by R. Paul St. Amand, M.D.
Over the course of some forty years, treating the entity Fibromyalgia, we had documented that many of our women patients had repeated bouts of vaginal and urethral symptoms. Since these symptoms like the rest responded to our treatment of we did not think in terms of a separate syndrome.
Fibromyalgic individuals complain a lot. Ordinarily, the most overwhelming symptoms are the aches and pains striking anywhere in the musculoskeletal system. They are devastatingly tired, nervous, tense, irritable, depressed, awaken frequently and cannot get back to sleep; all this is accompanied by poor memory and concentration forcing re-reading of material simply to grasp its gist. Very commonly, headaches arise from the back of the occiput and neck, sweep over to the front, frequently involve one half, though frequently, all of the head. Often present are: dizziness, experienced as a fleeting, wavery sensation but sometimes true spinning, known as vertigo; eye complaints of irritation such as dryness and perhaps morning mattering and excessive tearing; blurring for a few minutes often requires repeated re-focusing. Occasionally, rapid twitching of the eyelids (blepharospasm) is felt. Flushing and sweats are common as are nasal congestion, bad or metallic tastes, ringing or fluttering sounds in the ears, numbness anywhere but often only of the hands and feet. Patients are often diagnosed with the "irritable bowel syndrome" or "spastic colon" which consist of gas, bloating, nausea in waves, cramps and alternating constipation or diarrhea.
In addition to the above, women will often note burning on urination, persistent or fleeting, and vaginal irritation or discharge. If pelvic pain level allows intercourse, vulval or introital chafing, rawness or burning follows. Excessive vaginal mucus often follows and may permit a medium for frequent yeast infections. Others may suffer repeated bladder infections. At other times, similar symptoms arise but urinalyses are clear and no bacteria can be cultured. These people are often told they have "interstitial cystitis." This cluster of symptoms is now known as "Vulvar Pain Syndrome (VPS)" or Vulvodynia. A subset of these women have a more specialized complaint called Vestibulitis, or vulvar vestibulitis- which refers to pain and irritation in the area of the entrance to the vagina. In my experience, all the women I have examined with the Vulvar Pain Syndrome have had Fibromyalgia.
After forty years in working with Fibromyalgia some things seem apparent. I think it is inherited, mainly effects women (80% of patients) and has scattered effects over most of the body. I also think this is an illness caused by the excess accumulation of something which causes affected cells in any given system to malfunction. Since this situation occurs almost anywhere and involves many locales at once, multiple symptoms evolve. I suspect that the abnormality is chemical and merely due to the excess retention of some normal body constituent(s) which evoke no inflammatory response and, initially, no permanent damage. Therefore, all laboratory tests and X-rays are normal.
I assume Fibromyalgia is caused by one or more defective genes since I have treated as many as three generations of some families with this diagnosis. It is unusual not to obtain a history of similar complaints or of osteoarthritis in older family members. So common is this information as to make me suspect that osteoarthritis is often the natural sequel of long-standing Fibromyalgia. Some mutations seem more rapidly symptomatic than others and cause symptoms in early life. Other, less- impacting, genetic alterations only slowly effect patients at very variable ages and levels of severity. Thus we have treated five four-year old children, several others in the pre- teens but most patients are more mature at onset. The youngest usually have a bilateral family history of Fibromyalgia, "rheumatism" or osteoarthritis. There is often a history of growing pains as a child, "migraine" headaches in the teens and progressive aching in highly variable cycles after that. At first, long gaps between attacks are usual causing physician and patient to miss the connection. Eventually, symptoms merely cycle from bad to worse and allow no more good days. Many people have been diagnosed as having "chronic fatigue syndrome," EBV infection, systemic candidiasis etc. All we have seen, so-grouped, have been fibromyalgic.
My approach to this illness is controversial. It is not the conventional one outlined and followed by rheumatologists. I do not follow the diagnostic guidelines of eleven out of eighteen predetermined, tender points since it is usual to find many more, several not in the anticipated locations. I definitely do not agree with the accepted treatment approach since that is mostly an attempt to control symptoms. Though I cannot change our genetic makeup, I believe we are attacking at the next, best level: the proximal cause of the illness, and by that, seeking ultimate, maximally-obtainable relief.
Once my patients helped me stumble into an effective treatment for Fibromyalgia it seemed proper to form a theory to fit the results. However incorrect this might prove later, I present the following. It is my suspicion that the defective genes cause retention of something that should be excreted by the kidneys in sufficient amounts to maintain appropriate, inner cell levels. Phosphate retention is a likely suspect though oxalates or other normal metabolites could be culprits or accomplices. We have tested twenty-four hour, urine collections before and after instigating treatment in a few patients. An increase mainly in the excretion of phosphate but also of oxalates and calcium occurred. My theory, simplistically stated, is that minimal phosphate retention year after year is leading to gradual excesses. An elevated phosphate in the blood is not tolerated since it would depress calcium levels. The parathyroid glands will not allow this and phosphate must be spread evenly not only in body fluids but also within cells. This accumulation of negatively charged phosphates (possibly oxalates and/or other anions) demands retention of positively charged, cations, most probably calcium but also sodium and possibly others. The excess intracellular phosphate depresses formation of energy (ATP) in the cells' "power stations," the mitochondria. Calcium is drawn into the cell's fluid compartment to chemically buffer phosphate. This would initially cause the cell to over-achieve its designated function. However, the cells' deprivation of sufficient energy (ATP) would not allow extrusion of calcium from cellular fluid into appropriate storage bins. The afflicted cell then could no longer adequately perform its usual chores and thus, varying degrees of cellular and system apathy develops. Afflicted individual would obviously experience complaints referable to the obtunded areas.
We have learned that any medication used for treating gout by causing urinary excretion of uric acid, also works for Fibromyalgia though no connection exists between the two conditions. A gradual evolution in our use of various agents finally led us to Guaifenesin, which has minimal effects on uric acid and would not be effective for gout. Guaifenesin has been used only to liquify mucus. It is present in small amounts in many cold preparations such as Robitussin or other cold and cough preparations. For our patients, it has proven the most effective treatment to date. In a cyclic manner, the illness undergoes reversal several times faster than it developed. Unfortunately this reproduces all the symptoms of the condition that are often worse than before since this acceleration involves many areas simultaneously. Gradually and progressively more good days appear, cluster and finally restore the patient to normal if no permanent damage has occurred.
Those of you with vulvodynia and the entire complex of genitourinary symptoms are being presented with this topic for your information. We have seen so many patients with your complaints as part of Fibromyalgia that it would be simple for me to assume it is but one disease. However, I should also emphasize that I am an endocrinologist, not a gynechologist---so my experience has been limited to a degree.
We have treated a few thousand patients with Fibromyalgia, many before a name was available for the disease. These individuals taught us the symptoms and the approach to treatment by their own, very personal observations. I too have this condition as do my three daughters and two sisters--it is my father's legacy! I hasten to repeat that this treatment is not for wimps since in most patients symptom reversal is intense. However, health so attained becomes ever more valued since one will always remember the years of horror.
An excellent foundation supports women with these problems. They have seminars in various parts of the country and are well-acquainted with FM. I suggest anyone with these problems contact and consider joining this excellent organization. The address:
The Vulvar Pain Foundation
Post Office Drawer 177
Graham, North Carolina 27253
Phone: (910) 226-0704
Fax : (910) 226-8518
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What Your Doctor May Not Tell You About Fibromyalgia : The Revolutionary Treatment That Can Reverse The Disease