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Atomic Imprint: A Legacy of Chronic Illness

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atomic imprint- chronic illness

In a sense, my complicated health history began a decade before I was born. In 1951, on a chilly pre-dawn morning in Nevada, my father-to-be crouched in a trench with his Army comrades and shielded his eyes with his hands. Moments later, an atomic blast was detonated with a light so brilliant that he could see the bones in his hands through his eyelids, like an x-ray. The soldiers were marched to ground zero within an hour, exposing them to massive amounts of radiation. My father suffered many physical issues and died of chronic lymphocytic leukemia at 61 – a far younger age than usual with this disease.

Many of the soldiers exposed to atomic tests and military radiation cleanup efforts paid dearly with their health, and the legacy was passed on to their offspring in the form of miscarriages, stillbirths, deformities, retardation, childhood cancers, and chronic health issues. I never wanted children, in part because I was concerned that my own genes were affected by my father’s radiation exposure.

Early Markers of Ill Health

Physically, I didn’t feel right as a child. I had mononucleosis as a baby and needed a prednisone shot to get well. I was sick often and lacked stamina. I had mono again in high school and relapsed in college.

I fared well as a young adult, but then hit a wall in my mid-30s when I suddenly became chronically ill with digestive issues, insomnia, brain fog, and fatigue. A hair test revealed off-the-charts mercury poisoning, so I had ten fillings replaced and detoxed. All my hormone levels crashed, so I went on bioidentical hormone replacement therapy for a time. I recovered quickly but adrenal and thyroid hormone support were still necessary. I even fared poorly with the ACTH cortisol stimulation test to assess for adrenal insufficiency (“adrenal disease” beyond so-called “adrenal fatigue”).

In 2001, a DEXA scan revealed I had osteopenia at just 40 years old and I tested positive for elevated gliadin antibodies, a marker for celiac disease, the likely cause of the bone thinning. I went gluten-free and began lifting weights – thankfully, my bone density resolved. I shifted away from a vegetarian diet and gained muscle mass and energy.

Over the next several years, I had bouts of “gut infections,” resolving them with herbal antimicrobials. About a decade ago, the dysbiosis flares became more frequent and difficult to resolve. I tested positive again for mercury. This time I did the Cutler frequent-dose-chelation protocol and reduced my mercury burden to within normal levels according to hair tests.

A Labyrinth of Health Issues

My health issues were becoming more numerous, complex, and difficult to manage as I grew older. Besides the persistent sleep and digestion issues, I often had fatigue, pain, bladder pain, urinary frequency, restless legs, migraines, Raynaud’s, chilblains, and more. Managing all these symptoms was a real juggling act and rare was the day that I felt right.

As I searched for answers, I turned to genetic testing, starting with Amy Yasko’s DNA Nutrigenomic panel in 2012 and then 23andMe in 2013 to learn which “SNPs” (single nucleotide polymorphisms) I have. A Yasko-oriented practitioner helped me navigate the complexities of the nutrigenomics approach – that is, using nutrition with genetic issues.

I learned that genes drive enzymes that do all the myriad tasks to run our bodies (which don’t just function automatically), and that certain vitamins and minerals are required to assist the enzymes, as specific “cofactors.” Genetic SNPs require even more nutritional support than is normal to help enzymes function better. So my focus shifted toward using basic vitamins and minerals to support my genetic impairments. I now understood that I needed extra B12, folate, glutathione, and more. I began following Ben Lynch’s work in elucidating the MTHFR genetic issue, as I had MTHFR A1298C.

Also in 2013, given my struggle with diarrhea, I was diagnosed with microscopic colitis via a biopsy with colonoscopy. In 2014, I learned about small intestinal bacterial overgrowth (SIBO), which gave me a more specific understanding of my “gut infections,” and tested positive for methane SIBO. I worked with a SIBO-oriented practitioner on specific herbal treatments with some short-lived success.

At the end of 2014, I learned that I have Ehlers Danlos Syndrome (EDS, Hypermobile Type), confirmed by a specialist. I came to understand that my “bendiness” likely had implications in terms of chronic illness, and I saw my bunion and carpal tunnel surgeries in a new context, as part of this syndrome.

Even with these breakthroughs in understanding, I still relentlessly searched deeper for root causes.

Genetic Kinetics

In 2018, Ben Lynch published Dirty Genes, focusing on a number of common yet impactful SNPs.

I learned that I had NEARLY ALL of these SNPs – NEARLY ALL as “doubles” and even a “deletion.” (Deletions are worse than doubles; doubles are worse than singles.) Researching further, I had doubles in many related genes with added interactive impacts. Typically people might have just a few of these SNPs.

Understanding my “dirty gene” SNPs revealed that I could be deficient in methylation, detoxification, choline synthesis, nitric oxide synthesis, neurotransmitter processing, and histamine processing. Each of these SNPs could potentially impact sleep, digestion, and much more in numerous ways. Now I potentially had a myriad of root causes.

Lynch warns people to clean up their health act before supplementing the cofactors, whereas I’d cleaned mine up years prior. Sadly, I found only limited improvements in adding his nutritional protocol. Suffice it to say I felt rather overwhelmed and disheartened.

But at the same time, I gained vital and necessary insights. I now understood why I had mercury poisoning twice: detox impairments. I understood why I had Raynaud’s, chilblains, and poor circulation: nitric oxide impairments. My migraines could be histamine overload. I needed high levels of choline for the PEMT gene to prevent fatty liver disease and SAMe for the COMT gene. Much was yet still unexplained. So I relentlessly soldiered on, following every lead, clue, and a new piece of information.

Later in 2018, a friend who also has EDS encouraged me to learn about Mast Cell Activation Syndrome (MCAS), as many with EDS also have this condition. A few weeks later, I had a three-day flare of many issues, which prompted me to delve into the MCAS world, which was just as complex as the genetic approach. In working with an MCAS specialist, I honed in on three supplements, quercetin, palmitoylethanolamide, and luteolin, to help stabilize mast cells, which improved my bladder pain, bone pain, migraines, fatigue, and generalized pain. This was the culmination of months of research and work. All of this points to further genetic involvement, even though I lack specifics.

Downward Spiral

Twenty-nineteen brought further insights. I integrated circadian rhythm entrainment work. I tried a low-sulfur diet, suspecting hydrogen sulfide SIBO, which made me feel worse; and I began taking dietary oxalates somewhat more seriously after testing positive on a Great Plains OAT test. I did glyphosate and toxicity testing, which provided a picture of my toxic load. Testing also indicated high oxidative stress and mitochondrial issues (very interrelated). Hair Tissue Mineral Analysis (HTMA) testing, with the assistance of a specialist, helped me understand my mineral status and to begin rebalancing and repleting.

In 2020, I took a hiatus from all this effort, during which time I turned my attention towards personal matters, but 2021 has been a doozy in redoubling my health efforts. My digestion had worsened, so I focused on this area. I learned about sucrase-isomaltase deficiency, a lack of certain enzymes to digest sucrose and starch. I hadn’t tolerated sugar and starch for years, and I found I had a SNP for this condition. In January, a zero-carb trial diet helped me feel much better, so I continued. I tested positive for hydrogen sulfide SIBO, and I wrestled with this “whole-other-SIBO-beast” – in February trying again the low-sulfur diet and again feeling worse. Combining the zero-starch and low-sulfur diets left few options. Despite all my best efforts, I experienced a downward spiral with a loss of appetite, nausea, and vomiting every few days.

Discovering Thiamine

Around this time, I read an article about low thiamine (Vitamin B1) lowering intracellular potassium – I had been trying unsuccessfully to raise my potassium level in my HTMA work. I began following author Elliot Overton’s articles and videos on thiamine deficiency and oxalates. I was finally persuaded to take oxalates seriously. I then read the definitive book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition” by Drs. Derrick Lonsdale and Chandler Marrs. I learned how B1 was key in many processes involving energy, digestion, and much more. I found that I had multiple SNPs in the B1-dependent transketolase gene, which is pivotal in several pathways. I gained some understanding of how all this related to some of my other genetic impairments, and why I might need high dose thiamine to overcome some issues.

All this was quite a revelation for me. It fit perfectly with my emphasis on vitamins and minerals to assist genes…but why hadn’t I learned of B1’s significance sooner?

In early March, I began my thiamine odyssey with 100 mg of thiamine HCL, upping the dose every couple of days. At 300mg HCL, I added 50 mg of TTFD, a more potent and bioavailable form of B1, then continued to up the TTFD dose every few days.

Similar to my experience with other vitamins, I was able to proceed rather quickly in dose increases. Many other people are not so fortunate and must go much more slowly. I already had in place most of thiamine’s cofactors (such as glutathione, other B vitamins, and methylation support) – so perhaps this helped me proceed more readily. Without these cofactors, peoples’ thiamine efforts often fail.

Magnesium is one of the most important thiamine cofactors, and for me, the most challenging. My gut cannot handle it, so I must apply it transdermally two or more times a day. At times, I had what I interpreted as low magnesium symptoms: racing and skipping heart, but these resolved as I continued.

Additionally, one must be prepared for “paradoxical reactions.” Worse-before-better symptoms hit me the day after thiamine dose increases: gut pain, sour stomach, headache, fatigue, and soreness.

My symptoms improved as I increased the dosing. When I added 180 mg of benfotiamine early on, my bit of peripheral neuropathy immediately cleared. This form of B1 helps nerve issues. As I increased my thiamine dosing, the nausea abated, my appetite came roaring back, and gastritis disappeared. Diarrhea, fatigue, and restless legs improved. I was able to jog again. My digestion improved without trying to address the SIBO and inflammation directly; the strict keto and low oxalate diets may have also helped.

In June, I attained a whopping TTFD dose of 1500 mg but did not experience further resolution beyond 1200mg, so I dropped back down. At 1200mg for a month, a Genova NutrEval test revealed that I was not keeping pace with TTFD’s needed cofactors, especially glutathione and its substrates. Not too surprising, given my malabsorption issues and my already high need for these nutrients. I dropped the TTFD to 300 mg, but quickly experienced fatigue. I’m now at 750 mg, which is still a large dose, and clearly, there is more to my situation than thiamine can address. I still have diarrhea and insomnia, and continue working to address these.

The Next Chapter

With TTFD, its cofactors, and my new gains in place, I’ve turned my attention towards a duo of genetic deletions that I have in GPX1 (glutathione peroxidase 1, one of Lynch’s dirty genes) and CAT (catalase). Both of these enzymes break down hydrogen peroxide (H2O2), a byproduct of numerous bodily processes. This unfortunate double-whammy causes me a build-up of damaging H2O2 and lipid peroxides – in other words, oxidative stress, a major factor in mitochondrial impairment, many diseases, and aging. This might be one of my biggest and yet-unaddressed issues, and I am digging deep into the published medical literature. This new chapter is currently unfolding.

I believe these two deletions are related to my father’s radiation exposure, for reasons beyond the scope of this article. But what about all the other SNPs? Many questions remain unanswered.

All my gains have been so hard-won, involving much research, effort, and supplementation. Yet what other options do I have, besides playing whack-a-mole and spiraling downward? Looking back, my improvements have been substantial, given the multitude of issues I’ve had to deal with. Perhaps now at 60, my life can start to open again to more than just self-care.

I hate to think of where I would be now, had I never come across the thiamine deficiency issue. I believe a number of factors had driven my thiamine status dangerously low earlier this year, such as malabsorption, oxidative stress, and hydrogen sulfide SIBO. I’m forever grateful to Lonsdale, Marrs, and Overton for their invaluable thiamine work that helped guide me back from the brink, and to the numerous doctors and practitioners who have helped me get this far. Perhaps my story can help others struggling with chronic health issues.

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This article was published originally on September 23, 2021.

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Are Women More Sensitive to Pain? Hormones and Pain Killers

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women and pain

Are women more sensitive to pain? The question has been bandied about for years. Study after study answers affirmatively. Yes, women are more sensitive to pain. Not only that, women experience more pain than men for similar injuries and require more pain medication to achieve the same level of relief. And oh, by the way, for some strange reason, women suffer from more abdominal pain than men.

The question itself is encumbered with an all-knowing cultural and political ennui that subsumes the very possibility of an accurate answer. Instead it directs us toward the expected, and ultimately, uninteresting psychosocial babble; of course, women are more sensitive to pain, let us simply count the ways. While it is true that women do indeed require more pain medication than men and suffer from more abdominal pain than men, it rarely seems to occur to those conducting this research to re-frame the question from the tacit approbation of female ‘sensitivity’ to why might women require more pain medications than men. What is it about the medication or the female physiology that renders pain medications insufficient in women. Well, let me count the ways.

Pain Medications Designed by Males, for Males, with Males

Exclusive of the pain medications discovered accidentally, like the early opium-based or morphine derivatives on which no research was ever conducted, most pain medications developed in the 20th century were never tested on women. Indeed, women were prohibited from being included in clinical trials until 1993-1998. (Instead, we simply gave women the meds and hoped for the best). Even post 1998 when the new regulations were implemented to permit women in clinical trials, there were no requirements for drug developers to analyze the data based on sex and determine if a particular medication worked better or worse in women or even if the medication had more or different adverse events for women. As a result, many researchers have noted that women suffer disproportionately more adverse events per capita than men and that those adverse events are often quantitatively more serious. For more details, see: Women in Clinical Trials – So That’s Why My Meds Don’t Work. 

Even in early medication development, the animal research, uses males to develop and test the efficacy of a particular medication. A recent report suggests that 79% of all animal studies published over a 10 year period in the journal Pain, were done on male rodents. Only 8% used both males and females and only 4% tested the response differences between males and females. As the comments in this pain post suggest, testing on female rodents is expensive and difficult because of the animal’s estrus cycle (menstrual cycle for humans) – e.g. the hormone changes are rapid and complicated. It’s much easier and less costly to measure in male rats.

I would argue, adverse events in human females are exponentially more costly and difficult than conducting the appropriate research early in development. However, with the exception of the class action fines that pharmaceutical companies pay, it is not often that the pharmaceutical company – the drug developers – must bear the brunt of the early research costs or even bulk of the adverse event costs. Rather, it is governmental agencies that fund early stage research and insurance companies, governmental and private, respectively, who pay for the negative outcomes. With this bit of a misalignment that means no one pays for or is accountable for, what perhaps, could be avoided, if funds were allocated in the earlier testing phases.

Given that so few pain medications were developed using females (rodent or human), it is entirely possible that many pain medications simply do not work as well or even by the same mechanisms in females versus males. There is some evidence that this is true. Researchers have noted that while standard morphine type medications (opioid agonists) don’t work as well in women as in men, other medications appear to work better, such as the opioid agonist-antagonist butorphanol or pentazocine – pain killers that work on different types of receptors and by different mechanisms.

Female Biochemistry, Pharmacokinetics and Pharmacodynamics

What is it about the female physiology that makes some medications less effective than when given to males?  Well, to state the obvious, females are genetically, physiologically, structurally and biochemically different than males. Why would anyone presuppose that placing a compound into two discretely different environments would exact the same response? And yet, that is exactly what we do.

Drug disposition is sex-specific. How a drug moves through the body (pharmacokinetics)and what effects it elicits (pharmacodynamics) are determined by number of factors, most of which differ significantly in males and females. In one of the better written reviews of Sex Differences in Drug Disposition, researchers note that even in the few studies with sex-analytics, it is clear that women process drugs differently than men.

  • Drug transit through the GI tract is considerably longer in women than men (91.7 hours versus 44.8 hours).
  • Bile acid composition is different and acidity levels are different
  • Women show a higher maximum dose and AUC 87% and 71% of the time
  • CYP enzymes (the enzymes that break down drugs in the liver) vary with some variants consistently increased and others decreased by sex.
  • Food by medication interactions vary directionally by sex – that is they are not consistent, some increase metabolism, some decrease metabolism
  • Sex differences in kidney function
  • Sex differences in liver function
  • Sex differences in pain and opioid receptor density and activity
  • Women exhibit different pharmacodynamic profiles for a wide array of drugs
  • Cycling hormones dynamically change drug metabolism (pharmacokinetics) and drug effects (pharmacodynamics); pregnancy hormones change these drug parameters even more radically

Bottom-line, women are different than men. Existing medications need to be tested in women to see which ones work and which ones don’t, and then, prescribed accordingly. New medications should be developed for these differences. (Imagine, a whole new market by simply recognizing the obvious differences in the population). For medications already in development, sex analytics must be conducted before the drug is released.

Are women more sensitive to pain? Probably not, but we have different types of pain (frequently, undiagnosed or misdiagnosed and chronic) and respond differently to pain medications than men.

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This article was published originally on Hormones Matter on June 27, 2013.

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An Unlikely Advocate for Pain Medication Access: A Chronic Pancreatitis Patient Speaks Out

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Chronic pancreatitis and pain killers

I never thought I would be an advocate for pain medication access. I have been clean from alcohol and non-opiate drug abuse for 17 years. I am an active member of a 12 step fellowship. I sponsor women and have a sponsor. I regularly attend meetings. For most of my recovery I was anti-pain medication. I still believe opioid pain medication should be avoided in most situations. I also advocated against pain medication—so that it would not get into the hands of teens.

From Sphincter of Oddi Dysfunction To Chronic Pancreatitis

I dealt with sphincter of oddi dysfunction pain for over 13 years, never taking opioid pain medication for this condition. I also have painful neuropathy for which non-narcotic medication did not help. I chose to treat with alternative therapies, which sometimes helped. This year I was diagnosed with chronic pancreatitis. Chronic pancreatitis is well documented in the medical literature as being “excruciating”, “severe”, and even “miserable”. Some medical articles have documented chronic pancreatitis pain as worse than pancreatic cancer pain. In some states I qualify for palliative care, one step down from hospice care. There are no evidence-based treatments for chronic pancreatitis pain other than opioid pain medication and total pancreatectomy (pancreas removal).

The horrible unrelenting pain flares drove my family and me to seek pain management. After all, I wanted to die. I am not just saying I wanted to die. I mean I really wanted to die. The pain was on par with labor pain. Imagine trying to function every day in labor—but have no break in between contractions? I learned to function with the daily pain but when the flares came on I thought I would die and if I didn’t I surely needed to figure out how to end my life and suffering. My primary care doctor and a gastroenterologist I later fired tried me on the usual first line treatments for pain. NSAIDs gave me microscopic colitis. Tylenol was useless. Non-cholinergics like amitriptyline caused severe itching in places I’d rather not mention. Nerve medications like gabapentin and Lyrica and anything affecting GABA caused flu-like symptoms and exacerbated my pancreatic symptoms (pancreatitis is a side effect). I tried hypnotherapy, acupuncture, reiki, yoga, meditation, magnesium, and any natural remedy I came across.

Chronic Pancreatitis
The radiating pain of chronic pancreatitis.

Eventually pain of this level wears on the body and mind no matter how hard you are working at treating it. Finally, after heavy consult with my Higher Power, sponsor, mom, husband, and a close recovery friend, it was decided I needed to actively seek stronger more effective pain relief. My primary care and pretty much all primary care doctors in my area have a policy of not prescribing opioid pain medication. Specialists, unless you have cancer, don’t either. No pain management doctor in our area who takes insurance will prescribe pain meds anymore—they only offer injections, procedures, and non-narcotic medications. At one point I relented out of desperation to have a celiac plexus nerve block. The pain doctor kept insisting it was the only thing that worked for pancreatic pain. My primary care totally bought into it too, mostly I felt because he didn’t have to write a prescription. These doctors had no clue how tapped in I was with research. Nowhere was it documented to be a proven treatment for chronic pancreatitis. Regardless, because I was desperate for pain relief and told this was my only hope, I paid a hefty copay, spent half the day in the hospital, was sedated and had a needle stuck through my abdomen. It did nothing. No relief.

A Near Stroke from Severe Pancreatitis Pain

At one point my body just could not handle the pain anymore. I had gone so long suffering that it said, “enough.” One evening a few months ago the pain intensified to a degree my blood pressure doubled (I have one of those little machines) and my right side went numb. I was about to have a stroke! From pain! Luckily I was saved with emergency pain medication. At this point my gastroenterologist was infuriated my primary or any pain doctor would not try to manage this. He ended up prescribing a low but effective dose of an opioid for the flares so I wouldn’t stroke out and die. Unfortunately, the hospital he worked at told him I needed to find pain management. I finally found a doctor quite a drive away who I have to pay out of pocket because apparently insurance companies think they are the DEA now and don’t want to approve insurance for pain doctors who prescribe opioids. For now, I have a safety net. I do not enjoy pain medication and only take when I absolutely need to. My recovering addict friends don’t get it and quite frankly they don’t have to. Try walking in my shoes, having chronic pain and illness for four years straight. Trust me, the only pill you’ll desire is one that makes you feel normal, not one with side effects.

Guidelines on Pain Management Ignore Chronic Pain

When the opportunity arose to comment on the draft Center for Disease Control’s “CDC Guideline for Prescribing Opioids for Chronic Pain”, I looked forward to reawakening my grant reviewer skills to objectively identify the strengths and weaknesses of the document with the hope it would help pain patients. Unfortunately, I found it near impossible and beyond frustrating to review this document in an objective manner. The guideline is not organized like a typical guideline or tool kit. It is nothing more than a literature review of the harms and risks of opioids times 100. It is a warning for all doctors to not treat pain! Reading this document left me scared—really scared. It left me wondering what happened to the United States and to the rights of chronic pain patients? How could this be? No consumer groups or chronic pain patients were included in their peer review or “experts” process.

Yes, there are harms and risks with opioids, but a document meant to help primary care doctors in prescribing should be just that. It is biased in that it quotes very little about the realities of opioid treatment—that it is sometimes the only treatment modality left for some people. Even the DEA and 21 Health Organizations wrote, “Promoting pain relief and preventing abuse of pain medications: A critical balancing act” which states “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve”.

The guideline talks about other medications and treatments yet fails miserably at discussing the lengthy side effects and risks of these treatments. They are conveniently omitted. The statistics in the Background section do not delineate criminal activity from actual chronic pain patients in a pain management type setting nor does it flesh out overdoses or drug use that involved polydrug use of illicit drugs or alcohol. Instead of a literature review detailing harms and risks doctors need supportive information. I would hope that a doctor knows the risks of any medication they are prescribing.

What Pain Management Guidelines Should Address

The guideline should explain that primary care doctors may be the only opioid prescriber in a patient’s area as most pain management doctors no longer manage chronic pain with opioids and specialists refuse to prescribe. Primary care doctors have by default become pain management doctors. As such, pain patients should not be punished for this trend. Also, doctors need to learn how to educate patients on the difference between physical dependence, tolerance, and addiction/misuse of opioid medications. Just because you are on pain medication does not mean you are a drug user or an active addict.

Patients need to be taught basic opioid safety—keeping the opioids locked away and out of teenagers’ hands. Many patients are naïve to think their teens would never consider experimenting with their meds or visitors won’t snoop through a medicine cabinet. Providing real-world information will prevent unnecessary overdoses NOT limiting chronic pain patients their pain medication.

The CDC is clearly not the appropriate agency to spearhead opioid prescribing guidelines. They are good at authoring literature reviews on ebola and trying to find cures for diseases. They are NOT equipped to publish guidelines of this manner. This is not an epidemic as the media is reporting. Overdoses and drug abuse are rare in the chronic pain patient population. There is no evidence chronic pain patients become heroin addicts. In fact, the only heroin addicts I’ve met who used to be chronic pain patients were those who were cut off from their doctors with no treatment plan. Proper pain management actually prevents illicit drug abuse. Hopefully the chronic pain patient’s story will be heard. So far, the government and media have turned a blind eye to them.

Photo by danilo.alvesd on Unsplash.

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The Truth About Salt

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Angela A Stanton,Ph.D.

When we salt our food, we rarely think of salt as a crucial aspect of our physiology. In particular, we think it has absolutely nothing to do with anything other than taste and we certainly do not think of hormones. In this short post, I would like to clarify a few myths about salt and salt types and hint at their importance and hormonal connection.

The Myths of Designer Salts

Myth #1 sea salt versus table salt. There are hundreds of posts on the Internet about the benefits of sea salt over table salt. I would like everyone to know that there is only one salt on planet earth: sea salt. The fact that it may be called table salt simply suggests that some time ago it was clearly understood by all that all salt came from the sea. There was no need to place the word “sea” in front of salt; we all knew what it was. Somehow we have forgotten that salt comes from the sea. Now many designer salts have showed up with the word “sea” in front of the word salt and sell for much more than table salt. Don’t be fooled: all salts come from the sea! Preferences, of course, may mean you pick a designer salt over table salt, but I would like to make sure you know that in terms of salt, they are the same for the body.

You may ask: how can they be the same for the body if one contains all kinds of other elements as well as pure salt itself. The answer is very simple. In the body, salt molecules (NaCl) break down into ions (Na+ and Cl-) and only these two ions participate in what is called voltage activated sodium pumps (Nav1.1-1.9) where 1.1 to 1.9 indicates that there are 9 such pumps and Nav stands for voltage activated sodium pump. Thus, for the body only ions matter. Na+ is inside the cell and is positively charged. Cl- is outside the cell and is negatively charged. The two create the voltage necessary for the cell to function. Some of these pumps also have additional functions—such as sending pain message when a pump opens and does not close properly. The influx of Na+ and Cl- can cause the signal of pain to go off causing chronic pain. Much is yet to be understood by the function of salt but the one thing we already know: salt is NaCl and no additional organic matter matters.

Myth #2 refers to rock salt that comes from mountains like the Himalayas in various colors. They make beautiful lamps but in reality they are sea salts that have fossilized as the tectonic plates have shifted and lifted the Himalayans out from under the sea. Why are they pink or orange and very colorful in general? Because as the mountains were lifted, pressure increased on the salt deposits and the weight of the mountain pressing heat and metals through the salt created fossilized salt with various metals trapped in the salt itself. There is nothing wrong with eating fossilized rock salt except that by the nature of the fossilization process of high heat, pressure, and the many metals, a large percentage of these “minerals” entrapped in the salt are actually radioactive metals. Again, it is a taste question whether you prefer Himalayan or other salt but know what you are getting.

Myth #3 is Celtic and similar sea salts of various colors that are collected from clay pools and evaporated such that each sea salt crystal has little cavities of entrapped water with “minerals.” I see many lists of minerals for various sea salts but few of us actually consider where those minerals come from. I know we all love to eat sea food, fish, shellfish, and sea weeds as well. The mineral deposits in designer sea salts come from the debris of these sea animals, including their excrement and dead bodies. There is nothing wrong with eating fish poo and dead fish as long as you know that your choice of salt contains it. Some of these salts are proud to also include a bit of clay, and hence, the moisture must be kept else you will need a hammer and chisel to break the salt up. So, much of the charm about designer salts is trickery and harmless misinformation that takes advantage of those who are not aware.

The truth: salt, by chemical composition Sodium-Chloride (Na+, Cl-) is only these two elements combined, as discussed above. Our bodies use these chemicals only in ionic form. Salt is part of the baby’s amniotic fluid in our bodies (not Himalayan salt, and not various colored sea salts; just simple Na+ Cl-). This standard chemical element constitutes a very large part of the over 70% saline brine of our bodies. We are made of salt water. When we visit the emergency room with any illness, the most often used first step – the needle with a clear liquid dripped into our vein – is also saline water electrolyte. Electrolytes contain other elements to complete the full list of micro and macro nutrients of the 70% brine.

Other Minerals in Salt

What about the so called “minerals” that are in the designer salts? Do we need them?

  • Magnesium is a very important element that provides a key such that the cells can open at all given the proper electrical environment. Magnesium also provides crucial nutrient for the mitochondria (little bacteria in every single cell of our body that converts the food we eat to energy packets our cells can use). You get more magnesium out of a bite of food (just about any food) than from an entire box of designer salt.
  • Calcium is needed for high voltage channels where the neurotransmitters are released.
  • Potassium is needed to keep the balance of hydration in the cell and outside of the cell to ensure that the cell is not overly hydrated (potassium is a diuretic).
  • Phosphates. We also need phosphates and other elements and of course a ton of water, but the elements in designer salt sold as essential mineral are minuscule and meaningless.
  • Iodine. Another important factor is iodine. Designer salts do not contain iodine. In the US, the government has gone through great trouble placing iodine into our salt to eradicate goiter, a disease of the thyroid. Without adequate iodine our thyroid is not able to produce the right amount of hormone to keep our brain healthy. Recall also, in Japan after the nuclear plant released all that radiation, the first item sold out throughout the country was iodine. Iodine acts like a sponge, soaking up many toxins from our body to be able to eliminate them. Radioactivity is one of those things iodine can help clear from our bodies.

Salt and Hormones

So the question then is: what does salt have to do with our hormones? Does it matter? Indeed, it does. Those who have read the migraine series 3-part posts know that the most critical element in preventing and treating migraines is salt. Every single neuron in our brain has several voltage-gated sodium pumps (sodium-potassium pumps) to generate voltage. Without such voltage the neurons are not able to manufacture and release their neurotransmitters-hormones in the body. Thus, restricting salt in your diet retards the hormone manufacturing of your body. In previous articles, I showed how studies show that low salt diets are harmful even for those with preexisting heart conditions and hypertension. Salt does not increase blood pressure, provided that salt is consumed with sufficient amount of water, along with potassium and the other minerals and nutrients, I listed above.

Sodium retains water thereby hydrating the cells. Sodium chloride maintains the polarity differences between the inside and the outside of the cell membrane to control the electrical activity, which then open the pumps. Having enough salt in your brain makes the difference between having a headache/migraine or not. What if it also helps prevent other diseases of the brain? There are suggestions that fibromyalgia and neuropathy may be connected to one of the Nav pumps. I wonder if other conditions such as bipolar disorder, anxiety disorder, and even depression could be, at least partly, caused by an inappropriate level of sodium in the brain?

Possible Role for Sodium – Potassium Pumps in Disease

Let’s investigate one of the voltage activated sodium pumps. The one we seem to know most about so far: Nav1.7.  According to recent research, this particular pump has a critical role in chronic pain dampening. Experiments on various poisonous animals—including the Chinese red-headed centipede and the snake black mamba—show that their venom seems to selectively choose this particular pump to dampen the pain associated with some types of chronic pain. The pain signals need not be located in any one particular location of the body, but are relayed by the brain as hormones release for the pain message. People with neuropathy, such as Type 2 Diabetes or those who have been been floxed (suffered an adverse reaction to a fluoroquinolone antibiotics) are very familiar with this pain. Nothing seems to help with this type of pain except a very few types of strong drugs of the brain, some (like Gabapentin) inhibit nearly all activities in the body in near-full-force. The drugs of the brain are systemic whereas the venom is capable of acting on only one sodium-potassium pump, the Nav1.7.  Perhaps, in the future, this finding can be applied to reduce neuropathic pain without global nervous system dampening.

My Two Cents

I suspect most ailments of the central nervous system that include a hyper-sensitivity for pain will become a subject of sodium pump malfunction research. There are also indications that there is a switch in the connection of the peripheral nervous system to the spine, and thereby the central nervous system, where there should be a relay station to either inhibit or amplify the pain. Apparently, at this relay station the switch is flipped backwards and what should be inhibiting actually amplifies. Pain experienced from these crossed wires is called allodyna. I suspect we will be hearing much about this term in the future and how it connects to various sodium pump malfunctions that today we do not yet understand.

Sources:

Pain Scientific American December 2014; p:62-67

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Hypersensitivity to pain, my ass!

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Chandler Marrs

A multitude of reports have emerged in recent years denoting the over use of pain killers and other medications. With narcotic pain killers, in particular, data suggest a four-fold increase in opioid use since 1999, and over 100,000 deaths by opioid overdose during same time period. The data also indicate a close correspondence between the increase in prescriptions for pain killers and pharma sponsored marketing, ‘research’ and policy changes that have inculcated medical agency guidelines over the last decade.

For women, this is a particularly troubling trend, as other research indicates we are the primary targets of narcotic prescribing; women take 50% more pain killers than men. We also take 36% more medications than men in general. Speculation about why women take more pain killers than men, often involves psychosocial characteristics including a reduced sensitivity to pain, a predisposition to pain causing diseases, and a predilection to report the pain to one’s physician. Women seek out medical treatment at a much higher rate than men.

What often fails to get mentioned is that:

  1. Pain medications don’t work  as well in women because as we’ve reported before few females, rodents or otherwise, are used in the development of these medications.
  2. Even when female animals or women are used in drug development research, cycling hormones are not analyzed as factors in the effectiveness of the medication.
  3. For the myriad of pain related disorders affecting women, many lack evidence-based diagnostic criteria (less than 30% of Ob/Gyn practice guidelines are based on actual evidence) and frequently physicians and the lack of effective diagnostic criteria hastens many to presume an underlying psychosocial or mental health issue.

I personally think the psychosocial arguments that women are more sensitive to pain than men are nonsense. Rather, I think there is a lot more inherent to our physiology that makes pain related conditions not only more likely, but more difficult to treat.

Consider for example, the menstrual cycle and childbirth. These amazingly complex, biochemically radical, pain-inducing, often life-altering experiences are just a ‘normal’ part of female existence. I dare any man to experience the exponential and repeated cyclic change in biochemistry, akin to a repeated drug addiction and withdrawal pattern, that is the female menstrual cycle. The myth of female hypersensitivity to pain, based largely upon the ineffectiveness of pain or medications that were never designed for her changing biochemistry, is just that, a myth. And though I do admit, some humans are more sensitive to pain than others, the contrived experimental methods that designate women as hyper-sensitive do great damage to our understanding of women’s health and the differing pharmacokinetics across the menstrual cycle, pregnancy, postpartum or menopause.

And then of course, there is endometrial sloughing, necessitating a cramping mechanism to propel the tissue outward or the grandmother of all pain experience, childbirth where women deliver 8lb humans through a cavity opening that expands only to 10 centimeters, often times choosing to not utilize pain medications. These ‘normal’ events of a woman’s life are not indicative of a ‘hypersensitivity to pain’.

No, I don’t buy this mumbo jumbo that women are somehow more sensitive to pain than men. If anything, most women have a higher tolerance to everyday pain than most men. But there is a rationale to perpetuating this myth; it limits innovation in women’s health.

Why innovate when a company can make billions prescribing the same old medications at higher and higher dosages, to more and more people? Why address the needs of half the population, when one can blanket the market with drugs for the entire population?  And to that point, why develop more accurate diagnostic criteria or more effective medications for conditions that only effect a small subset of the total population; especially when medications developed over 50 years ago can be used?  If these medications are addictive, have side effects that necessitate other medications and are extremely difficult to withdraw from, well then, those are just added bonuses. It’s a wonderful business model, albeit a little less than ethical.

Despite the obvious marketing excess, we as consumers bear as much responsibility for the increase in narcotic prescriptions as does the pharmaceutical industry. We are letting this happen. Let’s face it, it is much easier to take a pill to make the pain go away (or eat a pint of ice cream to alleviate stress) than go after the root problem. It is difficult to address root causes. It is especially difficult if one is suffering from a medical condition that is chronic, pain-inducing, poorly understood, not easily diagnosed, and for which there are no effective medications. Women disproportionately suffer from these types of conditions – think fibromyalgia, endometriosis or even migraines.  We also make 80% of all family medical decisions. So ladies, we need to stand up and begin educating ourselves and our families about health and disease. We must demand more research and we will probably have to lead it ourselves.

 

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PROP Painkiller Labeling Changes May Hurt Women with Chronic Pain

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Philippa Bridge Cook

Many Americans with chronic pain conditions may not realize that their access to narcotic pain medication, which is already difficult and mired with barriers, may be about to decrease even more. An FDA advisory board is currently considering a petition to change the labeling on opioid pain relievers, which could affect the ability of millions of Americans with chronic pain conditions to continue using these drugs as they are being used today. The petition to the FDA, led by Physicians for Responsible Opioid Prescribing (PROP), calls for three changes to the drug labels of opioid pain medications. For non-cancer pain, these medications are currently approved for “moderate to severe” pain, and the proposed changes would remove the word “moderate,” leaving the drugs indicated only for non-cancer pain that is severe. In addition, the petition calls for the addition of a daily limit of 100 mg of morphine or equivalent per day, and a maximum 90 day treatment period.

What the Medical Societies Think

Several respected medical bodies, such as the American Medical Association (AMA), are against the PROP petition to the FDA. In a letter to the FDA opposing the petition, the AMA correctly points out that the PROP petition is not based on valid, scientific data from new studies, nor does it suggest proven therapies that can replace opioids in patient treatment when necessary. The American Academy of Pain Medicine stated in a letter to the FDA that the “rationale for the requested changes is seriously flawed, potentially harmful to patients with debilitating pain conditions for whom opioid therapy is indicated, and without substantive scientific foundation.”

Preventing Abuse

The proposed labeling changes are aimed at curbing a prescription painkiller abuse problem that has been increasing exponentially in the U.S. The issue of narcotic painkiller abuse/misuse has been in the news recently, with the Centers for Disease Control and Prevention (CDC) reporting in July that the number of women dying from prescription painkiller overdoses has increased by more than 400 percent since 1999. Although more men than women still die of prescription painkiller overdoses, the increase in women has been dramatic and highlights the growing problem with prescription painkiller abuse. Almost 48,000 women died from prescription painkiller overdose between 1999 and 2010, and 30 times that number went to the ER for issues related to painkiller abuse or misuse. Prescription painkillers now top heroin and cocaine as the number one cause of death from drug overdose, although many of these deaths involve additional drugs or alcohol.

The proposed changes to opioid painkiller labeling aims to address the problem of prescription painkiller abuse by limiting the number of prescriptions for these drugs. However, it is not clear that limiting prescriptions for these drugs would solve the problem of drug addiction, which is much more complex than just being about availability of prescriptions.  For instance, research shows that 75 percent of people who abuse prescription painkillers have obtained drugs from family members, friends, or on the street, rather than having these painkillers prescribed to them. In addition, the risk of chronic pain patients developing addiction is relatively low, and addiction in this patient population is more common if other predisposing factors are also present (such as prior history of substance abuse, or mental health disorders). Prescription painkiller abuse is a problem that deserves to be addressed, but there is little evidence to suggest that the proposed opioid labeling changes will help this problem.

The Burden of Chronic Pain

On the other hand, the proposed changes will undoubtedly hurt the population of over 100 million Americans suffering from chronic pain. Chronic pain can result from many conditions, including headaches/migraines, low back pain, arthritis, cancer pain, fibromyalgia, pelvic pain, and neurogenic pain (pain resulting from damage to the peripheral nerves or central nervous system), and is generally defined as pain lasting longer than three to six months. Many chronic pain conditions are more likely to affect women than men. The burden of chronic pain, in terms of costs to the health care system, is huge: chronic pain costs up to 635 billion dollars per year in medical bills and lost productivity. However, the personal cost to the patient with chronic pain is immeasurable.

According to the World Health Organization (WHO), millions of people around the world suffer from under-treated pain. Patients with inadequately treated pain have an increased risk of suffering from depression and anxiety, and may experience many consequences of the pain such as decreased mobility, impaired sleep, immune impairment, loss of independence, and withdrawal from social interaction. Other than increasing the amount of suffering an individual has to endure, under-treatment of pain has other effects such as lost productivity and excessive health care costs. Patients with chronic, non-malignant pain are at the highest risk of having their pain inadequately managed. And it is those patients who would be most affected by the proposed changes to opioid labeling. Patients in both developed and developing countries have under-treated pain for multiple reasons including inaccessibility of opioids.

Women with Chronic Pain

Women may be particularly at risk for having their pain under-treated, even though women are more at risk for suffering with a chronic pain condition. Most medications, especially older medications (which includes narcotic painkillers), were only tested on male animals  and human males. Therefore, how well they actually treat pain in women, and their possible adverse effects, are not well understood. Furthermore, the fact that the mechanisms behind these chronic pain conditions are not understood also makes them difficult to treat effectively.

Chronic Pain is Complicated

Chronic pain is a complicated problem that requires highly individualized multi-modal treatment. In addition to using appropriate medications at the right dosages, other methods to address pain can be helpful, such as surgery, physical therapy, psychological counseling, acupuncture, and meditation. There are only about 3000 to 4000 pain specialists across the U.S., leaving primary care doctors to treat pain, despite very little specific training. In addition, lack of reimbursement by insurance companies for complementary therapies can be an additional barrier to patients being able to fully treat their pain. Making opioid pain medications less accessible for chronic pain patients will only increase the number of barriers for these patients.

Will PROP Work?

The PROP petition aims to fix the prescription drug abuse problem by withholding medication from patients with chronic pain. The idea that having fewer drugs in circulation will solve the problem of prescription painkiller addiction is too simplistic, as drug addiction is a much more complex psychosocial problem. But worse, this petition will compound the already huge problem of chronic pain in the U.S., by limiting accessibility to a class of medications that many pain patients find helpful for their condition. I believe the FDA should reject the PROP petition in favor of other approaches that target the drug abuse problem directly, rather than causing a large group of patients to endure more suffering for the sake of unproven societal benefit.

To help stop the PROP petition to the FDA, sign the change.org petition at: http://www.change.org/petitions/please-help-to-stop-prop-s-petition.

 

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One More Day – A Day in the Life Post Gardasil

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My head feels strange, like I might have a seizure today. It is difficult to explain, but Mom seems to understand what I mean. She tries to get my breakfast made as quickly as possible. My legs are so unstable so decide to sit in my favorite recliner – maybe watch one of the shows I recorded while my food is being made.

The pain in my head, the pressure especially is worse right now. Brain fog is preventing me from understanding what is going on in the program. Thankfully, Mom arrives with my scrambled eggs, gluten free English muffin, grapes, mint tea. She knows my stomach is not the greatest, but I am hungry!  She sits with me for a few minutes while we eat. We talk a little but my mind isn’t thinking so clearly. That weird feeling in my head is worse. As Mom heads back upstairs with my tray I ask her for some sparkling water for my stomach.

The blinding pain hits me like a white-hot knife cutting through my head. It is a searing series of jolts, like I am being electrocuted multiple times. Mercifully, an inky blackness spreads over me and everything goes dark.

Even though I’m pretty sure I’m still on the recliner I am only vaguely aware of choking on the foam that has risen in my throat during the seizure. I can feel Mom trying to wipe my mouth with a tissue. She lets me tug it from her hand to clear my mouth better. It hurts incredibly to move, but I need to get to bed. The pressure is worse in my head now.

The weird sensation is rising from my stomach into my head. Have to tell Mom, but my vocal cords are frozen. I’m blind as well from the first seizure. Even my hearing is gone. All I can do is make motions with my hands, but Mom understands enough to lower the recliner, ease me forward, then slowly get me to my feet. It’s a struggle to do any of it but will my body to stand. Oh, how I wish my legs would cooperate! They are weak, trembly, unsteady. Can’t blame them, they have very little feeling left from mid-thigh down. Mom slides my arms around her shoulders, then leads me to my bed – Slowly, Mom, legs are protesting, my mind tries to shout. After what seems like forever we reach my bed. Mom helps guide my hands to the edge, helping me find the blessed pillows. It’s so hard to lift my legs, but finally I’m safe on the mattress, before another seizure hits.

I have no idea how long I’ve been lying in bed when my consciousness returns. Without vision, hearing or speech it is impossible to know anything safe for the new levels of pain that run from my head to my upper thighs. Everything is achingly tender. I flinch when Mom gently strokes my ear. She pulls her hand away not knowing how to comfort me. While attempting to sign to her I discover the blood pressure cuff is still on my arm – It hurts! Must have whimpered because Mom quickly got it off.  I sign again to the open air, hoping Mom will understand. She gives me her hand so I can spell out short words. She squeezes my hand once – Yes! She understands my request! (We worked out a system to communicate when all of my other senses flee after a seizure. Squeeze once for Yes, squeeze twice for No. And when my confusion clears enough we spell into each other’s hand to ask or answer questions.)

After giving me a drink to clear my throat, Mom lets me rest – I truly need rest to recover. My body won’t cooperate, needing a trip to the bathroom. After locating the wall by my bed, I begin to knock. I don’t know how loud it is, but Mom is quickly by my bed. She holds my hand to let me know, but I flinch again from the pain. That hand is swollen a bit as well. Mom waits for me to sign, which is easy this time. She gently guides me to and from my destination; helping me as best she can. Finally back in bed, she signs into my left hand to rest. Wish my hearing would release – I need to listen to my ocean CD. It is so relaxing.

After lying in my bed a few minutes, aching from the seizures, my hearing suddenly returns. Silent tears slide down my face unbidden, but I can’t help it. Every time my senses begin to return, there is relief, joy, thankfulness. Knocking on the wall again, Mom returns, but I can hear her softly speaking, praying for me. When I respond she is also relieved that my hearing returned. She immediately turns on my ocean waves CD. She whispers she loves me, then allows me to drift fitfully to sleep.

Several hours later I awake, realizing immediately that my vision is returning. It isn’t the greatest, but I have color and can distinguish objects. My legs are a little less wobbly so I can get my own water. Eventually I can get out of bed, go up to the kitchen to see my mom. She is surprised that I’ve negotiated the steps on my own, giving me a smile and a gentle hug. My body feels I have been in the fight of my life, tender, aching, sore, but my head pressure is improved some. The weird sensation is almost gone. Mom notices one of my eyelids is drooping, but it’s hard to miss. She just smiles, then asks me if I’m hungry. Since my voice hasn’t returned I sign in a little while. After I get a glass of mint tea, Mom helps me back down to the family room. My vision still isn’t the greatest but I can watch Duck Dynasty! The show makes me laugh which I desperately need until supper.

My stomach isn’t doing the best right now; ate something with gluten a couple of days previous, so I’m paying for it. Mom has given me several choices for supper, but nothing sounds good. My dad had just finished eating, giving me a soft kiss on the forehead. He has to go to a meeting at church, so he can’t linger but a few minutes. How I miss our dates we had while growing up! It’s been a long time since we’ve been able to have dinner and a movie night. I smile at my dad, trying not to let him see my pain. The Gardasil injury has been very hard on both my parents. Not an easy thing to live with, but this is my life now.

Mom finally makes me quinoa with chicken and organic veggies – it tastes good so digesting will be easy, I hope. After watching a movie with mom I decide to take a shower. Couldn’t get my IV today, but I’m very determined to go tomorrow! Mom isn’t crazy about the idea, but lets me know she will be close by. I am thankful that I can do this much finally, but knowing she’s close if I need help is reassuring. After my second dose of Gardasil, Mom had to bathe me, feed me, help me in and out of my wheelchair. Six years later I’m doing some things on my own again!

During my shower I begin to overheat. Reducing the water temperature isn’t helping. My head and stomach are way too hot now, so I quickly shut off the water, open the door while trying to call for mom. Even with the door wide open, my towel is too hot as well. As the waves of nausea strike, I grab my trash can. Mom arrives as I lose my super.  My body really seems to hate me, though my voice has unexpectedly returned!  At least something positive has just happened! Wobbly legs and trembling arms prevent me from drying off quickly. With Mom’s help though, I’m partly dressed by the time I hit my bed. My face is on fire from the flaming nerve endings that bloom on my body randomly. The nausea is pretty bad, but mom fans me best she can. Finally, after what seems an eternity, the flame in my face and stomach fades. I’m still trembling from the exertion but at least I’m not tossing my cookies. Mom gets me something for my stomach, Bromelain – best thing I’ve ever tried for nausea! It settles my stomach to the point I can finish getting ready for bed. Thank you, Lord, for getting me through one more day. Tonight, hopefully I will sleep. Tomorrow will be a better day…

Brittney and Roxie Fiste

To read more about Brittney’s Gardasil injury: One Less After Gardasil.

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Physical Pain and Depression

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Physical pain and depression go hand in hand. I’m not looking at any studies when I write this; I’m speaking from experience.

I spent three months between 4 and 9 on the pain scale. When palpated or touched anywhere below my ribs, I would involuntarily shriek and tear up. In pictures taken during that time, my skin was greyish and covered in a sheen of sweat. I was losing ten pounds a month. Specialists and primary care doctors would frequently say, “You shouldn’t be in this much pain. Your pain level is rather high,” and I would have no explanation for them. “I am in this much pain. I don’t know why. Let’s find out together.”

One explanation offered from my first gyno was that because I am severely allergic to all effective painkillers, meaning opiates and opioids, that the experience of moderate daily pain was causing sensitization. Because there was no relief, even temporarily, from pain, my body was becoming more sensitive each week, driving my pain up the scale. It’s a positive feedback cycle. Daily moderate pain started to feel like daily severe pain simply because there was no break from it. I developed an ulcer from the stress of the pain, which means I couldn’t take NSAIDS due to stomach bleeding, but they wouldn’t have done much anyway.

The gastroenterologist said that stress was making my pain worse. If constant pain makes you stressed and the pain gets worse, your stress increases too. He encouraged me to try meditation and breathing exercises, and they do help somewhat.

Pain touches the body and mind in an obviously negative way, but the worst part was depression. There was a definite pattern to the decline in my emotional health, and it had to do with hope of a solution and a return to normal life. The longer I waited for a diagnosis, the more depressed I became. The more research I did, I realized that I may spend my life in chronic pain, spending a lot of money on medical bills, with little hope of relief until menopause. No one could help with the pain, it seemed, because I couldn’t take anything for it. My mood worsened.

One month after starting the birth control, I told my gyno that I thought the pill was making me depressed. I’d been having uncontrollable and unexpected crying jags for seemingly no reason, and I’d read that depression was a possible side effect of some brands of birth control. He gently told me that this class of birth control doesn’t have depression as a possible side effect; others do, but not this one. He asked if I had a history of mental illness, and I said yes, but I’d been stable for four years. He said that I was under a lot of stress and undergoing quite a lot of pain. It would be unusual not to be depressed, and also that four years of stability is about the average, and I was due for a relapse and a medication adjustment. My partner reminded me that I’d been bedridden in the same room for months, experienced intense daily pain, had taken a very long leave from my fulfilling job, and wasn’t able to walk or exercise. Anyone would fall into a depression in my shoes.

I moved in with relatives so that my partner could focus on work. It’s very draining emotionally to take care of someone who is bedridden and in a lot of pain, not to mention lapsing into depression. I thought it would be easier for both of us.

I focused on all the things I could do when I could walk again, like go back to work, go walking in the park, go to karaoke with my friends, go out to dinner with my partner, and go to galleries and plays. I would watch foreign movies on Netflix and fantasize about eating regularly again: pastry, Thai food, German food, sushi … and later dream about food that wasn’t broth, gelatin and Metamucil.

The week of my colonoscopy, I experienced a huge emotional blow due to problems within my relationship, and my depression worsened. I stopped sleeping through the night and spent about two days in a series of panic attacks. I saw my doctor and he adjusted my medication, but I’m still trying to cope with this stress. Prolonged illness was bad enough, but I had hope that when the treatments were over, I could return to my happy home and life as usual. It’s not as easy as that now.

I spent a few weeks crying in supermarkets and drug stores, crying when I would hear familiar songs, staying up for all but one or two hours a night struggling with panic attacks, trying desperately to fake normal emotional levels and not being able to do so. I even cried onto a phlebotomist who wouldn’t stop asking personal questions (She was prying and pretty much asked for tears on her jacket). Isolation drove me to reach out on social media. I admitted that I wasn’t doing so well and needed help. As hard as that was to admit, many people came forward to offer support. A few messaged me every night, all night if the need was there, and I am eternally grateful for them. If you can manage the vulnerability of admitting you need help, you will find it.

Questions about the future regarding livelihood, health, and romance don’t lead down cheerful trains of thought. I dearly hope I don’t lose my job, or a long series of jobs, due to this disease. How does anyone reasonably manage a romantic relationship with this particular type of chronic pain? Do we demand that our partners be celibate when we are, no matter the duration? Do we acknowledge that our needs and wants are different when one person is frequently ill, and they are allowed outside sexual encounters? Or do we simply say that we’re better off living independently, even if we may struggle emotionally and financially due to this illness? I’m not actually looking for answers to these questions. Instead, I’m considering adopting a shelter dog.

Daily pain changed my personality, and I can recognize that. I wasn’t exactly chipper to begin with (I’ve been compared to Daria and Aubrey Plaza), and now I’m frequently withdrawn when the pain hits. Honestly, I’m not as much fun as I was before. Intense daily pain for months on end made me nearly suicidal, and while that’s a common reaction, it’s not easy to live with. It may be unreasonable to ask anyone to live with me at all.

Depression sticks around despite changes to medication and a strong commitment to getting better physically and emotionally. Every morning I wake up and plan activities that my normal self would enjoy. I look in the mirror and practice smiling. This is what a genuine smile looks like, do that when you see people. I plan social engagements, then wonder later if I smiled or laughed enough to convey that I’m having fun. Doing anything other than reading is exhausting. Spending time around people is exhausting. Answering any questions about my health or relationship is exhausting. Pain is exhausting. I am frequently in pain; I am exhausted. My therapist has asked me to seek out small gratitudes and moments of joy in each day, to actually practice being content. Through the mental static of anhedonia, I recognize that happiness is a choice, and a valid one.

It’s difficult to meditate on happiness when I am in so much physical pain. No one I’ve talked to or read about has said, “Why yes, my pain is greatly reduced and my life is nearly normal. I can manage my symptoms, and my treatments are affordable. My doctors take my pain seriously and find solutions in a timely manner. I can work long hours, exercise vigorously, and have great sex. The future looks good, even with this disease. There’s hope in there somewhere.”

What I seem to be looking at is decades of chronic pain, surgeries that may or may not help and will drive me deeper in debt, medication that is risky and also may not help, little or no sex life, and bowel disease that may worsen drastically as I age due to co-morbidity. Clinical depression is understandable considering the experiences of the last six months. Suicide really does look like an option some days. I know I can’t be the only one to think so.

Every person I know who struggles with severe chronic pain, no matter the underlying illness, has admitted to considering suicide. It’s not that life isn’t worth living any more or loved ones don’t matter, it’s that life has become a seemingly endless tunnel of pain. One more hour seems like too much, much less one more year or decade. Let it be known that suicide is not a sound idea and causes more suffering than it ends. If you are planning suicide, please call a hotline or arrange a ride to the nearest ER. However, it’s understandable, even normal, to think about suicide when living with painful, prolonged illness.

I realize that I won’t feel this way forever as long as I engage in healthy and productive activities and go on living life. I keep my appointments, take medication, exercise as much as I can and engage in social activities. Mostly, I act as if life is going to get better, even though my mind doesn’t seem to agree with me right now. I’m hoping that sharing this less-than-sunny account will help other people who live with pain and depression feel less alone.

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