A Three-Dollar Bottle of Life
What if you were told that a $3 bottle of liquid could make the difference between a major flare-up and a mild symptom — between a very bad day and a manageable one?
This was exactly what my doctor discovered a few years into my struggle with fibromyalgia. Before diagnosis, I had been tested for everything imaginable: MS, lupus, brain tumor (due to the constant migraines), rheumatoid arthritis, thyroid disease, cancer, and the list goes on.
Through research, my physician stumbled upon the link between B12 deficiency and fibromyalgia. I had been diagnosed with fibro, with peripheral neuropathy and migraine, but no one had been able to connect the dots and each day I grew worse. The hidden culprit of B12 was hard to detect because in the standard blood tests, my levels were mostly in the normal range.
Fortunately, I had a caring doctor who wouldn’t rest until he got to the bottom of my debilitating issues.
The Roles Vitamins Play
Different vitamins play different roles in our body and overall health, and it has been proven that those who deal with the many symptoms of fibromyalgia tend to be deficient in one, and often more than one, of the essential vitamins — namely B12, folate, magnesium, potassium and vitamin D.
Vitamin B12 seems to be the most notable one in that it plays a significant role in the formation of red blood cells, in the health of your central nervous system, and it aids in the function of your metabolism. Vitamin B12 is water soluble, meaning your body doesn't store it in reserves, so you need to take it in regularly.
B12 is found in animal products such as milk, meat, poultry, fish and eggs. Protein foods such as tuna, steak, chicken, yogurt and fortified cereals are good nutritional sources.
Vegetarians and those who don't consume B12-rich foods can get B12 from vitamin supplements. Since the problem with vitamin levels in the body of a person suffering from fibro lies in difficulty of absorption into the proper places of the body, the vitamin in pill form is most often not adequate enough to supply the necessary levels.
For this reason, many doctors prescribe the vitamin as an injection to absorb into the blood stream rather than being flushed out.
My personal experience was that above and beyond the standard mal-absorption of B12, I have a rare antibody that totally rejects it.
This is why there were false readings that reflected a normal level when my body was depleted, or at the very least not using what was coming into my body. Without B12 functioning properly, a patient is in danger of serious health consequences.
Liquid Gold
B12 and the other family of B vitamins — most notably folate — are often prescribed for people suffering from chronic fatigue syndrome and fibromyalgia. Researchers believe these nutrients aid in several nerve-related disorders, including multiple sclerosis and Alzheimer’s disease.
Some research has proven that those diagnosed with Alzheimer’s or dementia were actually just severely deficient of B12 and once they were given high doses over a long period of time, their memory began to improve again. The typical chronic fatigue syndrome and fibromyalgia patient also suffers from symptoms that are distinctly neurological, such as numbness and tingling in extremities, memory loss and balance disorders.
Aside from the other functions previously listed concerning B12, the vitamin also protects myelin, the protective coating around nerves. Deficiencies can cause anemia and irreversible nerve damage; this is something that I personally experienced because the deficiency was undetected for over 16 months.
Without B12, the myelin sheath around the nerves begins to erode, leaving them exposed. The best way I was able to explain the sensation and pain I felt during the worst of this deterioration was having electrical cords inside my body without the rubber coating and electricity firing through my nerves shocking my system.
Dose It Up
Given the obvious benefit and even dire necessity of B12, how much is enough and how much is too much? Typically a dosage of 1,000 micrograms a month is what is prescribed for a somewhat healthy patient needing just a little boost in B12.
However, some doctors who specialize in the treatment of fibromyalgia are choosing to augment oral supplementation of B12 with injected doses, comparable to or higher than doses typically prescribed for patients suffering from a B12 deficiency. Patients self-administer the dose using the same kind of syringe a diabetic would use to inject insulin.
Research has also shown that much higher doses are even more beneficial than once thought.
North Carolina-based internal medicine specialists Charles Lapp and Paul Cheney, each specializing in treating chronic fatigue and fibromyalgia, began experimenting with high dose vitamin B12 therapy in the early 1990s.
Initially, they were intrigued by three studies reported in the New England Journal of Medicine, which revealed high dose B12 therapy had either cured or greatly improved the symptoms of patients suffering from chronic fatigue and fibromyalgia-like neurological symptoms.
Interestingly, the patients in these studies had normal B12 blood counts, which would suggest that on paper, they had enough B12 in their systems. What the research showed was at least half of them experienced significant improvement in all symptoms, and as many as 80 percent reported at least some improvement, at doses of between 1,000 micrograms to 5,000 micrograms of B12 injected three times a week.
These results were thrilling for the doctors and their patients, but were still a mystery as to how or why the B12 was helpful even though their B12 blood levels were normal at the onset, and remained normal even at higher doses. The speculation was that their patients might have a problem with B12 absorption and utilization at the cellular level. Ongoing research through the years has clarified this speculation.
What It All Means
In 1997, Swedish scientists described their study of 12 patients who fulfilled the diagnostic criteria for both chronic fatigue and fibromyalgia. Although the patients had normal levels of B12 in their blood, they had extremely low or non-detectable levels of B12 in their spinal fluid, and by inference, in their brains.
The low amounts of B12 in the spinal fluid correlated with the degree of fatigue experienced by the patient. The finding suggested at least some chronic fatigue and fibromyalgia patients fail to metabolize B12 properly.
A year after this research, further findings determined that not only did chronic fatigue and fibromyalgia patients lack B12 in their nervous system, they also had abnormally high levels of homocysteine, an amino acid-like substance that is normally regulated in the cells by B12.
Among other things, high levels of homocysteine have been linked to heart disease. Further results from this research by the Swedish scientists showed that the higher homocysteine levels in patients were typically three times higher than in healthy people — the higher the level, the greater the severity of fatigue.
They concluded that the absence of B12 in the nervous system and high homocysteine levels among chronic fatigue and fibromyalgia sufferers constitute "an underlying factor" in both diseases.
Three-Dollar Bottle of Life
For me personally, these findings saved my life. After almost two years of testing, constant pain, chronic fatigue, weight loss and weakness, my doctor discovered all the effort we had gone through led us to a simple answer found in a small vial of B12.
For the cost of a little over $3, I began regaining a measure of my life back. I was instructed to take an injection three times a week and eventually once a week.
It is also suggested that patients take oral supplements of other vitamins, particularly B6 and folate, since excess B12 can potentially compete with other B vitamins in the cells and hinder absorption.
A Final Word
B12 deficiency is not the root cause of fibromyalgia, nor is taking more B12 the cure for the disease. Rather, the deficiency is a condition within or because of the illness.
Developing a regime of B12 intake has proven to bring positive and often life-changing results. While it won’t cure you, it will prevent further deterioration and will control your symptoms.
Think about those exposed nerves again like the electrical wire without the rubber. B12 becomes the protective coating and the conduit for the body’s energy to flow as it should. I can’t guarantee what it will do for you, but for me that little bottle saved my life!