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 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:
The pain arching through me right now is difficult to describe, to be honest. It is a deep, bone-deep, throbbing ache that is at around an 8 on the pain scale. It is extremely distracting. It is gnawing. Grating. And that is when I am not moving. Moving is another story altogether.
In this particular case, it is from weather changes. We have been having hot weather and flash thunderstorms so the pain, as a result, has been pretty intense. Migraines, as you might expect, following suit.
It isn’t only the specific keyed-up areas of pain though. It is the body aches as well. Feeling just run down. And the extra bonus of fatigue. Not your normal fatigue… more bonus fatigue. Like the extra bonus pain. A flare-up is just FM Plus.
I am currently on tramadol slow release for my actual treatment, so I have nothing for a flare-up per se. I have to work tomorrow so rest is out of the question. As is stress avoidance. So I’ll be waiting it out. The approach I most often take, unfortunately.
For me, most flares come with overdoing it. I have limits, I just sometimes am not positive where they are or ignore them. Or, worse, the limit changes. One day I can walk for an hour with no consequences. The next day 15 minutes causes extreme pain and that pain increases exponentially the more I walk. So I engage in an activity, in moderation, expecting it to be fine and it is So not fine. FM can be unpredictable like that.
Poor sleep is another common one for me. But it is unpredictable. Often it is more than one day of poor sleep that flares me. One day? That is par the course. And yes, it causes aches. But not flare-up pains and aches. Not FM Plus. But a few days of severely deprived sleep and I will flare big time. Even laying in bed to continue trying to sleep is too painful then.
Taking breaks– since they tend to occur during high stress we tend to not engage in self-care. If we just push through, we pay for it. We should try to help others, at work for extended deadlines and reschedule the things we can. Try to reduce the stress factors we Can. Take breaks during the day. Take short naps.
They say ‘no’ tip– In times of Flares, it is really important to conserve your time and energy reserves. No, you can’t take on extra work. No, you can’t do that favor for a friend or the school. No, you can’t babysit at this time. You don’t need to use an excuse, because you don’t need to validate your illness, just a polite not at this time. You just cannot take on any more at this specific time.
Sleep– Sleep is always a factor for us. And adequate sleep is more important during a flare. Keep to a regular sleep cycle. Get 8 or 9 hours. Only take short naps during the day, so as to not disrupt nighttime sleep.
Relaxation– Take time for mindful meditation, relaxation breathing, or biofeedback… whatever works for you. As well as any pain distraction methods you use; like soothing music, reading, or binging on Netflix.
Pacing– We can keep doing activities, at a slower pace, which has been found to be better than no activities at all. But we need to know our limits. Slow and steady. We can incorporate some very gentle stretching, walking, or light yoga. If you have an exercise routine already, consider decreasing intensity during a flare.
Pain management– Use your medications following the schedule you use to manage pain. If they are not sufficient ask your doctor about breakthrough medications. Use alternative treatments you might find effective; acupuncture, massage therapy, biofeedback, and other therapies to help with pain management.
Support– Flares are an emotionally heightened time and can be difficult to deal with and sometimes talking about it helps. To utilize any support groups you belong to. Either online, in real life, or with the people in your support system like friends and family.
Baths– I always recommend a nice soothing Epsom salt bath to ease some muscle pain.
Generally, you want to engage in your Self-care. You don’t want to stop your routines, but be gentle and careful. Self-Care is vital at this time. Take things more slowly and methodically. Be gentle with yourself. Pace yourself.
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.
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. People with Fibromyalgia can experience what is referred to as ‘flares’ where their symptoms get more severe.
A survey in Pain Medicine recently looked into the nature of flares to ask people with Fibromyalgia the nature of these flares. They asked open-ended questions to determine how they perceived the fibromyalgia flares, their triggers of them, and possible alleviating factors for them. They were asked how these flare-ups are different from their baseline symptoms and how they cope with them. There were 44 participants in the survey.
• medical treatments (medications) • rest • activity and stress avoidance • waiting it out
The study concluded that the periods of “symptom exacerbation (i.e., flares) are commonly experienced by patients with fibromyalgia, and symptoms of flares can be differentiated from everyday or typical symptoms of fibromyalgia. Our study is the first of its kind to qualitatively explore the characteristics, causes, and management strategies of fibromyalgia flares. Future studies are needed to quantitatively characterize fibromyalgia flares and evaluate the mechanisms of flares.
It would indeed be interesting to see further analysis of the flare phenomena in the future. Particularly the mechanism of it. What is going on such that these flares are so suddenly and abruptly different from the baseline experience? Clearly, it is an event that is triggered. However, discovering what is going on and what a flare could perhaps further what is going on with the entire fibromyalgia syndrome itself.
• Taking a break– flares tend to occur at times of high stress when it is not exactly good timing for a break. However, no matter what is going on if we push through the pain like we are inclined to do often, we will pay for it. Instead, we should try to ask for help from others, ask for extended deadlines, reschedule things if possible and take care of the flare first. Try and reduce what is causing you stress and get that as low as possible. Also, take breaks during the day to help. • The say ‘No’ tip- is very valid again.At this time of a flare, it is even more important to protect your time and reserves. No, you can’t take on extra work. No, you can’t do that favor for a friend or your kid’s school. No, you can’t babysit for a friend. You don’t have to have an excuse, just a polite refusal. You just cannot take on extra things at this time. • Sleep– Sleep is always a factor in Fibromyalgia symptoms. This means that adequate quality sleep is even more important during a flare-up. Getting eight or more hours of sleep is important. Keep to a regular sleep schedule. Don’t nap too much during the day such that it disrupts your sleep at night, but you can have a short nap during the day. • Relaxation- Doing biofeedback, deep breathing, meditation and self-hypnosis can help take your mind off the pain. As well as distraction methods you may already use, like soothing music or a good book. • Pacing– We can keep doing activities, at a slower pace, which has been found to be better than not doing activities at all. However, we need to know our limits. Slow and steady. We can incorporate some gentle exercises such as gentle stretching, walking, and some light yoga. However, if you have an exercise routine consider decreasing the intensity. • Pain management– Use your medications following the schedule you use to manage the pain. If they are not sufficient ask your doctor about them. Use any alternative treatments you might find effective. Acupuncture, chiropractic care, massage therapy, biofeedback, and other therapies may be beneficial for your pain management • Support– It can be difficult to deal with so sometimes talking about it can help. To utilize the support group you have. Either an online support group, a real-life one, or the people in your support system like family and friend • Baths– some people find it relaxing to take baths in Epsom salts.
