If you have symptoms that point to fibromyalgia but haven’t been diagnosed, you are not alone. Many people spend years working with doctors to rule out other diseases. That’s because a number of other conditions share fibromyalgia’s primary symptoms—chronic pain and fatigue.
Wouldn’t it be a relief if there was a simple lab test that could identify fibromyalgia? Unfortunately, there are no tests or X-rays available to diagnose the condition. As a result, doctors often look at conditions that share the same symptoms. Learn what other conditions can be mistaken for fibromyalgia and why finding a clear diagnosis is so important.
Rheumatoid arthritis may seem similar to fibromyalgia because pain is a primary symptom of this disease. But there are a lot of differences. Unlike fibromyalgia, rheumatoid arthritis causes inflammation in the body. And some symptoms of rheumatoid arthritis are visible. For example, people with the condition may have swollen or deformed joints.
Doctors diagnose rheumatoid arthritis by a physical exam, blood tests that look specifically for rheumatoid factors and signs of inflammation, and X-rays to look for joint damage.
Lupus, a chronic disease that also causes fatigue and painful joints, can be difficult to diagnose because there is no specific test for it. But certain factors make it possible to differentiate it from fibromyalgia. For example, unlike fibromyalgia, lupus causes inflammation, arthritis, skin rashes, and damage to tissue and organs.
Doctors make a lupus diagnosis by taking into account your symptoms, medical history, and a series of lab tests.
Chronic fatigue syndrome is a complex disorder that some medical experts believe is closely related to fibromyalgia. People with chronic fatigue syndrome have many of the same symptoms as those with fibromyalgia, including pain, fatigue, brain fog, difficulty sleeping, headaches, and more.
The main difference is that severe and overwhelming fatigue is the primary symptom of chronic fatigue syndrome, while pain is the dominant symptom of fibromyalgia.
Hypothyroidism occurs when the thyroid gland does not produce enough of the hormones the body needs to regulate metabolism and other functions. An underactive thyroid can cause a number of symptoms similar to fibromyalgia. These include fatigue, joint pain, and more. However, unlike fibromyalgia, hypothyroidism can be confirmed with a blood test and treated with thyroid hormone.
Although it can be frustrating to take the time to rule out other conditions, it’s very important to do so. Not only is having a correct diagnosis vital to getting the right treatment, but it may also shed light on a bigger health picture. That’s because fibromyalgia not only mimics other conditions, it tends to overlap them. This means you may have fibromyalgia as well as another condition, like rheumatoid arthritis. In fact, you are at higher risk for fibromyalgia if you have a rheumatic disease—one that affects the joints, muscles, and bones.
Once you have a clear diagnosis, you can work with your doctor to develop a treatment plan. If you have more than one condition, treating fibromyalgia can affect how you and your doctor manage your other conditions. And the treatment of other conditions can affect the pain of fibromyalgia. Understanding all your medical needs can lead to the best treatment possible.
Fibromyalgia affects about 5 to 6 million people in the United States, mostly women. Yet, so little is known about the condition and people with fibromyalgia often feel misunderstood. Here, three women share their thoughts about living with fibromyalgia.
People understand pain and fatigue if they can see the cause, like a broken bone or an incision from an operation. Fibromyalgia is an invisible illness though, making it harder to understand. But, “That pain is real. That pain is debilitating, affecting every part of your life,” says Sharon Gates, a retired nurse from Montreal, Canada.
Fibromyalgia isn’t a new illness. It’s existed for centuries under different names, such as rheumatism. Historical records about Florence Nightingale, the founder of modern nursing, show she probably had fibromyalgia.
“It’s a real medical condition, backed up by decades of work and many, many studies,” says Susanne Gilliam, a recent law school graduate in Massachusetts. But because there are so many unknowns, there are people who don’t believe it exists.
Illnesses like cancer or diabetes have tests to diagnose them. There are no tests for fibromyalgia and it can take an average of about five years to get a diagnosis. For some people, it takes much longer. Gilliam thinks she’s had it for about 18 years. In the meantime, it’s easy for people to begin wondering what is going on–because so many tests are coming back as normal.
Having a diagnosis is important. “When you get a diagnosis of something, it’s not always a positive thing, but at least you know you’re not crazy,” Gates says. “You make changes and you try to manage the best you can.”
Fibromyalgia is a chronic illness and, while people may have periods with few symptoms, it doesn’t go away. This can make it hard to talk about the illness because no one wants to seem like they’re always complaining. “People lose patience with chronic illnesses,” points out Randi Kreger, an author from Wisconsin. “They’re more attuned to short-term things that get better. They don’t really realize that not everything is curable and that some things just don’t get better.”
When people have fibromyalgia, it’s as if their sensitivity dials are turned up too high. Lights can be too bright, smells can be too strong, and noises can be too loud. These sensitivities can make it hard for them to get out and be an active part of the community.
“I went to a book club that met in a coffee shop,” Randi says. “They were roasting and grinding coffee. The noise was really too much and I asked if we could go to a place where it was just not that noisy.” But the others in the group refused to move. They didn’t find the place particularly noisy and couldn’t relate to Randi’s discomfort.
Most people have memory lapses from time to time. They forget where they put their keys or to show up for a doctor’s appointment. But for those with fibromyalgia, it’s worse. “Fibro fog” makes thinking fuzzy and remembering difficult. It can also make it hard to follow conversations.
The confusing thing about fibromyalgia is that for many people, the pain, fatigue, fibro fog, and other symptoms aren’t always there. One day, they may be able to go on a hike with their children and then out to a movie with a friend, but the next day, they may not be able to get out of bed. Nothing is constant.
Because people with fibromyalgia have both good and bad days, it’s next to impossible to plan ahead. It’s no fun to make plans only to have to cancel them. It’s disappointing, but they can’t know what they’re going to be feeling like a month from now, a week from now, or even a day from now. “I just do the best I can,” Gates says.
There are medicines that are effective for some people’s symptoms. Gilliam experienced a complete turnaround when she and her doctors found the right drug combination for her. “Every day it was like crossing the finish line at the end of a marathon,” she says. There was something new each day that she could do, like carrying her laundry up the stairs, going to the pharmacy alone, and even going back to school to study law. “But this isn’t the standard outcome,” Susanne points out. “It isn’t even a common outcome, but it does happen.”
Unfortunately, the medicines do not help everyone with fibromyalgia and for others, the medicines cause serious side effects, such as depression, weight gain, or dizziness.
Patient listening and helping hands mean a lot to people with fibromyalgia. It can be discouraging to live with a chronic illness, but the understanding of friends and family goes a long way and can make all the difference, perhaps turning a bad day into a good one.
Fibromyalgia is a pain syndrome of chronic widespread musculoskeletal pain and fatigue. Although it is a chronic disease, fibromyalgia is not a progressive disease, meaning it will not usually worsen over time, and taking steps to treat fibromyalgia can help relieve your symptoms. However, it is worth bearing in mind that some external actions like stress or trauma can lead to the conditioning worsening.
Fibromyalgia specifically means pain in the muscles, ligaments, and tendons, generally all the softer, more fibrous tissues in the body. There is a sense, according to most patients, of ‘aching all over, with the related symptoms of a chronic case of flu. Muscles often feel as if they have been pulled or worked too hard and there are instances where muscles may twitch or feel like they’re burning. Cognitive abilities can also be affected with many patients reporting having ‘Brain–fog’, where they find functions such as concentration and memory to be impaired, and unusual tiredness is also a symptom of fibromyalgia.
Although there’s currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with. Treatment tends to be a combination of:
It’s important to find the right healthcare provider to treat your fibromyalgia. Find a doctor who understands fibromyalgia, knows how to treat it, and can help you understand and cope with this condition. As well as your GP you may get a referral to a rheumatologist or pain specialist who has expertise in this condition.
It’s important to find the right healthcare provider to treat your fibromyalgia. Find a doctor who understands fibromyalgia, knows how to treat it, and can help you understand and cope with this condition. As well as your GP you may get a referral to a rheumatologist or pain specialist who has expertise in this condition.
Pain relievers: over-the-counter pain relievers such as paracetamol, ibuprofen or naproxen may be helpful.
Antidepressants: duloxetine (Cymbalta) and milnacipran (Savella) may help ease the pain and fatigue associated with fibromyalgia. Your doctor may prescribe amitriptyline or the muscle relaxant cyclobenzaprine to help promote sleep.
Anti-seizure drugs: medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) was the first drug approved by the Food and Drug Administration to treat fibromyalgia.
In conjunction with medicine, different therapies can help reduce the effect that fibromyalgia has on your life. Talking with a counselor can help strengthen your belief in your abilities and teach you strategies for dealing with stressful situations.
Cognitive behavioral therapy (CBT) is a form of short-term psychological treatment that’s based on the premise that how we feel and behave can influence our thoughts, but also our thoughts can affect how we feel and behave. CBT has been shown to be useful for people whose quality of life suffers because they have a chronic illness, and it specifically has been found to be helpful for people with fibromyalgia. It can improve sleep quality and decrease fatigue, anxiety, and depression. It can also be effective in reducing pain symptoms, Brain fog, and fatigue.
Lifestyle changes
Changes to lifestyle in terms of diet and exercise can have an overall positive effect on your mental health and your lifestyle.
Eat healthy, nutritious foods – pay attention to what you are eating and keep a food diary in order to limit foods that can exacerbate fibromyalgia symptoms.
Exercise regularly – improving your strength, flexibility and stamina can help those who suffer from fibromyalgia.
Manage stress levels – relaxation techniques, such as meditation and deep breathing, and even taking time out to focus on yourself for half an hour every day can help to make you feel better.
Sleep – many people with fibromyalgia don’t get enough sleep, and if they do, many of them don’t feel well-rested. If you are not getting 8 hours of sleep a night regularly speak to your doctor for advice.
There’s a lot that’s not known about fibromyalgia. Doctors aren’t sure what causes it and why it affects certain people instead of others. But experts continue to learn about the disease and who may be more likely to get it. The risk factors fall into five categories: gender, heredity, sleep pattern, weight, and having certain pre-existing conditions. Here are some risk factors identified so far:
It is estimated that 2 to 4 people out of 100 have fibromyalgia. The condition is about seven times more common in women than it is in men. However, men and children can have fibromyalgia, too. Most people with fibromyalgia are diagnosed between the ages of 20 and 50. It is not yet clear why fibromyalgia affects more women than men.
The disease sometimes runs in families, which suggests that genes may play a role. Scientists are getting closer to identifying specific genes that may be associated with fibromyalgia. The family connection may also be a function of common lifestyle and exposure to environmental factors, in addition to genetic factors.
In one study, women who regularly experienced sleep problems were more likely to develop fibromyalgia during the following 10 years. Sleep deprivation is associated with increased inflammation and a decrease in the body’s ability to block pain signals, factors that could contribute to your risk of developing fibromyalgia.
Women who are overweight or obese have a 60 to 70% greater chance of developing fibromyalgia compared with women who are a normal weight. The good news: Exercise can help! Overweight or obese women who exercise two or more hours each week have a 23% lower risk of being diagnosed with painful syndrome.
If you have another health problem that affects your joints, muscles, or bones, such as osteoarthritis, lupus, rheumatoid arthritis, or ankylosing spondylitis (arthritis mainly affecting the spine), you may be more likely to develop fibromyalgia. Work closely with your doctor to manage your condition, and let your doctor know if any new or painful symptoms occur.
Living with fibromyalgia fatigue on a daily basis can really get you down and leave you struggling to find motivation. At times, it feels like there’s no way to keep going, maintain focus, and stay inspired to live positively or to live at all. However, inspiration surrounds us at every turn as these eight quotes remind us.
Keep trying—you have not failed.
“To fall is not to fail. You fail when you don’t try.” – Superchick, “Get Up”
It’s easy to think of yourself as a failure when fibromyalgia has taken so much away from you. But you are not a failure. You prove that every day by continuing to try. This song quoted above is about persistence and is a wonderful anthem for those who struggle with the chronic pain and fatigue of fibromyalgia. Keep trying, persist, and continue to be the success that you are.
Remember that tomorrow is a new day.
“With the new day comes new strength and new thoughts.” – Eleanor Roosevelt
No matter how overwhelming your fibromyalgiasymptoms are today, tomorrow is a new day. Every tomorrow is an opportunity to start over and to have a better day. Allow yourself and your body to rest on bad days, and don’t think about the things you aren’t doing. Just know that if you rest now, you are more likely to have the strength to do things tomorrow.
Just keep swimming.
“When life gets you down, you know what you gotta do? Just keep swimming.” – Dory, Finding Nemo
When fibromyalgia fatigue takes over, it often feels like you are swimming–upstream. Finding Nemo is full of inspirational gems to help you remember why you are here and that although obstacles will get in the way, you don’t give up. You just keep moving forward. Keep swimming even when it feels like you aren’t making any progress. After all, this isn’t a race. If you need a smile and some inspiration on a day when fatigue has taken over, pull out this movie and give it a watch.
Look to your faith for strength.
“Faith is taking the first step even when you don’t see the whole staircase.” – Martin Luther King, Jr
Holding onto your faith could improve your quality of life. Without faith, it’s virtually impossible to get through the dark days that often come with the fatigue and pain of fibromyalgia. Faith can take many forms, from religious belief to faith that a treatment will work, to having faith in your support system and community to be there for you.
“In spite of the ache I’ll rise up And I’ll do it a thousand times again” – Andra Day, “Rise Up”
Fibromyalgia hurts. It leaves you feeling lost and fatigued and like there is no coming back, but you will rise up again. Look how many times you’ve already risen with the new day. If you are ever unsure of whether you can push through another day, just consider how many days you’ve already survived.
Stay focused on your goals.
“I don’t focus on what I’m up against. I focus on my goals and I try to ignore the rest.” – Venus Williams
If you allow yourself to get lost in the pain and fatigue, you will lose sight of all that is important—of your goals, your hopes, and your dreams. Focus on the endgame, on all that you still have in front of you. Strive for your goals and keep working towards them, even if the steps you take towards reaching those goals are small ones.
Play the hand you were dealt.
“It doesn’t matter what has happened to you, it matters what you do with what has happened to you.” – Regina Brett
You are not a victim: You still have control of your life and what comes in front of you. You can’t change the past, you can’t undo chronic illness or regain the time you’ve lost, but you can still choose the life you will live despite the pain and fatigue of fibromyalgia.
Remember that it’s not the end.
“Everything will be okay in the end. If it’s not okay, it’s not the end.” – John Lennon
It’s difficult when you live with the chronic pain and fatigue of fibromyalgia to remember that your life is not over and that there are good things yet to come. But, there is still a great deal of life yet for you to live and many things for you to do. Your plans may have changed, but there is still a plan in place.
Stay Inspired
You have many sources of inspiration that surround you. Look to your family and friends and remember why you are here. Focus on the things that motivate you and keep those front and center on the bad days when fatigue tries to take over.
When you wake up in a fibromyalgiaflare—with that feeling that you can’t move, as if a 500-pound weight has been dropped on you in your sleep—you can’t help but wonder how you can possibly face the day.
On mornings like this, the best thing you can do is limit your activity and rest. Still, even as your body takes the downtime it needs, feelings of guilt or other negative emotions can make days like this even more challenging. However, making a few positive shifts in perspective as you start the day can make a difference in how you end it.
When you wake up in a fibromyalgia flare, you can either get mad and allow negative thoughts and emotions to make you feel worse, or you can accept what is and take steps to change it.
On any journey, you can’t make the correct turns to reach your destination without first understanding and accepting your starting point. When you wake up in a fibromyalgia flare, accept that that is how you are starting the day, then encourage yourself to build your energy as the day goes on. Remind yourself that ending the day with more energy than you started with may require a few changes to your daily routine, then take that first small step toward feeling better.
Your focus should be on self-care from the moment you wake up before you even attempt to get out of bed. Keep a bottle of water by your bed and drink it before you start trying to move. Follow that with some light stretches in bed. Avoid physical exertion that may use your energy and leave you feeling more fatigued. Light stretching should feel good and warm up your muscles without making you more tired.
After you are feeling a little more awake, spend some time meditating to focus your attention for the day. Clear your mind of all the things you had planned for the day, of all things that weigh you down and make you feel stressed. Instead, focus your attention on wellness and feeling energized.
Other ways to practice self-care during a fibromyalgia flare include:
There is nothing as overwhelming as waking up in a fibromyalgia flare only to see a huge to-do list staring at you from your phone. The best thing to do when fatigue takes over is to wipe that list clean. Move everything that’s not essential to another day.
Cleaning the house will wait. If you have children to care for, do what you must, but enlist their help as well. The only task that should take top priority is caring for yourself. This way, you can have more energy to accomplish your tasks later and be better able to take care of others.
Motivate yourself with small tasks you can complete without effort, and commend yourself for what you are able to do. This may be as simple as just getting out of bed and getting something to eat. Take the day slowly, focusing only on one simple task at a time.
Don’t allow your thinking to get stuck in a loop, ruminating on what you should be doing or what you wish you were doing. Those mental gymnastics will only make you feel more stressed and fatigued. Give yourself grace and patience and remember that your illness is frustrating, but it is not your fault. You are taking control of your symptoms by taking care of yourself.
When you spend your time focused on how uncomfortable you are, you will stay uncomfortable. Focus your attention on the outcome you want to achieve—feeling better—and take small steps to achieve your goal.
You can’t control your body. You don’t pick and choose when fibromyalgia flares hit, but you can make choices that will help limit the pain and fatigue. By pausing and practicing mindfulness about the flare and how to fight it, you can end the day feeling better than you started, allowing you to start tomorrow with renewed energy.
I am printing this study because it is pretty basic to the understanding of fibromyalgia. We feel pain when there shouldn’t be a pain. It is interesting, in particular, to look at the areas of the brain that are activated when we do though.
Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction, and cognitive dysfunction. Fibromyalgia pain dysfunction involves increased sensitivity to pain known as hyperalgesia. A recent study published in Arthritis & Rheumatology, a journal of the American College of Rheumatology (ACR) shows that people with fibromyalgia have hypersensitivity even if events are non-painful based on Functional magnetic resonance imaging (fMRI) imaging of the brain.
Brain imaging reveals reduced activation in primary sensory regions and increased activation in sensory integration regions. These responses to a non-painful stimulus may be the cause of problems with tactile, visual, and auditory stimulation. Patients often do report reduced tolerance to environmental and sensory stimuli in addition to the pain.
The small study included 35 women with fibromyalgia and 25 controls. Patients had an average disease duration of seven years and a mean age of 47. Functional magnetic resonance imaging (fMRI) was used to analyze the brain’s response to visual, tactile-motor, and auditory stimulation. Patients reported increased subjective sensitivity or unpleasantness in response to this multisensory stimulation in daily life. The results of the fMRI showed patients had reduced “task-evoked activation in primary/secondary visual and auditory areas and augmented responses in the insula and anterior lingual gyrus. Reduced responses in visual and auditory areas were correlated with subjective sensory hyper-sensitivity and clinical severity measures.” (ACR)
The study concluded there was a strong “attenuation of brain responses to non-painful events in early sensory cortices, accompanied by an amplified response at later stages of sensory integration in the insula,” and these abnormalities are associated with the main FM symptoms suggesting this maybe be linked to the pathology of the syndrome. Dr. Marina López-Solà from the University of Colorado Boulder stated, “Our study provides new evidence that fibromyalgia patients display altered central processing in response to multisensory stimulation, which is linked to core fibromyalgia symptoms and may be part of the disease pathology. The finding of reduced cortical activation in the visual and auditory brain areas that were associated with patient pain complaints may offer novel targets for neurostimulation treatments in fibromyalgia patients.”
When we are talking about the poor cognitive function we have to be precise and not confuse it with just being absentminded but studies have shown there are real cognitive dysfunctions occurring with fibromyalgia. What is the cause of the cognitive dysfunction seen in the syndrome though? Is the brain aging faster? Is it due to depression or anxiety? Or is it correlated to pain or lack of sleep?
There are many areas where people with fibromyalgia can point to there being a problem but not all of them have been specifically studied. There is what is called Fibrofog the term used to refer to poor concentration. Often people have problems with their short-term memory, their long-term memory, and their working memory. They have trouble remembering the names of objects, and people and have problems with facial recognition. When they speak the wrong words come out or they forget what they say in the middle or they cannot comprehend what the other person is saying. When they are writing they use the wrong words, mix up their letters, make odd grammar mistakes and forget how to spell a word altogether. It is the same with numbers; they transpose them and cannot copy them from one page to another without mistakes. They forget how to do simple routine tasks or forget the order to do them. It is scary and confusing when you do not know what is going on with your brain and what is to blame.
There have been more than a few studies looking into the fundamental aspects of cognition to figure out exactly where the cognitive dysfunctions are and how they compare to others of the same age. This helps determine whether the cause is brain aging or if the cause lies elsewhere.
Areas fibromyalgia patients perform lower than age control subjects
Free recall- such as having a list of words to remember at a later time.
Working memory- Working memory is quite important for everyday functionality. It is the ability to take information, hold it in your mind and use it in some mental process.
Vocabulary tests- Often people with fibromyalgia have problems accessing their vocabulary, not that they do not, in fact, have one. A test could ask a subject to come up with a list of words that start with the letter B quickly and accessing that knowledge would be problematic compared to age-controlled subjects.
The ‘Cognitive functioning in fibromyalgia patients’ study published in the journal of Arthritis & Rheumatism compared 23 FM patients with 23 healthy age-matched controls and 22 older control adults. The older control subjects were to compare the cognitive dysfunction reported in FM patients to the natural decline we have seen over time as we age. They measured “speed of information processing, working memory function, free recall, recognition memory, verbal fluency, and vocabulary. We correlated performance on cognitive tasks with FM symptoms, including depression, anxiety, pain, and fatigue. We also determined if memory complaints were correlated with cognitive performance.”
According to the study, the FM patients performed more poorly than their age counterparts on all aspects of the study such as working memory, free recall, recognition memory, verbal fluency, and vocabulary with the sole exception of information processing. The FM patients performed more like the older controls in the study except they had better information processing and poorer vocabulary. It also is suggested within this study that poor cognitive performance was correlated to pain and not depression or anxiety. The fact that “speed of processing was intact in FM patients suggests that the most basic and global information processing ability—how fast we process new information—is not a problem for FM patients. Our findings do indicate that FM patients have more limited working memory and long-term memory than do age-matched controls. The cognitive symptoms described by these patients are likely to be related to difficulties in these domains.”
The intact speed of processing is quite good news if this study can be validated because it is vital to most cognitive functions. The decline in the speed of processing, in fact, might indicate deterioration of cognitive functions, and “Speed decreases that occur with age have been hypothesized to be related to age-related declines in dopamine receptors, decreased brain weight, increased dendritic branching that leads to circuitous cognitive processing, or decreases in a myelin sheath.” However, functionally, on most other indicators, people with FM are operated cognitively twenty years age advanced and even more poorly indicated on vocabulary standards.
Cognitive impairment in fibromyalgia syndrome: The impact of cardiovascular regulation, pain, emotional disorders, and medication:
In the European Journal of Pain, a study was published to look at whether high or low blood pressure could be affecting the cognition of fibromyalgia patients. Indeed some people have speculated the lack of blood flow to certain areas of the brain is responsible for some of these symptoms. The study included 35 FM patients and a control group of 29 healthy people. This study saw the same cognitive impairment patterns seen in the study above.
One finding was that the study suggested that “pain plays an important role in the genesis of the cognitive deficits in FMS. Clinical pain ratings in terms of the number of words used to describe pain were inversely associated with the number of calculations in the FMS sample. Furthermore, when pain ratings were statistically controlled, the group difference in performance was no longer significant. This is in line with our finding that FMS patients using an analgesic medication, particularly opiates, performed better than patients not using these drugs. These results corroborate numerous studies supporting the interfering effects of pain on cognition. Pain is an attention-demanding condition that activates brain areas associated with cognitive processing such as the cingulate and the prefrontal cortex. One may thus speculate that central nociceptive processing detracts from cognition by requiring enhanced neural resources in the respective brain areas.”
In the controlgroup, blood pressure was a factor in cognitive functioning however in the FM group “the inverse association between BP and performance was absent, which may indicate that the affected patients are protected against the negative effects of high BP on cognition. Taking the aforementioned mechanism into account, it may be hypothesized that the CNS inhibition due to baroreceptor stimulation is reduced or absent in FMS. This is in accordance with the observation that the frequently described reduction in pain experience following experimental baroreceptor stimulation did not occur in patients with chronic pain disorders. It has furthermore been shown that pain dampening during experimental baroreceptor stimulation only occurs in individuals with normal to high BP, whereas in those with low BP this procedure may even increase pain.”
He likewise determined anxiety and depression did not correlate to the cognitive concerns. However, this study shows that blood pressure does not look like it is a factor and that level of pain might very well be an important factor.
Clearly, there is a great deal of cognitive dysfunction with fibromyalgia sufferers such that a person is cognitively functioning twenty years older than they are. However many studies have validated that intact speed of processing is not affected which suggests the brain is not in the process of accelerated aging and that is a key difference. Another important thing to note is that these two studies and more have shown that anxiety and depression are not factors in fibromyalgia cognitive issues. The last study suggests that perhaps it is the level of pain experienced that affects cognitive abilities and certainly that does seem like an area that needs to be explored further. However, we are left wanting are we not? There have been other studies showing that pain is an indicator but perhaps because the same area of the brain is activated and it is a distraction. We are left with knowing there are these cognitive impairments but not the specific cause for them or what is going on in the brain with enough clarity to do anything specific about it. Therefore while we have a few options for pain treatment there is really nothing available to assist a person with some very important cognitive concerns. In fact, side effects can make cause mental grogginess anyway. Discovering the relationship between pain and cognition in the fibromyalgia brain is a very important area to delve into. It hardly seems probable the cognitive problems are associated with a cause separate from what we know causes pain to be hyperintense. Although it is rather hard to argue with the theory that pain is distracting, perhaps inherently so, due to its function to grab our attention and focus.
Until then all we can do to help with our cognition is stick to regulated routines, keep regular sleep habits and keep regular eating habits. Routines establish habits that enable us to remember things easier so we are less stressed. We want to keep our stress levels as low as possible. Sleep habits are difficult to maintain but irregular habits and changes cause disruptions that we physically do not handle well and can cause greater stress and fatigue. Regular eating habits of eating throughout the day, and snacking every three hours, will keep our energy levels higher and keep the fibrofog at bay. Using reminders and To-do lists also helps in the organization. If during the day you feel your concentration waning get up and have a stroll about the office or a walk around the block. The break will energize you and help refocus some of that mental energy. Sometimes changing from one task to another can also get your brain going. Distraction seems to be a component of cognitive issues. Pain is one major distraction. Perhaps along with our over-sensitivity to the environment and stimulus to external distractions. Therefore our ability to pace ourselves and take breaks when needed can certainly help if we are overly strained. Another key is to avoid multi-tasking because it naturally segments your attention into different areas and it is easy for interruptions or concentration issues to make you suddenly lose your focus mid-task. Try not to overstimulate your system with loud noises and bright lights; the fewer distractions from your environment the better. There is also a little something to exercise your brain with puzzles or brain games. Finally, double-check with your doctor to ensure the medication is not having a side effect that may be making these symptoms worse if they are troubling you.
Anyone who lives with fibromyalgia has struggled to try to explain the chronic pain and fatigue they experience to their friends and loved ones, and even to strangers.
Explaining fibromyalgia is no easy task. Sometimes just putting into words what you feel is difficult enough, as fibromyalgia often takes your words away. But, even when you can find the words, trying to explain something so foreign and seemingly abstract to someone who has never (and hopefully will never) experience it can be not only difficult but stressful. To explain fibromyalgia fatigue, you have to first understand what fibromyalgia is.
Fibromyalgia is a debilitating disorder that is estimated to affect more than 10 million people in the United States. Fibromyalgia is a complex disorder in that it is a collection of chronic symptoms with no specific underlying pathology. The two key fibromyalgia symptoms are fatigue and chronic pain. People with fibromyalgia may also experience digestive issues, migraines, depression, and problems with sleep.
Knowing the basics doesn’t make understanding the illness any easier, especially when it comes to the fatigue associated with fibromyalgia. Fibromyalgia fatigue is almost impossible to imagine because it is unlike any other sort of fatigue you (or the person you’re describing it to) may have experienced.
A few short descriptions people who live with fibromyalgia fatigue commonly use to describe the fatigue of fibromyalgia includes:
“It feels like you’re drowning, but you keep fighting to stay above water.”
“It feels like you are walking through quicksand.”
“It feels like you are carrying around a 100-pound backpack.”
“It feels like you’ve been awake for a week, and no amount of sleep will allow you to catch up.”
These descriptions are quite visual, but they are not situations most people have experienced, so they still require a bit of imagination. That’s the problem with trying to describe fibromyalgia fatigue. No matter how good you are at describing it, you are relying on the other person to use their imagination to understand it.
The key when trying to explain fibromyalgia fatigue to someone who is healthy is to find something they can relate to and then take it a step (or five) further. This way, they may better understand that what you are dealing with is far beyond the feeling they can comprehend.
For example, many people have had the bad flu or mononucleosis (mono) in their life. Ask the person you are talking to if they’ve had one of these, then explain to them that fibromyalgia fatigue feels as if you have the flu or mono, but it’s never gone away and never will. If your friend travels a lot, you might describe it as a jet lag that never goes away.
But, what if that’s not enough? What if the person you are talking to has never had the flu, mono, or jet lag? Then how can you relate the level of complete exhaustion you feel?
Another way to explain fibromyalgia fatigue is by using the analogy of a mobile phone battery, one that is never completely charged. No matter how long you leave it plugged in (how long a person with fibromyalgia sleeps), it never reaches a full charge. Then once you unplug the phone (wake up) and start using different apps (attempting to do daily activities), each app uses up more battery. Some apps use more battery power than others and before long that battery is completely drained again.
The key to explaining what fibromyalgia fatigue feels like is to make clear that what you are experiencing is far beyond just being tired. Everyone gets tired sometimes, and a good night’s rest usually fixes the problem. Fibromyalgia is different. The fatigue that comes with fibromyalgia is pure exhaustion that doesn’t go away, no matter how much sleep you get. Then, to make matters worse, when it’s time to sleep you can’t. This lack of sleep and exhaustion affects your ability to think, reason, to perform basic tasks.
In the end, all you can do is try to explain and hope the person you’re talking to understands what you’re going through. Some people are more empathetic and will make more of an effort to understand. Or, even if they can’t imagine how you feel, they care about you and will offer whatever support they can.
Fibromyalgia is a debilitating condition that is challenging enough to live with, without the worry of how to explain what you’re feeling to others who may never understand. Despite how difficult it can be to explain fibromyalgia, there are people around you who want to learn, and you should focus your limited energy on maintaining those relationships. Surround yourself with the caring, positive people in your circle to create a much-needed support group that will help you cope with the bad days.
Fibromyalgia comes with three major types of pain sensations.
Hyperalgesia: this is our major pain as part of the syndrome itself. It is an abnormal sensitivity to pain. The crux of our pain dysfunction.
Allodynia: With allodynia, there is a triggered pain response from stimuli that do not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation and can be much more intense. Clothes hurt. Touch hurts. And it burns like hell. Often tramadol and topical Lidocaine are recommended.
It can happen anywhere. I have had it all down my back. On my thighs. And my arms. Right now I have a brutal patch that is insanely intense on my right upper back below the shoulder.
Paresthesia: Causes the ‘pins and needles sensations, an itch, tingling, prickling, and numbness. And can cause pain.
I once had an insane bout of this that lasted a couple of years. Tingling and numbness below the waist. Disturbed my doctor who thought it could be any number of back issues and led to three MRIs. But, nope, FM. Not saying it wasn’t bad with the numbness and intense tingling issues given the location. It got worse over time in a year and took about two years to dissipate. Well, in the sense it isn’t as bad as it was, but still mildly there.
Does your skin burn like it has a sunburn on it? Does contact with your clothes aggravate you beyond belief? Does even the lightest touch make you want to jump out of your skin? That sounds like Allodynia.
Allodynia is a type of pain associated with Fibromyalgia and is considered a rare type of pain. With allodynia, there is a triggered pain response from stimuli that do not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation. Clothes will hurt against the skin. Even the slightest of breezes will feel painful against the heightened and tender skin. There is no exact cause for allodynia, but it is considered to be from central sensitization where there is an increase of excitability in the neurons of the central nervous system. As such, a harmless stimulus – like a light touch – activates the nociceptors which are usually activated only in response to intense stimulus causing damage to the tissue and thus causing pain where there should be none.
The pain caused by touch is called tactile allodynia; when caused by movement, it is mechanical allodynia. Thermal allodynia is related to temperature. Other pain conditions can create this response such as neuropathy, postherpetic neuralgia, and migraines. In fact, with migraines, allodynia is common in the scalp, although it can occur anywhere.
Allodynia can range from mild to severe and can be all over the body or only in certain areas. It can be continuous or come and go. My personal experience of allodynia has varied. I have had mild bouts of it in precise locations similar to a mild sunburn. In these cases, it is just a mild irritation – noticeable, but easy to ignore. Then I had severe bouts in large patches of skin, like on my back and thighs, that were aggressive, and hard to have clothes touching me. I even found it hard to just handle being in my skin, with showers being immensely painful experiences. The movement itself is an ordeal. Touch is out of the question. However, I have not had it continuously.
For me, allodynia seems to be more random, rather than a flare sort of thing. When it strikes, it lasts for weeks and then simply fades. During an episode, tramadol is the only thing that has ever managed the pain, although not very well, instead only slightly dulling the edges of the pain. With migraines, I regularly experience allodynia on the scalp, which is a regular occurrence. You know, that sensation you have a migraine so bad your ‘hair hurts’. However, during extreme weather, I also get thermal allodynia that can cause a great deal of all-over sensitivity and makes it difficult to be out on hot days and very difficult to weather the Canadian winters. Even in mild winter weather, I have to bundle up, especially my hands, as they will immediately burn from the cold and then hurt all day from the exposure. With thermal allodynia, I find when my hands get flush and hot that it helps to run them under warm or cold water. Taking cooling showers also brings the sensation down for a little while.
Clothing is a common problem with tactile allodynia. There can be a burning or constricting feeling from waistbands, even if they are not tight. Bra straps can create a lot of discomforts. Any clothing closely pressed to the body can seem to be putting ‘pressure’ on the burning sensation, including tags and stitching. Generally, fabric choice can be a real issue as some will seem quite aggressive against the tender skin, but when it is severe, all fabrics will be equally aggravating.
This goes without saying, but dress in loose clothing with little contact with the skin.
Heat can aggravate allodynia, especially thermal allodynia. If you find this to be the case, stick to the shade or wear a hat and/or sunglasses when outside. Consider bringing a cooling product with you like a cooling pad for travel (instant ice bags you squeeze to trigger a chemical reaction and they become cold instantly). Sometimes, even consider heat avoidance. The same goes for really frigid conditions. I have trouble with thermal allodynia in the deep winter months and find that I have to really protect my hands as I have a lot of difficulty with temperatures once they drop.
It’s best to avoid hot showers and baths; keep the water warm or cool. When allodynia is severe, showers can be particularly painful, and I find baths are a better solution.
Strong winds will also cause pain with this condition because the skin is extremely sensitive when hit by the wind. It brings a whole new meaning to a biting and stinging wind.
Capsaicin has been shown to help with allodynia; however, it can cause a burning sensation in itself so use with caution. Capsaicin is the only topical cream that has ever provided relief for me for FM pain, but I have never tried it for the allodynia. Many people also reference Tiger Balm.
Generally, massage therapy may be helpful for FM pain, but it can aggravate allodynia. If you see a massage therapist, it’s best to have a conversation with them about your skin sensitivity and ask them what they can do about it. I recommend the same approach to chiropractors.
There are mediations that some people find helpful for allodynia:
