- Diseases, Disorders & Conditions
What Is Fibromyalgia - symptoms, causes, research, and treatment options
You’ve probably heard a lot about fibromyalgia, or fibro or FMS, for short. There are numerous ads on television about fibromyalgia drugs these days, and chances are good that you might know someone who suffers from fibro, as it affects some twelve million people in the United States. I was diagnosed with fibromyalgia several years ago, but I don’t believe I have it. Once I had MRIs, and my physicians found my nerve damage, the fibro diagnosis was sort of forgotten about. I do, however, have two very close friends who definitely have the condition, so I’ve learned a lot about living with fibromyalgia from them. Also, when my doctors thought I had the condition, I did a lot of research and talked to several health care professionals about it. Two of my daughters work in the health care field, so I’ve learned a lot from them. My nurse-daughter has been especially helpful. She works in a pain clinic, and many of her patients have fibro myalgia. I’ve tried to compile here everything I’ve learned about FMS, including symptoms, diagnosis, treatment options, and Social Security Disability. If you have or think you might have this condition, I hope you find this information about fibromyalgia helpful.
Symptoms of Fibromyalgia
Symptoms of fibromyalgia are sometimes hard to describe and can mimic other conditions. They can also be somewhat vague, as they’re usually widespread. One of my oldest, dearest friends has fibro, and it has completely disrupted her life. She’s a public school teacher and loves her job, but she finds working impossible some days. I’ll call her “Barb.”
Barb has explained the pain this way: During a flare-up, the slightest touch can cause pain. For example, if another person slightly squeezes her shoulder during a flare-up, she might feel intense pain, like a burning or stabbing. Barb sometimes finds that even hugs from her young granddaughter are painful. Sometimes the pain is present even without any touch stimulus. She’s often extremely tired, too, even when there’s no obvious reason for the exhaustion or fatigue. One of the fibromyalgia symptoms she finds the most difficult to live with is fibro fog. Fibro fog is just what it sounds like. You feel as if you’re having brain fog, where thinking and concentrating are all but impossible. Barb has experienced fibro fog numerous times while teaching. She says she knows what she wants to say to her students, but her words won’t come out right. At times, she finds it impossible to grade papers.
Other symptoms of fibromyalgia can include sleep problems. Falling asleep and/or staying asleep might be difficult. Dry mouth and dry nose can be present, too, along with frequent headaches. People with fibro might have trouble adjusting to hot or cold conditions. I know two people with the condition who can’t tolerate heat at all. In the hot Georgia summers, they rarely venture out of doors. Some sufferers have the same problem with cold weather and tolerate heat better.
Fibromyalgia symptoms often include anxiety and depression. Barb and I have decided that this is a vicious cycle. Depression makes the fibro pain and other symptoms worse, and feeling so lousy causes more depression, which increases the pain even more. They seem to feed off each other, if you know what I mean. The depression from the condition can get bad enough that the patient doesn’t want to leave her home or be involved with any activities. She might be reluctant to engage in or be uninterested in things she would otherwise find enjoyable.
One of the strange things about FMS is how the symptoms come and go. For example, Barb’s flare-ups are totally unpredictable. Her most recent bout was after a year that was free of fibro flare-ups. Even without experiencing flares, she’s always in at least some pain, but it’s usually bearable, sort of like vague aches, as she described them to me. During a flare-up, however, the pain is intense, and it’s usually accompanied by other fibromyalgia symptoms like fatigue and fibro fog. She’s having a terrible flare now, although just last week she was playing tennis.
Other symptoms of fibromyalgia are similar to those associated with irritable bowel syndrome, or IBS. These can include abdominal pain, constipation, diarrhea, and cramps. In fact, many people with FMS also have IBS.
What is Fibromyalgia?
What Is Fibromyalgia
What is fibromyalgia? Well, according to medical dictionaries, the definition of fibromyalgia is a chronic neurosensory disorder accompanied by fatigue, stiffness in the joints, and widespread pain. It might also include wide mood swings, panic attacks, and anxiety. The pain and other associated symptoms might come and go. Because several different symptoms are usually experienced, the condition is often referred to as fibromyalgia syndrome, or FMS.
Science is finally beginning to catch up to this condition. For years, some doctors believed that FMS was all “in their patients’ heads.” More recently, however, fibromyalgia research has discovered some physical evidence that supports claims. The critical key seems to be a substance found in the brain and spinal fluid, called Substance P. Substance P is a neuropeptide, small molecules that neurons use for communication, like signaling the brain via chemical messages and telling the central nervous system that pain is being felt. Lab mice that lack this substance don’t have the ability to feel pain. People with FMS often have too much Substance P, which means they experience pain even from mild stimuli. In addition, those with FMS have been found to have lower than normal levels of norepinephrine and serotonin than average.
It’s estimated by the National Fibromyalgia Association that about ten million Americans have FMS, but other organizations estimate a higher number – up to twelve million. Around the world, the estimate is 3-6% of the general population. The condition mostly affects adult females, by about a 9:1 ratio with males, but men can have it, too.
Fibromyalgia in Men
Fibromyalgia in men is probably more widespread that we realize. According to the American College of Rheumatology, as many as 1.6% of men in the United States have the condition, but they add that the condition is probably more prevalent than is reported. Why is that? Well, I hate to sound sexist, but men often avoid going to doctors. I know my husband does. If it weren’t for me, he’d be dead – seriously. He tried to go to work with a ruptured bowel several years ago, convinced that it was just a stomach virus. Recently, he suffered from atrial fibrillation and refused to go to the emergency room. I finally forced him to go, practically at gunpoint. He spent a week in ICU. I think there’s also a certain stigma attached to FMS, as in it’s a “women’s disease.” Sadly, some doctors even fall for this. Because it’s fairly rare for men to suffer from the condition, some physicians are reluctant to diagnose men.
Why is fibromyalgia in men seen much less frequently than it is in women? Some doctors think it has to do with estrogen levels, as the hormone can reduce the threshold for pain. Men who do have FMS often suffer from fewer associated symptoms. For example, they might have fewer trigger points, and they might not experience as much fatigue. Of course, some of this might be psychological. Men are supposed to be tough and manly, and they often feel that they’re not supposed to “give in” to aches and pains.
Causes of Fibromyalgia:
Causes Of Fibromyalgia
Doctors don’t know the exact causes of fibromyalgia. Some doctors believe that stress and anxiety can play a role. I’ve already mentioned Substance P and its association with FMS. I’ve also mentioned the lower levels of serotonin and norepinephrine in people with FMS. Doctors now think that dopamine might play a role, too.
Dopamine is a neurotransmitter that has five receptors in the brain. It can be described as a “reward messenger,” but it also plays an important role in voluntary motion, behavior, cognitive ability, attention span, motivation, mood, sleep, and punishment. In people with FMS, dopamine doesn’t work correctly.
Okay, it seems that people with FMS have a problem with neurotransmitters and the central nervous system, but what causes that? Fibromyalgia research indicates that some people are born with genetic predispositions that leave them more vulnerable to FMS. Illnesses, injuries, or any type of trauma might also trigger the onset of fibromyalgia in some people, especially those who already have the genetic predisposition. Some research indicates, however, that physical trauma plays no part in the onset of FMS, but that certain psychological conditions might. These include bipolar disorder, post traumatic stress disorder, obsessive-compulsive disorder, panic disorder, depression, and certain eating disorders.
Diagnosing Fibromyalgia Tender Points:
Diagnosing fibromyalgia isn’t usually easy. It’s not a viral or bacterial infection that can be discovered with a simple blood test. It won’t show up on x-rays or MRIs, either, as it’s not like a broken bone or a torn muscle or ligament. A urine analysis won’t help, and neither will a biopsy. With all this in mind, how do you diagnose fibromyalgia?
Signs of fibromyalgia are mostly based on the patient’s reaction to trigger points or tender points. Fibromyalgia tender points are located pretty much all over the body, on both sides and in numerous locations. When these points are probed, manipulated, or sometimes even touched, a fibro patient will experience pain or discomfort. According to the American College of Rheumatology, there are eighteen fibromyalgia tender points on the body. On the front of the body, there are trigger points on both sides, at the neck, just below the collar bone, on the insides of the elbows, and at the insides of the knees. On the back, there are trigger points at the back of the head, at the top of the shoulders, at the shoulder blades, at the sides of the lower back, and at the lower outside of the hips. A patient doesn’t have to experience pain in all eighteen fibromyalgia trigger points to be diagnosed. According to the American College of Rheumatology, a patient must experience widespread pain for at least three months, usually in addition to pain or tenderness responses in at least eleven of the eighteen trigger points.
Fibromyalgia treatment might take several forms. Some physicians have little faith in natural remedies, so they often turn to drugs as their first fibromyalgia treatment options. The most popular of the fibromyalgia drugs is probably Lyrica. Lyrica is the brand name for pregabalin, which is an anticonvulsant often prescribed to treat seizures. From what I can find, doctors aren’t really sure exactly how Lyrica provides fibromyalgia pain relief, but it does for many people. It doesn’t work for everyone, however, and some people can’t take it because of the side effects. I tried it but had an allergic reaction. Barb tried it, too, but she couldn’t take it because it aggravated her restless leg syndrome. I really wish I could take Lyrica! It made me feel great, but I broke out in an itchy rash after taking it. When I stopped taking it, the rash went away and didn’t return. By the way, Lyrica was the first drug approved by the FDA to specifically treat FMS. Since then, two other drugs, Cymbalta and Savella, have both been approved by the FDA as fibromyalgia treatments.
I know little about Savella, but I take Cymbalta. After my father shot himself, I began having panic attacks. I was in denial for months, as I was convinced that I was not suffering from anxiety. I fully believed these “attacks” were caused by some problem with my heart, my blood pressure, or my blood glucose levels. I finally had to give in and try a selective serotonin reuptake inhibitor (SSRI), an antidepressant that helps with serotonin levels. Serotonin is a neurotransmitter that sends chemical messages to the brain involving a sense of well being and happiness. Some of the most common SSRIs include Lexapro, Zoloft, Prozac, Celexa, and Paxil. I was prescribed Paxil, and it completely stopped my panic attacks. When I began having muscle and nerve pain, my doctor switched me to Cymbalta, which is an SNRI – a selective serotonin and norepinephrine reuptake inhibitor. Norepinephrine is a neurotransmitter that can also act as a hormone. It helps the brain deal with stress, and with Cymbalta, pain relief can also be achieved.
Cymbalta is the brand name for duloxetine. It’s used to treat anxiety disorder, depression, and peripheral nerve pain, including diabetic peripheral neuropathy. Since I’ve suffered from anxiety attacks in the past and have peripheral nerve pain, my doctor thought Cymbalta was a good fit for me, and she was right. I wasn’t so sure about this at first, however. Cymbalta side effects are numerous, but I experienced only one, and it was almost enough to make me flush the rest of the capsules down the toilet. When I first started taking the drug, I had terrible, graphic nightmares. I mean, the details were vivid and startling. They were the most terrifying nightmares I’ve ever experienced. In fact, I can still recall the worst with amazing and scary minute details, even though the dream occurred several years ago. I voiced my concerns with my doctor, and she asked me to try the drug for a couple more weeks to see if the side effect would diminish. I took her advice, and the nightmares almost stopped completely. I still have the occasional bad dream, but they’re pretty rare, and they certainly don’t equal the horror of the ones I had when I first started taking duloxetine.
Cymbalta really helps with my nerve pain. If I forget to take my nightly dose, I can tell it the next day. My pain is worse. I also experience another symptom when I miss a dose: I can’t think right. It’s like there’s no connection between my brain and my mouth. I know what I want to say, but I can’t seem to voice it. This sort of brings up another important point about SSRIs and SNRIs: don’t stop taking them abruptly. If you’ve been on these drugs and want to discontinue them, talk to your doctor about weaning you off gradually.
Does Cymbalta work as a fibromyalgia treatment for everyone? No. I’ve talked to some people who got no relief from duloxetine. I asked my friend Barb about the drug, and she said it gave her fibromyalgia pain relief, with few side effects. She was forced to stop taking it, however, as she can no longer afford it. Even with her insurance, she has to pay almost $200 for a month’s supply. Strangely, we have the same insurance, and my co-pay for Cymbalta is just $40 per month. I have no idea why my policy requires a smaller co-pay than hers does.
Another drug that is sometimes used for fibromyalgia treatment is tramadol, or Ultram. Tramadol works much like a narcotic, but it’s not a narcotic, so it’s usually considered safer than opioids. Some doctors won’t prescribe tramadol if the patient is taking an SSRI or an SNRI because of the possible danger of serotonin syndrome. Because tramadol affects serotonin and norepinephrine in much the same way that SSRIs and SNRIs do, those physicians feel like serotonin syndrome is more likely to occur. And, by the way, serotonin syndrome can be deadly. My primary care doctor is one who won’t prescribe tramadol to a patient who is taking Cymbalta. The doctor that my nurse-daughter works for, on the other hand, sees no problem prescribing tramadol with Cymbalta, as long as the patient is monitored. This guy is a real M.D., an anesthesiologist who specializes in pain management. My husband takes tramadol for his arthritis, and I sometimes take a small dose, even though I’m not supposed to. My doc prescribed hydrocodone for my pain, but I hate taking it. The tramadol actually works better for me, and I experience fewer side effects. My friend Barb says tramadol really helps when she’s having fibro flare-ups, too.
Other drugs that might offer fibromyalgia pain relief are muscle relaxers, like flexeril, tinzanidine, and orphenadrine citrate. I’m familiar with only one of these – Flexeril, the brand name for cyclobenzaprine. Again, my overly cautious doctor won’t prescribe Flexeril for me because I take Cymbalta. Flexeril acts on norepinephrine, as does Cymbalta, and my physician worries about my getting too much norepinephrine. I often have painful muscle spasms from my damaged nerves, and such spasms are common symptoms of fibromyalgia, too. I have to tell you – when I’m having these spasms, nothing works as well at soothing them as Flexeril does. No, I’m not supposed to take it, but sometimes I get pretty desperate, so I “borrow” a small dose from a family member.
Natural Remedies For Fibromylagia
If you’ve received a diagnosis for fibromyalgia, your doctor might want to prescribe drugs. If you don’t want to go that route, you can try some natural remedies for fibromyalgia first. Not all these fibromyalgia treatments work for everyone, so you might need to do some experimenting to discover which ones help you.
As I’ve explained, Barb takes prescription drugs for her fibro flare-ups sometimes, but she also uses natural remedies for fibromyalgia. She often finds with these home remedies, she has to take fewer drugs. She says massage helps, and she also uses a heating pad. She has a lot of pain and stiffness when she first gets up in the mornings, and she says soaking in a hot bath helps “loosen” her up. She also takes vitamin B12 and iron supplements.
Some people find that regular stretching and mild exercise also help relieve their symptoms. Because FMS can involve joint pain, low impact exercises that are easy on the joints are best. Some people find that doing mild aerobics in a swimming pool or hot tub helps them relieve or better manage their pain. It’s also important that you get plenty of rest, and that’s not always easy when you have fibro. By “rest,” I’m including a good night’s sleep, but you might need other periods of rest and relaxation during the day, too. This can help your body better deal with stress. You might want to consider some relaxation techniques like meditation, deep breathing exercises, visual imagery, tai chi, hypnosis, or yoga.
To relieve pain at specific trigger points, you might want to experiment with a TENS unit. I have one, and I use it often. It really helps relieve muscle pain. My TENS unit has four pads that I put wherever I want them. I can adjust the electric current and change the pattern by pressing a button or turning a knob.
Some people with FMS have also found that acupuncture helps relieve symptoms. One of my pals with fibro sees a chiropractor on a regular basis, and she swears that the manipulations he does really helps her get through flare-ups. Some people also report finding relief from dietary supplements, including St. John’s wort, SAMe, melatonin, 5-HTP, and magnesium. Before reaching for supplements, however, talk to your doctor. It could be that a supplement might interfere with a drug that’s been prescribed. Another treatment option you might want to think about is a fibromyalgia diet.
Some people afflicted with the condition find that a special fibromyalgia diet helps lessen their symptoms. A diet for fibromyalgia usually includes whole foods like fresh fruits and vegetables, along with moderate amounts of lean meat and whole grains and lower amounts of sodium and sugar. The problem is that there doesn’t seem to be one fibromyalgia diet for all patients. That sort of makes sense when you take food allergies into consideration. If food allergies trigger flare-ups, recommended diets would have to include different foods, as not everyone is allergic to the same food items. Some in the health care field recommend that people with FMS be tested by an allergist to help them decide which foods to avoid.
Because one of the major symptoms of fibromyalgia is fatigue, an energy diet can be a good idea. This type of fibromyalgia diet includes eating several small meals throughout the day. Simple sugars, which can cause spikes and valleys with blood glucose levels, should be avoided. Better choices include meals of protein, along with whole grains or fresh veggies or fruits. You might also want to avoid common food additives like MSG, which can excite neurons and make them super sensitive to stimuli.
It’s important that you’re getting a wide range of vitamins and minerals from your diet, too. A lack of vitamin D plays a role in muscle pain, so be sure to get enough of that. Good sources of vitamin D are sunlight, tuna, salmon, egg yolks, and dairy products that have been fortified with the vitamin. You’ll also need adequate amounts if iron and vitamin B12. Good sources of B12 are shellfish, mackerel, salmon, tuna, beef, and eggs. Good sources of iron include beef, pork, chicken, cod, tuna, oysters, flounder, shrimp, turkey, and clams.
Any healthy diet should include plenty of antioxidants. They help protect and repair your cells from oxidative damage. Vitamins A, C, and E are all effective antioxidants. Good sources of vitamin A are chicken livers, sweet potatoes, carrots, spinach, butternut squash, pumpkin, eggs, cantaloupe, papayas, mangoes, dried parsley, dried basil, mustard greens, turnip greens, collard greens, kale, paprika, and cayenne. Good sources of vitamin C are papayas, oranges, grapefruit, lemons, pineapple, strawberries, raspberries, cantaloupe, bell peppers, and tomatoes. Healthy amounts of vitamin E can be found in almonds, wheat germ, safflower oil, sunflower oil, hazelnuts, sunflower seeds, peanuts, turnip greens, spinach, broccoli, tomatoes, and peanut butter.
If your fibromyalgia symptoms include those associated with IBS, you might want to try a diet that addresses that condition. A typical eating plan for IBS would include adequate amounts of dietary fiber from vegetables, fruits, whole grains, and legumes. You might also want to add yogurt to your diet, along with drinking plenty of water.
You might also want to consider targeting inflammation with your fibromyalgia diet. This can be especially effective if you suffer from other joint and muscle ailments. Foods that many experts believe can reduce inflammation include blueberries, strawberries, green tea, canola oil, nuts, flaxseed meal, olive oil, grape seed oil, avocados, broccoli, spinach, leafy green veggies, dried beans and peas, soy products, lean chicken and turkey, and fish that contain omega-3 fats.
Is Fibromyalgia Real
Many people, including some doctors, wonder: Is fibromyalgia real? I can assure that it’s very real for those suffering with it. Back when my doctors thought I had it, I remember going out of town to see a fibromyalgia specialist. This was an old guy who had a wonderful bedside manner. I asked him about some of his fellow physicians who questioned is fibromyalgia real, and he shared an interesting story with me. He said he had a good friend, another doctor, who had always pooh-poohed FMS. Ironically, this same doctor who had never believed in the syndrome developed it. My doc said his M.D. friend certainly changed his views on fibro once he had it.
Look at all the millions of people suffering from FMS. It’s difficult to believe that so many people are just imagining their symptoms. Thank goodness medical science discovered Substance P! Now there’s proof that those with FMS are “wired” differently than normal people are. Their sympathetic nervous systems don’t work the same, as their brains don’t properly deal with serotonin, dopamine, and/or norepinephrine.
If you have FMS, don’t let anyone tell you that it isn’t real and that your symptoms are all in your imagination. You know your body better than anyone else does, and you know when you’re in pain or are experiencing other unpleasant symptoms. If you’re having a problem getting your family and friends to understand, refer them to fibromyalgia research. Also, joining a fibromyalgia support group or blog discussion can be beneficial. You’ll get to chat with others who are going through the same thing, and you might even gain a few tips to help living with fibromyalgia.
You might be able to find a fibromyalgia specialist near you, one who’s familiar with treating the condition. From my experience, and from what my friends have experienced, most general practitioners know little about fibro myalgia. The best fibromyalgia doctors are usually rheumatologists. When my family doctor suspected that I might have the syndrome, she referred me to a local rheumatologist.
The man she referred me to was supposedly a fibromyalgia specialist, but I wasn’t impressed by him at all. Well, at least I wasn’t impressed with his knowledge of FMS. His PA, however, was wonderful. I’m not sure the rheumatologist fully believed in the existence of fibro, even though he was touted as a fibromyalgia specialist. I think he ran every test known to medical science on me, in order to find out what was “really” causing my symptoms. I went over all the tests and test results and was shocked at some of them. This guy had tested me for practically everything under the sun, including some rare diseases that had only been found in Africa. I’ve never even been to Africa, by the way. I suppose I shouldn’t be so hard on him, though, as he is the first physician to discover my nerve damage and my MGUS. I was glad to find my pain was coming from nerve damage instead of FMS, so I could stop seeing him. His personality and treatment methods left much to be desired.
The most important thing to remember when searching for fibromyalgia doctors is to find one who believes in you. If he or she scoffs at your complaints or diagnosis, you need to find a different doctor. You need a strong support system, and your physician should be an integral part of that team.
Social Security Disability for Fibromyalgia
Can you get Social Security Disability for fibromyalgia? Yes, you can, but it’s often a difficult process. I’ve had experience with getting Social Security Disability, or SSDI. I was approved quickly – but not for fibro. My nerve damage got my application approved. I have an article about how to get your Social Security Disability approved, and I’m not going to repeat all those tips here. If you want to read the article, click the link.
The most important key to getting SSDI with fibromyalgia is to see a knowledgeable doctor on a regular basis. This will most likely be a rheumatologist, although you might also see a physical therapist, a pain specialist, a neurologist, an orthopedist who treats problems with muscles and joints, a massage therapist, and/or a chiropractor. You might also visit a psychologist to help you deal with some of the emotional problems associated with FMS. The diagnostic criteria established by the American College of Rheumatologists should be used, and the results should be documented.
Fibromyalgia isn’t found on the Social Security Disability list of qualified impairments, so the associated symptoms have to be addressed. Here’s how SSDI works: You have to convince them that you’re unable to work a fulltime job due to a physical, mental, or emotional problem. The condition must prevent your ability to do tasks and activities normally associated with working. These might include fine motor skills, lifting, climbing stairs, sitting for extended periods, standing, walking, or fingering. If your hearing, memory, vision, concentration, or speaking is impaired, that will be taken into consideration, too. Limitations specific to fibromyalgia disability might include stiffness or pain after sitting, the cognitive skills impaired by fibro fog, and/or extreme fatigue. Depression associated with FMS will most likely be considered, also.
The majority of applications for SSDI are turned down at the initial step, so don't be dissuaded if yours is. Be specific in telling SS how FMS has changed and restricted your life. Be honest, but be thorough. It's often a good idea to keep a daily journal of how you felt and what you were and weren't able to do on a day-to-day basis. Also, be sure to document the effects any medications might have on you. If you're turned down for SSDI but honestly feel you have a legitimate case, you might want to consider hiring a disability lawyer for the third level appeal. Be sure to search for disability attorneys who specialize in SSDI.
Living With Fibromyalgia
Living with fibromyalgia is never easy, but there are things you can do to make the condition more bearable. For one thing, you need to learn your limitations, and you need to share that information with your friends, your family, your employer, and your co-workers. That way, when they ask you to do something of which you’re incapable and you refuse, they’ll at least understand the reasons why. Take advantage of your good days to enjoy activities you like. FMS can completely control your life if you don’t learn to manage it adequately. It’s important for you to listen to what your body is trying to tell you, and to take good care of it. Learn to say “no,” and learn to relax. Exercise when you can, and try natural remedies for fibromyalgia until you find one that works for you. If they offer no relief, talk to your doctor about prescription drugs. Living with fibromyalgia is no picnic, but there’s no reason for it to ruin your life.