October 7, 2013
The pain from fibromyalgia syndrome can change your life by making normal daily activities much more difficult. The exact cause of fibromyalgia is unknown, but stress may contribute to its onset. The condition is characterized by aching and pain in muscles, tendons and joints all over the body, especially along the spine.
There are measurable changes in body chemistry and function in some people with fibromyalgia. These changes may be responsible for certain symptoms. However, fibromyalgia is not associated with muscle, nerve or joint injury; inadequate muscle repair; or any serious bodily damage or disease. Also, people who have fibromyalgia are not at greater risk for any other musculoskeletal disease.
When fibromyalgia begins, stresses in a person’s life are prominent. Stress often results in disturbed sleep patterns and a lack of restful sleep. When you don’t get enough sleep, your body does not produce the chemicals necessary to control or regulate pain. A lack of these pain-regulating chemicals results in tenderness in the upper back and forearms, leading to the symptoms of fibromyalgia.
Other physical and emotional factors may also contribute to the onset of fibromyalgia. For example, a physical illness (such as an infection) could cause changes in your body chemistry that lead to pain and sleeplessness. When you are sick, you may worry about your health and become anxious, depressed or inactive. These emotional factors could make your symptoms worse and aggravate fibromyalgia.
While the causes and triggers of fibromyalgia may not be well understood, fortunately, correct diagnosis and effective treatment to control the pain is available.
About the Speaker
Carmen Gota, MD, is a staff physician at Cleveland Clinic’s Department of Rheumatologic and Immunologic Disease in the Orthopaedic & Rheumatologic Institute.
She is board certified in internal medicine and rheumatology. Her clinical interests are fibromyalgia, vasculitis, systemic lupus erythematosus, rheumatoid arthritis, gout, chondrocalcinosis, psoriatic arthritis, ankylosing spondylitis, reactive arthritis, dermatomyositis, polymyositis, Sjögren syndrome and retroperitoneal fibrosis. She is a member of the Center for Vasculitis Care and Research.
Dr. Gota completed her fellowship in rheumatology at Cleveland Clinic after completing her residency in internal medicine at Lenox Hill Hospital, in New York. She graduated medical school from the University of Medicine and Pharmacy, in Targu-Mures, Romania.
Dr. Gota currently sees patients at Cleveland Clinic main campus and Ashtabula County Medical Center.
Let’s Chat About Understanding Fibromyalgia
Moderator: Welcome to our chat ‘Understanding Fibromyalgia’ with Cleveland Clinic rheumatologist and fibromyalgia specialist, Carmen Gota, MD. She will answer questions about possible causes for fibromyalgia pain, diagnosis and treatment options. Dr Gota is passionate about this topic and we are honored to have her here today.
Fibromyalgia Symptoms: Differential Diagnosis and Associated Conditions
wt628: Why do some physicians still consider fibromyalgia a non-entity, that it is just an excuse for drug-seeking patients? I was diagnosed 20 years ago when fibromyalgia first seemed to be defined. It got to the point where I never mentioned the diagnosis to other physicians due to this attitude or belief. Now my physicians don't take that diagnosis into much consideration focusing on other issues that may be of cause. There are times it is hard to tell whether my pain is from sarcoidosis or fibromyalgia.
Carmen_Gota,_MD: Many patients come to us and say, ‘My doctor does not believe in fibromyalgia’ or ‘I was told it is all in my head’ or ‘Fibromyalgia is a wastebasket diagnosis when doctors do not know what is wrong with you.’ The truth is fibromyalgia is a real condition—the combination of pain all over that gets worse after exercise and at night, stiffness, fatigue, poor sleep, trouble with memory and concentration, irritable bowel symptoms, dizziness, numbness and tingling, lightheartedness, headaches, and memory and concentration disturbances. These symptoms as well as difficulties with sleep are highly suggestive and consistent with the diagnosis of fibromyalgia.
Many doctors and patients have difficulty with the diagnosis because of lack of understanding of the condition, and presumed stigmata associated with the diagnosis. Fibromyalgia is real condition that has to be identified and treated.
charyvon: Are there ailments other than fibromyalgia that cause joint and muscle pain in many parts of the body?
Carmen_Gota,_MD: Yes, but not with the clinical presentation of fibromyalgia. Widespread pain can occur in bone disorders, metastatic disease, or multiple myeloma, but those conditions are easily recognized. Also, some muscle disorders can cause muscle pain, but those also can be identified. Fibromyalgia symptoms are very consistent and the combination of pain, fatigue, poor sleep, memory and concentration difficulties, headaches, irritable bowel symptoms, urinary frequency, intermittent numbness and tingling in the extremities, and lightheadedness, combined with a normal physical examination is highly compelling for fibromyalgia.
maryjop56: I was diagnosed with fibromyalgia a few years after an autoimmune disorder diagnosis. Is there a connection?
Carmen_Gota,_MD: Many patients start having fibromyalgia symptoms after a medical condition or an injury. Your autoimmune disease represented a stress for your body.
Shafer: I recently showed a positive result for mixed connective tissue disorder (ribonucleoprotein antibody) Could I have fibromyalgia, too? If so, how can I differentiate fibromyalgia pain from inflammatory pain?
Carmen_Gota,_MD: Mixed connective tissue disease can cause joint swelling which can be easily differentiated from fibromyalgia. The physical examination in fibromyalgia is normal. If the joint pain is due to mixed connective tissue disease, the joints in the wrists and knuckles would be swollen—something that your rheumatologist can see. Also, if there is swelling in the joints, often times we also see inflammation in the blood work such as an elevated CRP (c-reactive protein).
DM/ILD: I have dermatomyositis (DM) and was diagnosed with fibromyalgia after having chronic pain. How can I tell the difference between DM pain and pain associated with fibromyalgia?
Carmen_Gota,_MD: Having fibromyalgia does not exclude having other medical problems. Generally, fibromyalgia pain is ‘all over’, occurs at night and in the morning, gets worse with sitting and after exercise, and gets better with movement. It is highly associated with stiffness lasting more than an hour. Pain is not a common feature in dermatomyositis.
waicunas: How is IBS (irritable bowel syndrome) related to fibromyalgia symptoms? What are the best pain killers for this condition? Why do the symptoms come in cycles? Why does it affect women more than men? Are food allergies associated with fibromyalgia symptoms? Also, does alcohol affect fibromyalgia?
Carmen_Gota,_MD: The same mechanisms that lead to fibromyalgia also lead to IBS. There are no best pain killers for fibromyalgia, unfortunately. As you said, fibromyalgia can come in cycles—often associated with periods of increased stress, worse sleep, or increased depression. Sometimes hormonal changes can also interfere. Fibromyalgia is probably as common in men as in women, but in men it is underdiagnosed. One reason is men are less likely to have tender points. Fibromyalgia is not a food allergy problem. Alcohol is not helpful for fibromyalgia.
rebma02: What suggestions would you have in regards to relieving severe neck pain caused by fibromyalgia? I have had neck pain for the last 10 years, which had been reduced by seeing a chiropractor. For the last ten months, I feel like I'm not getting any relief from the adjustments, as I can be in pain again by the time I walk out the door.
Carmen_Gota,_MD: I would suggest to see a rheumatologist to exclude a mechanical cause such as degenerative disk disease. That being said, osteoarthritis is common. If your neck hurts all the time, hurts at night and feels stiff, that is probably your fibromyalgia. However, you should have your doctor evaluate this condition. Physical therapy could help tremendously.
ralphieA: I am a 70-year-old male in excellent health. In 2003 I was diagnosed with severe stenosis of the spine, but supplementation with glucosamine /chondroitin and flaxseed oil have done miracles for the condition. In July I was literally immobilized in one evening, with pain throughout all of my joints, neck, back, shoulders, arms, fingers, ankles and palms, along with a sore throat, hoarseness and a little difficulty swallowing. I thought it was arthritis, but with a sore throat and hoarseness? I then believed it was an adverse reaction to doxycycline hyclate 50 mg for rosacea. I stopped taking my medications and in three days, my pain and sore throat were gone. However, I was wondering if these could these have been signs of fibromyalgia? I have been at 100 percent since July after I stopped taking these medications.
Carmen_Gota,_MD: Many patients with fibromyalgia experience recurrent sore throats, sensations of having a knot in the throat and a sensation of swollen glands in the neck region. In your case, based on the symptoms you described, I think there are other medical issues unrelated to fibromyalgia although I am happy that you are feeling better.
lrichmond: From what I have read, fibromyalgia does not get worse. I have been getting worse over the past eight years with unbearable pain, total exhaustion and feeling like I am ‘poisoned’ somehow. Is this normal?
Carmen_Gota,_MD: Fibromyalgia left untreated often times gets worse.
omaann: Is it true that you can reverse fibromyalgia if you find the source?
Mom123: My mother has been diagnosed with polymyalgia. Is that different? What type of specialist should she see for this?
Moderator: Polymyalgia rheumatica (PMR) is a rheumatologic disease that is different from fibromyalgia. Your mother should be referred to a rheumatologist to follow her care.
Stress and Fibromyalgia
Wendylulu: I was diagnosed with fibromyalgia six years ago. I could give several causes that I believed contributed to this diagnosis—including a case of severe flu some time ago, a car accident and a very stressful and upsetting past. I live alone and I am afraid of relationships, but I have a young dog which is my joy. I am 57 years old, and none of my older brothers and sisters visit. How can I gain some quality in my life? I have tried swimming, hobbies and such, but the depression makes me feel like ‘What's the point?’I am on Zoloft® (sertraline hydrochloride) 50 mg/day and have also been prescribed vitamin D. I also have chronic sciatica and chronic fatigue syndrome.
Carmen_Gota,_MD: Your experience with fibromyalgia reflects that of many patients that we see. Stressful events like sickness or accidents as well as emotional stress teach our body to be always in a defense mode—always ready to respond to stress. Unfortunately, even when the major stress is gone, the body does not relax. The fight-or-flight part of the nervous system, called the sympathetic nervous system, never takes a break. That is why the body is always tense, sleep is poor, and is hard to concentrate and relax. Associated depression just makes things worse.
What I would suggest is to talk to your doctor and see if your depression can be better managed—either with increasing the sertraline dose or changing to another drug or through a combination of drugs. Exercise also helps treat the depression. Do you have time to take the puppy out for a walk? If so, do it daily or even twice a day. Find things that relax you and inspire you. Make sure you get a good night sleep. Meditation, mindfulness and relaxation techniques help. Spend time with your brothers and sisters. Do not stay in the house. Go out, take advantage of what your city or community has to offer. Find a fibromyalgia group. Talking about fibromyalgia can help you manage it, and finding people with similar experiences can be very helpful.
Fibromyalgia and Immune Response
Janiegirl: I have had fibromyalgia for almost 20 years. The pain has lessened, but I have terrible problems with a weak immune system and this is ruining my life. I am ill with various types of colds and flu almost constantly, even though my immune system studies have been normal. Is there any treatment for this problem? I hope that you can help me and give me some suggestions. I was originally diagnosed at Mayo Clinic.
Carmen_Gota,_MD: I would suggest you consult an allergist immunologist to see if there is an immune-related cause for the frequent infections. If there is not, I would suggest increasing your exercise level, which can help boost your immune response.
Vitamin D Deficiency and Fibromyalgia
charyvon: What's the significance of a significant vitamin D deficiency as it relates to fibromyalgia?
Carmen_Gota,_MD: As we all know there is a lot of ‘buzz’ regarding vitamin D deficiency and in my practice here in Cleveland, I am surprised if I have a patient with normal vitamin D. Most of those tested have lower levels than normal. Vitamin D deficiency has been linked to musculoskeletal pain, but fibromyalgia is not caused by vitamin D deficiency. The role of vitamin D supplementation in fibromyalgia is not clear, but at least in theory it can make the pain worse. In patients with vitamin D deficiency, supplementation of vitamin D can help bone health and muscle strength, but it is unlikely that it can cure fibromyalgia.
Nutmegger: I have heard that the role of vitamin D supplementation in fibromyalgia is not clear, but at least in theory it can make the pain worse. Does taking a vitamin D supplement can cause more pain for fibromyalgia patients? And if so, are you referring to the normal intake of vitamin D in a multivitamin or taking 50,000 IU? Also, can you give an example of ‘early life stress’ as a factor. How common is it to have an autoimmune disease—like sarcoidosis—coexisting with fibromyalgia? I was diagnosed with fibromyalgia three years after receiving the diagnosis of sarcoidosis. I also have chronic fatigue, depression, osteopenia, osteoporosis, GERD (gastroesophageal reflux disease), severe osteoarthritis, migraines, general anxiety disorder, low vitamin D, insomnia, hypothyroidism, high cholesterol and triglyceride levels, and acute kidney failure that keeps me from taking NSAIDs (nonsteroidal anti-inflammatory drugs). I am on Effexor XR® (venlafaxine hydrochloride), Wellbutrin® (bupropion hydrochloride), Lyrica® (pregabalin), Flexeril® (cyclobenzaprine hydrochloride), Nuvigil® (armodafinil), Nexium® (esomeprazole magnesium), Ultram® (tramadol hydrochloride), Colcrys® (colchicine), Benicar® (olmesartan medoxomil), HCTZ (hydrochlorothiazide)(for kidney flush), Synthroid® (levothyroxine sodium), Sonata® (zaleplon) and aspirin. I recently lost 45 lbs that I had gained on prednisone.
Carmen_Gota,_MD: We often see GERD, migraines, anxiety, insomnia and chronic fatigue associated with fibromyalgia. Having other medical conditions can also make fibromyalgia worse. Vitamin D deficiency has been associated with musculoskeletal pain.
Example of early life stress can include being born premature and/or childhood trauma (including abuse and illness). Chronic medical problems are also stressors. Sarcoidosis is often associated with fibromyalgia, so are rheumatoid arthritis, Sjögren syndrome and many other chronic conditions.
Small-fiber Neuropathy and Fibromyalgia
YNOT: Can you please discuss the latest research that attributes fibromyalgia pain to small-fiber neuropathy?
Carmen_Gota,_MD: Many patients with fibromyalgia report transient numbness, tingling and burning in hands and feet, that come and go. Routine EMGs (electromyograms) and nerve conduction studies fail to show electrical abnormalities, but some of these patients are diagnosed by neurology as having small-fiber neuropathy, a condition that can be diagnosed by a skin biopsy. This procedure demonstrates a decrease in nerve fiber density and some other changes. The association of small-fiber neuropathy with fibromyalgia is not very clear. In a recent study 27 patients with fibromyalgia were compared with 30 control patients. The study found that 41 percent of skin biopsies from subjects with fibromyalgia and three percent of skin biopsies from control subjects were diagnostic of small fiber neuropathy. Since this study is small, we need larger studies to investigate this association. Many treatments are similar both for small-fiber neuropathy and fibromyalgia, including tricyclic antidepressants such as Elavil® (amitriptyline), or antiseizure medications such as Neurontin® (gabapentin) or Lyrica® (pregabalin).
YNOT: As mentioned in that study, I personally fit almost exactly the symptoms as listed for this. The fact that this is a very recent study, are there any significant ways of testing for this in laboratory studies, as I can find nothing in Canada so far. My doctor quickly encompasses the significant nerve pain, burning and prickling that I feel all over my body as being fibromyalgia. A more recent symptom is pulsating head pain that is not the same as headaches I had experienced years ago.
Carmen_Gota,_MD: The mechanisms of fibromyalgia pain are more complex that small fiber involvement. There is a process called central sensitization, in which pain is enhanced in the brain and descending pathways. The treatment for small-fiber neuropathy is very similar to that of fibromyalgia.
YNOT: In addition to this recent research on fibromyalgia pain that indicates it is due to small-fiber neuropathy, there has been the suggestion of nerve dysfunction in the past, but this would demonstrate nerve damage. At one time fibromyalgia pain was thought to be in the muscles, but there was no damage to the muscles to be seen, so research moved up to the brain and there was plenty up there to be seen. However, researchers still debate on fibromyalgia for its validity as a medical condition. Where is this elusive pain? Yes, those brain scans do show something, and, yes those neurotransmitters and substance P are abnormal, but is it fibromyalgia or is it something else yet to be defined? Could it be other conditions that are misdiagnosed?
Carmen_Gota,_MD: I think fibromyalgia illustrates how complex our body is. It also illustrates how little we know about the complex mechanisms of pain perception. The symptoms of fibromyalgia are highly compelling. We do not need MRIs, CTs, or extensive testing to ‘rule out’ other conditions. It may sound surprising, but fibromyalgia is a ‘rule in’ diagnosis. It is done clinically with very good accuracy.
charyvon: What tests should be done to diagnose fibromyalgia?
Carmen_Gota,_MD: Fibromyalgia is a condition in which the diagnosis is symptom based. There is no blood test that can confirm or infirm the diagnosis.
In medical research studies, patients with fibromyalgia have low levels of serotonin, norepinephrine and dopamine metabolites in the spinal fluid and high levels of substance P. The first three hormones that found in the body have a role in decreasing pain, while substance P increases pain. These measurements are not available for patients to have done in clinical practice. Nevertheless, clinicians do a lot of blood work in patients with fibromyalgia—generally directed at excluding other causes that can make the symptoms worse such as thyroid disease or anemia.
Zozz88: Can an MRI showing scarring on the brain be the result of years of fibromyalgia or years of migraine headaches? I have received contradicting diagnoses.
Carmen_Gota,_MD: There are no brain MRI studies in general clinical practice that can confirm or discount a diagnosis of fibromyalgia. Migraines, often times associated with fibromyalgia, have been associated with MRI findings showing small changes in the brain’s white matter. These changes are thought to be nonspecific, but are often found on MRIs, which likely explains the contradictory answers you have received. There are many medical research studies that look at functional MRIs in fibromyalgia, but these tests are for research only and not available in practice. The use of functional MRI techniques in fibromyalgia has helped us learn a lot about this condition. For example, it has been shown that different brain areas process pain in patients with fibromyalgia compared to control patients when subjected to the same painful stimuli.
Fibromyalgia Treatment Plan
writer53: Is fibromyalgia an inflammatory disease? What are the drug treatments for fibromyalgia? Please also discuss the role of diet and supplementation (under the guidance of a trained nutritionist) for alleviating or reversing the symptoms and course of fibromyalgia.
Carmen_Gota,_MD: A healthy diet is important. Having regular meal hours and starting the day with breakfast is important. Unfortunately, diet itself does not cure fibromyalgia. Diet can help maintain a healthy weight, and provides a balanced combination of nutrients. Fibromyalgia patients suffering from diarrhea should be tested for celiac disease. If the test is positive, this patient could benefit from a gluten-free diet. Fibromyalgia is not an inflammatory disease.
JAW: I have not been able to take the main medications used for treating fibromyalgia. Would acupuncture help? What other options are available?
Carmen_Gota,_MD: There are small studies that show the benefit of acupuncture for fibromyalgia. Fibromyalgia is complex condition, and represents a response to chronic longstanding stress. There is no one single treatment or medication that can result in a cure. Every person has his or her own fibromyalgia fingerprint—which is a combination of genetics, family environment, early-life stress, current and past stressors, associated depression, anxiety and sleep problems. We also have found that how people respond to pain is essential in the ability to control it. So, to manage such a complex condition, we must look at the whole person, identify reversible stressors, associated depression, sleep problems and malfunctioning responses to pain such as helplessness. The treatment has to address all these factors. So, a customized treatment plan for fibromyalgia should include:
- Elimination of the individual stressors—if possible
- Treatment of depression and anxiety if present
- Improvement of sleep with correction of primary sleep deficiencies if present
- Learning relaxation methods and correction of maladaptive responses to pain
Medications help, but a sole reliance on medications is usually insufficient. Combining yoga with graded aerobic exercise and stress management—being persistent—are all good plans to manage fibromyalgia.
rebma02: I'm 29 years old and have been suffering with fibromyalgia symptoms for at least three years. My mother was diagnosed in her mid-30s with fibromyalgia and rheumatoid arthritis, so I've seen what these diseases can do to the body. What new treatments are available and what can be done to prevent these symptoms from getting worse over time?
Carmen_Gota,_MD: The treatment of fibromyalgia is complex and the whole person has to be taken into consideration. The causes of fibromyalgia in the individual patient have been discussed, but the following treatment plan should include:
- Good quality sleep
- Management of depression and anxiety
- Combating maladaptive response to pain
- Stress management
Medications help—usually we use antidepressants of various classes and some of the antiseizure drugs (Neurontin® [gabapentin] and Lyrica® [pregabalin]). How much do medications help? Overall, extensive literature has shown that about 30 percent of fibromyalgia patients who take medications—like Lyrica®, Savella® (milnacipran hydrochloride) or Cymbalta ® (duloxetine) (all approved by the FDA to treat fibromyalgia)—achieve a 50 percent improvement in pain, while 50 percent of patients achieve a 30 percent improvement in pain.
I think that a successful fibromyalgia treatment program is sustained, long term, and should include exercise, relaxation, education about fibromyalgia and management of other comorbidities like depression or anxiety—in addition to medications.
The Cleveland Clinic Fibromyalgia Program is a multidisciplinary program that includes rheumatology, psychology and physical therapy. We try to identify each patient's fibromyalgia fingerprint, and address those factors that contribute to stress, depression, sleep and maladaptive pain responses. Exercise is a staple of the fibromyalgia treatment.
Exercises for Fibromyalgia
juphilli: In lieu of medication what types of exercise or holistic aspects can be used to help lessen the pain?
Carmen_Gota,_MD: This is a very important point that you are bringing up—that reliance on medications alone rarely results in significant improvements in fibromyalgia.
The goal of exercise is many fold.
Our ancestors walked and walked. It has been estimated that they walked about 12 miles a day. In our modern life, we do not walk. Many patients come to me and report their fibromyalgia symptoms getting worse after stopping their exercise. So I believe that fibromyalgia symptoms, tense muscles and pain, are in part the results of exercise deprivation.
So what kind of exercise helps? It depends on your baseline level. For beginners we always recommend a combination of gentle stretching and strengthening exercises as well as starting aerobic exercise. A recent medical study review found that fibromyalgia patients better tolerate water exercise as compared with land-based exercises in those who begin a physical exercise program. If you hurt more after you exercise and feel wiped out for the next one or two days, the key is to find the minimum level of exercise that you can tolerate without feeling bad the next day. If you only can exercise five minutes that is o.k. The principle is to start low, go slow—but go! If that is your initial limit, exercise five minutes every day for a month, and then the next month increase your limit another five minutes. In this way your body will adapt, without the unpleasant pain and fatigue that follows after exercise. The goal is to persist, and gradually increase to 30 minutes of moderate aerobic exercise at least three times a week. If you get there in six months or one year, that is o.k. As long as you have a goal and pursue it.
For the exercise to be successful, it has to be moderately aerobic and sustained. There is extensive medical literature that supports the role of exercise—not only on fibromyalgia pain, but also on sleep, mood, concentration and memory. When we exercise, we are in control, and we actively do something for ourselves. We also produce endorphins, which are natural opioids. We also stimulate the production of a substance called BDNF—brain derived neurotrophic factor, which stimulates brain regeneration and helps with memory and attention. Last but not least, exercise helps your mood significantly.
cleveland66: I have struggled with fibromyalgia for many years. I am currently taking 300 to 400 mg Neurontin® (gabapentin) to alleviate symptoms and poor sleep. I am also on Tambocor® (flecainide) 50 mg twice daily and Pradaxa® (dabigatran etexilate) 50 mg once daily. I am fearful of increasing the Neurontin®, but I am only getting a little, if any, relief. My neurologist and back surgeon who I have seen for debilitating peripheral neuropathy in both legs and feet say the symptoms are all part of my fibromyalgia. Have you seen other patients with terrible neuropathy and what would be your recommendation for me? This has really altered my quality of life along with all of the other symptoms of fibromyalgia. I am fighting depression and keep as active as I can every day. I exercise daily, but it is getting to be very difficult for me—yet I know the importance of it.
Carmen_Gota,_MD: I would suggest to consider water aerobic exercise and try to optimize the treatment of depression. There is a lot of medical data that shows fibromyalgia symptoms do not get better if depression is not controlled.
Weijteoh: Does physical therapy help? How?
Carmen_Gota,_MD: Yes, please see my answer to a similar question on exercise.
ragnar: Lyrica® (pregabalin) seems to give me some pain relief for my fibromyalgia. What is your reaction to using Lyrica®?
Carmen_Gota,_MD: I prescribe Lyrica® and some patients benefit from it, but not everybody. Treatment should be ‘tailored’ to the patient. Everyone is different. If one drug works, that is great. If it does not, I usually discontinue it.
Santorini: I am on Cymbalta® 60 mg daily. I has helped with the associated depression, but is no longer helping with the fibromyalgia pain. What new therapies are available? I also take Ambien® 10 mg for sleep due to insomnia.
Carmen_Gota,_MD: Please see my previous answer regarding medications and their benefits.
Crynsugar: In a rather large study, researchers asked 1,401 people suffering from fibromyalgia to rate the effectiveness of 104 different treatments. Participants shared information about their symptoms as well as what treatments worked best for them. Can you comment on this please?
Carmen_Gota,_MD: Regarding treatment and the utility of medications—the fact is not all fibromyalgia patients are the same, even when they share the same symptoms. That is why treatment is a challenge and has to be customized to the patients. There is no ‘one-size-fits-all’ in fibromyalgia.
Crynsugar: I would like to know what your views are on low-dose naltrexone (LDN) for fibromyalgia treatment. I have been taking LDN 4.5 mg for over a year now and have had no fibromyalgia pain in all that time. (My husband also takes the same dose for his multiple sclerosis and transverse myelitis and he hasn't had any symptoms for almost four years now.)
Carmen_Gota,_MD: Naltrexone is an opioid antagonist, a drug that attaches to opioid receptors in the body. Given at low dosages (3 to 5 mg ) has been demonstrated to reduce symptom severity in a small number of chronic conditions like fibromyalgia, Crohn disease and multiple sclerosis. How it works is not clear, but it may be through an anti-inflammatory effect—separate from the blockade of opioid receptors. Naltrexone may have an effect on a type of cell called microglia, which resides in the central nervous system and has a role in the immune defense in the brain. Activated microglia produce a lot of inflammatory substances, such as nitric oxide and cytokines, which can interact with neurons ( the nerve cells) and cause fatigue and increased pain. In a recently published medical study, 28 patients found a 15-point reduction in the pain score of patients who took Naltrexone compared to a 10-point reduction in the pain score of patients who took a placebo ( sugar pill). And this difference was significant. There was no improvement in fatigue and sleep.
So, if somebody’s pain score was 80, naltrexone decreased it on average by 15 points to 65. Overall, for a patient with fibromyalgia to report significant improvement, the pain has to be reduced by 50 percent. So, in this example, a benefit was not reported in this study. My take on this is that naltrexone so far has not demonstrated the pain-relieving effects that would help most fibromyalgia patients.
Crynsugar: Low-dose naltrexone (LDN) does work, and it is becoming the answer for pain relief for fibromyalgia. It is also providing relief of pain for some cancers, AIDS, autoimmune diseases and central nervous system diseases. Many patients are asking their doctors for it and educating their doctors about it. In one study 1401 patients were interviewed about their fibromyalgia. LDN came out on top as the medication that patients say works for fibromyalgia out of 104 treatments.
Carmen_Gota,_MD: I am not surprised about the efficacy of this medication for fibromyalgia. However, we have seen many medications come and go in popularity for the treatment of fibromyalgia. I firmly believe that to treat fibromyalgia you have to treat the whole patient. You have to understand why this particular person has fibromyalgia and then address the issues.
Fibromyalgia Medications During Pregnancy
Crynsugar: Can low-dose naltrexone (LDN) be taken during pregnancy? How about while breast feeding? A specialist in fertility care in Ireland said he believed LDN is perfectly safe in pregnancy, and in certain cases will actually reduce the risk of miscarriage. He stated that his practice had over 50 babies whose moms have been on LDN throughout their pregnancies and those babies were actually healthier than those who had not been on LDN.
Carmen_Gota,_MD: Naltrexone is a pregnancy risk factor C. That means that pregnancy risk cannot be ruled out. It is also excreted in breast milk.
rebma02: How are fibromyalgia symptoms affected during pregnancy, and are there any medications that are safe to take during pregnancy to help lessen symptoms? And is it safe to take Savella® (milnacipran hydrochloride) while breast feeding?
Carmen_Gota,_MD: Every woman has her own pregnancy experience. The presence of fibromyalgia can make the symptoms of both pregnancy and fibromyalgia worse, especially if sleep is affected because of heartburn or other pregnancy-related issues. But pregnancy can also make the symptoms of fibromyalgia better because of all the positive emotional factors related to becoming a parent.
With regards to your question about fibromyalgia treatment with antidepressants during pregnancy. The data is not conclusive, but a medical review of 1500 pregnancies in women taking Prozac® has not found any toxicity. For many other antidepressants, the data may be slightly conflicting. Some studies show no risk for the baby while others show some small risk for birth defects. There is not enough data to comment on Lexapro® (escitalopram oxalate) or Effexor XR® (venlafaxine hydrochloride). Zoloft® (sertraline hydrochloride) was found to be safe in some studies while others raised the concern of septal defects. Cymbalta® (duloxetine) was found to have no adverse effects in 28 pregnancies. While there has been no good medical data on the use of Neurontin® (gabapentin) during pregnancy, it has been found in breast milk. Lyrica® (pregabalin) may affect fertility both in men and women. Savella® (milnacipran hydrochloride) is found in the breast milk. I would consult with your obstetrician and primary care doctor regarding any medications during pregnancy. I usually tell my patients to stop their medications, unless there is a patient who suffers from severe depression or anxiety—in which case I advise the patient to consult with her obstetrician and primary care doctor.
Supplements for Fibromyalgia
cbob: I heard that creatine supplements may be a good non-drug alternative to fibromyalgia medications. Would you comment?
Carmen_Gota,_MD: Creatine monohydrate is a dietary supplement that increases muscle performance in short-duration, high-intensity resistance exercises. A recent study found that after 16 weeks of taking other creatine or placebo, patients with fibromyalgia who took creatine showed higher muscle levels of phosphorylcreatine content, and presented greater muscle strength compared to placebo.
What does this mean? It means that creatine can help physical performance, but one still has to exercise. Is creatine the cure for fibromyalgia? Definitely no. Can it help a little? Yes, it can help the muscle performance a little. Does it help the fibromyalgia symptoms? No. The study revealed no general changes in aerobic conditioning, pain, cognitive function, quality of sleep and quality of life.
Weijteoh: I wanted to share my positive holistic treatment experience. Acupuncture helps a lot to relieve clinical depression and provides lubricant-like chemicals that reduce pain and stiffness. The results last about one week and I need weekly treatments. But my quality of life has hardly suffered at all in recent months. I wonder if you have ever seen anyone totally recovered from the illness after they do all you have suggested (including treating depression, sleep disorder and exercise). I want to have some hope that someday I'll be pain free and feel totally well again. Is this possible?
Carmen_Gota,_MD: Yes, I have seen many patients get better—much better. Our goal in fibromyalgia treatment is to make patients function normally in family, society and work. Our goal is to create an internal locus—meaning patients control their fibromyalgia, as opposed to external locus—when fibromyalgia controls the patient. It takes time and persistence, but it works.
telephone: Is chiropractic treatment useful for fibromyalgia?
Carmen_Gota,_MD: I am not aware of any studies.
National Fibromyalgia Programs
Fibro: Since I see that you completed your medical residency in New York City, are you aware of any hospitals there that have specialists that treat patients with fibromyalgia?
Carmen_Gota,_MD: I am so sorry but I do not know. I am sure there are though. I would check with New York University (NYU), Hospital for Special Surgery (HSS) or Columbia University.
Cleveland Clinic Fibromyalgia Management Program
Fibro: I have a spouse who was diagnosed with fibromyalgia three years ago. She is no longer able to work and cannot stay in one position sitting, lying down or standing for more then a few minutes due to the pain. She is currently on three different medications from a pain management specialist. This doctor has recommended we go to a center with a multidisciplinary approach. Our local support group goes on trips such as bowling. Obviously, this is not something she can do. We were researching Cleveland Clinic’s program. We live in New York City. How long would we have to be in Cleveland for an evaluation? If it is determined that she would benefit from your multidisciplinary approach, how long is the program?
Carmen_Gota,_MD: I totally agree. I think an intensive multidisciplinary approach would be the best option for your wife. Cleveland Clinic has a three-week outpatient program, which has very good results. There may be something similar in New York City, but I am not aware of one. If you choose to come to Cleveland, we can offer you an appointment here and then with our pain psychologist for an initial evaluation. We also offer a one-day fibromyalgia clinic on the last Thursday of each month, which is focused mainly on education.
Carmen_Gota,_MD: I would like to thank everyone for their questions. Thank you for participating in this chat with me.
To make an appointment with Dr. Gota or any of the other specialists in Cleveland Clinic’s Department of Rheumatologic & Immunologic Diseases, please call 866.275.7496. You can also visit us online at clevelandclinic.org/rheum.
For more about our Fibromyalgia Management Program or an appointment, call 216.444.0564 or 800.223.2273 ext 40564.
For More Information
For more about our Fibromyalgia Management Program or an appointment, call 216.444.0564 or 800.223.2273 ext 40564.
You may also obtain a brochure of the program.
On Cleveland Clinic
Modeled after the most modern pain rehabilitation programs in the U.S., Cleveland Clinic’s Fibromyalgia Management Program addresses all factors contributing to your discomfort. It’s about more than short-term pain relief. It’s about life-changing, long-term improvement.
Our multidisciplinary program includes:
- Evaluation by a rheumatologist: One of our fibromyalgia experts will evaluate the cause of your pain and any factors affecting it, such as sleep problems, depression, arthritis or other musculoskeletal issues. Your doctor will customize your treatment, addressing anything contributing to your pain and fatigue.
- Cognitive behavioral therapy: Learn how to better manage your pain and stress during group sessions. We can help you improve your quality of life through self-talk, positive coping skills, symptom reduction skills, mindfulness meditation and relaxation techniques.
- Physical therapy: Our physical therapy team will evaluate you and design a personalized program that you can do at home, so you can become more active and function better.
Cleveland Clinic’s rheumatologists are leaders in research and specialize in the evaluation, diagnosis and treatment of the conditions that affect the bones, muscles, joints and skin. Our team works with patients and their families to create individualized treatment plans for their rheumatic diseases. Rheumatology at Cleveland Clinic was rated best in Ohio and second in the nation by U.S. News & World Report.
On Your Health
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