Fibromyalgia is a long-term condition that causes pain and tenderness all over the body. It’s not caused by damage or inflammation (like arthritis) but is believed to be caused by the nervous system becoming more sensitive to pressure and pain. Most patients also have fatigue that affects normal activities and is often worse after exercise. They also commonly report poor sleep, feeling unrested on wakening, poor memory and clouded thinking (also called or “fibro fog”).
Some people also have other nerve related problems along with fibromyalgia, such as restless leg syndrome, bowel or bladder problems, numbness or tingling, or sensitivity to noise, light or temperature.
Fibromyalgia used to be diagnosed by pain or tenderness in at least 11 of 18 specific points on the body. But now the requirement for diagnosis simply includes widespread pain on both sides of the body and above and below the waist for at least three months. Some have referred to the condition as “Central sensitivity syndrome”. It’s often reported to start after a stressful event, accident or infection, suggesting a possible involvement of stress hormones in its development.
Diagnosis
There is no specific test to tell you that you have fibromyalgia. It’s diagnosed by its symptoms along with the elimination of other potential causes for the pain. Fibromyalgia is often misdiagnosed and can take many years to be identified because the symptoms are similar to many other conditions.
Some of the illnesses doctors need to eliminate when they suspect fibromyalgia include low thyroid, rheumatoid arthritis, Systemic Lupus Erythematosis (SLE), polymyalgia rheumatica, other inflammatory/immune disorders, chronic fatigue syndrome, and multiple chemical sensitivity. If you have any chest pain/shortness of breath/palpitations your doctor would also screen for heart problems.
Fibromyalgia is not arthritis but somehow it falls under the umbrella of rheumatic diseases, perhaps due to the pain and fatigue sufferers experience being similar to arthritis. It is thought to involve effects on peripheral and central (in the brain) pain receptors, as well as spine inflammation and affective (mood) brain systems.
Doctors usually do blood tests to eliminate other causes of symptoms:
· TSH (thyroid test) – Low thyroid symptoms are similar to fibromyalgia, especially diffuse muscle pain and fatigue.
· Vitamin D (25-hydroxy vitamin D) – Low levels of vitamin D can result in muscle pain/tenderness. Very low levels can also cause fatigue.
· Iron – Deficiency can cause or worsen fatigue, sleep, depression symptoms, and restless leg syndrome. Transferrin and ferritin are molecules that transport iron, and blood levels of these may be tested to check for hemochromatosis (a genetic disease of excess iron in people of Mediterranean descent).
· Magnesium—Low levels can lead to muscle spasms.
· Erythrocyte sedimentation rate (ESR) – This is a test of how quickly red blood cells settle. An increased rate indicates arthritis-type inflammation. This is done to rule out inflammatory disorders that can mimic fibromyalgia symptoms and the value should be normal, indicating no inflammation.
Treatment
So far, no cure exists but management strategies can help greatly to relieve symptoms. Look for education about the disease to learn about lifestyle changes, physical activity, and medications that can help. Support groups, online and in person (once the pandemic is under control!), can be helpful. Be sure to ask your doctor for suggestions. Non-drug treatments can also give benefits and using several strategies together is ideal.
Stress management
Since there appears to be a stress component to fibromyalgia, learning how to reduce stress can be very helpful. Self management practices like relaxation training, activity pacing, visual imagery, and distraction strategies can add together to relieve fibromyalgia symptoms. Self-efficacy is the belief in one’s ability to control or succeed in specific situations, or to accomplish a task. Learning to increase self-efficacy give a sense of control and can improve the result of other treatments for any type of chronic pain.
Exercise
In spite of the fatigue and increase in pain that can be the result of too much exercise, it’s important to continue to do aerobic and resistance exercise. Low impact aerobics, walking, water aerobics, stationary bicycle, and Tai Chi are recommended exercises. Start gently and gradually increase as your tolerance improves.
Heat, massage, and other treatments like trigger point therapy for muscle spasms can be useful. Saunas, hot baths/showers, and self massage techniques help achieve self-efficacy for pain control.
Medications
It is strongly recommended to avoid narcotics, sleeping pills, and tranquillizers unless nothing else works, due to risk of addiction. These drugs can also increase fatigue and memory problems. Because people with fibromyalgia tend to be sensitive to medications and often experience adverse affects, it is recommended to start with low doses of all medications and gradually increase as necessary. Always combine medication with non-drug treatments, especially stress management, exercise, and psychological counseling if it’s needed.
Beware of medication duplication if seeing specialists for specific problems, for example, a dentist for temperomandibular joint pain (TMJ). I once did a medication review for a woman with chronic pain problems, and I discovered she was getting the same class of medicine from four different doctors!
Anticonvulsant drugs (such as pregabalin and gabapentin) and anti-depressants (like duloxetine [Cymbalta] and milnacipran/levomilnacipran [Savilla/Fetzima]), are used for their pain-relieving properties. However, they are given in much lower doses than when used for convulsions or depression. They also cause drowsiness but can help sleep if taken at bedtime or 1 to 2 hours before (giving time for the effect to kick in, plus wearing off earlier resulting in less morning drowsiness). If they bother your stomach, it’s recommended to take them with food. Non-prescription anti-inflammatories, like ibuprofen and naproxen, and acetaminophen (Tylenol) are usually of limited benefit.
Dextromethorphan (DM), found in nonprescription cough syrups or compounded by a pharmacist into capsules, has been successfully used for fibromyalgia and other chronic pain but does not have large studies to support its use. However, you could ask your doctor about it if what you’re using is not working well enough. It works by blocking NMDA pain receptors in the body.
Low dose naltrexone, also referred to as LDN, is a low dose of a prescription drug used to block opioid drugs (Naltrexone is a drug used to prevent drug abuse, similar to naloxone that rescues drug users in overdose, but slower and longer acting). It comes in tablets of 50mg but for fibromyalgia, the dose is 0.5mg daily, gradually increasing to as high as 4.5mg daily. Anecdotally patients report good results, but proper studies are currently lacking. However, since opioid receptors are believed to be involved in fibromyalgia, there is a logical mechanism behind use of this type of medication.
Medical cannabis has small studies to support effectiveness in fibromyalgia with few to no side effects. The synthetic cannabinoid, nabilone (Cesamet), was also found to improve pain and anxiety in fibromyalgia.
Beta-blockers, such pindolol or propranolol, taken in low doses at bedtime can improve pain and agitation.
Alternative therapies
· Alpha lipoic acid is a potent antioxidant that has been found to relieve pain in some with fibromyalgia. It has been studied for relief of diabetic nerve pain at doses of 600-1200mg daily, but for fibromyalgia some sources recommend starting with only 50-100mg daily, likely due to increased sensitivity to medications.
· Topical capsaicin cream, available without a prescription, can be a useful add-on. It has no side effects except possibly mild burning where it is applied (it’s made from hot peppers) but not everyone experiences this side effect.
· Magnesium and malic acid are 2 nutrients are involved in the production of energy within cells and a deficiency theoretically would cause some symptoms of fibromyalgia. However, research is still lacking to say these are supplements all fibro patients should take. A trial of 1 to 2 months should be long enough show a difference if you plan to try one or both of these.
· Progesterone replacement with natural progesterone (not a synthetic analog) has been reported to help reduce pain and improve sleep. Using it as a cream is more efficient as a large percent of swallowed progesterone is removed by the liver as soon as it’s swallowed. Users say that rubbing the cream on the painful area gives quick additional pain relief, suggesting that it works on local pain receptors as well as systemically. It is recommended to measure the cream for a consistent daily dose (usually 20 to 60mg daily but can vary from 10 to 200mg). Small studies suggest that fibromyalgia pain is increased in women with lower production of progesterone and testosterone. AS well, some women report their fibromyalgia began after menopause or other hormone changes, such as stopping hormone therapy, and this also supports the possibility of a hormonal connection. It could also explain why fewer men (who naturally have higher levels of testosterone) suffer from fibromyalgia. Progesterone cream is available in health food stores without prescription in the US but requires a prescription in Canada and must be compounded by a pharmacist. Note that many oils reduce absorption of progesterone through the skin. It must be prepared in an oil-free base to be effective.
· SAM-e (S-adenosylmethionine) has been studied for joint pain for many years. It has been found to relieve pain as effectively as anti-inflammatory drugs like ibuprofen, celecoxib (Celebrex) and naproxen (although these are reported elsewhere to have only a small effect in fibromyalgia). Newer studies suggest it may also improve symptoms of depression. But be sure to talk to your doctor before trying it.
· St. John’s wort is a herbal medicine that is well known to relieve symptoms of mild to moderate depression whether the result of living with chronic pain or other causes. However, as it works in a similar mechanism to standard antidepressants, it should not be combined with other antidepressants, like duloxetine (Cymbalta) or milnaciparin (Savilla/Fetzima) that are commonly prescribed for fibromyalgia as this would be a duplication leading to increased risk of side effects.
· Valerian is sometimes referred to as the “Valium” of the plant world and it has been proven to improve sleep in most people who use it. The good part is that it is not addicting like the benzodiazepine (Valium) family of drugs. It is available as capsules or tea…just a warning: hold your nose if using the tea as it’s described as smelling like “dirty socks”!
It is always recommended to talk to your doctor about alternative options and you certainly don’t want to try all of these options at once! Depending on their area of practice, your pharmacist may also be able to advise you about doses and possible interactions with your current medications. Most have access to good information sources on herbal and alternative medicines available to them. Keep in mind you may need to allow time for them to do the appropriate research.
Flare-ups
Identifying triggers for flare-ups can help you avoid them. Doctors recommend avoiding sudden changes in routine, for example, diet, exercise, and major life changes, if possible. Keep your activity level constant and know your limits.
Start medications at the lowest possible dose and increase gradually to reduce risk of flares.
Prepare ahead for situations that caused flares in the past. For example, arrange for help with housework or childcare if you suspect your fibromyalgia may flare up.
Behavioural therapy
Behavioural therapy, also called cognitive behavioural therapy or CBT, is a type of “talk” therapy that can help you look at your situation in a different way. Talking about anxiety, stress, depression, sleep disturbances, beliefs about pain, and coping strategies can improve the outcome of chronic pain treatments. Depression can be a contributor to pain or a result of chronic pain. If these “psychosocial” variables are not also recognized and addressed, results of medication treatment may be reduced in one third to one half of patients with fibromyalgia.
Diet
Modifying diet and practicing good sleep hygiene are crucial. A high sugar diet can worsen pain. Sensitivity to food additives is a problem for some with fibromyalgia, especially if they also have irritable bowel syndrome (IBS) which is a fairly common combination. Some people find alcohol can cause a flare up of symptoms. Caffeine beverages late in the day or a large meal eaten late can interfere with sleep.
Generally, a poor diet worsens symptoms of fibromyalgia. Doctors recommend a nutritionally balanced diet of whole foods, following a nutrition guideline, like Canada’s Food Guide. Adding individual nutrients as supplements may be useful if your diet is deficient. For example, you might experience muscle spasms due to low magnesium, or increased pain because of low of vitamin D.
But rather than take a lot of supplements “just in case”, it would be ideal to base supplement use on a blood test, if possible. You don’t want to take unnecessary medication, especially if you are already on a specific treatment for your fibromyalgia. Keep a food journal for 2 weeks before asking about recommended diet changes so they will know what you are currently eating.
Here are some specific diet recommendations I found:
· Slowly wean off caffeine (stopping abruptly may increase fatigue and pain, headaches, anxiety and worsen sleep).
· If you smoke or vape tobacco products, stop. Cigarettes and vape fluids contain many toxic chemicals that can worsen fibromyalgia symptoms.
· Eliminate food chemicals, especially MSG and aspartame. In some cases, just eliminating these 2 ingredients has resulted in improvement in symptoms. However, avoiding preservatives and other food additives can also be helpful.
· Eating large amounts of carbohydrate-rich foods (those high in sugar and white flour) may contribute to symptoms. Combining these foods with fiber or fatty food slows the absorption of the carbohydrate.
· Fruits are healthy foods that are generally high in carbohydrates, but some are higher than others. Citrus fruits, apples, berries, cantaloupe, and peaches may be preferred, and try to combine them with fiber- or fat-containing food.
· Avoid junk foods and packaged snacks as these usually contain large amounts of sugar/carbohydrates.
· Foods containing antioxidants, such as Vitamins C and E, minerals (selenium and zinc, and phytochemicals (natural chemicals found in whole plant foods) are important to include, as patients with fibromyalgia produce more damaging free radicals than do healthy people. Antioxidants neutralize these, preventing cell damage (presumably also damage to nerve cells).
· Low vitamin D is very common in people with chronic pain. Supplementing when blood levels are low has been shown to improve fibromyalgia symptoms. Note that vitamin D is produced in the skin in response to exposure to sunlight, and those in the northern hemisphere do not receive enough sunlight in the winter months to produce this vitamin. Supplements (up to 200iu per day) are highly recommended from October to April, and year round for those who spend little time outdoors or always wear sunscreen.
The photo above, by the way, is of the moon setting at 7am today, Friday February 26th... taken from inside, of course! It was -14c and very windy out there in east coast NB, Canada this morning!
References:
Fibromyalgia Differential Diagnoses—Medscape https://emedicine.medscape.com/article/329838-differential
Alternative Therapies for Fibromyalgia—WebMD https://www.webmd.com/fibromyalgia/alternative-therapies-fibromyalgia
How Alpha Lipoic Acid Helps Fibromyalgia Pain—Healing Fibro How Alpha Lipoic Acid Helps Fibromyalgia Pain - Healing Fibro
Daily Fluctuations of Progesterone and Testosterone Are Associated With Fibromyalgia Pain Severity—The Journal of Pain Daily Fluctuations of Progesterone and Testosterone Are Associated With Fibromyalgia Pain Severity - ScienceDirect
Progesterone information: Can I Speak to the Hormone Lady? –Jeannie Collins Beaudin https://jeanniebeaudin.wixsite.com/author/books
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