PREAMBLE to FIBROMYALGIA

PREAMBLE to FIBROMYALGIA

Once you will have read this preamble, you will know more about fibromyalgia than most doctors, specialists included, who are telling the patients: "We don't know what causes this condition, and treatments don't work well, so you're going to have to learn to live with it." As we shall see, fibromyalgia is too complex to give a "one size fits all" treatment summarized in antidepressant drugs, which you have been or will be prescribed routinely by your doctors, rheumatologists included.

Nowadays, when patients complain to their doctors that they suffer from chronic widespread pain, abnormal tenderness, fatigue, sleep disturbances, cognitive problems, the diagnosis they usually get is "fibromyalgia syndrome" (FMS). The consulted rheumatologists will confirm the diagnosis by physical examination after having ruled out other rheumatologic conditions and normal blood tests. Some patients with the fatigue element most dominant are diagnosed suffering from "chronic fatigue syndrome" (CFS). The majority of patients I see in clinical practice who have FMS also have CFS.

These diagnostic labels, FMS/CFS, are used by the medical establishment when the underlying cause for the collection of symptoms so described is not understood. For this reason the treatment of FMS/CFS is usually approached symptomatically, that is, on a symptom by symptom basis.

Most patients don't just live with it. They try various treatments, antidepressants, antalgics, hydrotherapy, psychotherapy, massage therapy, chiropractic care, alternative medicines, nutritional supplements. At best, the drugs slightly reduce the severity of some patients' symptoms. More often, the drugs make the patients feel worse, so they stop taking them. I see every day at my consultation patients with FMS/CFS who refused to take antidepressants prescribed by their doctors.

Because the underlying cause is not treated, the patient almost invariably remains unwell and so the prognosis for FMS/CFS is usually regarded as being very poor.

Solutions exist yet that will allow you to recover a normal life

Physicians that still argue today that FMS/CFS has no known cause ignore evidence that points directly - and conclusively – to underlying causes of fibromyalgia, and thus deprive patients of effective treatments.

We should cease to consider the label FMS/CFS as an unexplored and mysterious field. Years of experience of some research and treatment centers, on thousands of patients, have showed new perspectives in the etiology, pathogenesis, diagnosis and treatments of this conditions. Therapeutic progresses have been made, reach of all, general practitioners and patients.


This preamble is a focus on the different possible causes of FMS/CFS, each of which can be addressed and efficiently treated, and because we are dealing with a heterogenic condition, even more successful with combined treatments.
All these treatments are prescribed in my clinic in Kfar Saba. It is conventional treatments prescription. The Guaifenesin, I develop at length in this website, is one of them – I will mention later the principle. When asked why physicians, including rheumatologists, ignore what follows, the answer is simple: the absence of an officially recognized cause of the FMS/CFS does not leave room for the multidisciplinary approach that requires, hence the lack of interest in it from the medical profession or lack of initiative from physicians who stick to what they have learned in the Faculty.

Remind of conventional treatments
It is important that you know why the usual treatments - which can be summarized in antidepressant drugs - although not working well, are offered to you, before you will be edified to learn the existence of very effective treatments which, unfortunately, are never offered to you. I will mention the Lyrica, a drug also prescribed, to evoke a cause of recent discovery of fibromyalgia.

The antidepressants
The identification of fibromyalgia in 1990 by the American College of Rheumatology as a distinct diagnostic entity is based on clinical observation, but does not refer to any etiology.

Studies in 1989 by I.J. Russel were the first to support the concept that the fibromyalgia disorder is a pain modulation induced by dysregulation of serotonin metabolism. Since then, the current use is to prescribe to each FMS/CFS SSRI antidepressants (selective serotonin reuptake inhibitor: Prozac, Cipralex, Cymbalta) or tricyclic antidepressants (aminotriptiline: Elatrolet, Elatrol) in order to increase brain levels of serotonin, rate that studies frequently mentioned low in blood testing of fibromyalgia patients. Their efficiency is not negligible but is mixed. Some patients react adversely and sometimes need to stop these medications at the first tablets. Others pursue these treatments by finding some benefits, lack of anything better. (Click for more)

In my opinion, antidepressants are not the right choice of treatment to offer to patients with FMS/CFS.

Lyrica
Each fibromyalgia patient has tried at one time or another Lyrica, or in addition to an antidepressant, either as first-line treatment. Lyrica is a medication used in the treatment of neuropathic pain, especially in diabetics and patients with post- herpetic neuralgia. It has analgesic, anxiolytic and antiepileptic effects. Its mechanism of action in patients with fibromyalgia is not known. For some it has dramatic effects, for others it is completely ineffective. Side effects are often important (weight gain up to 40 pounds or more, dizziness, drowsiness, depression, mood swings, suicidal thoughts), so that number of informed patients refuse to take it.

The effectiveness of Lyrica for a number of fibromyalgia patients raises the hypothesis of a possible identifiable cause of FMS/CFS.
Indeed, damage to nerve fibers in the skin biopsy and other objective evidence of a disease called small-fiber polyneuropathy (SFPN) were detected in about half of a small group of people with fibromyalgia in a study reported by Dr. Anne Oaklander, a Harvard neurologist, in the American Neurological Association (ANA) 137th Annual Meeting, Oct. 2012 and published in the journal Pain (Oaklander AL, Herzog ZD, Downs HM, Klein MM, November 2013, 154 (11):2310-6). In Nov. 2012, at the conference of the American College of Rheumatology, Dr. Levin, University of Arizona, reported that 61% of 56 patients with fibromyalgia his studied had SFPN.

The FMS/CFS has many symptoms in common with SFPN which is a recognized chronic widespread pain for which there is objective tests accepted. Besides the fact that it can cause all kinds of pain and extreme sensitivity to touch, involvement of small fibers is related to cognitive, digestive, urinary, sexual, etc. functions, and responsible of what is known as autonomic nervous system symptoms, which are often found in FMS/CFS. But instead of FMS/CFS which has no known "officially" causes and few effective treatments, SFPN is a clear and well defined disease caused by dysfunction and degeneration of small fibers peripheral neurons known to be caused by certain specific conditions which can be treated and sometimes cured.

"This provides some of the first objective evidence of a mechanism behind some cases of fibromyalgia, and identifying an underlying cause is the step towards finding better treatments", says Dr. Oaklander. "Until now, there has been no good idea about what causes fibromyalgia, but now we have evidence for some but not all patients. Fibromyalgia is too complex for a 'one size fits all' explanation", concludes Dr. Oaklander. Other doctors and researchers share this opinion. These findings could help explain why a nerve drug like Lyrica works in some FMS/CFS people.

Since then, some FMS/CFS doctors suggest that fibromyalgia could be better called "fibroneuralgia" for some people. They believe that if tests show you have SFN in your skin you may very well have it in your gut, bladder and genitals (interstitial cystitis, chronic prostatitis, vulvodynia), central nervous system, and so on.

These findings suggest that some patients with chronic pain labeled as fibromyalgia have unrecognized SFPN, meaning that when diagnosed FMS/CFS, it would be a sometimes treatable neuropathy.

The interest that I brought to Lyrica gave us the opportunity to discover a cause of FMS/CFS, cause unknown to most doctors. More is to come.

Fibromyalgia: a medical mystery solved
So said the late Dr. John Lowe, director of research at the Fibromyalgia Research Foundation.

Fibromyalgia is a syndrome that actually reflects heterogeneity causes. Komaroff et al. of Brigham and Women's Hospital, Harvard Medical School, have concluded that FMS/CFS "is an illness characterized by activation of the immune system, various abnormalities of several hypothalamic-pituitary-thyroid axes, and reactivation of certain infectious agents ".

1- Hormonal Dysfunction

Evidences, remarkably described and commented by Dr. Lowe, do not fail to say that one of the main causes of FMS/CFS is too little thyroid hormone regulation of patients' bodies. Hypothyroidism is very common in FMS/CFS. It is always fascinating to hear people labelled with fibromyalgia comparing symptoms with people diagnosed with hypothyroidism and discovering just how similar they are! The hypo-thyroid metabolism is often undiagnosed, or too late, because most of these patients have normal thyroid blood tests. Undiagnosed hypothyroidism is due to a too wide TSH reference rate (according to the guidelines of the American Association of Clinical Endocrinologists – AACE – in 2002), or to hypothalamic-pituitary causes (called central or secondary hypothyroidism) often responsible for a normal TSH or, paradoxically, low TSH. It can be also an undertreated deficiency of thyroid hormone. Many patients FMS/CFS also have trouble converting their T4, which is an inactive hormone, in the active hormone T3. Moreover, thyroid resistance is present in many FMS/CFS patients, so endogenous thyroid hormone T3 does not appropriately stimulate thyroid receptors. Resistance means that the tissues of patients, or only some tissues require higher than normal T3 to maintain normal metabolism concentrations. It has been shown that every tissue, every organ, locally controls its own thyroid metabolism.

A study published in Clinical Rheumatology in May 2007, showed that although basal thyroid hormone levels of FMS/CFS patients were in the normal range, 41% of the patients had at least one elevated thyroid antibody, indicator of a primary hypothyroidism (Hashimoto's disease). So, I repeat, a normal TSH does not exclude hypothyroidism.

My site "hypothyroidism" will bring you all the explanations in detail about what has just been mentioned – and what follows: click on the word Hypothyroidism framed at the top of the cover page of the site "Fibromyalgia".

Dr. Lowe wrote: " If you have the criteria for fibromyalgia, it is that probably you were hypothyroid from the beginning ... It is important to recognize in fibromyalgia patients with primary hypothyroidism (Hashimoto's disease) or central (hypothalamic-pituitary dysfunction) that the signs and symptoms of fibromyalgia are the product of thyroid hormone deficiency".

It is important to treat the patient and not only a blood test. A level of TSH that may be healthy for many patients can represent a deficiency for others. Blood test results do not always correlate well with the patient's symptoms or levels in the bloodstream do not always reflect those in the cells of metabolically active tissues where the thyroid hormone is actually needed. Unfortunately, doctors nowadays focus too much on TSH test result rather than giving weight to the signs and symptoms, thus they are left in ignorance of the involvement of a hypo-thyroid metabolism causing FMS/CFS.

Therapeutic evidence. A large majority (85%) of FMS/CFS patients presenting symptoms of hypothyroidism with normal blood tests are significantly improved with treatments that aim to restore thyroid metabolism. However, conventional treatments using levothyroxine (T4 only: Elthroxin, Euthyrox, Synthroid) are rarely effective. A more appropriate therapy will be required using T3 or T4/T3 combination.

However, it should be noted that if a deficiency of thyroid hormone will contribute to slow metabolism, simply administering thyroid hormone replacement therapy will not on its own bring about a recovery if the patient has adrenal fatigue. Adrenal insufficiency, very common in patients with FMS/CFS, and often the cause of serious fatigue, must necessarily and previously be treated. The ignorance of adrenal fatigue is often responsible for treatment failure of thyroid hormone replacement therapy. Some patients also have deficiencies or imbalances of other hormones, estrogen and progesterone, which must be taken into account.

2 - Immune Dysfunction

It has been shown that FMS and CFS are both autoimmune diseases. They are often associated with other autoimmune diseases. Enhancing of immune function by an immune-stimulant treatment is an important and indispensable component in my clinic in the care of patients FMS/CFS. It is complementary to other therapies.

3 - Chronic bacterial infections

Numerous studies have demonstrated a high incidence of chronic infections in patients with fibromyalgia and chronic fatigue syndrome. These include viral infections of Epstein-Barr virus (EBV), cytomegalovirus (CMV), human herpes virus-6 (HHV-6), and bacterial infections such as Chlamydia, Mycoplasma, Borrelia (Lyme disease), among others. For some authors, these infections are the cause of a large percentage of FMS and CFS, or contribute to the severity of their symptoms.

These are chronic intracellular infections that can affect most body cells, the acute contamination may have taken place up to 30 years ago and have gone unnoticed. All these organisms have no cell membranes and occupy cells, drawing energy for their existence and development. Several authors have shown that there are dormant forms of these bacteria, like the yeast spore forms, explaining not only the chronicity of infection, but also the lesser virulence, resistance to short antibiotic therapies, and late relapses.
As for viruses and bacteria, the reactivation of the infectious process explains the manifestation of symptoms and worsening over time, as it affects the immune system of the body, the latter having also been previously deficient for any reason whatsoever. Thus, some microbial forms have the ability to persist for many years in the body and trigger, if the immune system becomes less efficient, diseases with systemic involvement, which become chronic because the infectious cause often goes unnoticed.

Presenting a true clinical picture of FMS/CFS, these patients have in addition different symptoms allowing to suspect a chronic infection, and a precise questioning of these suggestive symptoms should in any case be performed. Serological assessment will be proposed.
Specific anti-infective treatments can then be offered with an almost complete resolution of symptoms. Treatment protocols cannot be developed here. They are associated with an immune-stimulant treatment. (Click for more)

To finish this chapter, the frequent presence of Candida infections in patients with FMS/CFS is responsible for chronic digestive disorders, vaginal, sinus and others. Most patients respond favorably to treatment with antifungal herbs, acidophilus, fluconazole and a diet without carbohydrates.

4 - Nutritional deficiencies

Several factors in addition to deficient thyroid hormone regulation, immune dysfunction, and infections complicate many patients FMS/CFS. The four most common are nutritional deficiencies, an unwholesome diet, pour physical fitness, and drugs that low metabolism.
Indeed, patients FMS/CFS often have nutritional deficiencies. Their infectious or functional digestive disorders are partly responsible for these multiple nutritional losses. Without going into details, it is known that B vitamins, magnesium, iron, D-Ribose, coenzyme Q10, malic acid, glutathione and L-carnitine are essential for mitochondrial function and production energy. These nutritional supplements are certainly useful in these patients, not to mention the need of an important supply of vitamin D, known to improve the pain of FMS.

5 - Sleep disorders

They are part of the usual picture of FMS/CFS. For some authors, they would be involved in the pathogenesis of these conditions. For others, a lack of sleep can cause central hypothyroidism by hypothalamic-pituitary dysfunction. Restoring a 7 to 9 hours recovery sleep without waking up at night in these patients is essential. Rather than antidepressants, anxiolytics or hypnotics, not always effective and not lacking of side effects, even addiction, taking into account the underlying causes of FMS/CFS, which create difficulties falling asleep, nighttime awakenings and fatigue on awakening, is much more appropriate and, in my opinion, an essential step. Support of thyroid hypo-function, adrenal fatigue, and other hormonal imbalances (mainly progesterone during pre-menopause or menopause), or treatment of chronic infections, together with enhancement of immune function, can dramatically solve these sleep disorders, and provide a restful sleep.

Although less frequent, three other sleep disturbances must be considered and treated if they exist: sleep apnea syndrome, upper airway resistance syndrome (UARS) and restless legs syndrome (RLS).
Most of the time, RLS occurs in the absence of another disease, and the effectiveness of conventional treatment of RLS varies from person to person. But if RLS is part of the clinical picture of FMS/CFS, all therapies mentioned above, Guaifenesin as well, adapted on a case by case basis, may well reduce the symptoms, or even eliminate them. (Click for more)

6- The Guaifenesin

I mention here the phosphate retention theory.
The Guaifenesin is an effective treatment of FMS/CFS. Dr. Paul St. Amand, more than 40 years ago, has been hypothesized that FMS/CFS is caused by an abnormality in phosphate excretion by the kidneys due to a genetic defect. The energy is provided to all cells of the body by the mitochondria, small intracellular energy units, in the form of ATP (adenosine triphosphate). Fibromyalgia has kidney functioning perfectly except as regards their ability to excrete phosphate. It is an enzyme disorder which causes excretion of phosphate less than it should. Phosphates will be reabsorbed into the bloodstream where they cannot stay because it would drop the blood calcium, and the parathyroid hormone, which regulates the phosphate-calcium balance, does not allow that. Phosphates will be forced to return into the cells where they will be stored in excess, interfering with the formation of energy in the affected cells. The inability to produce appropriate energy in some tissues explains all the troubles of fibromyalgia. Cellular functions are compromised. If the energy is insufficient, nothing works well. This applies to all biochemical systems of the body to varying degrees depending on the predominant localization in excess of phosphates, from muscle contraction (muscle pain and weakness) to hormones production, from brain functions (cognitive disorders, sleep disturbances, fatigue) to digestive functions. The problem being intracellular, excess phosphate is not detected in the circulating blood. The cell dysfunction leading to a metabolic hyperactivity and energy depletion strongly hampers the quality of life.
The Guaifenesin restores in the affected cells the ATP levels required for their optimal function. The Guaifenesin reverses the course of the disease for thousands of patients worldwide, making completely disappear all the symptoms in most of them.
Successful treatment requires an experienced physician to the Guaifenesin protocol. I am the only doctor in the Middle East to be listed on the official list of the Fibromyalgia Treatment Centre in Santa Monica, California.

 

CONCLUSION

The FMS/CFS should not be enigmatic, but should be recognized as a true condition with various causes and effective treatments aimed not only at reducing symptoms but their disappearance and return to a normal life. We have seen how the treatment of FMS/CFS concern many fields of medicine. Due to its complexity and the multidisciplinary approach that is needed here, the FMS/CFS requires a precise evaluation.
Doctor M.D, rich with many years of experience, I bring in my clinic at Kfar Saba all my skill in the treatment of FMS/CFS, individualized treatments that cater to different causes possible. When multi-faceted treatment addresses the entire spectrum of these diseases, truly remarkable success can be obtained. Hormonal thyroid balance (even in the presence of normal blood tests), and adrenal balance if necessary, immune support, treatment for active chronic infections, Guaifenesin and nutritional supplements are essential components, often associated, for optimal therapeutic results.

Most patients with fibromyalgia experience a Calvary and a real fighter run. Rare are those who resign themselves. Now they know they can expect to live their life symptom-free.
 

norkurld@zahav.net.il
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