Obviously trying to do anything with a migraine is stupid, necessary, but stupid. However, struggling to get through the day with that sort of pain makes me rather forget how painful the fibromyalgia pain can be. Today was an extra special pain day where I got both. The migraine was consistent but not bad enough to seriously disrupt my thinking. Some would find that statement hard to believe knowing what a migraine is… but you get used to what you have to get used to. Such is the life, eh? Put that on your resume…’ superhuman pain tolerance’, ‘won’t call in sick for severe pain or run of the mill illness, only for mind-blowing scary-ass nasty pain’… but don’t mention how often that occurs or you’ll never land a job!
The FMS pain had to be triggered by the storm we had, but who knows? Sometimes a flare is just a flare, with no reason to be named for it. It started mid-morning with an ache in my knees and a sort of stiffness in my legs. Like zombified. Call me lurch. That sort of level of pain is normal. FMS pain shifts around to different muscles and ranges from mild to moderate on a daily bases, excluding days when I do my intense workout (12 minutes of yoga). It got significantly worse until my knees and ankles were in severe pain and my legs felt like the current running between them. Now it is at that level where it is hard to walk and it damn well hurts enough without moving. Seriously, it is insane how intensely FMS pain can hit for no reason. I get that if I walk too far, do exercise, or whatnot I can expect there to be consequences, but man does it suck when it just comes out of the blue like that. There is just something about spring and early summer that my body loathes and so I get more FMS flares and migraines as a result. Seriously is there somewhere in the world where the temperate is always moderate with lows are -10 and highs are +20 and it is always cloudy? Let me know. I was to move there.
But sometimes I wonder about the normal baseline FMS pain. I think to myself I live a sedentary lifestyle and weak muscles will hurt. So maybe some level of pain is just normal. That is until I have a chat with someone and realize, nope, so not normal. A co-worker of mine is on this diet which is doing wonders for her and she routinely exercises as well. I joke about my yoga efforts and my pathetic limits and muscle pain. She said she had bad muscle pain after a workout (of good cardio by the way, as if I could do that!) but that she was told to stretch before and after the work out which eliminated that pain. I did not say anything about my FMS situation because why bother when it would take too long to explain and make me sound more of a cripple than my chronic migraines do.
But it made me think about what I do and the level of pain. I know FMS makes it so my body has a low threshold to feel pain, with more intensity and for longer durations… but what she is able to do (and seriously I am impressed with her willpower and determination) is nothing compared to what I can do and I really feel the consequences. But exercise is something I know will cause pain and I do a minimal amount when I can just because I think I should. Not enough that I can shed the weight I gained. Not enough to give me any more muscle endurance. So pain is a barrier to creating a routine in that aspect, but I don’t let it be a barrier to stop me from trying.
Nonetheless, realizing how crippled I am today, body pain is just as much of a barrier as migraine pain but in a different way. Body pain when it gets severe limits my mobility, and my ability to be comfortable, and sleep and is also a distraction. While I can push through work, and mental stuff, with a nasty ass migraine I cannot force my body to do anything when in an FMS flare. The pain just explodes in intensity when I do. Of course, this is why I knew at a very young age I was destined for a desk job. I have had flares that made a ten-minute walk to school take a very long forty minutes. I vividly remember most of those worst ones. I do not remember much about the situation, all that is vague and hazy, but I remember the single-mindedness of needing to get through what obstacle was directly in front of me so that I could get home. I remember that intense focus of ‘just a little farther. Just a little longer Then there were times when the pain gets so insane your body simply says nope, no further, and gives out. That happened sometimes when I had summer jobs where I stood for eight hours, the moment I would sit down I was screwed because my legs would not let me stand after. This is also by the way why I prefer not to hold babies… I’m just saying, my arms can’t hold much weight either before they tremble, ache and then just give out. And dropping babies is never a good idea. So ‘just muscle pain’ does not quite define how nasty FMS can be. In some ways it might be less invisible than migraine pain because while I can mask both quite well when FMS gets to the crippling point I cannot walk well at all, just shuffle very slowly (I need a scooter or an old lady walker). Can’t hide that and damned hard to find a reason for those not in the know.
The phrase “tender points” isn’t something you hear every day. But if you have fibromyalgia, you may be familiar with those words. In fact, your doctor may have used tender points to diagnose you.
In 1990, the American College of Rheumatology (ACR) introduced criteria for diagnosing people with fibromyalgia. Part of the criteria included 18 possible tender points throughout the body. Tender points are small spots located around your neck, shoulders, chest, hips, knees, and elbows.
To be diagnosed with fibromyalgia, patients had to experience pain in at least 11 of those 18 sites when their doctor pressed firmly on them. In addition to tender points, you had to have pain in all four quadrants of your body (left side; right side, above the waist; below the waist) lasting longer than three months.
A lot has changed since the original ACR criteria for diagnosis were released. A 2010 study found that approximately 25% of people diagnosed with fibromyalgia didn’t satisfy the ACR’s criteria for having the disease, even though their doctors believed they had fibromyalgia based on their other symptoms.
Tender points posed a significant issue for doctors and patients alike. For example, if a person experiences improvement and no longer has as many tender points, does that mean he or she no longer has fibromyalgia, even if the person still has other symptoms like widespread pain? The pain is often described as a dull, constant pain in the muscles.
In 2010, the ACR updated its criteria for diagnosing people with fibromyalgia. Among several changes, it removed tender points from the criteria. Today, diagnosis relies more on patients’ self-reported symptoms than a doctor’s physical examination of the tender points.
In addition to pain, doctors consider symptoms that weren’t included in the original criteria, such as fatigue, sleep problems, and cognitive issues like trouble concentrating. They also use a tool called the symptom severity scale. The scale acknowledges that with a chronic pain condition like fibromyalgia, your symptoms may change with time. Pain can be more or less severe under different circumstances, such as how tired you are, your stress level, and your level of physical activity.
As a result, making a diagnosis no longer relies on a fixed set of criteria, such as tender points, and gives more weight to your personal experience with the condition. The symptoms of fibromyalgia resemble other chronic pain conditions, such as rheumatoid arthritis. For this reason, doctors may use specific blood tests and other evaluations to rule out these conditions before making a fibromyalgia diagnosis.
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.
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.
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:
New research indicates that a disruption of brain signals for reward and punishment contributes to increased pain sensitivity, known as hyperalgesia, in fibromyalgia patients. Results published in Arthritis & Rheumatism, a journal of the American College of Rheumatology, suggest that this altered brain processing might contribute to widespread pain and lack of response to opioid therapy in patients with fibromyalgia.
Fibromyalgia is a chronic, musculoskeletal syndrome characterized by widespread joint and muscle pain along with other symptoms such as fatigue, sleep disturbances, and cognitive difficulty. Previous research estimates that fibromyalgia affects 3.4% of women and 0.5% of men in the U.S. Prevalence of this pain disorder increases with age, affecting more than 7% of women between 60 and 79 years of age.
“In patients with fibromyalgia there is an alteration in the central nervous system pain processing and a poor response to topical pain treatments, trigger point injections, and opioids,” said lead author Dr. Marco Loggia from Massachusetts General Hospital and Harvard Medical School in Boston. “Our study examines the disruption of brain function involved in the individual experience of pain anticipation and pain relief.”
For the present study, the research team enrolled 31 patients with fibromyalgia and 14 healthy controls. Functional magnetic resonance imaging (MRI) and cuff pressure pain stimuli on the leg were performed on all subjects. During the MRI, participants received visual cues alerting them of impending pain onset (pain anticipation) and pain offset (relief anticipation).
Results show that during pain anticipation and relief, fibromyalgia patients displayed less robust responses within brain regions involved in sensory, affective, cognitive, and pain regulating processes. The ventral tegmental area (VTA) — a group of neurons in the center of the brain involved in the processing of reward and punishment — displayed activation during pain anticipation and stimulation, but deactivation during anticipation of relief in healthy controls. In contrast, VTA responses during periods of pain, and anticipation of pain and relief, in fibromyalgia patients were significantly reduced or inhibited.
Dr. Loggia concludes, “Our findings suggest that fibromyalgia patients exhibit altered brain responses to punishing and rewarding events, such as expectancy of pain and relief of pain. These observations may contribute to explaining the heightened sensitivity to pain, as well as the lack of effectiveness of pain medications such as opioids, observed in these patients. Future studies should further investigate the neurochemical basis underlying these dysfunctions.”
We are all familiar with fibrofog when it comes to fibromyalgia but fibrofog is really just part of the symptoms associated with the cognitive dysfunction of FM.
An article published online on July 21 in Arthritis Care and Research has recently looked more in-depth into the symptoms of cognitive dysfunction and where it affects FM. What they looked at were four components of Executive Function:
Shifting; the ability to shift our attention between tasks.
Inhibition; the ability to suppress routine responses.
Updating; replacing outdated information with current relevant information.
Access; the ability to access long-term memories which are needed for verbal fluency.
The study had 30 participants between the ages of 18 and 70 with a control group of 30 women matching in age group. All participants were involved in 90 minutes of testing that measured pain, anxiety, depression, executive function, memory, and working memory. Self-evaluation of cognitive impairment was also measured using the Functional Assessment of Cancer Therapy-Cognition Scale (FACT-Cog 2), which can be used with people that do not have cancer because it does not contain any specific references to cancer.
The patients with FM reported a mean pain intensity level of 6.68 (SD, 2.59) on a visual analog scale, suggestive of moderate pain. On the Hospital Anxiety and Depression Scale, patients with FM had a mean total score of 18.2 (SD, 5.8), indicating severe anxiety and depression, compared with a mean of 11.2 (SD, 5.7), or moderate anxiety and depression, among the control participants (P < .0001). Scores of 8 or more suggest clinically relevant levels of anxiety or depression.
On the Digit Scan-Backward test, a measure of updating and working memory, the patients with FM had a mean score of 3.8 (SD, 1.1) compared with a mean of 4.4 (SD, 0.9) for the control group (P = .031). Patients with FM also scored lower on the delayed recall portion of the Rey Auditory Verbal Learning Test, with a mean score of 9.9 (SD, 3.6) compared with a mean of 11.7 (SD, 2.4; P = .033), suggesting impairments in episodic memory.
Attentional shifting was measured using the A and B portions of the Trail Making Test (TMT). There was no significant difference between groups on scores for the TMT-A, in which participants connect numbers ascending from 1 to 25. However, on the TMT-B, which requires the test takers to alternate between numbers and letters, FM patients recorded a mean score of 97.3 (SD, 39.9) compared with a mean of 75.7 for the HC group (SD, 28.6; P = .020).
Working memory was measured with the 1-Back test, in which subjects look at colored blocks on a screen for a given period of time and must then press a keyboard to indicate what they have seen. Reaction time is measured in milliseconds, along with accuracy. There was no difference in accuracy between the groups, but the patients with FM had significantly longer reaction times (mean, 891.2 msec; SD, 185.0) compared with the HC group (mean, 722.4 msec; SD, 131.9; P < .0001).
I can see the delayed reaction time in working memory. I have felt it. It is like a glitch and then your brain kicks in. But I would have to say there is some issue with working memory overall… in the sense our concentration and focus issues impair it. Try holding a thought in your head… like doing simple math… carry the one… and then poof you forget the one exists and then lose where you were and have to start all over again. So math-wise, by hand is better or obviously by the calculator. I’m just saying that I feel other than a delay in working memory… it is actually faulty as well.
Patients with FM also showed significantly poorer judgment on all measures of self-perception of cognitive dysfunction, including mental acuity (P = .002 compared with HC participants), deficits noticed by other people (P = .001), verbal and nonverbal memory, verbal fluency, functional interference, and effect on the quality of life (P < .0001 for each). (Medscape)
Yes, obviously verbal and nonverbal memory and verbal fluency are influenced a great deal. We talk about our language dysfunction all the time. Talking wise, and in writing, things do not come out… right. I have noticed doing a crossword game that I am just as good as I have always been but again there is a notable delay in finding the word in my brain. So I know it, pause, think, pause, think, pause, then it kicks in and it comes out. So obviously speaking where you just use words automatically without constantly thinking… they come out ass-backward or with similar-sounding words or the wrong tense.
Overall, the more serve the patient’s FM (measured by the Fibromyalgia Impact Scale) the greater the self-perception of cognitive impairments (such as attention and concentration or fibrofog). The sample size though was a limitation of this study. “In addition, the authors did not control for pharmacological treatment when enrolling the participants, and they point out that certain medications can have a significant effect on cognitive function. However, they write, “this limitation does not invalidate the main result of the study, which concerns the degree of accordance between subjective and objective reports.”
And that is a severe limitation of this study. We can be on no meds or multiple medications. And those medications can affect concentration, memory, and fatigue levels. I think that could rather skew the results a substantial amount given I have felt what certain meds have done cognitively to me.
“[O]ur data indicate that the long-term and working memory, shifting of attention and updating executive functions of FM patients are impaired compared to [HC]s,” the authors conclude. “These impairments are reflected in subjective complaints independently of depressive symptoms.” They recommend the inclusion of a self-report questionnaire to assess cognitive impairment in the initial clinical evaluation of patients with fibromyalgia.
These studies are interesting but I would be interested in a meta-analysis because it seems there is Some consistency in them but also a lot of difference and I would be interested in where there is a consensus.
