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Fibro Out-of-Control

Fibro Out-of-Control?

… two experts offer treatment advice

Is your fibromyalgia becoming more unmanageable and is staying awake during the day a constant struggle? Both of these situations can make you wonder, “What can I do to get out of this rut?” Two experienced clinicians describe common reasons for why fibro symptoms can worsen and offer their treatment advice to help you get back on your feet.

Charles Lapp, M.D.

Internist in Charlotte, NC

New or worsening symptoms should not automatically be attributed to the fibromyalgia, even if they are common. The most frequently occurring medical problems I see that may help account for why a patient is in a rut include: Lyme disease, hypothyroidism, low cortisol production, and tooth/gum infections.

When patients are not doing well, I always ask if they have had any recent illnesses or infections. If they have had dental work, an infected cap can definitely make them sick. I also inquire about skin bites because this helps to diagnose an ongoing case of Lyme disease (the blood work alone may 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 fibromyalgia the thyroid stimulating hormone (TSH) seems to go up and down, so TSH is not a useful marker. Instead, I measure the real hormones involved in regulating the body’s metabolism, which are T4 and T3 (T4 is the version that circulates throughout the body and is converted into the active version, T3, as it enters all cells before going to work). 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 patient on supplemental T4 (e.g., Synthroid). However, many of our patients 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 Armour. In either case, I monitor their thyroid hormones at least annually. If anti-bodies to the thyroid 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 fibromyalgia patients have thyroid tests results in the normal range, but may have all of the symptoms of hypothyroidism. Examples include dry skin, brittle 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 way to measure cortisol is to check it in the saliva. I ask  patients to take two to three samples throughout the test day. The morning cortisol is usually normal, but by the afternoon some patients don’t have any at all, causing them to feel totally drained. 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.

If no other source of the patient’s symptoms is found but they are feeling as though their health is continuing to decline, that tells me they are using up all of their available energy. I always talk to my patients about their energy limits. Many will attempt to add a full exercise program onto what they are already doing, but this doesn’t work as expected. This happens because they overextended beyond the boundaries of their energy envelope.

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 schedule. The point is, patients cannot add an energy-consuming activity without first making room for it within the boundaries of their energy limits. To help patients stay within their energy boundaries, I teach them the three Ds: delay, defer, and delegate.

Patients need help with solving relationships, work issues, and adjustments needed for living 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 therapists can be hard to find. As an alternative, I have collaborated with Bruce Campbell, Ph.D., who coordinates group courses by email and Internet. The costs is $35.

Bruce was an educational psychologist at Stanford University helping people with chronic illnesses before he developed chronic fatigue syndrome/fibromyalgia. 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 at www.cfidsselfhelp.org.

Carol Beals, M.D.

Rheumatolgist in Lansing, MI

I have fibromyalgia patients come in for a target visit when they sense their symptoms are getting worse. I look at their diet, sleep cycle, work and home stress, and their medication. If they are extremely tired, I will order blood tests to measure their vitamin B1 and B6 levels, as well as their “total” and “free” carnitine levels. Carnitine and the B vitamins are important for helping the cells make fuel.

More than 50% of the time, I find low B vitamin levels are the reason patients are so fatigued. I have my patients take a B-complex with 100 mg of B1 and 100 mg of B6. Oral supplements work rather quickly and there is no need to administer expensive IV preparations.

Carnitine is often low as well, so I supplement this energy nutrient with a Carnitor, a prescription medication. Patients take 330 mg three times a day, and it helps immensely with their energy levels. It’s available as a generic and most insurance companies will pay for it with the diagnosis of fatigue. Patients can get carnitine over-the-counter, but you never know how much carnitine they really contain, so prefer to use Carnitor (instead of acetyl-L-carnitine). I recheck the B-vitamins and carnitine levels two to three months later, and if they are normal I discontinue the supplements.

With regards to diet, I recommend eating a small amount of protein three or four times a day. Protein gives people more energy and helps them stay away from sugar. I urge my patients to steer clear of processed sugar, excessive caffeine (no more than two colas a day), and aspartame, an artificial sweetener. Aspartame directly stimulates the receptors in the spinal cord to produce pain, which is why I ask patients to avoid Equal and NutraSweet, along with the many diet colas containing this sweetener (Splenda and Sweet ’N Low are okay).

I provide my patients with a one-page sheet of stretching exercises they can do at home. I advise them to do no more than five minutes per session once or twice a day until they notice symptom improvements. It is better for them to do five minutes and be successful than to try 30 minutes and not be able to reach that goal.

During the target visit, I help patients identify new or increasing stressors that could be contributing to their decline. They may be more tired and achy, and have no energy. Often, there is a reason, such as their child was sick, a husband lost his job, they took a trip, or they did something to over-exert themselves. I ask them when their symptoms started to flare, and then I take out the calendar to find out what happened during the week prior to the onset of the severe symptoms. Almost always, I can find a triggering event. Once we can determine what set off their symptom flare-up, they know they are not crazy and something can be done to turn their symptoms around.

Next, I go over the various ways to control pain. Four different types of medications can be used, and I prescribe them in small quantities because fibromyalgia patients cannot tolerate drugs very well. I may use a low dose of an antidepressant, an anti-epileptic drug, a sleep agent, and sometimes a mild pain medication. When I use all of them, I can intercept the pain four different ways. The patient usually gets relief and allows them to get out of their painful flare-up.

There are several other methods I use to turn a patient around who is having too many down days and stuck in a rut. However, when I bring a patient in for a target visit, together we can always think of something that will help improve their situation.

Still Struggling with Pain?

Lapp and Beals address common reasons that may prevent you from improving despite valid efforts by you and your doctor. Yet, if the pain or tight, knotted muscles are still nagging you, check out the two sample articles: A Neurologist’s Approach and Muscle Relaxants. In addition, enter your email address into the right-hand box underneath the print button to receive another free article, Peeling the Layers of Your Pain.


Tests

  • Vitamins B1 and B6 blood levels
  • Carnitine (total and free blood levels)
  • Thyroid function: T3, T4 and, auto-antibodies (especially if the thyroid gland in the neck is tender or enlarged)
  • Adrenal function: measure saliva cortisol throughout the day
  • Lyme disease antibodies (especially with a history of a skin bite)
  • Look for infections: gums/teeth and other sources

Treatments

  • Carnitor: 330 mg three times per day (if tests show low carnitine)
  • B-complex: 100 mg each of B1 and B6 (if tests show low levels)
  • Thyroid hormone: T4 (such as Synthroid) or T3 (such as Cytomel or Armour)
  • Hydrocortisone: take a small dose in the morning and at noon (total dose not exceeding 15 mg/day)

Self-Help

  • Eat small amounts of protein throughout the day to provide energy and reduce sugar craving
  • Minimize caffeine and foods loaded with processed sugar
  • Avoid Aspartame (Equal, NutraSweet, and many diet drinks)
  • Add at least two rest periods to your day until you begin to feel better
  • Stretch for five minutes of each day until you are able to be more active (this will reduce muscle stiffness and the development of painful knots)
  • Identify the trigger that set off your flare-up by looking at events one week prior getting worse
  • Inquire about the web-based classes at www.cfidsselfhelp.org
  • Seek out compassionate, knowledgeable providers to treat your fibromyalgia-related symptoms

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