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Chronic Fatigue Syndrome/ME
By Jacob Teitelbaum, MD •
December 19, 2012
Jacob Teitelbaum, MD, is a much published fatigue and pain specialist who has been refining strategies for meeting common nutritional & preventive health support needs for more than 20 years. This introduction to management of female disorders that involve pelvic pain is reproduced with kind permission from Dr. Teitelbaum’s educational site Vitality101.com.*
Pelvic Pain in Women
In this article I'll discuss the various forms pelvic pain in women can take and how to treat each. The discussion may seem a bit lengthy and technical, but if you or someone you know suffers from female-related pelvic pain, the information can be very helpful.
Pelvic pain in women can be caused by menstrual cramps, vulvodynia, interstitial cystitis, or endometriosis. Let's look at each.
For menstrual pain, NSAIDs can be very helpful. You can begin with over-the-counter pain relievers such as Advil® [ibuprofen] or Aleve® [naproxen]. For severe menstrual cramps, the prescription medication Bextra® [valdecoxib] can be even more effective.
Interstitial Cystitis (IC)
IC is a bladder problem that causes severe discomfort in approximately 500,000 Americans. Ninety percent of people affected are women, and the condition often occurs in association with other illnesses such as fibromyalgia.
• Onset of symptoms is often between the ages of 40 and 60.
• On average, people see five doctors before they find one who is able to make the diagnosis.
IC is characterized by severe urinary urgency, frequency, burning, and pain. These symptoms in mild form are common in CFS, fibromyalgia, and chronic pain and are not what I am discussing here. IC is when these symptoms are your predominant problem and are often so severe that people want to have their bladder removed.
There are two main categories of IC. The more common, affecting 90% of IC patients, is non-ulcerative, involving pinpoint hemorrhages in the bladder wall. It is most often seen in young to middle-aged women. [Ulcerative IC is a subtype usually involving red, bleeding areas on the bladder wall. Though some believe there may be other subtypes of IC, called phenotypes, according to the IC Association.]
The cause of IC is not known, but there are many theories. In all likelihood, it is caused by a number of different problems. One possibility is that there are infectious triggers, which either irritate the bladder directly or cause an auto-immune reaction in which the body attacks itself. The autoimmune theory has recently been getting more support.
For whatever reason, the protective inner lining of the bladder (called the GAG or glycosaminoglycan) gets damaged, resulting in severe bladder irritation and pain, urinary urgency and frequency, and decreased bladder capacity.
Again, it is important to note that the above symptoms in mild form are very common and are not Interstitial Cystitis.
IC is often associated with vulvar pain and painful intercourse (see 'Vulvodynia' below).
There is no definitive test for IC, and the diagnosis is based on clinical symptoms and bladder cystoscopy (looking in the bladder with a tube). Other infections need to be ruled out, as does cancer.
Although there is currently no cure for IC, there is much that can be done to relieve the symptoms.
• Once bacterial infections have been ruled out, I add Elavil® 25 mg at bedtime plus Neurontin®. If these are ineffective, a trial of Sinequan® and the other anti-seizure medications are worthwhile. The medications Pyridium®, which numbs the bladder and turns the urine and sweat light orange, and Urispaz®, an anti-spasmodic, can be helpful as well.
• I would also treat the patient for presumptive Candida [yeast infection] with oral Diflucan® for 3 months, which may help as well. Although it has not been well-studied, many physicians suspect that yeast overgrowth, like some other infections, may contribute to IC.
• A critical part of the anti-yeast/anti-fungal protocol is avoiding sugar, which feeds yeast. Interestingly, Dr. Ward Dean had noted that one person's IC cleared up when she used Xylitol®, which looks and tastes like sugar, as a sugar substitute. It is not clear whether the Xylitol helped, or simply avoiding the sugar was the reason for the patient's relief. Either way, Xylitol is a good sugar substitute with multiple health benefits, including preventing cavities and osteoporosis, and is worth trying.
• It is important to avoid certain foods and also to recognize that vitamins, especially the B vitamins and any that are acidic, can dramatically irritate the bladder in some patients with IC. Because of this, supplements, especially one as powerful as the [Fatigued to Fantastic] Energy Revitalization System vitamin powder, should be tried in extraordinarily tiny doses first to make sure they are tolerated. Then slowly increase the dose if you are able (e.g., stick a finger in the powder and lick it).
• Take any B vitamins with a large amount of water. Otherwise, they can achieve high concentrations in the bladder. In most people this causes no problem, but can be irritating in those with IC or bladder spasm. B vitamins are bright yellow and you can tell when they are concentrated in the urine.
• Other treatments include avoiding foods that may aggravate symptoms.
• Urologists can also put different medications in the bladder, such as DMSO, Heparin®, and Elmiron®, all of which can be helpful. I recommend Elmiron (it may take 3 months to work). Take a 100 mg capsule 3 times a day with water at least 1 hour before, or 2 hours after, eating.
• Stanley Jacob, MD, the physician who helped to get FDA approval for the use of DMSO (instilled into the bladder) for IC has also explored the use of Methyl Sulfonyl Methane (MSM) to treat IC patients. [Naturally occurring chemical that is a dietary source of sulfur.] Although MSM takes longer to work (several months), it is better tolerated than the DMSO, which is irritating and results in a garlicky body smell. Dr. Jacob estimates that 80% of his IC patients improve with MSM. He has his patients make a formula of 15% MSM in deionized sterile water and use a catheter to put the solution in their bladders (2 to 5 times a week), holding it in their bladder as long as is comfortable. He gives the MSM intravenously and by mouth (starting with 1 g a day and increasing to 18 g daily). For more information, see Dr. Jacob's book MSM - the Definitive Guide.
• Surgery should be a very rare and final resort. Even after the bladder has been removed, half of the IC patients will continue to suffer from pain. The good news is that most patients I have seen with IC have received significant relief using some combination of the above treatments.
• In another study, lower morning cortisol levels were associated with increased symptoms of IC. Many fibromyalgia patients get marked improvement in their IC as part of the overall improvement of their fibromyalgia. One of the treatments I often give is cortisol in very low dose.
• Another natural remedy that has been shown to be helpful in IC is the amino acid L-arginine. 500 mg L-arginine 3 times a day for 3 months can help. In one study of 53 patients with IC, half were given the L-arginine and the other half a placebo. At the end of 3 months, 29% of the patients on arginine were feeling better with less pain and urgency as compared to 8% in the placebo group. L-arginine helps to make nitric oxide, which can relax the bladder muscle. The enzyme that makes nitric oxide has been shown to be low in interstitial cystitis patients. In another open study using 1,500 mg of L-arginine daily, a similar effect was seen. Another study using higher amounts did not show benefit, so more is not better.
• Some health practitioners have found that patients with interstitial cystitis often have chronic extremely alkaline urine. This can be aggravated by excessive coffee and cola intake. PH strip paper can be obtained cheaply at most pharmacies and one can test multiple urine samples at home to see if the pH is regularly over 7.0.
• Although I have not yet used it for interstitial cystitis, it would be worth trying the herbal 'saw palmetto', 160 mg twice a day for 6 weeks as this relaxes the bladder muscle in those with urinary retention and an enlarged prostate. Research shows that this safe herb promotes smooth muscle (i.e., the bladder muscle) cell relaxation by a number of different mechanisms. It takes 6 weeks to work.
Vulvodynia is defined as chronic vulvar itching, burning, and/or pain that is significantly uncomfortable. In this condition, vulvar/vaginal pain can either occur only during intercourse or be constantly present.
It used to be thought that it was fairly rare. Recently, the NIH funded a study to see how common vulvodynia is. According to Dr. Harlow, associate professor of gynecology at Harvard Medical School, "The preliminary data suggest that possibly millions of women may be affected at some point during their lifetime."
The International Society for the Study of Vulvovaginal Disease has proposed several names to describe the different types of vulvodynia. These are:
1. Generalized vulvar dysesthesia (VDY) - characterized by pain that can occur anywhere on the vulva.
2. Localized vulvar dysesthesia - characterized by pain that can be consistently localized by pushing on certain area(s) of the vulva.
3. Mixed dysesthesia - a combination of both of the above.
Symptoms can occur anywhere from the pubic bone to the anus. It may be present all of the time, sporadically, or only with intercourse. Many women feel like they have a chronic yeast infection. In others, it feels raw, swollen, or like they are sitting on a hard knot. Burning, electric shocks, and tingling are also often seen.
If the area around the urethra (where the urine comes out) is involved, the woman may feel like she has a chronic bladder infection. She may have recurrent urinary urgency, frequency, and burning despite having negative urine cultures. Painful intercourse (dyspareunia) is common, and pain may even occur from tight slacks or panties.
Some patients have found that for painful intercourse, topical 0.2% nitroglycerine cream can give temporary relief (made by a compounding pharmacist in a base without any irritating additives).
In my experience, vulvodynia seems to occur as three main types:
1. Neuropathic. This pain appears to be caused by nerve irritation and is sharp, burning and or shooting (like nerve pain). Begin treatment with tricyclic anti-depressants (nortriptyline, desipramine, imipramine, doxepin, or Elavil®) at 25 to 150 mg each night and/or Neurontin® (100 mg to 3,600 mg daily), and proceed from there. Be sure to use a high enough dose of the medications, and give them enough time to work, which may take 3 months.
In addition, topical lidocaine (Novocain®) gel can be helpful (e.g., EMLA cream). In severe cases, opiates may be necessary.
2. Inflammatory. This pain is associated with local inflammation / irritation. In this situation, I would avoid topical creams, especially if they contain parabens, propylene glycol, fragrance, or sorbic acid. Also, do not use topical anti-fungals or over-the-counter creams. Instead, I routinely give at least a 3 month trial of oral Diflucan® 200 mg a day to be sure any chronic vaginal yeast is eliminated. Occasionally, long-term Diflucan treatment is needed. In this case, check liver blood tests occasionally, because this medicine can cause liver inflammation. Some patients find that avoiding oxalates can help decrease symptoms.
In a small subset of patients, one can see a narrow ring of tissue that is inflamed and which reproduces the pain when touched (e.g., with a Q-tip). In these patients, surgically removing that small area of tissue is reasonable.
3. Muscle pain. If the pain is deep-seated and not triggered by touching the outer vagina, it may be coming from spasm of the deep pelvic muscles. In this situation, the pain may occur or be accentuated during the deep thrusting of intercourse. For this pain, the general principles for treating muscle pain apply.
In addition, EMG biofeedback of the pelvic floor muscles may help. Muscles that are often involved include the Obturator Internus and Pubococcygeus. The sacroiliac joint and disc/spine disease also refer pain to the pelvic and rectal areas. Any injury or condition affecting these can trigger pelvic pain.
In general, it is good for patients with vulvodynia to take certain precautions.
As noted above, these include avoiding any direct chemical contacts that can irritate the vulva such as sprays, creams, or mini-pads. In addition, it is a good idea to wear loose comfortable clothes and to avoid thong underwear and biking. Sitz baths can also be helpful. Menopausal women should use topical natural estrogen (e.g., estradiol) to prevent atrophy.
Many of my patients with fibromyalgia also have vulvodynia. Like IC, it seems that symptoms of vulvodynia often resolve as their fibromyalgia resolves. I put almost all women with pelvic pain on tricyclics such as Elavil® or nortriptyline combined with Neurontin®.
Endometriosis is a complex disorder affecting females during their reproductive years. In this disorder, the tissue that lines the inside of the uterus and sheds each month during the menstrual cycle (called the endometrium) escapes the uterus and attaches to inappropriate areas within the pelvis and abdomen. These growths then respond to changes in estrogen just like tissue within the uterus.
Because of this, women will often get pelvic and abdominal pains that are worse around one's period. These pains are usually worse than menstrual cramps. In addition to pain, women with endometriosis often experience a myriad of other symptoms similar to fibromyalgia (e.g., fatigue, insomnia, widespread achiness) as well as allergies, asthma, and autoimmune problems.
Although the cause of endometriosis is unknown, there are many theories. Most doctors forget to consider this diagnosis in evaluating abdominal and pelvic pain.
The diagnosis is made by laparoscopy. During this surgical procedure, the surgeon makes a small incision and asserts a tube through which he can see the internal organs to evaluate for endometrial implants. If these implants are seen, the diagnosis is made and treatment is given with hormonal therapies that attempt to stop ovulation. In addition, other pain medications are given as well. Pregnancy often causes a temporary remission of symptoms. Many alternative therapies are also available.
Although this condition is too complex to be dealt with thoroughly in this article, I recommend a book titled Endometriosis by Mary Lou Ballweg and the Endometriosis Association. This organization is located in Milwaukee Wisconsin and is dedicated to helping women with endometriosis.
- Jacob Teitelbaum, MD
See also: Dr. Teitelbaum's discussion of "Pelvic Pain in Men: Causes and Management"
* This information is reproduced, with kind permission of Dr. Jacob Teitelbaum, from his educational website, Vitality101.com. ©2012 From Fatigued To Fantastic LLC. All rights reserved. Used by permission of Avery Publishing, an imprint of Penguin Group (USA) Inc.
Disclaimer: These statements have not been evaluated by the FDA. This information is based on the research and observations of Dr. Teitelbaum unless otherwise specified. It is not a substitute for professional medical advice or treatment for specific medical conditions and is not intended to diagnose, prevent, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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| (1 existing comment)
|Posted by: Shella
Jan 3, 2013
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