In 2003 I started to have pain in the muscles of my legs. A doctor’s visit found nothing wrong. As time went on I started to feel pain in other muscles. Down my back, back of my arms, calves, and back of my neck. OTC pain relievers did nothing. Trip to the doctor got narcotics.
They did nothing. Tried muscle relaxers with no results. The pain kept getting steadily worse. The doctor finally me told there was nothing he could do for me. I asked if there might be a doctor anywhere that could help. He said he didn’t think so but he put me in the hospital for some tests.
After 5 days my pain lessened somewhat. He didn’t find anything wrong so I went back to work. Within 1 day my pain level was so high I had to leave work. Called my doctor in tears and begged for help. After saying he didn’t think my pain level was that bad, he recommended that I see a Rheumatologist.
That doctor asked if I had trouble sleeping. I told him I dreaded going to bed as I knew I would wake up feeling worse than when I went to sleep. I told him it felt like I had been run over by a train. He asked if I had any places that felt sore when they were touched. Yes, two on my shoulder.
He started running his hands down my back and pressing different spots. Each spot was extremely painful. He found 16 different spots that were painful. After asking me several more questions he asked if I had ever heard of fibromyalgia.
No, l said. He explained the symptoms to me and some were things I was going through but didn’t think were related to my pain. I was in tears when I left his office. I knew I could not live the rest of my life in severe pain. He offered no medication or treatment plan except to say try to stay as comfortable as possible.
I headed to the internet. At that time very little was known about fibromyalgia. The word means muscle pain. I lived 5 years in constant pain until I came across a pain reliever that gave me some relief. I went to my regular doctor because I was getting very depressed.
When I started taking the antidepressant, I found more relief. I have been on these two medications for 17 years and on most days my pain level is around 2 or 3. In winter I have more trouble and the rainy weather isn’t so good.
I am of the opinion that they still don’t know what it is or what causes it. The medications they advertise on TV have never worked for me or else had too many side effects. I can tell you if you find a medication or combination that works for you stay with it.
The mix of non-narcotic pain relievers and antidepressants is what works for me consistently. I have tried everything that is recommended for fibro and these are the only two that works for me.
Anyone that has fibromyalgia has my sympathy. Good luck. I found out I can stand a lot more pain than I thought even though I am more pain-sensitive.
Fibromyalgia itself is still very much a mystery. Although doctors now have more information, and many doctors now accept it as a “real” issue, we still have a LOT to learn about fibro and chronic pain conditions in general. I personally agree with doctors who believe that fibro is not a condition in and of itself, but the result of other traumas or illnesses.
I was diagnosed with fibro in 2002 when I was in my early 30s, so I’ve had this condition for a good while. I actually went to a young doctor at LSU-S medical center who was a researcher in the field at that time, and to a very good rheumatologist. These and later doctors have certainly helped my condition improve.
I also try to eat healthily (that is, not heavily processed) foods, and MSG drives me nuts, so I avoid it like the plague, but fibro still impacts my life far more than many people would suspect. And, yes, I’ve tried some of the much-advertised medicines. They work, but they also made me gain a lot of weight, which makes the fibro even worse. I prefer to use OTC pain relievers and natural remedies.
Everyone with fibro has slightly different symptoms, and symptoms can vary widely day to day.The pain and tender points are common to everyone, but symptoms vary WIDELY, as does the level of disability. Symptoms also very widely from day to day. Some days I may be doing GREAT and I’ll be outside trimming goats’ hooves or even pounding t-posts. Another day I may not be able to get off the couch. The unpredictability is maddening. I love to be busy; I love to be outside doing things in my garden, but sometimes I can hardly drag myself to the kitchen. Just because yesterday I could do something doesn’t mean that I can do the same thing today.
I hurt all the time, all over.Most of the time, thanks be to God, it’s only just above consciousness-level, but it’s there. I usually describe it as the ache you have when you have a slight fever. This all-over-ache is there when I sit down, when I stand up, when I walk, and when I lie down. It never goes away completely, although I can block it out SOMETIMES if I can keep busy. Other people have HORRIFIC pain, much worse than mine.
FATIGUE for me as just as bad or worse than the pain. (I may have CFS as well as fibro.) I’ve had doctors quip, “Well, I’m tired all the time, too.” We’re not talking about “tired,” here. We’re talking about feeling like you were just unplugged, like you have a bad case of the flu, or like you have on-the-verge-of-tears exhaustion. If you’ve never felt it, you can’t completely comprehend it. Again, the CLOSEST I can compare it to is a BAD case of the flu, where you are so weak and tired you can barely get up, if you can even do that. Your arms and legs feel like they weigh 100 lbs. each. Let me put this in real terms: there are times when I cannot get to the kitchen to make something to eat or when I’m so tired that I cannot go to the doctor’s office even if I’m sick. Getting dressed can be a major undertaking. At the worst times, I even slur my speech. I can hardly think or feel any emotion, because both of those require energy.
My “tiredness” isn’t relieved by sleep or rest, either.The fatigue comes and goes as it pleases, although it often DOES seem to be worse before weather-changes or after I’ve tried to do too much. Rest certainly helps a LOT, but when I wake up in the morning I often feel as if I’d been beaten. My muscles are incredibly stiff, and it usually takes me at least 30 minutes to be able to walk normally. On a “bad” day, my muscles STAY stiff. In other words, even with medication, I do NOT sleep well. Some doctors have surmised that this poor sleep also means that our muscles aren’t being repaired, which leads to pain.
My body over-reacts to some sensations…(and perhaps ignores other pain.) When I’m having a flare, anything that touches my back or hits my lower legs or feet feels like an electric shock going up my spine. Do NOT come up from behind me and touch my back, especially my lower back. I will hit you. Seriously. Hard. It’s like you touched me with a taser. This is how bad it is: I was working with a filly one day and she came down on my foot. That hurts, of course, but as it was during a flare the pain was so intense that I fell down on the ground and literally could NOT get up for what seemed like minutes. I was terrified that she would trample me. Finally I was able to pull myself up on the fence with my arms. After that I had to admit that I could no longer safely work with horses.
That leads me to this: although my fibro is really quite mild in comparison to many people’s it has altered my life in SO many ways.I would simply not be able to work outside the home anymore in most jobs. I get clumsy as heck, and sometimes my hands don’t work well. I don’t drive long distances, either, because if I have a fatigue-flare I would not be able to drive safely. I have to plan my shopping, because standing up can be EXTREMELY painful at times and I’m too proud to use a cart. I’m also not very reliable, because I never know when I’m have a spell. It isn’t that I’m depressed; there is SO much that I’d love to do if I had the energy and ability (like try living off-grid), but I know that’s not reality. I often get in trouble because I plan MUCH more for myself than I can do.
I want to zero in on one aspect of fibro that literally hits close to home: housekeeping. When you have fibro or chronic fatigue syndrome (now called Myalgic encephalomyelitis) you have to use your brain (if it is functioning that day) to spare your energy. That means that I look around and take as much as possible to on each errand to a part of the house rather than make multiple trips. I now actually have to have someone help me clean. (It’s embarrassing, really.) Sometimes jobs like folding clothes take several attempts; it’s honestly exhausting.
NO, exercise is NOT a magic bullet.I think doctors often say this because it IS partially true. Obviously if a person is literally lying around with no interests or excitement some exercise MIGHT make him or her feel better. During a flare, however, exercise is like a normal person exercising while having the flu, and it can reduce you to tears. During my “normal” times I can walk a mile (it takes me about 25 minutes because I am rather clumsy and have balance problems on the treadmil) fairly easily; during a flare I can hardly walk to the kitchen. Exercise DOES help, but it’s not a cure and, during a flare, it can do much more harm than good. It can take us DAYS to recover.
No, all those quack products and supplements aren’t magic bullets, either. Sometimes nutritional products, or gluten free items, or this or that do help certain people who have deficiencies or unknown food allergies. I do think the reason that I do as well as I do and am not completely bed-ridden, is because I keep moving to some extent (the baby goats are excellent therapy), I DO try to eat a reasonably healthy diet, and I discovered by chance that MSG was a major trigger for me (it makes me feel like there is drill going into my joints.) Eating fruits, veggies, whole grains, and lean meat (as long as you aren’t allergic to any of these) and cooking them at home really helps some people. (Not all. Again, I think “fibro” is so maddeningly different because it’s actually the result of very different conditions in different people.)
Fibro may not kill a person, but it can make a person wish he or she were dead.That’s the sad truth. Long-term chronic pain is life-changing, it sometimes occurs in the prime of life, and can bring hopelessness. I’m blessed, but many people with fibro lose their jobs, their spouses, their hobbies/sports, and their friends. What makes it even worse is the fact that it is “invisible,” so many doctors and family members completely dismiss it. Imagine being in a lot of pain and constant fatigue and having a doctor basically tell you that you’re just crazy or a hypochondriac. (Funny, but that’s also what doctors used to say about menstrual cramps and then about lupus. Basically it’s the first answer often given when doctors don’t know what to do about an issue.)
So there are 10 things to know about fibro. Again, every case is different, and I feel very blessed to be able to do what I can do.
I’m not sure what it is like for other people, but I suspect I have had Fibromyalgia my entire life. As a child, I was always hurting, but I was told it was just “growth spurts“. Things that didn’t seem to hurt other children (rough playing) were excruciating to me. I didn’t have a lot of energy, even when most kids were busy running and playing.
I was very sensitive to weather changes and preferred to stay indoors, and I was “sick” a lot. I seemed to get every cold that come along, but sometimes I would fake being sick, so I could stay home from school because I was just so tired all the time. As a teenager, I didn’t go out and do a lot of things with my friends, because I couldn’t keep up with them.
I didn’t participate much in school events, clubs or sports, because I didn’t have the energy. I struggled in school, because I had a hard time learning, concentrating, focusing, and remembering things. I barely passed tests, and even though I was learning the material, I had trouble getting it back out on paper for assignments.
I felt like my memory was like swiss cheese, full of holes. Especially when it came to remembering history dates and names, math formulas, and chemistry equations. When I was 17 I started college but after a year and a half, had my first major flare-up, and collapsed doing an aerobic routine. I was sleeping literally 18 hours a day and was so exhausted I could barely get myself to the bathroom or chew my food.
I became so severely anemic I almost died. My doctor said if my iron level had dropped even one more point (it was 14. Should be at least 50-100) she would have forced me into the hospital. I had to quit college. A year later, I went back but again had to leave because I was flaring up again. I had to quit or was fired from jobs, because I was too slow, and couldn’t keep up with the workload, no matter how hard I tried, and the more I pushed myself, the sicker I got.
By the time I was 25 I couldn’t work at all. I was young and looked healthy, so my doctors just told me I was depressed. It was years before I got a full diagnosis. It took two different psychologists to suggest to my doctor that I get tested by a specialist for Fibromyalgia before I could get anyone to realize I wasn’t JUST depressed.
Day to day, my pain level is at about 6/7. It’s primarily manifested in both my legs, my left hip (sciatica), my back, shoulders, and neck. Occasionally have so much pain in my hands I can’t even type on the computer (which makes my chosen profession as a writer more difficult than most).
My life is pretty limited because any physical activity beyond a 20-minute walk once or twice a week sends me into a major flare-up that lasts weeks at a time. When this happens I can not function at all and am bedridden for days at a time. I can’t do much but watch TV and sleep.
During one flair, I once slept for three days straight, because I was so exhausted. I didn’t even eat. I woke up once, to use the bathroom and sip some water, and passed out again. Once I woke up, I felt really good for about six hours, and then the fatigue hit again.
I have very few days when I feel “normal”, or energetic. No matter how much sleep I get, I am ALWAYS exhausted. I suspect it’s the same kind of tired new parents feel when they haven’t slept a full night in a year. I remember one time, when I was about 14, I woke up in the morning and actually felt refreshed and energetic, like I could face the day head-on and bounced out of bed. Literally, bounced.
I remember it so well because the entire day I was confused. I had never felt that before, and it was so foreign to me. The next day it was gone. I have never felt that again. EVER. If that is what it feels like to be “rested” I’ve been screwed out of good sleep my whole life. One day out of 32 years isn’t much.
Out of a 30 day month, I have maybe one “Less Bad Day” a week. If I’m lucky. I am lucky enough to have a man in my life who understands my limitations and doesn’t expect me to do more than I am able to. He often does the errands, and a majority of the housework, because I just can’t finish it all.
When you have Fibromyalgia, there are no good days. Not really. Days fall into three distinct categories:
1. Flair ups: Days when you are in so much pain you pray for death but it never comes. You feel like you’ve been hit by a truck. No amount of drugs help.
2. Bad Days: When all you can do is take a shower and brush your teeth if you’re lucky. Housework and errands have to wait because you’ve used all your energy just bathing. Strong pain meds take the edge off, but you have the energy level of a geriatric slug wading through tar.
3. Less Bad Days: When the meds kind of work, but you still hurt, and you don’t really want to do anything. But, you suck up the pain and the exhaustion and force yourself to go grocery shopping because if you don’t you’ll starve. It’s really a matter of survival priorities when you have Fibro. Most of us just try to get through each day and do whatever we can to not cause a flair-up of symptoms.
I can tell you as someone who was diagnosed with PMR and fibro, most PMR info on the internet isn’t all that accurate. PMR usually affects elderly women, but it’s not so rare for younger folks to have it. And, most who are below the age cut off aren’t even given the blood tests needed to confirm the diagnosis because doctors just think it’s impossible to have PMR at 30, 40, 50 years of age.
I was 54 when I woke one morning thinking I must have the flu due to the unexplained pain and stiffness in my body. Over the course of two weeks, I had two primary care visits, pretty large doses of pain meds, increasingly painful stiffness that lasted until 2 or 3 p.m., severe sleep deprivation, rapid weight loss.
I thought my normally attentive primary care dr might have a cruel streak in her when she denied prescribing me steroids (I was desperate for relief) even for just 2 or 3 days until my appointment with the rheumatologist arrived. She explained it could mess up important blood work the rheumy would likely need.
By the time I saw the rheumatologist (just 2 weeks from the onset of symptoms), I could not dress my upper body, wash my hair, or brush my hair because of the pain and extreme lack of mobility in my shoulders, upper arms, and neck. I couldn’t drive because I could not turn the steering wheel or press on the brake hard enough to stop it from moving.
I couldn’t turn my head to look to the side let alone behind me to back up. I literally performed an off-balance hobble to the bathroom when needed, and spent the rest of my time in a recliner. It was the least painful thing I could do to help myself. I could barely hold a fork or spoon let alone cut any food.
My lower body was crippled by horrible pain and unbelievable stiffness. Feet, ankles, knees, hips are all affected. This was sheer hell. Every single day my condition worsened exponentially. My first time in a wheelchair was my first appointment with a wonderful rheumatologist. I needed help getting out of the wheelchair and into the SUV to go home because I couldn’t rise without falling back to the wheelchair seat.
I went into all that because when I googled my symptoms, PMR was often a result but I didn’t think it was that because the information didn’t even touch on the severity, that it could be completely disabling within just a few days time, or the widespread symptoms outside of the upper body morning stiffness. No way did those symptoms cover what I was experiencing!
Upon diagnosis, I started a prednisone regimen and found a couple of PMR groups on Facebook. When I read thru the posts of the first group, I did it through heavily flowing tears and frequent nose-blowing breaks. I scrolled and read all night long. THESE PEOPLE WERE DESCRIBING MY EXPERIENCE!!! I truly felt 100% alone in this outside of my rheumy understanding what was happening and assuring me I’d get better.
Nothing in print truly confirmed my symptoms. When you are at a pain level of 8 to 10 every single moment of every single day, when the 30-minute increments of sleep you manage a few times a night end with the sound of yourself moaning in pain loud enough to wake you, when you’re hypersensitive to light, sound, motion, touch, and the best-printed info you can find makes it sound like you have some aches and pains in the morning, you feel A.L.O.N.E.
It was in the FB groups where I learned that the severity of symptoms and problems simply getting yourself to the toilet to pee was the norm. Countless people younger than me had PMR. Countless people suffered for months, got addicted to pain meds (which do not help PMR, by the way), were brushed off by doctors as complainers or drug seekers, never even received referrals to rheumatology! It’s a fairly rare condition but frequently misdiagnosed or undiagnosed, and not treated properly.
Bloodwork alone doesn’t 100% confirm PMR. But, bloodwork combined with improvement with prednisone is confirmation. Unfortunately, so many in the FB groups have struggled for years–even decades–because we are individuals who respond differently to the same treatments.
Prednisone is the cure (although some have achieved success with an anti-inflammatory diet & lifestyle change). No amount of pain meds will help. I know. I was on heavy doses for 2 weeks.
I was fortunate to start low-dose pred, increasing dosage until I was able to function. Stayed on that dose for a couple of months & tapered down (which was scary because each small decrease in dosage brought on flares for a few days) over the course of a few months. I’ve had a few flare-ups since, but the bloodwork was borderline, so I chose to wait it out & I was lucky enough that the flare-ups passed on their own.
When my rheumy diagnosed the PMR, he said he thought there was something else going on too but he wanted to get the PMR under control first. It was later that he was diagnosed the fibro. Fibro is a bitch. I hate it. It’s unpredictable & the brain fog not only makes you feel like you’re losing your senses, I think it can actually make you crazy at times.
It’s a struggle to mentally and emotionally deal with the daily pains & bouts of extreme fatigue, and flare-ups that can leave you bedridden, but it’s the unpredictability, the making plans and doing everything possible to be prepared to keep your plans or commitments, and not knowing until the time comes if you’ll be able to do it….and if you are, how long will you last?
The two conditions are similar in that they push the limits of pain & fatigue, but they are very different, at least for me, in how adversely they affected my life. I’m one of the lucky PMR-ers because my length of treatment fell within the parameters of most descriptions, and my steroid dosage was in the middle range too.
As much as I hate fibro, I’d choose it over PMR if I had to choose one or the other. Unless there’s a guarantee PMR will be treated with success in getting off prednisone, I’d choose fibro cuz I wouldn’t stick it out for years and years with PMR pain, or OMR pain-free but stuck on prednisone forever.
So, if anyone had the patience to sit thru my ramblings, I hope you felt you gained some helpful insight. My intent was to inform readers that most material describing PMR (including that handed out by doctors) makes it sound like a Club Med experience compared to the living hell it really is.
If you suspect you may have it, insist on seeing a rheumatologist for the best chance of successful treatment. Successful means little to no pain and steroid-free! This turned out to be therapeutic for me and I’ve never discussed my experience like this with anyone–ever!
Among patients who developed post-acute COVID-19 — so-called “long COVID” — almost one-third reported clinical features of fibromyalgia, Italian researchers reported.
In a web-based survey that included more than 600 patients, 30.7% met the American College of Rheumatology criteria for a fibromyalgia diagnosis at a mean of 6 months after having had COVID-19, said Francesco Ursini, MD, Ph.D., of the University of Bologna, and colleagues.
“In light of the overwhelming numbers of the SARS-CoV-2 pandemic, it is reasonable to forecast that rheumatologists will face a sharp rise in cases of a new entity that we defined as ‘FibroCOVID,’”
Aside from the potentially lethal acute viral infection of SARS-CoV-2, a post-acute syndrome with myriad symptoms including not only pulmonary sequelae but also endocrine, cardiovascular, neuropsychiatric, and musculoskeletal manifestations is now widely recognized.
The current definition of fibromyalgia requires a score of 13 or higher on the Fibromyalgia Symptom Scale, which combines scores on the Widespread Pain Index and Symptom Severity Scale.
The pathogenesis of fibromyalgia is not completely understood. “Pain augmentation/dysperception seems associated with exquisite neuron morphological modifications and imbalance between pronociceptive and antinociceptive pathways arising from an intricate interplay between genetic predisposition, stressful life events, psychological characteristics, and emerging peripheral mechanisms, such as small fiber neuropathy or neuroinflammation,” Ursini and colleagues explained.
In addition, viral triggers have been linked with the development of fibromyalgia. Therefore, to investigate the prevalence of fibromyalgia following acute COVID-19, the researchers conducted a cross-sectional survey during April 2021, in which participants completed a survey that included information on demographics, symptoms, and duration of COVID-19, and comorbidities.
A total of 616 patients were included, with 189 diagnosed with fibromyalgia. More than three-quarters were women whose mean age was 45. The median duration of acute COVID-19 was 13 days, and 10.7% were hospitalized. Among the symptoms reported during the acute viral illness were anosmia/ageusia in 70.9%, myalgia in 70.4%, fever in 67.7%, and arthralgia in 64.6%.
Comorbidities included anxiety and chronic pulmonary disease in patients both with and without fibromyalgia. In contrast, hypertension was significantly higher among fibromyalgia patients (27% vs 10.8%, P<0.0001), as was the mean body mass index (30.4 vs 23, P<0.0001) and the prevalence of obesity (49.2% vs 2.1%, P<0.0001).
Among the survey respondents who had fibromyalgia, 57% were women, a percentage that was lower than the 77.4% of women in the cohort overall, suggesting that men more often developed the musculoskeletal sequelae, the researchers explained.
Those with fibromyalgia also were significantly more likely to be hospitalized (19% vs 7%, P<0.0001). During the acute phase of the disease, patients who subsequently developed fibromyalgia more often reported cough (52.9% vs 45%, P=0.046) and dyspnea (45.5% vs 35.4%, P=0.017), and also more often required supplemental oxygen (18% vs 7.5%, P<0.0001).
On univariate analysis, factors associated with fibromyalgia included age, male sex, cough, dyspnea, hypertension, obesity, and treatment with antibiotics, low molecular weight heparin, or oxygen.
On multivariate analysis, the only independent predictors were male sex, with an odds ratio of 9.951 (95% CI 6.025-16.435, P<0.0001) and obesity, with an odds ratio of 82.823 (95% CI 32.192-213.084, P<0.0001).
Overall, patients who developed fibromyalgia appeared to have a more serious phenotype of COVID-19, more often requiring hospitalization and supplemental oxygen, the researchers reported. “Notably, both male gender and obesity have been consistently associated with a more severe clinical course in patients with COVID-19, including a significantly increased mortality rate.”
Potential mechanisms by which the coronavirus could trigger fibromyalgia, the team speculated, are epithelial injury or damage to the neuromuscular, immune dysfunction, and upregulation of inflammatory cytokines such as interleukins 1 and 6.
Prospective studies will be needed to further elucidate the clinical course and outcomes of the post-acute COVID-19 musculoskeletal disease manifestations, the authors cautioned.
A potential limitation of the study, they said, was the possibility of self-selection bias.
It may seem counterintuitive, but young and middle-aged fibromyalgia patients report worse symptoms and poorer quality of life than older patients, a Mayo Clinic study shows. Fibromyalgia most often strikes women. It is characterized by widespread musculoskeletal pain with fatigue, sleep, memory and mood issues. The research, one of several Mayo studies being presented at the American College of Rheumatology annual meeting, suggests the disorder plays out differently among different age groups.
Researchers studied 978 fibromyalgia patients and divided them into three age groups: those 39 or younger, those 50 to 59, and those 60 or older. The younger and middle-aged patients were likelier to be employed, unmarried, smokers and have a higher education level, lower body mass index, more abuse history and a shorter duration of fibromyalgia symptoms than older patients.
“Among the three age groups of young, middle-aged and older, symptom severity and quality of life differs,” says senior author Terry Oh, M.D., a physical medicine and rehabilitation physician at Mayo Clinic in Rochester, Minn. The study’s findings were surprising, because quality of life and physical health are considered to be negatively associated with age, Dr. Oh says.
Dr. Oh notes that women in all three groups with fibromyalgia reported a lower quality of life than average U.S. women, and that the difference between their physical health and that of the average woman was more significant than mental health differences, particularly in young patients.
*About 7 percent of fibromyalgia patients had inflammatory rheumatic conditions, and that in general, those fibromyalgia patients didn’t do as well with treatment as those without rheumatic diseases.
*Fibromyalgia patients may also have skin-related symptoms such as excessive sweating or burning or other sensations.
*Obese patients with polymyalgia rheumatica have more pain and disability than other polymyalgia rheumatica patients. They also tend to need higher doses of glucocorticoids.
*Rheumatoid arthritis patient experiences and symptoms do not always reflect what medical literature shows when it comes to pain, morning stiffness, the relationship between swelling and damage, and what worsens or improves symptoms.
More than 100 million Americans suffer from chronic pain. But treating and studying chronic pain is complex and presents many challenges. Scientists have long searched for a method to objectively measure pain and a new study from Brigham and Women’s Hospital advances that effort. The study appears in the January 2013 print edition of the journal Pain.
“While we need to be cautious in the interpretation of our results, this has the potential to be an exciting discovery for anyone who suffers from chronic pain,” said Marco Loggia, PhD, the lead author of the study and a researcher in the Pain Management Center at BWH and the Department of Radiology at Massachusetts General Hospital. “We showed that specific brain patterns appear to track the severity of pain reported by patients, and can predict who is more likely to experience a worsening of chronic back pain while performing maneuvers designed to induce pain. If further research shows this metric is reliable, this is a step toward developing an objective scale for measuring pain in humans.”
Specifically, researchers studied 16 adults with chronic back pain and 16 adults without pain and used a brain imaging technique called arterial spin labeling to examine patterns of brain connectivity (that is, to examine how different brain regions interact, or “talk to each other”). They found that when a patient moved in a way that increased their back pain, a network of brain regions called Default Mode Network exhibited changes in its connections. Regions within the network (such as the medial prefrontal cortex) became less connected with the rest of the network, whereas regions outside the network (such as the insula) became connected with this network. Some of these observations have been noted in previous studies of fibromyalgia patients, which suggests these changes in brain connectivity might reflect a general feature of chronic pain, possibly common to different patient populations.
“This is the first study using arterial spin labeling to show common networking properties of the brain are affected by chronic pain,” said study author Ajay Wasan, MD, MSc, Director of the Section of Clinical Pain Research at BWH. “This novel research supports the use of arterial spin labeling as a tool to evaluate how the brain encodes and is affected by clinical pain, and the use of resting default mode network connectivity as a potential neuroimaging biomarker for chronic pain perception.”
Patients coping with the complex pain disorder fibromyalgia often have difficulty sleeping, and a new study published in The Journal of Pain reports that despite the negative quality of life implications, poor sleep is not a significant predictor of fibromyalgia pain intensity and duration.
The complexity of fibromyalgia as a pain disorder is rooted in the variable, patient-to-patient, influence of physical, psychological, social factors that contribute to clinical pain, and their influence often is difficult to understand. Previous research has shown that variables such as negative mood and the number of localized pain areas are significant predictors of clinical pain in fibromyalgia patients.
Many fibromyalgia patients complain about poor sleep, and studies have shown that interrupted sleep experienced by individuals with other pain conditions is predictive of next day clinical pain. Also, sleep duration has been shown to predict clinical pain in healthy adults. For this study, a research team from the University of Florida hypothesized that decreased total sleep time would predict higher clinical pain in a sample of patients with fibromyalgia.
Seventy-four adults with fibromyalgia were recruited for a University of Florida study and they were observed for 14 days. Subjects rated their clinical pain every evening and completed sleep diaries describing the previous night’s sleep.
Results of the analysis showed that four sleep measures evaluated in the study failed to significantly predict clinical pain. The authors noted that the effects of impaired sleep, such as fatigue and inactivity, may play more significant roles in clinical pain than measures of sleep duration or insomnia.
A recent trial shows cognitive-behavioral therapy (CBT) reduces functional disability and depressive symptoms in adolescents with juvenile fibromyalgia. The psychological intervention was found to be safe and effective, and proved to be superior to disease management education. Full findings from this multi-site clinical trial are published in Arthritis & Rheumatism, a peer-reviewed journal of the American College of Rheumatology (ACR).
Medical evidence reports that juvenile fibromyalgia syndrome affects 2% to 7% of school age children. Similar to adult cases, the juvenile form of the disorder primarily strikes adolescent girls. Both adult and juvenile fibromyalgia patients experience widespread musculoskeletal pain, fatigue, as well as sleep and mood disturbances. Previous studies show that juvenile fibromyalgia patients are burdened with substantial physical, school, social and emotional impairments. However, studies investing treatment for the juvenile form of the disorder are limited.
For the current trial, led by Dr. Susmita Kashikar-Zuck from the Division of Behavioral Medicine and Clinical Psychology at Cincinnati Children’s Hospital Medical Center in Ohio, investigators recruited 114 adolescents between the ages of 11 and 18 years who were diagnosed with juvenile fibromyalgia. The trial was conducted at four pediatric rheumatology centers between December 2005 through 2009, with participants randomized to cognitive-behavioral therapy or fibromyalgia education, receiving eight weekly individual therapy sessions and two additional sessions in the six months following the end of active therapy.
Analyses showed that both patient groups displayed significant reduction in functional disability, pain, and depressive symptoms at the end of the trial. Pediatric participants in the cognitive-behavioral therapy group reported a significantly greater reduction in functional disability compared to those receiving fibromyalgia education. The therapy group had a 37% improvement in disability compared to 12% in the education cohort. Both groups had scores in the non-depressed range by the end of the study, but pain reduction was not clinically significant — a decrease in pain of less than 30% for either group.
The drop-out rate was low with over 85% of participants attending all therapy sessions and no study-related adverse events were reported by investigators. “Our trial confirms that cognitive-behavioral therapy is a safe and effective treatment for reducing functional disability and depression in patients with juvenile fibromyalgia,” concludes Dr. Kashikar-Zuck. “When added to standard medical care, cognitive-behavioral therapy helps to improve daily functioning and overall wellbeing for adolescents with fibromyalgia.”
A study in the Oct. 15 issue of the Journal of Clinical Sleep Medicine found that adults with fibromyalgia had a much higher prevalence and risk of restless legs syndrome than healthy controls. The study suggests that treating RLS may improve sleep and quality of life in people with fibromyalgia.
Results show that the prevalence of restless legs syndrome was about 10 times higher in the fibromyalgia group (33 percent) than among controls (3.1 percent). After statistical adjustments for potential confounders such as age, gender and ethnicity, participants with fibromyalgia were 11 times more likely than controls to have RLS (odds ratio = 11.2). As expected, considerable sleep disruption was reported by participants with fibromyalgia using the Pittsburgh Sleep Quality Index, Insomnia Severity Index and Epworth Sleepiness Scale. In the fibromyalgia group these sleep problems were more severe among people who also had RLS.
“Sleep disruption is common in fibromyalgia, and often difficult to treat,” said contributing author Dr. Nathaniel F. Watson, associate professor of neurology at the University of Washington in Seattle, Wash. “It is apparent from our study that a substantial portion of sleep disruption in fibromyalgia is due to restless legs syndrome.”
The research team led by Dr. Watson and lead author Dr. Mari Viola-Saltzman of Loyola University Medical Center in Maywood, Ill., studied 172 people with fibromyalgia who had a mean age of 50 years; 93 percent were female. They were compared with 63 healthy controls who had a mean age of 41 years.
Fibromyalgia was identified by self-report or review of the medical records, and it was confirmed on examination according to published guidelines regarding the presence of pain that is chronic and widespread pain . Pain was assessed by subjective report and by objective measurement with a dolorimeter, a spring-loaded gauge that is used to apply standardized rates of pressure to tender points on the arms and legs.
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, fibromyalgia can cause significant pain and fatigue. It is estimated to affect 5 million Americans age 18 or older, and between 80 and 90 percent of those diagnosed with fibromyalgia are women. The causes of fibromyalgia remain unknown.
Restless legs syndrome was diagnosed using a self-administered, validated questionnaire. RLS is a sleep-related movement disorder that involves an urge to move the legs that is usually accompanied or caused by uncomfortable and unpleasant sensations in the legs. This urge begins or worsens during periods of rest or inactivity, is partially or totally resolved by movement, and worsens or only occurs at night. RLS occurs 1.5 to two times more commonly in women than in men.
Watson noted that treating restless legs syndrome may be one of the keys to reducing fatigue and improving quality of life in people with fibromyalgia. RLS often can be successfully treated with a medication such as pramipexole or ropinirole.
“Since restless legs syndrome is a treatable condition, diagnosing and treating RLS in fibromyalgia patients has the potential to improve their sleep,” Watson said.
According to the authors, the cross-sectional nature of the study did not allow for an examination of causality. However, several aspects of the two syndromes suggest a logical overlap. Both disorders involve sensory abnormalities, and a similar pathophysiology of the system that regulates the neurotransmitter dopamine has been proposed for both syndromes. Furthermore, restless legs syndrome may be induced by antidepressants, which are a common treatment for pain and depression in fibromyalgia. Also, exercise has been shown to improve the symptoms of both syndromes.
The study was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health and by the National Fibromyalgia Research Association.
