USAThis is from the April 2007 issue of "The Fibromyalgia Network Newsletter". Dr. Lapp practices in Charlotte, North Carolina:
" New or worsening symptoms should not automatically be attributed to the FMS/SE, even if they are common. The most frequently occurring medical problems I see that may help account for whay a patient is in a rut include: low cortisol production, hypothyroidism, Lyme disease, and tooth/gum infections.
When patients are not doing well, I always ask if they have had any recent illnesses or infecions. If they have had dental work, an infected cap can definitely make them sick. I also inquire about skin bites becaus this helps to diagnose an ongoing case of Lyme disease (the blood work alone my be inconclusive).
I will perform a mini-physical and order lab tests to help identify what might be causing a patient to feel worse. There are many tests for thyroid function, but in people with FMS/ME the thyroid stimulating hormone (TSH) seems to go up and down so this hormone is not a useful marker. T4 and T3 are the real hormones involved in regulating the body's metabolism, so I just measure them. I also test for auto-antibodies, especially if the thyroid gland is tender.
If T4 and T3 are both low, then I might put the patinet on supplemental T4 (e.g. Synthroid). However, many of our patientss do not efficiently convert T4 to T3, the active hormone. These patients need to be placed on T3 (such as Cytomel) or T3 containing formulas, such as Armou. In either case, I monitor their thryoid hormones at least annually. If anti-bodies to the thryoid are present, it can cause too much fluctuation in the hormone levels, making the tests unreliable. Then I have to go mostly by how the person feels to adjust the treatment dose.
Many of my FMS/ME patients have thryoid tests results in the normal range, but may have all of the symptoms of hypothyroidism, such as the dry skin, brittel hair, constipation, and croaky voice... in addition to profound fatigue. I put them on a small dose of thyroid and they feel so much better. It's not a cure, but it does help.
The least expensive wayt to measure cortisol is to check in in the saliva. I ask patients to take two to three samples througout the test day. The morning cortisol is usually normal, but by the afternoon some patients don't have any at all. For this group of people , I prescribe a tiny dose of hydrocortisone in the morning and another at noon, with the maximum daily dose not exceeding 15 mg. Often this will give them a small boost in daytime energy.
Patients who are experiencing increased symptoms need to incorporate at least two rest periods into their day. Then as soon as they feel they have the energy, they should slowly add small amounts of light activity into their day. The point is that they cannot add an evergy consuming acitvity without first making room for it withing the boundaries of their energy envelope. To help patients stay withing their energy enveloe, I teach them the three Ds- delya, defer, and delegate.
Patients need help with solving the relationship, work and adjustment problems they have with a chronic illness. They need to find counselors who are willing to work like coaches to identify what is bothering them and help them work on solutions. These theapists can be hard to find, but I have several throuhout the country who will work with my patients by telephone. Unfortunately, this is not usually covered by insurance, so I have collaborated with Bruce Campbell, Ph.D., who coordinates group courses by e-mail and Internet that costs less than $40. He even has a special program for family members (but not couples).
Bruce was an educational psychologist at Stanford University helping people with chronic illnesses before he developed CFS/ME. His web based classes require reading two chapters from a course book each week and answering questions for homework assignments. Examples might be: Give five situations when you have over-exerted yourself and could have triggered a flare in the past two months; or, list three things that your spouse does that frustrates you. Everyone in the course emails Bruce their answers, and then he hosts a chat group on the Web each week. Patients learn how other people are dealing with similar issues. Participants must be willing to commit three hours per week to the course, which is fully outlined online at www.cfidsselfhelp.org. "
I took Bruces course several years ago and am still in the alumni group where we discuss two topics a month. The one we are on now is a discussion of natural remedies that have or have not worked for us. I learned a lot from the course and book that comes with it and have made friends all over the world. I highly recommend it. They even offer scholarships for some who cannot afford the cost.
sue in ohio
