Rare Disease Education: Paget’s Disease

By Barby Ingle, PNN Columnist

One of my personal missions is to educate others on the rare diseases and conditions that cause chronic pain. This year I will be posting a series of monthly articles on 12 different rare and ultra-rare conditions.

According to the National Human Genome Research Institute, a rare condition is generally considered a disease when it affects fewer than 200,000 people in the United States. Just because a person has a rare disease does not mean that they are alone. Altogether, rare disease affects up to 30 million Americans.

There are about 7,000 rare diseases, but less than 5 percent of them have an FDA approved treatment option. I have seen some great improvements over the past few years in recognizing rare diseases and in developing new treatments.  

The first condition being looked at in this series is Paget’s disease of bone. I do not know anyone with this condition personally, but I thought it was a good place to start. My hope is you will recognize some of these symptoms and can pass them on to give someone hope, help and a place to start a conversation with their health providers.

Paget’s disease causes the body to generate new bone tissue faster than normal, resulting in bones that are softer, weaker and more fragile. According to the Mayo Clinic, risk factors for Paget’s disease include being over the age of 40, male, having a family history of the condition, and being of European descent. Researchers suspect a combination of environmental and genetic factors contribute to the disease.

They test for Paget’s disease in three ways to get a diagnosis: x-rays, blood tests and bone scans. In its early stages, most people have no symptoms, so Paget’s disease is sometimes found by accident, such as when one of the tests is done for another reason and they end up with Paget’s as the final diagnosis.

Symptoms of Paget’s disease include difficulty walking, bone deformities, bone fractures, bowlegs, headaches, and joint stiffness. The chronic pain associated with Paget’s disease typically shows up first in the back, hip, legs or skull.

The pain and other symptoms worsen over time. Initially, patients often have a “pins and needles” sensation in their extremities, but the pain can become very unpleasant over time. Bone pain is typically described as extreme tenderness and aching, and is present whether you are moving or not.   

Currently there is no cure for Paget’s disease but there are some treatments that may be helpful, such as bisphosphates and dietary supplements to help strengthen bones. As with many rare and chronic diseases, early intervention is best, but a lifetime of care is important.

There are a few online support groups for patients with Paget’s disease, such as the Facebook page of the Paget's Association. You can also check out this video that helps explain the condition further.

I will be back next month to continue this series with a new rare condition.

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

Why Water Soaking Works

By Forest Tennant, PNN Columnist

There is no medical treatment older than water soaking. It is legend and still works. Adhesive Arachnoiditis and other Spinal Canal Inflammatory Disorders (SCID’s) are particularly helped by water soaking – so much so that we consider it an essential treatment.

Why water soaking relieves pain has been a mystery until recent times. It is known that damaged or “dead” nerves won’t conduct  the body’s natural electric currents, so electricity backs up and is trapped or retained in body tissues. The result is more inflammation and pain “all over.”

Electricity has a negative charge and water tends to have a positive charge, so it pulls out excess electricity from the body, reducing inflammation and pain. If the water contains a mineral, it will pull out even more electricity. That is why mineral hot baths and Epsom Salts are so effective.

The lumbar-sacral spinal canal is loaded with nerve roots. They constantly conduct electric currents that go from the spinal cord to the legs, feet, bladder, sex organs and intestine.

Any damage, by any cause, to the spinal canal nerve roots causes a backup of electricity which is painful and produces even more inflammation. To prevent disease progression, daily water soaking can be most helpful.

Types of Water Soaking

You don’t have to have a jacuzzi or pool to do water soaking. A bathtub is great, but most of us take showers. When you shower, keep the water as hot as you can stand, and massage and stretch your back muscles as the hot water runs over your back. Soaking for 10 to 15 minutes in a jacuzzi, pool or bathtub is preferable, but hot showers morning and night is about as good.

Don’t forget the Epsom Salts. The body normally excretes its excess electricity into the air, mainly through nerve ends in the hands, head and feet. Foot soaking, particularly with Epsom Salts or other herbal salts, is an age-old remedy that attracts the electric currents that travel down the sciatic and other leg nerves.

Another soaking technique is a warm, water-soaked towel or other wet wrap placed over the lower back for 5-10 minutes. Remember, water soaking isn’t an “all wet” idea.

Forest Tennant is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project . Readers interested in subscribing to the  bulletins should send an email to tennantfoundation92@gmail.com.

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

Ehlers-Danlos Is Common Cause of Intractable Pain

By Forest Tennant, PNN Columnist

Ehlers-Danlos Syndrome (EDS) is the best known of the hereditary collagen disorders. From birth, persons with EDS are preprogrammed to start dissolving collagen at some location in the body, as it causes a defect in the way collagen is produced or maintained throughout all tissues.

The fine and soft tissues that are the most susceptible to dissolution are found in the joints, ligaments, eyes, spine, gums and intestine. When these tissues deteriorate and begin to dissolve, inflammation, pain and neurologic impairments begin. The tissue may or may not rebuild and usually leaves permanent damage, pain and/or disability.

Collagen deterioration may start in childhood or middle age. An early sign is being double-jointed or extremely flexible.

It is unknown currently what the exact mechanism is, or what precipitating factors such as virus or trauma that initiate this reaction. Regardless, collagen dissolution will move to a new and different locations once the hereditary preprogramming begins.

EDS commonly hits the spinal canal and spine. The first major problem may be a cerebral spinal fluid leak, protrusion of a disc, Tarlov cyst or arachnoiditis. Given its predilection to hit the spine, EDS may produce the complication of Intractable Pain Syndrome (IPS). In fact, it seems to be emerging as the first or second most common cause of IPS.

EDS Screening Test

Our research has found that a high percentage of patients who have EDS don’t know it. If you have developed a spine or pain problem without an injury or other obvious cause, you should be screened for EDS.

This questionnaire was recently published to help screen people for EDS.   

1. Do you have pain in multiple locations?

2. Do you have extreme fatigue?

3. Are you clumsy sometimes and fall or walk into objects?

4. Are some of the joints in your hands, feet, elbow, hips or knees “loose” or quite flexible?

5. Have you had a lot of sprains or joint dislocations?

6. Is your skin thin in places?

7. Are you double-jointed or able to bend your fingers, arms, or ankle backward?

8. Are your hands and feet cold much of the time?

9. Do you bruise easily or have bruises that suddenly occur?

10.  Is your skin “stretchy” in some places?

11.  Are you constipated a lot?

12.  Do you suffer from heart burn or frequent episodes of food regurgitation? 

If you answered “Yes” to 6 or more of the 12 questions, you should see a doctor and have the diagnosis confirmed by a genetic test or skin biopsy.

If you have EDS or a hereditary collagen disorder, there are foods, supplements and hormones you can take to help restore and rebuild lost tissue. Click here to see them. These tissue building recommendations from the IPS Research and Education Project are meant to complement and supplement your treatment program, but are not a substitute for inflammation and pain control.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

A Little Shop of Horrors: VA Opioid Guideline for Veterans

By Richard Lawhern, PNN Contributor

As a volunteer patient advocate and healthcare writer, I read a very large volume of scientific and policy literature. And as a 21-year military veteran myself, I am particularly interested in Veterans Administration policies for treatment of chronic pain. Thus I reviewed with interest the VA’s 2017 Clinical Practice Guideline for Opioid Therapy for Chronic Pain.  

I also checked with a medical professional who practices in the VA hospital system to verify that the “guidance” of this document is still in force. It is. 

In my view, the VA opioid guidance is a “little shop of horrors” guaranteed to drive patients into medical collapse, and in some cases suicide. These direct quotes from the VA guideline should illustrate my concerns:

• “Since [2010], there has been growing recognition of an epidemic of opioid misuse and opioid use disorder (OUD) in America, including among America’s Veterans…. At the same time, there is a mounting body of research detailing the lack of benefit and severe harms of [long-term opioid therapy].”

• “We recommend against initiation of long-term opioid therapy for chronic pain.”

• “We recommend alternatives to opioid therapy such as self-management strategies and other non-pharmacological treatments.”

• “If prescribing opioid therapy for patients with chronic pain, we recommend a short duration… Consideration of opioid therapy beyond 90 days requires re-evaluation and discussion with patient of risks and benefits.”

• “We recommend against long-term opioid therapy for pain in patients with untreated substance use disorder.”

• “If prescribing opioids, we recommend prescribing the lowest dose of opioids as indicated by patient-specific risks and benefits…. There is no absolutely safe dose of opioids.”   

• “As opioid dosage and risk increase, we recommend more frequent monitoring for adverse events including opioid use disorder and overdose… Risks for opioid use disorder start at any dose and increase in a dose dependent manner. Risks for overdose and death significantly increase at a range of 20-50 mg morphine equivalent daily dose.” 

My VA colleague, who asked not to be identified, offers the following observations concerning VA policies in treating pain. This is paraphrased to protect the physician from retaliation:   

“The VA simply does not allow me the flexibility I need to manage my patients’ pain. All that is said about honoring our veterans and all the expressions of pride in the level of care the VA provides veterans thus ring hollow. The VA exhibits far greater pride in the percent reduction in opioid prescriptions it has been able to achieve, even giving out awards to physicians who make particularly large contributions to this effort.”

Let’s also compare these highly restrictive policies with a June 2020 letter from the American Medical Association to the CDC’s Chief Medical Officer on the pending revision of the 2016 CDC guideline:

• “We can no longer afford to view increasing drug-related mortality through a prescription opioid-myopic lens.”

• “Some patients with acute or chronic pain can benefit from taking prescription opioid analgesics at doses that may be greater than guidelines or thresholds put forward by federal agencies.”

• “A CDC Guideline only focused on ‘opioid prescribing’ will perpetuate the fallacy that by restricting access to opioid analgesics, the nation’s overdose and death epidemic will end.”

• “The CDC Guideline has been misapplied as a hard policy threshold by states, health plans, pharmacy chains, and PBMs.”

• “It is clear that the CDC Guideline has harmed many patients — so much so that in 2019, the CDC authors and HHS issued long-overdue … clarifications that states should not use the CDC Guideline to implement an arbitrary threshold.”  

The AMA recommended that the CDC should advocate explicitly for the repeal of all federal and state legislation that places hard limits on opioid prescribing.  Another recommendation is that physicians should treat both chronic pain and opioid addiction among the few patients who deal with both issues.  Discharging these patients or forcibly tapering them should no longer be automatic.

AMA is also on public record with the position that so-called “high prescriber” letters issued by prosecutors and state Prescription Drug Monitoring Programs (PDMPs) constitute a witch hunt against physicians and their sickest patients, and is a violation of legal due process.  

Not addressed by either the AMA or the VA is the reality that there are presently no field-tested tools that reliably evaluate quantitative risk of opioid tolerance, dependence or addiction in individual patients. 

As Nora Volkow, MD, and Thomas McMillan, PhD, of the National Institutes of Health wrote in The New England Journal of Medicine:  

“Unlike tolerance and physical dependence, addiction is not a predictable result of opioid prescribing. Addiction occurs in only a small percentage of persons who are exposed to opioids — even among those with pre-existing vulnerabilities... Older medical texts and several versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) either overemphasized the role of tolerance and physical dependence in the definition of addiction or equated these processes (DSM-III and DSM-IV).

However, more recent studies have shown that the molecular mechanisms underlying addiction are distinct from those responsible for tolerance and physical dependence, in that they evolve much more slowly, last much longer, and disrupt multiple brain processes.”  

A further complicating factor for the VA is that we now know beyond any reasonable contradiction that their attempt to restrict opioid prescribing is unsupported by science. 

There is no relationship between rates of opioid prescribing versus rates of overdose-related mortality. The demographics simply don’t work:  Although they have the highest rate of opioid prescribing for pain, seniors over age 62 have the lowest rates of overdose-related mortality.  Youths under age 19 receive the fewest number of opioid prescriptions, but have three to six times higher overdose mortality relative to seniors.

It is arguable that the VA guideline is just as fatally flawed as the CDC guideline, and is responsible for significant numbers of patient medical collapses and suicides among veterans.  Both documents fail conclusively on grounds of both medical science and medical ethics and both should be withdrawn immediately.

Richard “Red” Lawhern, PhD, has for over 20 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids.  Red is co-founder of The Alliance for the Treatment of Intractable Pain.

A Pain Poem: Zooming to Christmas

By Carol Levy, PNN Columnist

‘Twas the night after Thanksgiving
And all through the house
No one was stirring,
The only sound was my oww’s

It took all my strength
To bend and to stretch
In hopes of getting
Myself undressed.

Christmas will be at my house,
Said my Aunt Joan.
Don't anyone worry
All you'll need is a phone.

The Zooming will work,
I said with a grin.
To myself I added,
“This year the pain won’t win.”

So many other times
If I groaned or I grimaced
The others round the table
Gave me a look saying, “You're finished.”

Covid is awful,
Zooming a wonderful thing.
I can take my pills or sit silently,
And move the camera away from me.

Santa is giving me
Quite a gift.
Where the pain can’t be seen,
Or called a grift.

This year I expect better,
I know that sounds weird.
But it seems social distancing and masks
Are gifts to be cheered.

I hope you all have
Pain free holidays.
But even if there is pain,
It can be a time for hoorays.

Family and friends together
So close, yet not near.
Can make it a holiday
We don't have to fear.

If the pain starts to get us,
We won’t have to leave the table.
Just turn the webcam away,
And do what we're able

The point of this poem
Is to find a way
To keep the negative people
From making it a bad holiday.

My hope is for none of the negativity
That’s often brought.
It happens too often,
What getting together has wrought.

My wish to you all
Is the same as old Mr. Claus
Merry Christmas to all,
Full of fun and guffaws.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

Potentiation: How to Make Opioid Medication More Effective

By Forest Tennant, PNN Columnist

The oldest measure to either minimize the dosage or make an opioid more effective has been to add a chemical agent that makes the opioid act longer and stronger. This concept is known as “potentiation” and there are many examples of it throughout history.

Various herbs such as Boswellia (frankincense) were used with opium in ancient times to make it more potent. The Greek physicians Dioscorides and Galien recorded the use of opium combined with cannabis for many therapeutic purposes.

Physicians during the American Revolution titrated alcohol with opium for tuberculosis. The legendary gambler and gunslinger John Henry “Doc” Holiday survived many years with this regimen for his tuberculosis or sarcoid.

British physicians combined aspirin with morphine around the turn of the 19th Century. Later they determined that a stimulant-type drug, such as cocaine, made morphine more effective for the person with severe pain. This was called the Brompton Cocktail, named after the Royal Brompton Hospital in London, where it was used to treat cancer patients in the 1920’s.

Beginning around World War II, American pharmacological companies began combining the opioids codeine, hydrocodone and oxycodone with substances such as aspirin, caffeine, acetaminophen, ibuprofen and phenacetin. Today, the most popular potentiating combinations are acetaminophen with codeine, hydrocodone or oxycodone.

An opioid should almost never be taken alone by a person with Intractable Pain Syndrome. Why? First, you don’t get the full effect of the opioid. Second, without a potentiator, you will need to take a higher opioid dose when a lower one would suffice and have fewer risks.

Every IPS patient needs to identify at least two potentiators that won’t bother their stomach or cause headache, drowsiness or dizziness.

Available Potentiators

• Caffeine Tablet

• Mucuna

• Boswellia

• Gabapentin

• Taurine

• CBD Products

• Adderall

• Methylphenidate

• Dextroamphetamine

• Benadryl

• GABA

Consider switching to an opioid with acetaminophen, such as Vicodin or Percocet, or take a potentiator with your opioids. Don’t take alcohol, marijuana or a benzodiazepine (Xanax, Ativan, Valium, Klonopin) at the same time you take an opioid. Separate the two by at least an hour to avoid over-sedation. 

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Health Canada Is Hiding the Truth About Rx Opioids

By Barry Ulmer, Chronic Pain Association of Canada

True or false? Doctors triggered our overdose crisis. Duped by pharma, they overprescribed narcotic pain relievers and turned innocent patients into addicts. Now we have a black market of stolen prescription drugs — they remain the problem — with a little heroin and street fentanyl mixed in.

True, says Health Canada, whose policy since 2016, made behind the backs of doctors and patients, has been to squeeze prescription opiate supply. Never mind that two million Canadians with serious pain can’t get effective treatment anymore, since most don’t need it anyway.

False, says science. Bad pain can need opiates when nothing else works. By choking legal supply in its haste to curb overdose rates and raise its own ratings, government lit a match to an illicit supply (meth, cocaine, heroin, narcotics) on slow boil since at least 1980. Fierce prescribing cuts now drive a robust black market of cheap heroin and street fentanyl, and a parallel crisis of untreated pain and suicide.

Who’s right? Here are the facts: since 2011, opioid prescribing has tanked while deaths still climb. Street drugs kill. Prescribed drugs don’t. Slashing prescriptions to contain addiction is daft.

Why hide the truth? Why torture people with pain and ignore illicit drugs? Doesn’t government want to combat preventable deaths? For years, we’ve asked Health Canada just that.

They dodged us at every turn. (Just listen to our bizarre 2018 call with the Minister's office.) Eventually, they sent us a list of studies they said justified deprescribing. In June 2019, we sent back our evaluation of the list. It didn’t match theirs. They said they’d get an assessment from independent experts. They didn’t. Then they said they had more research, a big batch; they’d send that, too. They didn’t.

Our Freedom of Information Request

In February, we filed a freedom of information request. We asked for specifics — studies, research, correspondence — that back Health Canada’s claim, as of 2016, that prescribing leads to overdose deaths.

Since we know the medical literature, we knew not to expect much. But this past September, we got 2,928 pages — sort of.  About a third were redacted: long series of pages along with almost all study publication dates, bibliographic details, and online links. It was padded with stuff like a 466-page global report from the UN in three languages. Most of it had nothing to do with what we’d asked for.

Most of it was also published long after 2016 — so it can’t have led to the official start of deprescribing. Only a quarter of it was Canadian, mostly an echo chamber of federally-funded agency reports all quoting each other, with some government-funded guidelines thrown in.

There was no correspondence whatever and little independent research. The bulk of it wasn’t research at all, just a circle jerk of commentary and opinion.  Here’s what we got:

• Mostly US/some UK stuff — commentary, media reports, policy, guidelines, limited research

• Papers using CDC drug abuse stats that CDC corrected and downgraded long ago

• Studies using outdated definitions of “opioid use disorder” that make everyone a “substance abuser”

• Duplicated and even triplicated papers

• Foreign-language papers

• Pre-publication “author manuscripts,” some unproofed and incoherent

• Observational rather than experimental studies

• Papers whose data and fine print directly counter their conclusions

• Papers drawing “new” conclusions by cherry-picking old literature

• Researchers quoting their own work as authoritative

• Papers asserting without documenting the dangers of opiates

• Studies drowning in limitations (which their authors often acknowledge)

• Government statements on generalities, synthesizing other government statements on generalities

• Hand-wringing from six Ottawa-funded agencies, and research these agencies funded in turn

• Serial papers from a handful of Health Canada-preferred researchers

• Much heavily-redacted head-scratching on cannabis

• Studies on acute — not chronic — pain

• Papers blaming patients for their pain

 What on-point studies we got often champion opioids.

Those that don’t typically reiterate prevailing anti-opioid claims, downplay the devils in their details, hype their conclusions, and are compromised by their authors’ conflicts of interest. (These conflicts are usually disclosed, since joining the bandwagon is valued over bias risk.)

On-topic items make our case, not Health Canada’s:

• Half of Canadian adults with chronic pain (a third with “very severe” pain) have suffered for 10 years plus

• Five comprehensive studies of studies (Cochrane reviews) plus a large German review endorse opioids    for five types of chronic pain; four more Cochranes didn’t find useable studies on other pain types

• Two Cochranes plus Canadian research say drugs used to combat substance abuse don’t relieve pain

• Newfoundland’s OxyContin Task Force report on six OxyContin-involved deaths in four years concludes that properly-prescribed pain medications are safe and effective

• With doses now “under the recommended thresholds, most US providers are careful in their prescribing”

• British Columbia, Alberta and Ontario coroners find repeatedly that most overdose deaths involve street fentanyl

• Early prescription use does not predict addiction in Vancouver IV drug users, some of whom develop pain after they begin using

• US data can’t predict addiction and death rates in Canada

• “Dental Rx’s addict young people” is a tooth-fairytale, say three studies. In one, just one of 97,462 kids  who got prescribed opioids after wisdom tooth surgery died within a year — cause not specified

• A review of 38 studies pegs “problematic use” at “<1 to 81%” (it’s entirely redacted)

• Claims of “significant increases” in prescription opioid abuse aren’t quantified. One “huge increase” was of low-dose formulations

• Guesstimates and “author consensus” fill data gaps. An Ottawa-funded researcher’s three papers all call for continued prescription slashing while acknowledging a serious lack of data

• Canadian researchers who routinely disparage opiates for pain tend to be just two or three government- funded teams mining a single public Ontario database to write variations on their theme

• Physical dependence is routinely called “opioid use disorder.” Occasionally, the distinction appears in small print. Clarification by the head of the US National Institute on Drug Abuse is here but redacted

• Three Canadian reports plus one from Seattle say “one-size-fits all” dosing is dangerous and “significantly” hikes overdose risk; cuts to legal supply since 2016 risk destabilization of patients; prescription slashing leads to the end of care

• A 2020 Canadian investigation into bias in “pro-opioid” prescribing guidelines conveniently stops just short of investigating bias in the “anti-opioid” American and Canadian guidelines of 2016 and 2017

• A Canadian sociologist tracks 20 years of news to show how “overprescribing” became a hot button. Our top three news outlets didn’t mention “inadequate pain care” until 2016. “Legitimate users” were either “dependent” or had overdosed on their prescriptions

• “Twenty-five years of pain education research — what have we learned?”: All 13 pages redacted

A descriptive list of all the items we got, and the release itself, are available on request.

What we didn’t get are the many large studies that sandbag Health Canada’s deprescribing policy, like these:

• Risks of developing persistent opioid use after major surgery are tiny

• In a huge sample, mortality risk from overdose is just 0.022% annually

• Toxicology and prescribed medication histories among people experiencing fatal illicit drug overdose in BC

• Illegal street drugs, not prescriptions, now powering opioid abuse

• New survey data confirm that opioid deaths don’t correlate with pain pill abuse or addiction rates 

Health Canada has ignored pertinent studies that don’t suit them and misread others. No careful, independent research endorses deprescribing for any reason, and certainly not as a means to contain overdoses.

Health Canada provided its research only after years of hedging, when we finally resorted to an FOI request— and then only after six months. We believe they had no list and compiled one retroactively, especially since they padded it with off-topic items and with items that postdated their policy.

Prescribing practice and regulation in Canada is now based on the low-quality “investigations” of partisan, government-paid researchers. Canadians deserve better. Now that quality research unequivocally endorses their treatments, Canadians with pain must have effective care restored to them NOW. 

Barry Ulmer is Executive Director of the Chronic Pain Association of Canada, a patient advocacy group

7 Ways to Treat Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) requires a care program custom-made for each individual person, depending on their underlying painful condition and clinical severity.

There are therapeutic, pharmacologic, dietary and physical measures you can take that specifically target the cause of IPS. Step One in finding relief and recovery is to target the cause of the pain, and not just take the “shotgun” approach with only symptomatic pain relievers. A multi-faceted approach is needed.

The 7-component treatment outlined here is to aid patients, families and medical practitioners in formulating an individualized IPS care program

1) Suppression of Inflammation

Underlying Cause: The injury or disease that originally produced the pain may continuously generate inflammation that requires suppression by a variety of means. Common measures to reduce inflammation include anti-inflammatory agents, electromagnetic therapies, local injections or topical agents.

Central Nerve Inflammation: IPS is caused by central nervous system (CNS) inflammation (neuroinflammation) that destroys or damages neurotransmitter systems. Only some treatment agents cross the blood brain barrier and suppress neuroinflammation. Some common agents: naltrexone, ketorolac, indomethacin, methylprednisolone, acetazolamide and  dexamethasone.

2) Sleep Restoration

It is during sleep that the CNS regenerates the neurotransmitters you need for pain control. Adequate sleep is necessary for this to occur. Some common agents: Ambien, trazadone, temazepam (Restoril), amitriptyline, melatonin and Benadryl.

3) Control of Electric Currents

Some drugs now called “neuropathic” normalize electric current conduction, which is erratic due to nerve damage. Some common agents: gabapentin (Neurontin), pregabalin (Lyrica) and benzodiazepines (Klonopin and Valium).

4) Pain Control

The constant pain of IPS is composed of two types of pain: ascending and descending. IPS control requires agents for both types.

Ascending Pain: Some common agents: cannabinoids, opioids, ketamine, clonidine, kratom and naltrexone (if not already on opioids).

Descending Pain: Some common agents: amphetamine salts (Adderall), phentermine, modafinil, methylphenidate, mucuna. 

5) Hormone and Neurotransmitter Supplementation

Groups of hormones now known as neurosteroids, and biochemical molecules known as neurotransmitters, are made in the brain and spinal cord. Their function includes suppressing inflammation, rebuilding damaged tissue and to provide pain control. Analgesic/pain-relieving drugs will not be effective if any neurosteroid or neurotransmitter is deficient. Neurotransmitter testing is now available.

Hormones: DHEA, pregnenolone, testosterone, progesterone.

Neurotransmitters: dopamine-noradrenaline, serotonin, GABA.

6) Anabolic Measures (Tissue Building)

In IPS, tissue degeneration is constantly present due to inflammation. Some genetic connective tissue/collagen diseases such as Ehlers-Danlos Syndrome (EDS) have a built-in, constant tissue degenerating component (catabolic).

Tissue building (“anabolic”) measures are essential to counteract tissue degeneration, and several agents have been identified that do this: nandrolone, human chorionic gonadotropin (HCG), colostrum, deer antler velvet, and amino acid/collagen supplements are recommended.

7) Disease Specific Exercise

Spinal fluid circulates in and around the brain and spine. It washes out biologic waste products such as inflammation. It also brings nutrients to the inflamed and/or damaged nerves for healing.

Exercises that enhance spinal fluid flow include walking, rocking in a chair, and gently bouncing. Practice exercises and stretches that will prevent tissue shrinkage, paralysis and dysfunction of your extremities or other organs that are specific for your underlying condition. 

All seven of these components should be considered for inclusion in an IPS care program. 

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

Living With Chronic Pain and Finding Happiness During a Pandemic

By Victoria Reed, Guest Columnist

These are trying times. For those of us struggling with chronic pain, we know what it means to be tough. We battle our own bodies, doctors and even unsympathetic family members every day. We know what it’s like to struggle and make sacrifices -- because that’s what we have to do to survive.

With the arrival of Covid-19, it has added another layer to our already complex lives. But how do we learn to live with this virus and find happiness in the face of overwhelming adversity? I don’t have all the answers, but I do know what’s working for me and what brings me joy. 

I have lived with chronic pain for all of my adult life. My first problem began during my teens, when I developed persistent, unexplained pelvic pain. After many doctor visits and three exploratory surgeries, a sympathetic and kind OB/GYN reproductive endocrinologist finally gave me the answer: endometriosis.

Receiving treatment for endometriosis, which included hormone therapy and surgery to remove adhesions, didn’t take all of the pain away, but it did restore my fertility and allow me to eventually have babies.

Then, during my mid 20’s, my back suddenly went out. I had had no falls, accidents or injuries that I could recall. That would set the stage for another type of pain to take over my life, which there really was no cure for. I got a diagnosis of degenerative disc disease at age 27.

I managed the pain with physical therapy to tighten my core muscles, regular use of ice and heat, rest and pain medication. I also had a caudal nerve block. But by age 32, I began having new symptoms of joint swelling in random joints. Back to the doctor I went!

During that visit with a rheumatologist, I had requested to be tested for rheumatoid arthritis (RA) because my twin sister had recently received that diagnosis. Sure enough, blood tests confirmed that I did indeed have antibodies specific to RA. For those of you who have RA, you know that it is.a.beast.

VICTORIA REED

Over time, beating back RA became like a full-time job; take this medication, take that medication, inject this, apply that. Eventually, after trials of several expensive biologic medications and DMARD’s (disease-modifying antirheumatic drugs), we found one that worked. I get it by IV infusion about once a month at the Cleveland Clinic.

Biologics suppress the immune system to help bring down the inflammation that damages the joints, heart and lungs. RA also causes chronic, debilitating fatigue. It’s like you haven’t slept in a month and got run over by a truck, not like the tiredness you feel when you only had a few hours of sleep the night before.

Then a year or two later, during a routine visit with my rheumatologist, she listened to me as I described being sore all over. After a thorough exam, I received the diagnosis of fibromyalgia, another chronic and painful condition.

Here we go again! When will it stop? Some people might just want to give up, but I had three kids to raise, and it was important for me to fight for my health for them. My 18-year marriage had become a casualty and giving up was not an option!

With the diagnosis of fibromyalgia, I had to adapt to the reality that I was never going to be free of pain and fatigue. They had become my constant companions. I managed, and my kids grew up watching my struggle. They are now 16, 19 and 21 and are happy, well-adjusted individuals, but they’ve had to watch me deal with pain their entire lives. 

Since it was obvious that my body hated me, why would it stop assaulting and insulting me? Guess what? It did not. I have since been diagnosed with FOUR more autoimmune and related disorders: Hashimoto’s thyroiditis (thyroid attack), Sjogren’s syndrome (mucous membrane attack), Raynaud’s phenomenon (small artery abnormality) and the loveliest of all: LADA (Latent Autoimmune Diabetes of Adulthood), a form of Type 1 diabetes that is primarily treated with insulin.

Fast forward to 2020. Covid-19 arrives? No problem! I’m used to challenges. I’m used to pills, needles, pain and fatigue. Wearing a mask is the least of my worries, as I’ve been fighting to stay alive and healthy for all of my adult life and a few of my teenage years.

These days, I make time to do the things that please me, such as riding my 2-wheel Italian scooter, gardening, camping and traveling. I even learned how to ride a motorcycle at age 50! I do not dwell on my pain.

Living in northeast Ohio limits year-round sunshine, but when it is warm and sunny outside, that’s where you’ll always find me! Peace comes when I am at one with nature. Happiness is a state of mind. We can choose to be miserable or we can choose to be happy, and despite my health challenges, I am grateful and thankful for the blessings that I do have.

So, to all of you pain warriors, hang in there! Look for and hold onto the positive. Surround yourself with positive people. Cut out those friends and family that are negative energy (I did). Make time to do things you enjoy. It’s not easy, but it is possible to find peace and happiness in the face of overwhelming adversity.

Let’s hope that Covid-19 will someday be a thing of the past. But if not, we’ll be alright. 

Victoria Reed lives in Cleveland, Ohio.

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

Help Us End the Suffering of Chronic Pain Patients

By Anne Fuqua, Guest Columnist

In 2014, a good friend of mine suffered a heart attack after his opioid pain medications were stopped abruptly. This was despite the fact his records showed that he was a responsible and compliant patient who worked full-time.

Following his death, I started logging the deaths I became aware of on a spreadsheet. Initially, this was just my version of a memorial. I have pain too, and at times wondered if I’m going to wind up on this same memorial.

Every month for the past six years, I have had to add at least one more name to that list, sometimes multiple names. I knew many of these patients and considered them to be my friends.

Some had no quality of life and chose to end their suffering. Some fought to live with all the strength they could muster, but fell to heart attacks, strokes and ruptured aneurysms that occurred after their medication was involuntarily tapered, stopped abruptly or during periods of severe uncontrolled pain. 

For others, the cascade of physiologic changes that help our bodies respond to stress can become harmful in themselves if left unchecked, causing effects that may shorten life even if the person does not suffer one specific event like a heart attack or stroke.

ANNE FUQUA

Still others were desperate to live but also desperate to get relief. They went to the illicit drug market when they failed to get the surgery, physical therapy or medication that they felt could improve their quality of life. 

There is a name for abandoned pain patients, left to fend for themselves. Dr. Steve Passik coined the term “opioid refugee” in 2012. Tragically, some of these opioid refugees have died in their quest for relief. They sought relief that would allow them to get restful sleep, enjoy quality time with loved ones, and give them the ability to fulfill responsibilities to their family and society.

CSI Opiods Survey

In 2016, I was fortunate enough to become friends with Dr. Stefan Kertesz, a physician I respect immensely. Dr. Kertesz and his colleague, Dr. Allyson Varley, assembled a team of some of the most respected healthcare providers and thought leaders in the field to advise and support their work. Their goal is to understand what exactly happens when a person with chronic pain dies by suicide. 

After over 2 years of tireless efforts to obtain funding, they have begun a pilot project, a survey of people who have lost someone to suicide. I am helping them understand how to reach out to the people who have lost loved ones. The project has the support of the Department of Medicine at University of Alabama at Birmingham. 

If you would like to know more about Drs. Varley or Kertesz, I would encourage you to Google them so you can see for yourself the quality of their work and their dedication to underserved populations. You may also want to check out Dr. Kertesz’s Tedx Birmingham talk on suicides in the pain community.

Our initial work is a pilot study, We wish to learn how many surviving family members and close friends are willing to come forward and complete a survey after losing a loved one to suicide. For now, we are examining suicides where the patient who died had experienced a change in their opioid medication prior to their death, whether it was decreased, increased or stopped. 

If you have lost a loved one, there are two ways that you can participate. We have a brief online survey you can complete that’s entirely confidential. You can take the survey by clicking here or on the banner below. If you are unable to complete this survey all at once, click “save and return later” and you will be able to save your responses and return to the point you left off at a later time. 

If you would feel more comfortable speaking with someone, you can call toll-free (866) 283-7223. There is no payment for doing the survey. Official study information, approved by a University Institutional Review Board, is online at the survey website.

We may eventually get funding to study other types of deaths. We are asking anyone who has lost a loved one to suicide following a change in opioid dose to consider responding to our survey. If enough people do come forward, it will help to make the case that these terrible losses need to be studied closely, rather than ignored.

I recognize this initial effort has a narrow focus. There are many grieving families who want their loved one’s death to be counted even if it was not a suicide. The way the survey is set up, if you report that the person you lost did not die by suicide, it is going to ask for your contact information. You can provide the research team with your contact information so you can be notified about future studies. 

I still keep my own list of deaths as I learn about them, my memorial. It’s important to know that my list is private. Dr. Kertesz and Dr. Varley do not take names off my list. That’s because university research can only be done with consent. If you have a name for my list, whether they died by suicide or not, contact me and I will add your friend or loved one. I make statistics about the deaths -- but no names -- available to policymakers and patients involved with advocacy work. The list itself will not be made public. 

If you are like me, you are apprehensive about what will happen next. I think most of us are exhausted from the fight for better pain care and desperate for change. Change cannot come soon enough when you are the one who is suffering. This is the first step towards ending needless suffering and loss of life.

Anne Fuqua is from Birmingham, Alabama. She lives with her cat Gabby and has primary generalized dystonia and arachnoiditis.

No Blessing Is Too Small

By Mia Maysack, PNN Columnist

People have asked me and goodness knows, I ask myself sometimes: How am I going continue living this life?  

Please don't ever think I made it to this place overnight. Blood, sweat and tears are only the beginning of what it has taken. There aren't enough words to properly convey or explain what it's like to be in pain each moment of every day. Unless that's relatable to you, others just don't get it because they ain't got it, right?  

The ongoing situations I experience sound insane when I attempt to explain them. It's not logical to never have a break from discomfort; for your insides to feel as though they're climbing their way out, while the outside shrivels into a condensed version of identity that exists some days more than others, and at some points seems to disappear altogether.  

My conditions, whether we're referring to my relentless hurting head or the agony of damaged nerves, cause symptoms far beyond the ailments themselves. Persistent exhaustion has brought me to tears because the extent of the tiredness legitimately frightens me, convinced I must be slowly dying. But isn't that ultimately what we're all doing?

That acknowledgement isn't meant to be grim, but rather to shed a light on what has made it possible for me to even be here to write this:  Gratitude. Even for the smallest blessings.

Although I'm thankful to have made it to see another day, it began at an unreasonable hour this morning. As I lay there defenseless, a brutal migraine attack wreaked havoc out of nowhere, causing a wide array of less than positive emotions while I attempted to fight back.  Those are the moments when I wonder how I'll ever continue to possess what's needed to survive. When I cannot even manage to get myself out of bed.

Pre-COVID, most people smirked at the idea of “lounging around all day” and how nice it must be. So, maintaining that same logic, next time you're ravished with a relentless flu or tummy bug, just reflect on how nice it is to lie around and you'll feel much better. Not.

Remain mindful as to what you wish for and the way you judge a life you haven't lived. I don't even get a shot at normalcy, because the trigger of stabbing pains has already been pulled as I wake to attacks and flare ups. 

We continue on despite our pain. If we didn't, we obviously would no longer be here. There are times I contemplate slamming my head against the wall. Considering it already feels as though I have, that seems counterproductive.  

I'm overjoyed for whoever can continue to carry on, there are just days that I can't. Part of how I had even gotten myself this ill is by pushing myself too far. Singlehandedly operating a business, attending school and successfully running a hospital floor tending to the needs of others.

I'm no stranger to hard work; incurable ailments and a lifelong illness are the toughest jobs I’ve ever had!  Self-care wasn't something that existed in my world. Despite the fact it required hitting a wall first, learning self-care to tend to myself properly and unapologetically has been a gift that keeps giving.    

A difficult aspect of all this for me is that others seemingly forget who you were. I'm seen in a light now, almost as if I'm not living up to my potential and definitely pick up on vibes that being chronically ill somehow makes me "less" of a person.

I do not accept that and here's why: Anyone that has a negative opinion regarding your situation either cannot relate or doesn't understand, so always consider the source. I am thankful for their health and celebrate that mine isn't any worse.  

As people enduring these circumstances, we experience pain levels that would bring others to their knees. Free yourselves from judgement of self and others. Remain prideful. We know what it has taken to make it to this point and only we know what's best for us. My choice is to continue inching closer toward acceptance of the current moment and remain faithful in future possibilities.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Intractable Pain Syndrome Has 2 Kinds of Pain

By Forest Tennant, PNN Columnist

A major reason that persons with Intractable Pain Syndrome (IPS) experience such misery is that when pain is the constant, 24/7 variety, it has two parts: ascending and descending pain. Both types need to be treated for relief.

Picture your body running on electric currents. In your house, electric currents are conducted by wire. Although there is no good reason to avoid the term “wire” when it comes to the human body, we usually refer to our biologic wires as nerves, nerve roots or neurons.

Unfortunately, any disease or injury to one or more of our “wires” blocks the electric currents that normally flow through the nerves, nerve roots or neurons, and diverts electricity into the surrounding tissue to produce inflammation and pain.

Ascending Pain is caused when pain electricity travels from the disease or injury site up the nervous system to the brain. This is the most common type of pain. For example, if you have a sore knee, pain signals travel from the knee to the brain.

Descending Pain is caused when severe pain from any number of diseases and injuries sends so much electricity into the brain and spinal cord that it accumulates. Areas of inflammation develop and destroy and/or damage the dopamine-noradrenaline neurotransmitter systems that control descending pain.

The excess electricity from these inflamed sites travels down the nervous system into muscles, skin, tendons, joints, fatty tissues, and the large and small peripheral nerves. Small nerve endings in the skin can “burn out” due to all the descending electricity and a skin biopsy will probably show small fiber neuropathy.

How do you know if you have descending pain? You have muscle aches all over which are often labeled as fibromyalgia. You hurt everywhere and experience episodes of overheating, sweating, and cold hands and feet, often at the same time!

Tips to Reduce Descending Pain

The critical point is that usual pain treatment only treats ascending pain, not descending pain. Opioids, antidepressants, anti-inflammatories and muscle relaxants do not usually do much for descending pain.

Each person with IPS must adopt a few simple but specific medical, physical, and dietary measures to attain some relief and recovery from both kinds of pain. You must maintain your dopamine-noradrenaline neurotransmitter systems daily, or you will have increased pain and misery, and believe that more drugs like opioids are the answer.

The understanding of blocked and diverted electric currents has led to the identification and labeling of a group of treatment agents that help normalize electric currents. These are known as neuropathic agents. The neurotransmitter most responsible for the proper conduction of electric currents is called gamma aminobutyric acid (GABA for short). It is synthesized by the body from the amino acid glutamine.

Neuropathic medications include gabapentin, pregabalin, carisoprodol, topiramate, duloxetine, and benzodiazepines.

In addition to neuropathic agents, there are simple “age-old” remedies that still work for most people because they help modulate electric currents so that they don’t divert, accumulate, and cause more inflammation and pain:

• Water Soaking

• Epsom or Herbal Salts

• Magnets

• Acupuncture

• Copper Jewelry

• Walking Barefoot

• Dry Needling

• Petting Fur

• Magnesium

Every person with IPS needs a daily program of neuropathic agents and age-old remedies to minimize the consequences of accumulated electricity.

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and is currently sponsoring PNN’s Patient Resources section.  

The Gaslighting of Pain

By Ann Marie Gaudon, PNN Columnist

It’s become a buzzword. “Gaslighting” is a term used to describe the repeated denial of someone’s reality in an attempt to invalidate them. Its origins can be found in a misogynistic 1944 film showcasing a husband trying to convince his wife that she is insane.

To be clear, gaslighting is a form of emotional abuse and is not exclusive to romantic relationships. This attempt to manipulate a person’s reality is systemic and can be seen in social media, politics, cable news and even healthcare. When a medical professional invalidates, dismisses or even leads a patient to question their own thoughts and experiences, that is traumatic and abusive.

It is hardly news that women are more often told than men that their pain and other symptoms are emotionally-based and psychogenic: not real. Years ago, I attended a lecture given by a young woman detailing her experience with significant knee pain. She had seen several doctors to no avail; she was told the pain was all in her head. One doctor said the cause of her pain was due to “wearing her jeans too tightly and this is a common problem with teenage girls.”

She wondered out loud if this would have been her diagnosis if she were a male teenager. Eventually she did obtain a correct diagnosis for her knee pain which was osteosarcoma – the very same cancer that Canadian athlete and national hero Terry Fox succumbed to.

 A 2015 study interviewed women who had been hospitalized due to a heart attack but were reluctant to seek medical care, citing anxiety about “being perceived as complaining about minor concerns” and “feeling rebuffed or treated with disrespect.”

Since being diagnosed and treated for the female-only disease of “hysteria” in the 19th century, women’s emotions continue to be used as the cause for all that ails them. This inherent gender bias in healthcare is another form of gaslighting.

“We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” Linda Blount, president of the Black Women’s Health Imperative, told BBC Future. “Their bias absolutely makes its way into the exam room.”

Your chances of being subjected to medical gaslighting increase if you are not white, cisgender or able-bodied -- essentially any marginalized group. However, do not be misled into thinking that all white males will be cared for with dignity and medical acuity. I have had conversations with men who have been dismissed time and again, and had their substantial suffering completely invalidated with the likes of “that [diagnosis] would never bother anyone.” Or they cannot even get a diagnosis and so are labelled as malingerers.  

‘You’re Making This Up’

At times, I am the only person in a patient’s life who actually has validated their pain, because their family does not believe them either. “You’re making this up” or “You’re not getting better because you don’t want to get better” are common themes told to my victimized clients. I watch as their teary eyes fluctuate hurriedly from boring into mine to staring down at the floor as they question their own sanity and if their pain is indeed real.

What happens next can lead to disastrous results. When physicians inappropriately conclude that a patient’s symptoms are all in their head, they delay a correct diagnosis – just like the young woman with knee pain. This can be especially dangerous for patients with rare diseases who already wait longer to be diagnosed as it is. According to a survey of 12,000 European patients, receiving a psychological misdiagnosis can make a proper diagnosis of a rare disease take up to 14 times longer.

The pain patients in my practice (as well as myself) have been told it’s just normal aches and pains, there’s nothing wrong with you, condescended to, yelled at, disbelieved, laughed at, mocked, called names, and dismissed in all manners of arrogance and ignorance.

We’re on the cusp of 2021 and I am still telling my pain patients not to go to any appointment alone because that makes you even more vulnerable to mistreatment. Another person in the room with you can temper abusive treatment by being there as a witness. No one suffering should have to go to any lengths to receive the care they deserve. However, that is reality.

We’ve come too far just to lie down and accept medical gaslighting. Do what you can to defeat this. Find a medical provider that you can connect with; someone who listens, is honest, and frank with you. I have had the privilege of having one physician who completely fits the bill and am now searching for the next.

Become your own advocate. Do not put up with someone who is condescending, arrogant, or mistreating you – fire this person. You and your health need to be taken seriously. Watch for biases and do report a gaslighting doctor. Go to the clinical supervisor, board of the hospital, and the regulating college or agency. Be direct and honest about how you were treated and demand they take action.

There is always a legal option as well if you were harmed physically and/or mentally by the grievous actions of a gaslighting physician. Whatever decision you make, above all else, do not accept this abuse. We must all speak up and speak out!

“Nothing strengthens authority so much as silence.”
Leonardo da Vinci

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

A Grumpy Old Lady in Pain

By Rochelle Odell, PNN Contributor

As I lay once again, in pain, waiting for my small dose of pain meds to kick in, I stare at the dark ceiling, asking, begging God to please help me. There is nothing but silence around me except for the low volume of my TV.

I find my patience, what little I had, is now gone. I find myself writing a post on Facebook that perhaps did not have to be as blunt as it was or as challenging -- as even I recognized it to be. 

Am I judging others in this battle? Has my nearly 28-year battle with CRPS and it's incessant, never ending pain turned me into someone I am not thrilled about? Am I judging good people, in pain like me, too harshly at times?

I find some online comments are made with little thought or logic by others. I know and tell people there is only one person or deity that can judge anyone and that's the man upstairs, God. And in all honesty, I don't have the right to criticize anyone for what they say or do, except for liberals. Okay, cardinal rule, don't bring politics into our battle for pain relief. I am sorry.

Why do those who obviously haven't read an article or post refuse to admit that their response makes no sense? I spend a lot of time reading articles, but many don't and I feel if you can't find the time to read, don't comment. There are times I may read a post that really galls me and I respond critically, then I think of those I may have upset.

Why did I do or say what I did? I guess because like all in pain, I am tired. Tired of hurting, tired of fighting to get pain management back to where it should be for all. Especially tired of the few wannabes who think it's cool to be part of the pain community -- a community we would all give anything not to be a part of.

The very few I do challenge proudly boast of the ever-growing list of ailments that they wear as a badge of honor. They proudly state no doctor will agree or diagnose them with any of the pain diseases that they have self-diagnosed. You know the type. They have gone down the list of symptoms, convinced they surely must have it.

For shame. They honestly believe they have been wronged. Those people bother me, because there are many who suffer unrelenting pain from diseases physicians have actually diagnosed. I have been diagnosed with several and I want no part of them. I do try to stick with the CRPS only. It was the first and worst of what ails me.

ROCHELLE ODELL

Adding more or reading off what I call our laundry list of ailments won't change my low dose of opioid pain medication. My pain management PA is very sweet and compassionate, but we all know that high doses of opioids are nothing but a memory. A memory of when we used to function. I want my life back without pain and without needing medication. We all want our lives back... period!

I have my life friends who I’ve known since childhood, and new friends I’ve met in the pain community. Like my family, they mean the world to me. Each person brings something I may need or I bring something to them that they need. Pain brought us together. And if it weren't for pain, our paths would never have crossed.

My life has spanned seven decades, sometimes flying by and other times dragging by ever so slowly. The adventures I had, the experiences, I wouldn't trade for anything. I am thankful to have experienced what I did. Too many pain patients don't, especially younger ones. All they know is pain. They can only dream of traveling the world like I did. Those of us who had a life before pain were able to experience places, people and things. The memories are bittersweet.

I suppose at 73 that I am old, very opinionated and faced with the reality God can come knocking on my door anytime. Although for some reason the age of 93 is set in my mind when he will take me. Can't imagine living in this pain for twenty more years.

I have learned in this pain journey that I don't have to win every argument. I don't have to win every point. That if I ignore an annoying Facebook post and simply log off, I don't develop a killer stress headache trying to prove I was right. Being right all the time makes for a probably obnoxious person. I don't want to be that way, I really don't, but it is my reality, my life, me.

When thinking of love, I have loved and have been in love. Do I want to be married again? Odds are no. Like most, I don't want to live my golden years alone but I have become so set in my ways, set in my routine, set in how I choose to live any day my way. If I want to wear my jammies all day and not comb my hair, I can. If another person was around, I would have expectations placed on me I may not want.

But I also get so tired of battling pain with no real source of help I can depend on. I have only me to depend on. I am not the only one alone and we do hurt the most.

If my pain is severe and I want to cry, I can, with no explanations. Although if I do cry my little sidekick Maggie, an 8-year-old dachshund, gets right next to my face crying with me. Don't have any humans that sit next to me and cry with me, although I know of some sweet pain friends who would if I asked. Little Maggie has been so vocal. I look at her and ask do I really sound that bad, that pathetic? Yes!

I don't want to come across as judgmental or too critical. I don't want to be the mean old lady in the neighborhood. But you know what? Living in pain, alone for close to 28 years, well, if the shoe fits...

If my comments come across as mean, try to remember pain has changed us all. I see that in the pain community. 'A' can't stand 'B' and 'B' is thoroughly disgusted with 'C.' Meanwhile, 'D' shakes their head asking why? Why do we say and act in ways that may not be nice?

Guess I will set the timer on my TV, pray to God one more time to please take my pain away, and close my eyes hoping sleep comes, if even for a couple of hours. And pray those around me understand why this grumpy old woman says what she does.

Rochelle Odell lives in California.

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

COVID-19 Vaccines May Be Risky for People with Chronic Illness

By Roger Chriss, PNN Columnist

Covid-19 vaccine researchers reported good news this week. Pfizer and Moderna both announced encouraging efficacy data and will soon submit applications to the Food and Drug Administration for emergency use authorizations.

Moderna reported that its vaccine was 94.5% effective in a Phase 3 trial of more than 30,000 participants. Similarly, Pfizer’s vaccine had an efficacy rate of over 90 percent, with only 94 confirmed cases of COVID-19 in a study that included over 43,000 volunteers.

Both of these vaccines are based on mRNA technology, a genetic approach to vaccines that directs protein production throughout the body. AstraZeneca took a more conventional approach with its vaccine and just reported promising Phase 2 trial results.

There are of course important questions to sort out, including long-term efficacy and safety. This latter point is particularly important for people with chronic illness.

The vaccine trials have been run with volunteers, who may be more health conscious and healthier than the population at large, and people with specific disorders are excluded. As a result, safety issues for people in treatment for active cancer, people with autoimmune diseases, and people with rare genetic disorders are unclear.

“We also don't know for sure whether this vaccine is safe and effective in different types of people, such as pregnant women, the elderly, or those with a chronic illness,” MedicalXpress reported. “Once a vaccine is deployed ‘in the real world,’ we'll start to understand its true effectiveness. In practice, this is likely to be different to its efficacy in highly controlled clinical trials.”

Specific disorders sometimes require avoiding certain vaccines. The CDC maintains a comprehensive list of vaccine contraindications and precautions, including a recommendation that live virus vaccines “should not be administered to severely immunocompromised persons.”

The CDC cautions that anyone with a “weakened immune system, or has a parent, brother, or sister with a history of hereditary or congenital immune system problems” should talk to their doctor before being vaccinated. People who have had any other vaccines in the past 4 weeks should also consult with a provider first.  

The American Cancer Society recommends against live vaccines for patients getting chemotherapy or radiation treatment.

“In general, anyone with a weak immune system should not get any vaccines that contain live virus. There are a few vaccines that contain live viruses, which can sometimes cause infections in people with weak immune systems that can become life-threatening,” the Society warns.

Autoimmune disorders are also complex. The Hospital for Special Surgery warns that live vaccines “are not recommended for lupus patients, due to the increased risk of infection from the vaccine.”

Most vaccines are very safe for most people. But vaccine safety presents a big question for a small group of people with specific risk factors like cancer or chronic illness. At this point there is simply no safety data on COVID-19 vaccines in such people. Hopefully there will soon be clear answers.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.