Supplements as Fibromyalgia & CFS/ME Treatments

July 19, 2009

Many doctors, researchers and people with fibromyalgia (FM) and chronic fatigue syndrome (CFS or CFS/ME) say nutritional supplements are an important part of managing your symptoms. Many of us swear by them, and some people use supplements as an alternative to medications.

However, supplements are typically not well researched. Some of the supplements listed below have gone through double-blind, placebo controlled clinical trials and have had mixed results, while others haven't been scientifically tested, either for these conditions or at all. We have very little solid evidence that supplements do help alleviate symptoms of FM or CFS/ME.

CAUTION: Before you start a supplement regimen, be sure to talk to your doctor and pharmacist to make sure the supplements you chose are safe for you. There are also several things you should know about taking supplements for FM or CFS/ME.

• What You Should Know About Supplements
• Supplements for Energy
• Supplements for Pain/Tenderness
• Supplements for Mood Problems

What You Should Know About Supplements

• Supposed Cures:
  Many websites claim to sell natural "cures" or treatments for FM and CFS/ME that generally are very expensive supplement formulas. While their claims are tempting, remember that nothing is proven to cure these conditions, and few things (natural or otherwise) are even proven to alleviate symptoms. Be sure to research any substance you consider using and always involve your doctor in your decisions and in follow-up care.


• Beliefs About Supplements:
  While definitive evidence is lacking, many experts on FM and CFS/ME claim vitamins can help alleviate common nutritional deficiencies; boost energy, alertness and cognitive function; and decrease pain.


• Risks:
  Dietary supplements generally are better tolerated and have fewer risks than prescription medications, but anything you take to change the way your body functions is considered a drug. Just because a product is natural doesn't mean it's safe and won't interact with other supplements or medications. You should talk ALWAYS to your doctor and pharmacist about what you're taking, the dosages, and potential interactions. If you have sensitivities to foods, especially gluten, you need to be aware of what inert ingredients are in the supplements you take.


• Testing:
  Your doctor may want to test you for certain deficiencies that may be commonly associated with FM and CFS/ME or that could be contributing to your specific symptoms. This could help guide your supplement therapy and dosages. If your doctor is concerned about severe deficiencies or absorption problems, he/she may give you prescription-level doses or injections rather than over-the-counter (OTC) vitamins.


• Disagreements:
  Not all doctors agree on whether these conditions are associated with deficiencies or malabsorption problems. If you're concerned about these issues, you may want to bring them up. Even if he/she doesn't fully support a regimen you'd like to follow, work together to ensure that you're not damaging your health in your quest to feel better.


• What to Expect:
  If you do opt to use supplements as part of your treatment regimen, you shouldn't expect miraculous or immediate results. The goal should be to find multiple treatments with a cummulative effect. Also, as with medications and other therapies for FM and CFS/ME, you'll probably have to experiment with different combinations to come up with the supplement regimen that works for you.


• Getting Started:
  When starting supplements, it's important to only start one new one at a time, then wait a week or two before introducing another one. That will give you a chance to see what effect each supplement has on your body. The same goes for discontinuing them (unless you develop an allergy or other negative side effect.)

Carnitine, also called L-carnitine, helps your cells produce energy by breaking down fat. It also may help your brain utilize neurotransmitters, serotonin and glutamate, which can be out of balance in people with fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME). Carnitine is also an antioxidant.

Studies show that carnitine supplementation can help lower pain levels and boost the mental health of people with FM, and can lessen fatigue in those with CFS/ME. Researchers also found that people with either condition tolerated carnitine well. Studies have shown a therapeutic benefit from 500 mg of carnitine twice a day. Several foods contain carnitine, including:

• Meat (especially red meat)
• Dairy products
• Fish
• Poultry
• Tempeh (fermented soybeans)
• Wheat
• Asparagus
• Avacados
• Peanut butter

• Rapid heart rate
• Increase in blood pressure
• Fever

• Vomiting
• Nausea
• Headache
• Diarrhea
• Stuffy nose
• Restlessness
• Difficulty sleeping

CAUTION: Carnitine can impair thyroid hormone action, so you shouldn't take it if your thyroid hormone levels are low or borderline low. It's also not recommended for anyone on dialysis. Carnitine has a higher risk of negative interactions with other supplements, so be sure to talk to your doctor and/or pharmacist before taking it. It may be helpful to have a list of all of the medications and supplements you are taking ready for that conversation.

CoQ10, or coenzyme Q10, is a powerful antioxidant that is in most of the tissues in your body. The role of coenzymes is to break down food and convert it to energy in the form of adenosine triphosphate (ATP), which studies show is sometimes deficient in people with fibromyalgia and chronic fatigue syndrome.

A typical dosage of CoQ10 is 30 to 90 mg each day, taken in smaller doses 2 or 3 times a day. Some doctors recommended as much as 200 mg per day. So far, there's no specific dosage recommendation for fibromyalgia or chronic fatigue syndrome.

CoQ10 is fat-soluble, which means that you'll absorb it better when you take it with a meal containing oil or fat. CoQ10 works slowly, so you may not see any therapeutic benefit for up to 8 weeks. While early studies on CoQ10 for these conditions are promising, more research needs to be done. Before starting any supplement, of course, you should consult your doctor.

You can get more CoQ10 in your diet by eating more oily fish, organ meats and whole grains. It's widely available in supplement form.

CoQ10 Side Effects:
Some people do experience negative side effects of CoQ10, but these effects typically are mild and do not require treatment. Side effects include:

• Nausea and/or vomiting
• Heartburn
• Diarrhea
• Loss of appetite
• Skin itching
• Rash
• insomnia

• Headache
• Dizziness
• Itching
• Irritability
• Increased light sensitivity of the eyes
• Fatigue
• Flu-like symptoms

CAUTION: CoQ10 may lower blood sugar levels and blood pressure. If you have diabetes, hypoglycemia or low blood pressure, be sure to talk to your doctor before starting CoQ10 supplements.

Magnesium malate combines magnesium and malic acid. Both substances help produce energy in the form of adenosine triphosphate (ATP), which studies show can be deficient in fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME). Magnesium helps cells form and maintains muscles, bones and nerves.

Some research supports magnesium malate for boosting energy and alleviating the pain and tenderness of FM. Many doctors and patients say they've had success with it, but one controlled study showed it was no more effective than placebo. More studies need to be done on whether these supplements are helpful.

Some FM/CFS/ME experts recommend taking 140 mg of magnesium twice a day, and 600 mg of malic acid 3 times a day, before meals. One uncontrolled study showed a benefit with 200 mg of malic acid and 50 mg of magnesium 3 times a day. It's likely to take some experimentation to find your optimal dosage.

Magnesium is found in fish, artichokes, bananas, grains, yogurt, black beans, almonds, cashews and brazil nuts. Malic acid comes from apples or other tart fruits.

Side Effects of Magnesium Malate:
Both magnesium and malic acid can cause intestinal problems. So if you develop symptoms such as persistent diarrhea, bloating, or cramping, you might want to take a break from these supplements to see if symptoms resolve. You may also want to try them individually to see if one is easier to tolerate than the other.

CAUTION: If you have kidney or heart problems, be sure to check with your doctor before starting magnesium supplements.

NADH, or reduced nicontinamide adenine dinucleotide, is synthesized from niacin and is contained in all living cells. It's a coenzyme, meaning it helps enzymes in your body break down food and convert it to energy in the form of adenosine triphosphate (ATP), which studies show is sometimes deficient in people with fibromyalgia or CFS/ME. Research also shows that NADH can stimulate brain function.

A typical NADH dosage is between 5 mg to 50 mg per. But a safe, effective dosage for fibromyalgia and chronic fatigue syndrome has not yet been established. Some experts recommend low levels, such as 2.5 mg to 5 mg per day. While early clinical experience with NADH for these conditions is promising, more research needs to be done.

You can add NADH to your diet by eating more meat, fish and poultry. It's also available in supplements.

Side Effects of NADH:
Side effects of NADH are infrequent at low levels. Higher doses are associated with:

• Feeling overstimulated
• Insomnia
• Anxiety

SAM-e is a co-enzyme your body makes and uses to build a variety of important molecules. It's also important in the production of the neurotransmitters serotonin and dopamine, which can be low in people with fibromyalgia (FM) and CFS/ME.

Some studies suggest that SAM-e is effective at relieving FM symptoms such as pain, morning stiffness and tender-point count, as well as mood disorders and depression symptoms. It's not as well researched in connection with ME/CFS, but many experts say anecdotal evidence supports its use.

Many doctors recommend starting with 400 mg a day of SAM-e and increasing the dosage if you tolerate it well, possibly to as high as 800 mg a day.

SAM-e should be taken on an empty stomach. It can be stimulating, so it's best to take it early in the day so it doesn't disrupt your sleep.

You can't get SAM-e through your diet - it's produced naturally by your body. Supplements are one way to increase the available amount.

• Digestive problems, especially nausea
• Skin rash
• Lowered blood sugar
• Dry mouth
• Bloody stool

• Thirst
• Increased urination
• Headache
• Hyperactivity
• Anxiety
• insomnia

CAUTION: People with Parkinson's disease shouldn't take SAM-e. Because of an association with mania and hypomania, those with bipolar disorder, anxiety disorders or other psychiatric conditions should be under the close supervision of a healthcare provider when taking SAM-e. We don't have safety data on SAM-e use during pregnancy or breastfeeding.

B vitamins are essential for energy production, and a few (but limited) studies suggest low B12 levels may be involved in fibromyalgia and chronic fatigue syndrome.

Some experts on fibromyalgia and chronic fatigue syndrome recommend at least 50 mg daily of most B vitamins, and 500 micrograms of B12. Some treatment protocols use B12 injections.

Many doctors disagree with this and consider B12 injections archaic and unscientific. Some doctors and researchers, however, say anecdotal evidence supports higher B12 levels for people with these conditions.

You get B12 in your diet through almost any animal-derived food (meat, eggs, dairy). Some vegetarian products are fortified with B12, since a plant-based diet generally will not contain enough.

B12 Side Effects:
The most common side effect of vitamin B12 is mild, temporary diarrhea. Severe side effects, for which you should seek medical attention right away, include:

• Severe allergic reactions
• Calf pain, swelling or tenderness
• Chest pain
• Feel of swelling throughout body

• Fever, chills or persistent sore throat
• Irregular heartbeat
• Muscle weakness or cramping
• Shortness of breath
• Unusual bruising or bleeding

Magnesium malate combines magnesium and malic acid. Both substances help produce energy in the form of adenosine triphosphate (ATP), which studies show can be deficient in fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME). Magnesium helps cells form and maintains muscles, bones and nerves.

Some research supports magnesium malate for boosting energy and alleviating the pain and tenderness of FM. Many doctors and patients say they've had success with it, but one controlled study showed it was no more effective than placebo. More studies need to be done on whether these supplements are helpful.

Some FM/CFS/ME experts recommend taking 140 mg of magnesium twice a day, and 600 mg of malic acid 3 times a day, before meals. One uncontrolled study showed a benefit with 200 mg of malic acid and 50 mg of magnesium 3 times a day. It's likely to take some experimentation to find your optimal dosage.

Magnesium is found in fish, artichokes, bananas, grains, yogurt, black beans, almonds, cashews and brazil nuts. Malic acid comes from apples or other tart fruits.

Side Effects of Magnesium Malate:
Both magnesium and malic acid can cause intestinal problems. So if you develop symptoms such as persistent diarrhea, bloating, or cramping, you might want to take a break from these supplements to see if symptoms resolve. You may also want to try them individually to see if one is easier to tolerate than the other.

CAUTION: If you have kidney or heart problems, be sure to check with your doctor before starting magnesium supplements.

VITAMIN D

Low vitamin D levels can cause muscle pain and weakness. Studies show that as many as 25% of people with fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) have low vitamin D levels, and that supplementation may help lower pain levels in some cases. One study shows that vitamin D-deficient people need twice as much narcotic pain reliever as non-deficient people.

Your body needs vitamin D to help with calcium absorption and for bone growth and strength. Along with calcium, vitamin D protects you from osteoporosis.

Some FM and CFS/ME experts recommend between 1,000 to 2,000 IU of vitamin D daily, which far exceeds the FDA's recommended daily allowance. In fact, the National Institutes of Health considers 2,000 IU the highest tolerable daily amount. However, recent discoveries about the importance of vitamin D for overall health are changing opinions about how much is enough. Make sure to talk to your doctor about how much vitamin D you should be taking. If you take a high dosage, your doctor may want to test your levels periodically.

Vitamin D is naturally available in eggs, Swiss cheese, and several fish, including salmon, mackerel, tuna and sardines. You also get it from sunshine. Food makers add it to cereal and milk to help prevent rickets in children. Too much vitamin D is potentially toxic. Your doctor can help guide your vitamin D regimen.

• Nausea
• Vomiting
• Poor appetite
• Constipation
• Weakness
• Weight loss

DHEA stands for dehydroepiandrosterone. This steroid occurs naturally in your body, where it's produced primarily by the adrenal glands. Your body uses it to make some hormones, including estrogen and testosterone. Your DHEA levels drop as you age, and this is considered a key marker in determining biological age. In women, DHEA levels may increase during times of stress, and DHEA may also be involved in immunity.

Studies show that DHEA supplementation can help people with adrenal insufficiency and mild (non-major) depression; depression is common in people with fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME). DHEA also is used to treat autoimmune conditions such as lupus and multiple sclerosis, which have a lot of symptoms in common with FM and CFS/ME. It may also help improve sexual function. Some doctors and patients say DHEA helps with stress and anxiety related to FM and CFS/ME. However, its effectiveness at relieving symptoms of these conditions has not been established.

The recommended dosage of DHEA is typically between 25 and 50 mg per day. You may see DHEA sold in much higher dosages, but those are generally for athletes and body builders and come with a much higher risk of side effects.

Side Effects of DHEA:

We don't have studies yet on the long-term effects of DHEA. But because it may cause high levels of some hormones, experts say it could theoretically raise your risk of prostate, breast or ovarian cancers, as well as other cancers that are hormone sensitive. DHEA is a steroid, and steroid use can be dangerous. Any DHEA use should be discussed with and monitored by your doctor.