: “DARE to say no to drugs!”

My friends and I all got free black T-shirts with the bold red DARE slogan splashed across it, and every year we signed a pledge promising to never use drugs.  

What qualified something as a “drug” was a little more difficult to discern though. 

Back in the 1990s there was a lot of talk about “pot” and “dope,” so I figured those were both bad, although as a 10-year-old living in a pre-Google world, I didn’t really know what either one was and I didn’t know how to find out.

I also remember lots of conversations about alcohol and cigarettes, but those were apparently only “drugs” if you were under a certain age, seeing as how a lot of adults I knew used them. 

How effective DARE was is still hotly debated, but there is one part that seems to have left a lasting legacy: Most Americans still think anything labeled as a “drug” by cops is inherently bad and must therefore be greatly restricted and regulated.  

Now that I’m in my 40s, I am much less accepting of the blanket “drugs are bad” messages that law enforcement agencies spread to my peers and me back in the day. 

As it turns out, “drugs” can mean a lot of things, and the reasons we are given for why some are bad and some are good are murky at best. 

If you ask most adults in the United States to define “drugs,” they’ll often reach for whatever legal categories the police have neatly provided. Opioids and stimulants are “drugs” because they are heavily regulated, but NSAIDS and acetaminophen aren’t because you can buy them over the counter at Walgreens. 

If you push them to consider the definition beyond what law enforcement has provided, they’ll usually go right to “things that are addictive.” If you point out that caffeine is extremely addictive though, they’ll shrug that off with “well that’s different.” 

I’ll also often hear people defend their morning latte with something along the lines of “well nobody’s ever resorted to sex work to buy an espresso," as though that in and of itself makes coffee superior to a morning Adderall. 

Aside from the fact that this logic shames sex workers, it also leaves out the very important reason that people don’t have to resort to extremes to access coffee: Caffeine is legally sold over the counter. 

If medications like hydrocodone or Adderall were sold in the same way as your morning coffee, they would also be cheap, safe and easily available – and thus people wouldn’t have to resort to extremes to be able to afford them. 

Beyond that, we also have decided, as a culture, that lots of very addictive things should be sold over the counter. 

In addition to coffee, adults can purchase alcohol and nicotine with no problem, despite how deadly both of those are. What makes them different from Adderall or even Oxycontin? Have you ever really considered the question? 

If anything, don't drunk driving and second-hand smoke potentially make alcohol and nicotine worse, since there’s so much danger to non-users?

Personally, as a pain patient who has also seen many loved ones suffer as a result of an onslaught of opioid-phobic regulations over the last decade, I will admit to having been radicalized on this issue. 

I think most of the drug laws we have on the books are far too restrictive, and most substances should be sold the same way alcohol and coffee are: Over the counter. 

However, I can appreciate the fact that this is a radical position in the United States. After all, we’ve all been subjected to heavy anti-drug propaganda for decades now, going back to Nancy Reagan first telling kids to “Just Say No” way back in 1982. 

I’d encourage you to think critically about such a simplistic slogan though. When it comes to which substances people want to consume and why, it’s not quite so easy to know when a drug is bad and when it’s good. 

In fact, I have a saying of my own that I like to share during conversations about drug legalization. I believe people use the drugs they need and, absent that, they’ll use the drugs they have access to.

So if a drug is something you need, is it really something you should “Just say no” to?

What Qualifies Someone as Disabled?

By Crystal Lindell

There’s a common question in the disability community about what qualifies someone as “disabled.”

My advice to anyone considering this question about themselves is this: People who are not disabled do not sit around contemplating whether or not they are disabled. 

So, if you are wondering if your health issues qualify you as disabled: They do.  

A lot of Americans have a rigid idea of “disability” based on how it’s often portrayed in popular culture. The idea is that “real” disabled people use something like a wheelchair, a walking cane, or a walker. Those Hollywood props are what qualifies someone as legitimately disabled. 

But in real life, that’s not true. Disability is often gradual, slowly chipping away at our abilities – but taking them away nonetheless. Which means it can be hard to know when we’ve crossed the threshold into fully disabled. And we may arrive there without so much as a walking cane. 

In truth, it took me years to fully grasp this about my own diminishing health. 

My pain often makes it so that I cannot leave the house, even with pain medication. Grocery shopping trips leave me exhausted, assuming I even have the energy to push through that day’s pain to navigate the store in the first place. I am on daily medications, I put off showers because they are too difficult for me to handle, and I often cancel plans last minute when my body decides to be uncooperative. 

Yet despite all of that, I still did not know if I should consider myself "disabled."

Over time though, I have come to realize that my health problems impact so many aspects of my life, that of course I am disabled. 

After we decide to take on the label of “disabled” for ourselves, we often meet the next hurdle: pushback from loved ones and strangers who bristle at the distinction. 

There’s also a common sentiment among patients with chronic illness where they think if they meet some imaginary threshold of disabled, then finally people will start to accept their limitations and maybe even show some sympathy. Unfortunately, that is often not the case. 

When it comes to health issues, you will never find validation from others. There is no level of mobility aids or level of diagnosis you can get where people who’ve dismissed your health issues in the past will suddenly start to accept them. 

That’s in large part because when people interact with a disabled person, it requires them to contemplate the fact that their own body could eventually fail them one day. 

Some people choose to hold space for that realization in themselves and then express empathy. But others try to reject it, choosing instead to accuse the disabled person of being overdramatic. That’s because they don’t want to consider just how vulnerable our human bodies really are.  

I’ve heard people dismiss diagnosed cancer patients as “hypochondriacs” for complaining about their symptoms. I’ve seen people claim that POTS is not a real disability, despite the fact that it’s often debilitating and life-altering. And I’ve heard people tell loved ones not to use a wheelchair when they need it, because it might make them “give up.” As though we are ever allowed to give up in our bodies. 

Personally, I think of the time I sprained my ankle back in high school. At the time I was working at Walmart, and I went into work despite the severe pain, swelling and bruising on my ankle. Unable to put any weight on it, I used one of the store’s electric mobility scooters to get around the store during my shift. 

A co-worker felt the need to come right up to me and tell me that I shouldn’t be using it because I should be saving the scooters for people who “really” need them. Apparently being unable to walk did not qualify me. 

My advice here is that other’s opinions of your body are irrelevant. They don’t know what it’s like to live with your symptoms, so it doesn’t matter if they accept the label of disabled for you or not. All that matters is that you accept whatever you label you decide to use. 

And, like I said, if you’re wondering if you are “disabled” you probably are. And that’s okay. Now that you’ve named it, you can get on with the noble work of finding new ways to live with it.

7 Practical Gift Ideas for People with Chronic Pain

By Crystal Lindell

Whether you’re looking for gift ideas for a loved one with chronic pain, or you’re looking for some ideas for your own wish list, we’ve got you covered. 

I’ve been living with chronic pain for more than 10 years now, and below is a list of some of my favorite things that would also make great gifts for the person in pain in your life. 

And don’t worry, it’s not a bunch of medicinal stuff. Being in pain doesn’t represent our entire identities. The list below is a lot of fun items that would be great for anyone on your list, but that also are especially great for people with chronic pain.

There’s also stuff for every price range, so you’re sure to find the perfect holiday gift! 

Note that Pain News Network may receive a small commission from the links provided below. 

1. Heated Blankets

I put heated blankets first on this list for a reason – they are truly invaluable if you have chronic pain. Even if you live in a warm climate, they can be great to use if people you live with want the AC on the high side. 

There’s just something that’s both cozy and comforting about curling up with a blanket that literally warms you up. I can’t recommend them enough, both as a gift and for yourself. 

I personally loved this Tefici Electric Heated Blanket Throw so much that after getting one for my house, I literally ordered 4 more so I could give them out as Christmas gifts to my family. They all loved them too. And so did their pet cats! 

Find it on Amazon here: Tefici Electric Heated Blanket Throw

The Tefici was actually my intro to heated blankets. After purchasing one for my living room, I was hooked. So I leveled up to this Shavel Micro Flannel Heated Blanket. 

It was a little more expensive than the heated throw, but I got it in 2021, and it’s still going strong. We use it in the bedroom every single night during our cold Midwest winters, and I can’t imagine sleeping without it. It offers more heat settings than the throw, and it can stay on for up to 9 hours. The heating mechanism is also more steady than the throw, so it doesn’t feel like it gets too hot overnight. 

Find it on Amazon here: Shavel Micro Flannel Heated Blanket

2. Home Coffee Machine

One thing about chronic pain – or really any sort of chronic illness – is that it makes it difficult to leave the house some days. But that doesn’t mean you have to give up your Starbucks-style coffee. 

With a home espresso machine, and a milk frother it’s really easy to create very similar drinks at home – and they’re much cheaper than Starbucks. 

I’ve personally been a fan of Nespresso machines for years now and I recently got my sister into them as well. Assuming the person you’re buying for likes coffee, and that they don’t already have a Nespresso, getting them one or a related accessory like a frother as a gift can be a really fun idea. 

Plus, then they’ll lovingly think of you every morning when they use it! 

Find it on Amazon: Nespresso Vertuo Pop+ Coffee and Espresso Maker by Breville with Milk Frother, Coconut White

3. Sound Machine

A lot of people with chronic pain have trouble sleeping, but both me and my partner have realized that having some white noise in the background can really help our brains relax overnight. 

There are a lot of options out there, but a basic one at a lower price point is all you really need. I got him the EasyHome Sleep Sound Machine last year for Christmas and we both love it! It now has a permanent place on our bedroom dresser. 

It has 30 Soothing Sounds, 12 Adjustable Night Lights, and 32 Levels of Volume. We use it all winter when it’s too cold to sleep with the fan on for background noise. 

Find it on Amazon: EasyHome Sleep Sound Machine

4. Pajama Pants

As someone with chronic pain, I honestly spend more days in pajama pants than I do in regular pants. And not only do I love wearing them, I also love receiving them as a gift – especially novelty ones. 

My partner is a huge fan of Lord of the Rings, so I got him these Lord of The Rings Men's PJ’s last year for his birthday, and he wears them at least once a week. 

And quick note: If you’re purchasing pajamas as a gift, I always recommend sizing up to make sure they’re super comfortable. 

Find it on Amazon: Lord of The Rings Men's Sleepwear

5. Streaming Devices

There are a lot of streaming devices you can use to connect your TV to the internet, but we’ve had Rokus in our house for years now, so I can personally recommend them. 

We specifically love that they offer this really great search feature, where if you search on the Roku homepage for a movie or TV show title, it will tell you which one of your streaming services offer it, and even which ones have it for free! So no more scrolling in an out of each streaming app trying to find the movie you want to watch. 

As an added bonus, you can also use a feature in the Roku App as a remote if you lose yours, which can come up a lot for people who might be dealing with chronic pain-related brain fog. 

Find it on Amazon: Roku Express 4K+

6. Art Supplies

Having chronic pain means I’m always on the lookout for low-key activities I can do at home, so over the years I’ve gotten really into artistic pursuits. But if you’ve ever tried to start a new hobby, you know that getting all the supplies can be half the battle. 

But that also means that art supplies can make a great gift for someone with chronic pain. Plus, they come at a very wide range of price points, so you can find something perfect without having to overspend. 

I personally have the ai-natebok 36 Colored Fineliner Pens linked below, and I love using them for a wide variety of projects. But there’s also sketch pads, watercolor sets and blank canvas, not to mention color books. 

Find it on Amazon: ai-natebok 36 Colored Fineliner Pens

7. Gift Cards

Of course, when all else fails, sometimes the best gift is a gift card, especially if you’re looking for something last-minute since they can usually be sent via e-mail. 

I especially recommend Amazon gift cards, specifically because they can be used to pay for Amazon Prime Service, which offers both streaming services and fast home delivery – two things that people with chronic pain often love. 

Find it on Amazon: Amazon gift cards

If a New Blood Test Can Detect EDS, Will Doctors Even Use It?

By Crystal Lindell

New research points to a potential blood test for hypermobile Ehlers Danlos syndrome (hEDS). But even if the test becomes a reality, I’m skeptical that doctors will use it wisely.  

The study, recently published in the American Journal of Medical Genetics, was funded by the Ehlers-Danos Society. It identifies potential blood-based biomarkers that could help diagnose hEDS, as well as hypermobility spectrum disorders (HSD). 

Researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD, and found a protein (fibronectin) with a unique pattern in every participant with hypermobility. 

“The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis,” the Ehlers Danlos Society explained. 

“The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology.”

So basically they found a biomarker that seems to only show up in people with hypermobility, and they are hoping to use this biomarker to create a blood test. The identification of these fragments could lead to the development of the first blood test for hEDS and HSD, providing a more reliable diagnostic tool for healthcare providers.

In theory, this is good news. A blood test would help more people get an hEDS diagnosis, since it’s seemingly more straight-forward than the physical evaluation and family history used to diagnose hEDS now. It currently takes an average of 12 years before someone gets an EDS diagnosis.

However, I’m skeptical about how a blood test would be used in practice. 

Something I always think about is how visually obvious it is that my joints hyperextend. Any doctor who met me should have been on the alert for hEDS within five minutes. And yet, it still took years for me to get evaluated for EDS, and even then it only happened because I pushed for it. 

Shortly after I was diagnosed, I mentioned it to a nurse who I’d been seeing regularly for months for lidocaine treatments and she said, “Oh yes, your elbows do overextend. I see that.” 

Okay, well if you can see it that easily, why hadn’t you ever bothered to look for it? Why did I have to spend months researching EDS myself, and then bring it up to doctors who had never even mentioned it as a possibility?

If doctors and nurses ignore obvious visual markers now, I don’t have much faith that they’ll be proactive in ordering something more arduous like a blood test.  

Not to mention that once there’s a blood test for something, it’s often treated by doctors as both infallible and the end point of evaluation. This happens regardless of how reliable the blood test even claims to be. 

I still remember sitting in an emergency room in my 20’s in extreme pain while the doctor looked me in the eye and said, “It’s definitely not your gallbladder. The blood work for that came back normal.” 

Yeah, but it turned out it was my gallbladder. I was having a gallbladder attack caused by gallstones, which showed up on an ultrasound that I finally got a couple months later. 

But that particular blood test isn't very accurate when it comes to diagnosing gallbladder attacks, as an article from Merck Manual explains: "Laboratory tests usually are not helpful; typically, results are normal unless complications develop."

Whether or not that ER doctor knew that the gallstone blood test was unreliable doesn’t really matter at the end of the day, because he presented the information to me as though the blood test was a perfect indicator – and I believed him. 

The result was that I spent months after that enduring additional gallstone attacks, while waiting for another doctor to override him and order the ultrasound.  

Another time, a medication I was taking was causing excessive bruising on my legs, to the point that there was more black and purple than skin tone. My then-doctor ran blood work and said that “everything was normal.” 

So again, the blood test resulted in a faulty conclusion, because something was definitely abnormal. 

A few years later, when I was finally diagnosed with hEDS, I realized that one of the symptoms is heightened bruising, and thus the medication I had taken had sent that into overdrive. EDS bruising does not always show up in blood tests because it’s not caused by the same factors that cause bruising in other patients. 

If my then-doctor had taken the time to look at the visually obvious bruising on my legs and decided to override the “normal blood work” results, maybe I would have been diagnosed with EDS sooner. 

Make no mistake, I’m glad that there is ongoing research into a blood test for hEDS, and I hope we eventually get one and that it will lead to more people finally being diagnosed. 

It’s just that I don’t have as much faith in doctors as many of them seem to have in blood tests. So I remain skeptical about how it would actually be used in practice.

How to Inhibit Reactivation of the Epstein-Barr Virus

By Dr. Forest Tennant

The Epstein-Barr virus (EBV) is a parasite that normally lives a dormant, harmless life in nasal and throat membranes and in our white blood cells. We are all carriers of EBV.

EBV usually enters the body and first activates during infancy, often resulting in a case of the "sniffles." In teenagers or young adults, it may trigger infectious mononucleosis. After the initial infection, the virus becomes dormant.

Unfortunately, EBV has the ability to reactivate, duplicate, and travel in the blood inside lymphocytes (white blood cells) to harm tissues and cause pain. How does this happen?

Biologic stress, meaning a physical or psychological situation that cause the hormones cortisol and adrenaline to elevate for more than a few hours, may lower one's immune system. That gives EBV the opportunity to reactivate, produce auto-antibodies, infiltrate tissue, and silently produce a painful condition.

The usual stressors that cause reactivation are physical trauma or injury, an infection, or emotional distress. People with medical conditions such as a genetic connective tissue disease (Ehlers-Danlos syndrome), diabetes, or stroke may have an immune deficiency that also makes them more prone to EBV reactivation.

EBV reactivation is similar to herpes or shingles reactivation. Like EBV, herpes and shingles are usually dormant and harmless viral infections, but they may reactivate and cause blisters or a skin rash.  

Unfortunately, EBV reactivation can be totally asymptomatic and unknown to the individual, until chronic reactivations cause a painful condition. This could result in fibromyalgia, small fiber neuropathy, burning mouth, herniated disc, arachnoiditis or even a cancer such as Hodgkin's disease or lymphoma. 

How to Diagnose and Treat EBV Reactivation

Persons with chronic pain severe enough to require daily pain relief medication may have EBV reactivation as a cause of their condition and should take steps to inhibit it. We recommend antibody testing for EBV reactivation in any person who has severe chronic pain for over 90 days and needs to take pain relievers daily.

Two antibodies are formed during EBV reactivation: the Viral Capsid Antibody (VCA) and Epstein-Barr Nuclear Antibody (EBNA).

Major laboratories offer three quantitative tests for VCA, EBNA and early EBNA antibodies. Qualitative tests (positive or negative) are not specific enough to make a diagnosis of EBV reactivation.

When VCA and EBNA antibodies are elevated above normal levels, a diagnosis of past reactivation is made, and the individual can properly be called a "chronic reactivator." We recommend that levels of VCA and EBNA be two or more times above normal, plus a patient having pain in two or more anatomic sites, to warrant a diagnosis of EBV reactivation.

If the early EBNA antibody is elevated above normal, therapeutic trials of antivirals and corticosteroids should be considered to reverse reactivation.

If both VCA and EBNA are elevated but the early EBNA is negative, we recommend the use of these vitamins and supplements to inhibit EBV reactivation:

• Vitamins C and D

• Astragalus

• Zinc

• Resveratrol

• Curcumin

• Selenium

• Luteolin

• Andrographis

• Lysine

Our research has found that about 90% of patients with adhesive arachnoiditis (AA) have EBV reactivation.  The good news is that once it is determined that a person has reactivation and autoimmunity, there are simple treatment measures that can be implemented.   

In our experience, the treatment measures tend to provide about 20% to 50% more pain relief when used with standard pain therapies. Failure to take therapeutic measures to control EBV may allow increased disease deterioration and pain. 

More information about the Epstein-Barr Virus and its relationship to chronic pain conditions can be found in our new book: "The Epstein-Barr Virus: A New Factor in the Care of Chronic Pain."  

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.