chronic pain

Unraveling Symptoms and Syndromes

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What Is a Syndrome?

A syndrome is the name given to a collection of symptoms and physical signs that have been observed in the past in a single patient or in a group of similar patients. This is often named after the first person to report this set of observations. It is called a syndrome when others have made the same observations, sometimes years later. The terminology is purely descriptive, even though there may be a constellation of abnormal laboratory tests associated with the clinical facts. Unfortunately, the underlying cause is seldom, if ever, known.

Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME). In a review, it is described as a “challenge to physicians”. Its prevalence is reported as approximately 1% in the general German population. The author states that there are no convincing models that might explain the underlying cause as an independent unique disease. A variety of conditions such as chronic infectious disease, multiple sclerosis, endocrine disorders and psychosomatic disease are suggested in a differential diagnosis. There is said to be a significant overlap with major depression.

Another review describes CFS as characterized by debilitating fatigue that is not relieved with rest and is associated with physical symptoms. In order to make the diagnosis, these authors indicate that at least four of the following symptoms are required to make the diagnosis. They include feeling unwell after exertion, unrefreshing sleep, impaired memory or concentration, muscle pain, aching joints, sore throat, or new headaches. They also say that no pharmacologic or alternative medicine therapies have been proven effective.

Fibromyalgia Syndrome

According to the American College of Rheumatology, fibromyalgia syndrome (FMS) is a common health problem characterized by widespread pain and tenderness. Although chronic, there is a tendency for the pain to fluctuate in intensity and location around the body. Deficient understanding of its true cause gives rise to the false concept that it is neurotic. It is associated with chronic fatigue and patients often have sleep disorders. It is estimated that it affects 2 to 4% of the general population and is most common in women. It affects all ages and the causes are said to be unclear. FMS patients may require psychiatric therapy due to accompanying mental problems. Gonzalez and associates concluded that the combination of psychopathological negative emotionality, interpersonal isolation and low hedonic capacity that they found in a group of patients has implications for the daily living and treatment of these patients.

Regional Pain Syndrome

Complex regional pain syndrome (CRPS) is another common and disabling disorder, characterized by defective autonomic nervous system function and inflammatory features. It reportedly occurs acutely in about 7% of patients who have limb fractures, limb surgery, or other injuries, often quite minor. A small subset of patients progress to a chronic form in which autonomic features dominate. Allodynia (pain due to a stimulus that does not usually provoke pain) and hyperalgesia (increased pain from a stimulus that usually provokes pain) are features of CRPS and require a better understanding.

Sleep Apnea Syndrome

Apnea is the term used for a temporary cessation of automatic breathing that usually happens during the night. This syndrome is described as the most common organic disorder of excessive daytime somnolence. Its prevalence is highest among men age 40 to 65 years and may be as high as 8.5% or higher in this population. It is associated with cigarette smoking, use of alcohol and poor physical fitness.

Similar Cause with Different Manifestations

Complex Regional Pain Syndrome is related to microcirculation impairment associated with tissue hypoxia (lack of oxygen) in the affected limb. Without going into the complex details, hypoxia induces a genetic mechanism called hypoxia inducible factor (HIF-1 alpha) that has a causative association with CRPS. It has been found that inhibiting this factor produced an analgesic effect in a mouse model. The interesting thing about this is that thiamine deficiency does exactly the same thing because it induces biochemical effects similar to those produced by hypoxia (pseudo[false]hypoxia). A group of physicians in Italy have shown that high doses of thiamine produced an appreciable improvement in the symptoms of three female patients affected by fibromyalgia and are probably pursuing this research. Dietary interventions have been reported in seven clinical trials in which five reported improvement. There was variable improvement in associated fatigue, sleep quality, depression, anxiety and gastrointestinal symptoms.

Dr. Marrs and I have published a book that emphasizes deficient energy metabolism as a single cause of many, if not all, diseases. The symptomatic overlap in these so-called syndromes is generated by defective function of cellular metabolism in brain. Fatigue is the best symbol of energy deficiency and the English translation of the Chinese word beriberi is “I can’t, I can’t”. Fatigue is a leading symptom in beriberi. When physicians diagnose psychosomatic disease as “it’s all in your head”, they are of course, quite right. However, to imagine or conclude that the variable symptoms that accompany the leading one of fatigue are “imaginary” is practically an accusation of malingering. The brain is trying to tell its owner that it has not got the energy to perform normally and the physician should be able to recognize the problem by understanding the mechanism by which the symptoms are produced. Every thought, every emotion, every physical action, however small, requires the consumption of energy. Obviously we are considering variable degrees of deficiency from slight to moderate. The greater the deficiency the more serious is the manifestation of disease that follows. Death is a manifestation of deficiency that no longer permits life.

Our book is written primarily for physicians, but it is sufficiently lacking in technological language to encourage reading by patients. It emphasizes, by descriptions of case after case, the details of how genetic risk and failed brain energy are together unable to meet and adapt a person’s ability to meet the daily stresses of life. Stress, genetic risk and poor diet all go together. A whole chapter discusses the functions of the autonomic nervous system and how it deviates when the control mechanisms in the lower brain are defective. This system is the nervous channel that enables the brain to communicate the adaptive body actions necessary to meet living in an essentially hostile environment. We show that an excess of sugar and/or alcohol produce deficiency of vitamin B1 and the so-called psychosomatic disease that results is really early beriberi “I can’t, I can’t”. Variability in symptoms caused by this effect is because the cellular energy deficiency distribution varies from person to person and is affected by genetically determined differences.

This is illustrated by the case of a boy with eosinophilic esophagitis whose first eight years of life were marked by repeated diagnoses of psychosomatic disease. At the age of eight, upper endoscopy revealed the pathology in the esophagus. There was a family history of alcoholism and he was severely addicted to sugar. Many of his symptoms cleared with the administration of a thiamine derivative and resulted in a dramatic increase in stature. No pediatrician or other physician whose attendance was sought through those first 8 years evidently had ever questioned diet or the gross ingestion of sweets. They simply treated each condition as a confirmation that they were “psychological”.

It is worth noting that references 1 through 4 refer to both CFS and FMS syndromes being affected by psychological issues. This implies that the patient is “inventing” the poorly understood (and often bizarre) symptoms as a result of neurosis. The unfortunate complainant may easily become classified in the mind of the attendant physician as a “problem patient”. I have become aware that this can rise to such a degree of misunderstanding that the patient is denied access to the physician and even to other physicians in the same clinic. It is indeed about time that an overall revision be made to the absurd concept that the brain can “invent” a sensation that has no importance in solving the electrochemical problem. When we see the statistics of incidence of these common syndromes we have to conclude that there is an underlying cause and effect that pervades the general population. We are very conscious that our cars need the right fuel to work efficiently but rarely take it into consideration that the quality of food is our sole source of energy synthesis.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally December 2019. 

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A Light at the End of the Tunnel: Uncovering Thiamine Deficiency

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Early Health Issues: Enuresis, Long Term Antibiotics and Gardasil

My name is Eva, I am 24 years old, I am from Spain and I would like to share my story. Since I was born I have been a very healthy and active girl. The only thing to note is that I have always had frequent urination and nocturnal enuresis until I was 12 years old. At age 13, I began having frequent bouts of tonsillitis and with each episode, I was given a course of antibiotics. Eventually, I was taking antibiotics every three months along with ibuprofen continuously. At 15 years old, they gave me the human papilloma vaccine (HPV) – Gardasil.

After the vaccine, I began having fructose and sorbitol malabsorption problems and because of the frequency of antibiotics, I developed abdominal pains. I had a very pale color on my face and I was a little more tired than usual. I kept getting sore throats and at age16 they removed the nasopharyngeal tonsil /adenoids. In spite of all of this, I was living a normal life and continued to excel in school, receiving honors degree in high school.

At 18 years old, I had another course of antibiotics. This time for three months because the pus plates of my throat did not go away. I was exhausted. In the end, it was determined that I had a staphylococcus aureus resistant infection that was resistant to penicillin. I had an antibiogram, and of all the chances of antibiotics to which I was sensitive, the doctor chose levofloxacin. I was given levofloxacin for treatment of 14 days.

A few days after the treatment, in September 2012, I moved to another city to start my university studies (2 careers at a time). After a month, I got another sore throat that continued for three months. They put me on intravenous antibiotic. The doctor proposed to me to have an operation on my tonsils and I accepted. Just before the operation, I became sick again, and since they could not operate on me with an infection, he prescribed a round of amoxicillin with clavulanic acid plus levofloxacin. It had been five months since I had taken the first course of levofloxacin. This was in February 2013. After the operation, a month later, my knee and jaw began to hurt on the left side of my body. The traumatologist told me he had nothing. The dentist took my wisdom tooth, did a root canal and made dental fillings on that side, but my pain continued. I finished the course and that summer was very stressful for different reasons.

At the end of the summer, I went back to take an antibiotic for a tooth infection. A week before the beginning of the course, in September 2013, I started to feel very tired, and one night, in the middle of the street, I got dizzy and lost my sight and I had to go to the floor for a while before recovering. That’s where the nightmare began. I began to have multiple symptoms: tachycardia, nervousness, dizziness, stomach pains, intolerances, etc. At the end. I had an analysis and they gave me a diagnosis: Hashimoto’s thyroiditis. They started to treat it and at 4 months, when I was “stable” (in lab numbers), my left ankle started to hurt as if they were squeezing me with a chain. It was horrible and it started to go up to the knee, to the hip and shoulder and the pain in my mouth was worse. All on the symptoms were on my left side. The doctor said I had tendinitis, without more importance.

Over the next four months, I began to weaken. I had no strength, my legs were weak, and my mental exhaustion was increasing. I went through all kinds of doctors: rheumatologists, neurologists, internal medicine, traumatologists, and at the end, they concluded that I had fibromyalgia and chronic fatigue syndrome. That’s it. That is the best they could do and they offered no help.

Taking Matters into My Own Hands: The Fluorquinolone Connection

I began to read to realize that they are catch-all diagnoses, where they put people with multiple symptoms. Eventually, I found a doctor who began to treat the intestinal microbiota, to change my diet, reduce stress, etc. This was from 2014 to 2016. While it is true that I learned to manage crises so as not to live with pain 24 hours a day, I was stuck. I was still exhausted and had neuralgia on the left side of my body. So over these last two years I have tried other doctors, I have gone to neurologists specialized in amino acid biochemistry, but nobody knows why my health has declined so much. I have tried acupuncture, antioxidant therapy, etc. At the same time, I have not stopped reading, until I came to this wonderful blog two months ago, and suddenly EUREKA! Everything makes sense. Nobody had told me until now the dangers of fluoroquinolones. It is true that there are people who notice the problems of the antibiotic while taking it and have to leave it, it started a month later, but everything fits. My symptoms include:

  • Chronic fatigue which is very debilitating. I have been at home for 5 years, barely able to go out. I cannot study, work, or anything.
  • I have neuralgia / neuropathy ONLY on the LEFT SIDE of the body (no one gives meaning to this), from the head to the left toe.
  • Muscle weakness and rigidity
  • Tendinitis
  • Intolerance to histamine
  • Polyuria, urinary frequency
  • Sleep problems, sleep is not refreshing. I have epic dreaming disorder that does not let me rest. This problem of dreaming and getting up very tired has been a problem since since I was 16.
  • Problems with noise and light; I have to sleep with plugs and mask.
  • Alterations of the nervous system; I startle easily. I have a lot of intolerance to stress.
  • Problems with basic regulation of the body
  • Dizziness every time I get up when I’m sitting or lying down.
  • Recurrent pharyngitis / sinusitis / chest pain.
  • Hashimoto’s thyroiditis
  • Mental exhaustion
  • Weight loss.
  • Intestinal problems, intolerances, dysbiosis, infection by chronic GERD.
  • Swallowing problems. (The left side of my throat is more inflamed on the inside and it is hard for me to pass the food. It gets stuck).

Surely there are more symptoms, but I forget.

At the Root of My Symptoms: Severe Thiamine Deficiency

After reading the work of Dr. Lonsdale, I measured my transketolase and the result suggests quite a deficiency of thiamine: activation TPPE 25%. So I’ll see if trying this I can improve, until now I was lost and I saw the light at the end of the tunnel.

Questions for Dr. Lonsdale: Hello doctor, first of all thank you immensely for your dedication and work, thank you for your research and your book, you are helping a lot of people. I was lost until I found Hormones Matter and read it.  The activation of TPPE is at 24.98%. As I have read, this suggests quite a deficiency of thiamine. I’m going to look for a doctor who wants to help me treat my deficiency. I’ve read that you have to be careful with paradoxical reactions. But I have several questions that I would like you to answer if it is possible:

  1. The urinary frequency since I was born could have something to do with thiamine deficiency? Would this suggest some kind of genetic problem?
  2. Is supplementation with thiamine forever or only until the transketolase of 0? What is the time of supplementation with thiamine? When would I have to repeat the analysis of transketolase to see how it evolves?
  3. Could it be that levofloxacin has done me irreparable damage and I always had thiamine problems? Or can it be something genetic? – What is the suggested treatment?
  4. I have read about 50mg Allithiamine, with large doses of magnesium and a multivitamin, but how high should Allithiamine go – 200mg, 300mg?
  5. What do I do in the face of a paradoxical reaction? Do I stop the supplementation a few days and continue again, or to endure the reaction and continue? I want to give this information to the doctor who will treat me, in addition to his book.
  6. Does it make sense to have only neuralgia on the left side of the body? It is as if I had two bodies, the joints on the right side do not hurt, nor the nerves, only on the left side. I do not have anyone in the family with a similar background. My maternal grandfather was an alcoholic but he managed to quit. My maternal grandmother, 2 aunts and my mother have hypertension. And on my father’s side, my grandmother has always been tired from a young age, with pains and thyroid problems.

Thank you very much, Eva.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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Shattering the Mirror: Becoming More than the Reflection of a Disease

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While writing a letter about myself to an online website recently, I found myself shocked and very much amused by the telling way I accidentally introduced myself. “Hello,” I began my letter, “my name is endometriosis and I am 29 years old.”

Endometriosis?!?” I giggled as I re-read what I mistakenly wrote, I had introduced myself as endometriosis?? Could there be a more obvious way of telling the world that endo defines me?  I suppose not. But who really needs a Freudian slip to guess that one?  Anyone with even a bit of insight could figure out the truth ten minutes after meeting me! And don’t you try to hide it – I’m sure it’s true for you too. Endometriosis consumes and defines the lives of all those who suffer from it.

But is that really true? Does endometriosis really have to infiltrate every part of our lives? Does it have to be the focal point of everything we do, or be the root of everything we feel about ourselves? My initial answer is an emphatic yes; there is no possible way to view our lives beyond the scope of endometriosis. But as I sit to muse about it longer, I begin to see another side.

You see, it’s not necessarily about seeing ourselves as something significant other than the endometriosis; it’s about viewing ourselves as significant despite the endometriosis.

I have been to many support groups for women with endometriosis. Each time I go I am amazed and inspired by the inner strength and beauty of these women. It is truly uplifting to sit and listen to what each of them has to say. To watch as one woman painfully and awkwardly attempts to sit down comfortably on a chair all the while saying something like, “But today is a great day, I only had to take two narcotic pills!!” Or to see another woman comfort a fellow endo-sister by genuinely telling her how strong and beautiful she is or how amazingly she handled a certain situation. I have firsthand experience of being comforted by another woman who was suffering with excruciating pain at the very moment that she held me in her arms to ease my pain. Time and time again I have seen the strength of women who could have legitimately decided to be selfish and angry but, instead, made the choice to be giving and kind.

So next time we look in the mirror and see a pathetic woman controlled by her endometriosis, let’s take a second look. We need to allow ourselves to see what we have become regardless of the fact that we have a terrible disease. Let’s look past the silhouette of a woman hunched over in agony and instead see the proud form of a strong, defiant woman whose illness will not define her; a woman who is powerful, kind, giving and beautiful whether or not she suffers. We are so much more than just a reflection of this disease.

About the author: RC is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. RC is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

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This post was originally published in November of 2013. 

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Chronic Pain, Your Brain, and Yoga

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Chronic pain is an extremely common problem, affecting about one third of Americans. Many different conditions can result in chronic pain, including headache, low back pain, cancer pain, arthritis pain, and nerve pain. In addition, in certain chronic pain conditions, there is an increased likelihood of suffering from additional painful conditions, such as with chronic fatigue syndrome, endometriosis, fibromyalgia, inflammatory bowel disease, interstitial cystitis, temporomandibular joint dysfunction, and vulvodynia. It is not well understood whether having certain pain conditions raise the risk of developing others, or whether conditions that commonly occur together share common risk factors.

In the short term, living with chronic pain is extremely challenging. It is not hard to imagine what the consequences would be of trying to function in daily life constantly feeling like your lower back was broken, or having your head hurt most or all of the time. The pain wears you down, and it makes you irritable and short-tempered. Most people start to restrict their activities because of pain, which leads to social isolation, which leads to depression. Small tasks become difficult, as it is hard to focus through pain. It is hard to sleep while in pain, which further wears you down.

In addition to being extremely difficult to deal with on a daily basis, chronic pain has multiple long term effects. Studies have found that pain causes both emotional and cognitive changes. Many studies have found that chronic pain increases the risk for depression and anxiety. This comes as no surprise, thinking about all of the difficulties a chronic pain patient faces. However, more surprising are the cognitive changes. Pain causes difficulties in concentrating, difficulties with memory, and impaired decision making.

How Does Chronic Pain Affect Your Brain?

These effects happen because chronic pain affects the brain chemistry, and changes the wiring of the nervous system. The brain is made up of two different types of tissue: grey matter and white matter. The grey matter contains the main bodies of the brain cells, and the white matter contains the parts of the cells that connect the different areas of the brain together (axons). The volume, or density of the grey matter, is positively associated with abilities and skills—in other words, the higher the volume of the grey matter, the better the abilities are. Different areas of the brain control different types of abilities and skills. The effects of changes in the white matter are somewhat more complex and less understood, but changes in this area can also affect functioning.

Studies of patients with various different types of chronic pain have shown that in these patients, there is a decrease in the volume of the grey matter in areas of the brain involved in pain processing and regulation, in mood regulation, and in cognition. In other words, in exactly the areas that have been observed to control the functions that have been found to be altered in chronic pain: depression and anxiety, and difficulties in concentrating, memory, and decision making. It is also well known that controlling pain becomes more difficult, the longer the pain has existed, and this is likely because the grey matter in areas of the brain involved in pain processing are actually decreased by the pain itself. Pain can become its own disease over time, to some extent independent of the original source of pain. Chronic pain is also associated with white matter abnormalities.

Treating Pain Early is Recommended in Theory, but Difficult in Practice

This is why many pain specialists state that it is very important to treat chronic pain as early as possible. In addition to the fact that pain becomes harder to treat over time, the longer you leave a person in pain without adequate treatment, the more suffering they will experience. However, treating pain early can be a challenge for many reasons. Many pain clinics have unmanageable waiting lists, and most primary care practitioners do not have the training required to treat pain effectively. And then on top of that, some of the pain conditions, especially those affecting women, have lengthy times to diagnosis, during which time the women are usually left suffering with untreated pain. Endometriosis, interstitial cystitis, and vulvodynia are examples of such diseases.

Yoga Can Help Decrease Chronic Pain

Despite the difficulty in getting medical help both for chronic pain itself and for the underlying diseases that cause it, if you are suffering with chronic pain, there is one activity that can help reduce the pain somewhat, and interestingly, it happens to have the exact opposite effect on the brain as chronic pain does: yoga. Although taking up yoga is no substitute for receiving effective medical care, many studies have shown its effectiveness in improving a wide variety of pain conditions. Performing a search of one common index of medical journal articles comes up with over 200 citations on yoga and chronic pain. It has been studied for lower back pain, neck pain, osteoarthritis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and more, all with similar results .

Although the studies vary somewhat in the type of yoga used, most study gentle types of yoga such as Hatha yoga, with study participants taking one to two yoga classes per week. Levels of pain and ability to function are measured before starting the yoga classes, and are usually reassessed after two to three months of yoga. These studies find a significant decrease in pain, and increase in ability to function, after practicing yoga for a few months. In one study, yoga was found to be superior to a general exercise program.

Effects of Yoga on the Brain

The specific effects of yoga on the brain have been studied, and yoga was found to increase volume of the grey matter in areas involved in pain perception and modulation, focus and attention, body awareness, and emotional regulation. In addition, it increased the connectivity of the white matter in the brain. Amazingly, these are all areas that affected by chronic pain. If there could be a therapy tailor-made to reverse the effects of chronic pain, yoga would be it.

Chronic pain patients may be nervous about starting a therapy that will involve movement, and indeed studies have shown that patients who are fearful of movement are less likely to consider a pain treatment that requires it. However, the research also shows that movement therapies such as yoga are generally safe for chronic pain (but, always check with your own health care practitioners to make sure any new exercise program is right for you). There are many gentle types of yoga such as restorative yoga and yin yoga that do not require a lot of movement, and these may be good starting points. In addition, you can also find therapeutic yoga instructors, or instructors that will work one on one to personalize a program for you. In combination with traditional medical therapies, yoga may be a valuable tool to reduce pain in chronic pain patients, and to improve their quality of life.

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

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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.

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Women in Pain: Problems and Mistreatment

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Chronic pain in North America is a major problem for men and women alike, affecting about one-third of adults. Many people of both genders do not receive adequate treatment for their pain. This causes great personal suffering, as well as high costs to the economy through direct health care costs and loss of work productivity for those in pain. However, women with pain face additional problems that suggests there is a systematic bias in the way healthcare is delivered to women. Diseases that affect mostly women are generally poorly understood and understudied, and although women report pain that is more frequent, more severe, and of longer duration than men, in general women’s pain is treated much less aggressively.

Women are at higher risk of developing a chronic pain condition than men. For example, women have triple the risk of autoimmune diseases, which are often associated with chronic pain, compared to men. Women also suffer from certain painful diseases that are rare in men, such as endometriosis and vulvodynia. Endometriosis alone affects one in ten women, and women who have endometriosis often have other painful diseases as well, such as interstitial cystitis/painful bladder syndrome.

However, research into causes and treatments for these diseases that disproportionately affect women is sadly lacking. A report written by the Campaign to End Chronic Pain in Women looked at six conditions common in women that are routinely misdiagnosed and ineffectively treated: endometriosis, vulvodynia, chronic fatigue syndrome, fibromyalgia, interstitial cystitis/painful bladder syndrome, and temporomandibular (TMJ) disorders. Examining funding to these six conditions by the National Institutes of Health (NIH) revealed that on average, the NIH spends $1.33 per affected patient on research into these conditions, compared to $186 per patient for Parkinsons’s disease, or $53 per patient for diabetes.

However, one need not look at diseases that are underfunded, poorly understood, and lacking effective treatments to find evidence of a gender bias in medicine. One of the best examples of gender bias is, surprisingly, in coronary heart disease. When presenting to emergency rooms or hospitalized for a heart attack, multiple studies have shown that men receive faster access to diagnostic tests and treatments, and men are more likely to receive advanced procedures and better care (for example,see here, here, here and here), and these disparities have not changed over time.

Although heart disease can present differently in men and women, atypical presentation in women does not account for all of the difference in delayed or lack of access to tests and treatments. In one study of doctors evaluating hypothetical patients— male patients and female patients presenting with typical heart attack symptoms and identical risk factors– the doctors did not make different recommendations for the male and female patients. However, when stress was included as a risk factor, only 15 percent of doctors diagnosed heart disease in the women, compared to 56 percent for the men. This study suggests that doctors are much more likely to write symptoms off as psychological when the patient is a woman. And women are medicated as if their pain is emotional instead of physical: for example, after coronary artery bypass graft surgery, women are less likely than men to receive opioid pain medication, and more likely to receive sedatives instead.

Many studies have shown that female gender is a major risk factor for the undertreatment of pain, across many different types of pain. After abdominal surgery and appendectomies, women receive less pain medication than men, even though many studies have shown that women are more likely to report higher levels of pain than men. For cancer pain, and pain caused by HIV, women are significantly more likely to be undertreated for pain. Even paramedics are more likely to give opioid analgesics to men suffering from pain pre-hospital admission than to women. In general, doctors and other medical professionals are more likely to view women’s pain as caused by emotional factors even in the presence of positive test results, and are more likely to administer tranquilizers, antidepressants, and non-opioid analgesics to treat women’s pain.

Women face obstacles to getting appropriate care for many different diseases, at every step of the process. Women’s diseases tend to be underfunded, underresearched, and poorly understood, so getting a diagnosis is difficult, especially when there is the additional obstacle of health care providers tending to assume that women’s symptoms are psychosomatic. Once diagnosed, women do not receive the same level of care for their diseases that men do. And if women can be shortchanged on care for cardiac conditions, which tend to be taken seriously in our society, well researched, and have evidence-based guidelines to guide treatment, imagine how poorly women may be treated for diseases like endometriosis, for which myths about causes and effective treatment abound, and their pain cannot be measured with any objective tests.

Until medical care for women’s diseases moves from the 1950s into the present day, the only solution for women is to be extremely persistent. Women need to seek out the few care providers who understand their disease and are up to date on the latest, albeit sparse, research, and they need to be persistent about having their symptoms acknowledged and treated by their care providers. And in general, we need to keep pushing for better awareness of these problems, and funding for research so that women can receive the medical care they deserve.

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The Truth About Salt

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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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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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