fibromyalgia - Page 2

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

Gardasil and Thyroid Cancer: A Personal Account

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One reads about misdiagnoses in the medical world but no one truly talks of the frustration, relief and anger that follows after a patient finds out they have been misdiagnosed for years. I, for one, understand that feeling and everything that comes with it –this is my story.

I am 27 years old and have been sick for seven years. When I was 20 years-old I blamed my illness on the HPV Gardasil vaccine, which sent me to the hospital after two days of taking the shot.  Following that incident, I was in and out of hospitals for years as they tried to find out what I had. The doctors were baffled and didn’t understand why I was having non-epileptic seizures; I experienced sensitivity to light, syncope, sudden loss of consciousness as many as 2 to 3 times an hour, followed by confusion, heart palpitations, extreme fatigue and pain and weakness in my legs. Although doctors did every test in the book, none of them knew what was wrong with me.

In 2008 I met with a neurologist at Winthrop University Hospital. He immediately admitted me for an MRI and CAT scan of my brain. After several weeks in the hospital the neurologist sent me to Long Island Jewish Hospital in New York, where I was admitted for two weeks for monitoring. After weeks spent in multiple hospitals, the doctors explained they couldn’t find the problem and had no concrete diagnosis. I was confused and frustrated; I knew there was something wrong.

The pain continued to increase; I felt pins and needles throughout my entire body and soon I couldn’t feel my feet or be able to stand. If I tried to stand for a few seconds, I would fall. I tried more doctors, but many of them didn’t feel comfortable treating me.  Needless to say, I started to give up. I quickly went from walking perfectly fine, to needing a walker, and then being confined to a motorized wheelchair. In such a short amount of time for a young woman, this experience was horrifying. I couldn’t hold a job or go to college since the pain in my legs and feet was excruciating.

After more tests – EMG, CAT scans, MRI’s, and CTA’s – my lumbar puncture test showed I had fluid in my brain. How could this be I wondered.

In 2010 I went to a rheumatologist and he discovered that I had Fibromyalgia and Peripheral Neuropathy. To confirm the diagnosis several excruciating nerve tests were done. It turned out that this disease caused my immobility for many grueling months. The test results concluded I had nerve damage in my legs, which was preventing me to walk.

After years of tests, scans, blood work, and thousands of dollars in hospital bills, this rheumatologist finally understood my diagnosis. Unfortunately, the seizure-like symptoms were still occurring. My entire family and I were ready to give up in the summer of 2010, when I decided to go to Winthrop University Hospital in Mineola, New York to do Hyperbaric treatment. The doctors gave me Hyperbaric Oxygen Therapy, which was a life-changing therapy. The seizure activity lessened as the weeks passed and I finally returned to college. I was feeling better for the first time in many years.

In the summer of 2012 I began to have severe pain in my neck. At this time I didn’t have a regular physician so I found one and discussed my entire health history with him. The physician was extremely concerned so he sent me to see an oncologist right away. The oncologist reviewed my blood work and sent me to an endocrinologist because of the results.  I waited several weeks to see the best chief endocrinologist in the area, when finally I felt some hope. I explained all my symptoms to the doctor including the pain in my neck, my weight gain, and my severe fatigue. He diagnosed me with Hypothyroidism. The doctor put me on a low dose of medication (Levothyroxine) and said, “see you in six months.” Hypothyroidism, I found out, is a thyroid disease in which your thyroid gland does not make enough of the thyroid hormone. Weeks later I found out not only did I have Hypothyroidism, I also have Hashimoto’s Thyroiditis which is an autoimmune disease that attacks your thyroid.

Weeks after this diagnosis, I began to have more pain in my neck and was starting to have problems swallowing food and water. At first I thought it was a cold coming on, but as weeks went by it didn’t subside.  I returned to the endocrinologist and expressed my concerns but I was told that nothing was wrong and that I was suffering from a cold. I knew that I didn’t have a cold because I had just seen my regular physician who claimed I was healthy. The endocrinologist wouldn’t issue me a sonogram for my neck, so I called my oncologist who wrote me a script that same day.

In July 2012, I had a complete sonogram done of my neck at the Woman’s Breast Imaging Center located in Garden City, New York. That day turned into a four hour appointment, which was uncomfortable to say the least, especially since following my sonogram I had to be issued a biopsy. Hearing biopsy for the first time in my life was yet another horrifying experience. I remember sitting up on the examination table, crying as my cousin and mother tried to calm me down.

Several days later I received a call from the doctor in the imaging center. I knew right then and there, something had to be wrong. The doctor said my name, then paused.  My heart skipped a beat as I waited for the news. “Danielle, you have Thyroid Cancer,” he said. “You need to be seen immediately at a cancer center to treat the two tumors in your body.”  Tears streamed down my face. I couldn’t comprehend the words that were just said to me—I have cancer?

I realized then that the endocrinologist not only misdiagnosed me but didn’t pay attention to me when I was in pain. He brushed my symptoms and my concerns off as if I didn’t matter.  Needless to say, I was livid. 

Two days later I got a formal apology from the endocrinologist. I was shocked and impressed that he called. He apologized for misdiagnosing me and told me that if there was anything he could do to let him know. “I assume you do not want to come back to our office, but if you need anything I will be happy to help,” he said. I told him that the one thing he could learn from this is to listen to his patients. He took this advice with an embarrassed silence.

It took me four days to figure out where I should be treated. I was overwhelmed by the words, ‘you have cancer” and understood these three words would change my life completely. After thorough research, I decided to get treated at Memorial Sloan Kettering Cancer Center located in New York City. I had an amazing surgeon who did a total thyroidectomy and removed several lymph nodes that were cancerous. In December 2012, I started my treatment, which included Radioactive Iodine because of the spread. I had to be put in isolation for a few days because I was radioactive. While the experience was scary and unnerving, I owe a big thank you to my amazing surgeon and to my wonderful doctors at Memorial Sloan Kettering for saving my life. It was a relief knowing that my doctors had my best interest in mind.

Knowing something was wrong with my body when the world kept telling me otherwise was a lonely and frustrating–especially for seven years. Although the time was tough, it also taught me that I had to become an advocate for myself. Not only did the diagnosis of Papillary Carcinoma Thyroid Cancer change my life, but the journey itself did as well. I learned to trust my instincts, and that I am stronger mentally, physically and psychologically than I ever thought possible.

PLEASE GET YOUR NECK CHECKED!!

Below are resources that help those suffering of Thyroid Cancer:

1. Thyroid Cancer Survivors Association- http://thyca.org

2. Light of Life Foundation – http://www.checkyourneck.com

3. Follow Danielle’s Journey:  http://findinghopewiththyca.blogspot.com

Hormones MatterTM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

My Battle with Endometriosis and Migraines

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Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.

Every Man Knows a Woman with Hormones

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And we all have hormones. Those wonderfully mysterious chemicals circulating and cycling with the regularity and rapidity that makes one’s head spin, female hormones are at once the bane and the joy of man’s existence. Our hormones are what make us find you attractive, laugh at your jokes, date you, sleep with you and bear your children. Our hormones can also turn us into stark, raving lunatics at seemingly benign comments. Most men know and understand this, at least intuitively. You are prepared for the ‘wrath of raging hormones’ if not from direct experience with your mothers, sisters or girlfriends, then from the many locker room and sitcom epithets ever present in modern culture.

What most men (and many women) are not prepared for, and I’d venture don’t understand, is the very real chemistry changes behind the wrath. Much of this goes far beyond just mood changes, often eliciting a bevy of symptoms and disease processes that we’re only now beginning to understand.

In many ways, hormones are just like every other chemical circulating in our bodies, regulating this system or that, entirely responsible for certain functions, secondary and tertiary players in others. Men have the same hormones as women, just in different concentrations. And hormones cycle in men, but not so radically and regularly. What is different between ‘men’s hormones’ and ‘women’s hormones’ is not the hormones themselves, but the systems and structures on which they operate and the reproductive functions that ensue.

To state the obvious, women have ovaries and a uterus. Those structures, along with the brain form the foundation of a beautifully orchestrated and incredibly complex chemical feedback system that not only controls reproduction, but influences just about every aspect of our lives. Estradiol and progesterone concentrations increase several fold across an average cycle, preparing the uterus for a possible pregnancy. In the absence of pregnancy, hormone levels plummet and the lining of uterus, the endometrium sheds. The all-too-familiar mood changes and pain commence.

As a man viewing this process from the outside, it is difficult to appreciate the magnitude of hormone changes affecting the women in your life. When hormones act on the brain or in the body, they do so in much the same manner as many common drugs. In terms of chemistry, menstrual cycle hormone changes are very similar to a drug addiction/withdrawal pattern with increasing dosages of stimulants (like amphetamines) during the first two weeks, a combo pack of sedatives (like Valium or alcohol) plus a few stimulants during the second two weeks, followed by cold turkey withdrawal. Rinse and repeat, over and over again, approximately 450 times during the course of her lifetime. Pregnancy and postpartum follow the same pattern only the dosage of hormones, the duration of exposure and the magnitude of the withdrawal are increased exponentially. The veritable cocktail of hormones that make these functions possible is breathtaking.

What happens when one or more of these chemical messengers gets a little out of sync and the system become dysregulated, as is inevitable in any system that cycles so frequently? Or what happens when an illness or disease, maybe not caused by hormones, develops in the context of this ever fluctuating female chemistry? You get a bit of chaos (think butterflies, not randomness).

As a man, who has women in his life, you have two choices, ignore and avoid the chaos and hope there are no storms on the horizon, or embrace the chaos and find ways to anticipate and alleviate the pain. Many choose the former, including much of medical science. This is the avoidable ignorance, I wrote about last week. I’d like to think the men who love us, choose the latter. Certainly, the men who shared their wives’ and daughters’ stories recognize the need to investigate and develop better treatments for women. They may not understand fully the complexity of women’s hormones, but they understand the suffering, sense that symptoms are being ignored and want nothing more than to make it all better.

Living and Coping with My Wife’s Fibromyalgia

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Fibromyalgia

I’m a relatively healthy guy. Most of the aches and pains I experience are from doing stupid things in my youth, that are now showing up as I get older.

My wife Bonnie and I just celebrated our 21st wedding anniversary. To look at her you’d think, first, she doesn’t look her age (52) and second, she looks positively healthy. In fact for most of our lives together we’ve been very outgoing and outdoorsy people. Hiking and camping were regular activities along with swimming and other sports. But within the last 5 years things changed quite a bit. She was no longer able to do long hikes when we went camping. During our travels around the country visiting cities that we love, she couldn’t handle walking around and sight-seeing for very long. Then she began to come home from work, exhausted and would say that she needed to take a short nap, which began to turn into naps that lasted until the next morning, or if she didn’t have to work the following day, a two day nap.

After many doctor visits and testing by specialists and quite a few mis-diagnoses including Irritable Bowel Syndrome, possible Crohn’s Disease, maybe Lupus maybe not, it was confirmed she has fibromyalgia. So now we were at least able to put a name to the symptoms and problems that she was having and that had changed her life so dramatically.

And on top of all this, she has started menopause, so she now has a double whammy and additional symptoms to deal with on a daily basis. Hot flashes and constant pain don’t go very well together.

It’s not an easy condition to deal with and I know it’s horrible for her, and sometimes all you can do is just listen. Even the myriad of medications she is on are only able to ease her symptoms, but they don’t effectively fix anything and we don’t know if they ever will. So for now she has good days and bad days, and I had to realize that I can’t fix her, all I can do is love her and try to comfort her as best I can and try not to think selfishly about not being able to do certain things with her any longer.