Afflicting up to 5 percent of the U.S. population, mostly women, fibromyalgia is characterized by widespread pain and a range of function problems. A new study in The Journal of Pain reports there is a close association between obesity and disability in fibromyalgia patients.
The purpose of the study, conducted by University of Utah researchers, was to evaluate the relationship between fibromyalgia and obesity. They hypothesized that obesity significantly adds to the disease and disability burden of the condition. Two hundred fifteen fibromyalgia patients were evaluated in the study and given several physical tests to measure strength, flexibility, range of motion, and strength. Heart rates and sleep quality also were assessed.
The authors reported that consistent with previous studies, obesity is common among those with fibromyalgia. Half the study sample was obese and an additional thirty percent were overweight. Also consistent with previous findings, obese patients in this study showed increased pain sensitivity, which was more pronounced in lower body areas. The obese patients also had impaired flexibility in the lower body and reduced strength.
The study concluded that obesity is a common comorbidity of fibromyalgia that may compromise clinical outcomes. The adverse impact of obesity is evidenced by hyperalgesia, disability, impaired quality of life, and sleep problems. The authors also noted that recent evidence suggests weight loss improves fibromyalgia symptoms, perhaps resulting from patients adopting healthier lifestyles and taking more positive attitudes toward symptom management, and overall quality of life.
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, and 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 differ,” 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 the 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 fibromyalgiapatients had inflammatory rheumatic conditions, and in general, those fibromyalgia patients didn’t do as well with treatment as those without rheumatic diseases.
*Fibromyalgiapatients 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 rheumatic patients. They also tend to need higher doses of glucocorticoids.
*Rheumatoidarthritis 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.
*Hospitalization is a significant risk factor for gout flares in people already diagnosed with gout.
I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest that I’m being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn’t be further from the truth
It isn’t at all surprising to me that people have suggested to Lady Gaga that she is being dramatic, making her pain up, or playing the victim.
Everyone with chronic pain has faced this exact same sort of stigma before. It is pervasive with fibromyalgia.
I want to say ‘Try it on for size, see how it fits. Hell, give it a decade or two and come back to me. Tell me how it feels.’ But I wouldn’t want anyone to endure this pain. Not ever. But it seems chronic pain is a member’s only club. The true depth of the experience is extremely hard to explain to people. And there will be those that doubt it is a valid experience. That you are in as much pain as you say. That you are in pain at all. That, surely, you exaggerate it.
You see, the main lesson we learn early on in coping is to try and function with pain and the fatigue of fibromyalgia. Generally, we learn this the hard way. We push through the pain. We do not pace. We do not pay attention to our limits. We want to keep our lives as IS. So we push through it. So perhaps the impact isn’t seen by the outside observer yet. This causes a great deal more pain. So we begin to seek some sort of resolution.
But there isn’t any resolution. So we seek some sort of reduction. But there aren’t any easy answers there. But meanwhile, we are still pushing through the pain. And this stress builds and builds until we cannot do that anymore. Generally, a lot of us learn the hard way we have to pace. We have to slow down. We have to pay attention to those newly imposed limitations.
I learned this twice. Because that is how I roll.
Nevertheless, the impact is seen in our lives then. People do not see the chiropractor, acupuncture, or massage therapy appointments. Doctor appointments and specialist appointments. Diets. Supplements. Exercise. And every other thing we try and do. But when it begins to start to cancel plans and affect work… they begin to notice.
How is it you did that one day, but couldn’t the next? You are just lazy. You are just exaggerating the pain.
You just don’t want to work.
The judgments begin. All the while you feel guilty for not being who you Were. And struggle to maintain the semblance of a life you had. May be struggling to hold onto your career, working in general or dealing with the sudden loss of work. Not being able to work is something that is difficult to deal with financially, in regards to self-worth and guilt wise. All this takes adjustments. And people Judge.
What they have no comprehension of is the level of pain, fatigue, poor concentration and other symptoms of illness one has to endure and try to function with on a daily basis. When you are developing a treatment plan, it can be pretty much impossible to function. Unmanaged pain is extremely difficult to cope with. And it may never be managed well.
That is the thing with chronic pain. Not everyone’s pain can be managed to a level they can function well enough to work or do the sort of things society expects of them. Some people can have moderately managed pain and they can function at a better capacity some of the time. And there are those with well-managed pain. But it is still pain. It is still very difficult to deal with. There are still very bad days, moderate days and then there are good days. It is very unpredictable.
Oddly enough they think we exaggerate when we also learn to mask the pain in order to function in society as we do. We are rather stoic given the level of pain we are in. We have exceptional pain tolerances we develop from dealing with it all the time. We have ‘baseline’ pain that we find ‘normal’ or ‘good days’ and I will guarantee the average person wouldn’t find that ‘normal’ at all.
And we have moderate pain that even Then we are still going at it… but not doing Quite as well. And we have brutal pain that would have the average person in the ER, and certainly, it is the sort that causes us to be non-functional. So do not judge us for non-functional days. Not to mention there are decades of worse pain sometimes. Times when pain management isn’t working. And it is relentless then. But we get through it.
I think it is a great thing that Lady Gaga is out there sharing the truth about chronic pain and fibromyalgia. But with that truth comes the very true fact of the stigma we all experience. It is a great thing she is pointing it out as well. When your pain isn’t managed it will manage you, and you need to take the time to deal with it. She has no one to answer to for that. Most people will completely understand that. Those that don’t are the ones that we all deal with in our lives and why awareness is so very important in the first place.
Just because you cannot see my pain doesn’t mean I have to validate its existence to you. Believe it. Or don’t. I don’t care. I still have to live and cope with it whether you do or don’t. What it does mean is that if you don’t… you will not be a person I will value in my life. If you do not believe in a fundamental experience that defines my existence and how I live in this world, then I have very little use for you.
I came across an interesting long-term study in Finland on Fibromyalgia spanning 26 years published in the journal of Clinical Rheumatology. The severity of symptoms persists for decades in a fibromyalgia-a 26-year follow-up study.
There has been this sort of rumor that fibromyalgia improves with the time that I have heard several times and so this study is interesting. Also, there is the question of whether we can go into remission or not. Either way, we all want to know what FM will be like in the future. We know it isn’t progressive but we worry it will worsen with age.
It started with 56 patients in 1986 who were given a base questionnaire. 42 of these fulfilled the criteria for FM at that time.
Then 26 later 36 of the patients were located again. and 28 of these filled out another questionnaire. So we are looking basically at the study of these 28 individuals. Nine of the questions on the new questionnaire were identical to the old one, including questions on the quality of life and changes in symptoms.
Three individuals (11%) had recovered from fibromyalgia. (this is a fascinating number here. Makes you want to dig a little into the reasons for their recovery.)
23% reported the remission we hear about, having had one or several symptomless periods lasting at least 1 year. This does suggest that remission is indeed possible.
In others (n=25), all symptoms aside from pain showed a slight deterioration. So we might see a slight slide in symptoms.
Despite aging and the FM, functional levels remained the same over time. This is a key one. Functionality, despite aging, remained consistent.
The actual amount of symptoms reported didn’t change much (10.8 (SD 2.9) vs. 11.1 (SD 4.1), p = 0.75). Symptom changes can lead to a lot of problems, but it looks like over time we do not change overly in them.
Insomnia showed the most significant increase. I wouldn’t say this is much of a surprise since it is a difficult one to manage.
Exercise didn’t have a significant influence on the changes in the measured parameters. But the 3 recovered individuals did an exercise on a regular basis. And they speculate since 21 of 24 (who answered the question on exercise) did exercise it might be why functionality was consistent over time. Most of the participants did exercise and this could be then a key to treatment and functionality. A study of those who do not compare to those who do long-term would be interesting.
Symptoms of FM have persisted in most patients for decades without significant deterioration of self-reported functional ability. About one-fourth of patients had experienced long symptomless periods during their illness. Three patients (11%) reported that they have healed from FM. study
We can conclude in the long-term symptoms will remain but there can be extended periods of remission. And that perhaps exercise helps us maintain our current level of functionality over time. This is a positive study for long-term outlook really. At the very least it says things remain consistent over time, not worse.
So it looks like some clinicians have some uncertainty when it comes to diagnosing Fibromyalgia. Remember the criteria for tenderpoints are no longer used.
Data from the U.S., Europe, and Asia report that approximately half of providers admit uncertainty in confidently making a diagnosis of [fibromyalgia]. Diagnosing [fibromyalgia] more promptly should reduce unnecessary tests, specialty referrals, health care costs, and patient anxiety,” Kim D. Jones, Ph.D., FNP, FAAN, from Oregon Health and Science University School of Nursing and School of Medicine, and colleagues wrote.
“Based on our clinical experience, we surmise that clinicians need a simple screening test that can be performed as part of the routine evaluation in all patients with persistent pain complaints.”
The study recommends adding two things to help with assessments.
Asking whether they have deep, persistent, aching pain all over their body. Widespread pain criteria.
And see if there is a pain when the Achilles tendon is pinched for 4 seconds.
The study involved 52 patients with FM, 108 with chronic pain but not FM, and 192 without pain or FM. They used three measures: BP cuff-evoking pain, digital palpation-evoked pain, and a question about persistent deep aching. Patients were looked at for tenderness to digital pressure at 10 spots and BP cuff-evoked pain and then asked to rate their deep persistent aching widespread pain on a 1-10 scale.
More FM patients answered the questions about persistent deep aching compared to the chronic pain subjects. They had higher bilateral digital evoked tenderness and BP cuff-evoked pain. (But the cuff-evoked pain became non-significant when researchers did multivariate logistic regressions).
The analysis demonstrated pinching the Achilles tendon for more than 4 seconds and a positive answer to the deep aching question did provide a beneficial screening test that indicated a probable diagnosis of fibromyalgia.
“We are recommending two simple assessments to be added to the routine evaluation of any chronic pain patient. We envisage these assessments be used as a screening instrument, not a diagnostic test, with a definitive diagnosis of [fibromyalgia] being reserved for later,” Jones and colleagues wrote. “By raising a provider’s index of suspicion, patients may be spared a lengthy cycling through the medical system before receiving a diagnosis of [fibromyalgia] and beginning treatment.”
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 for example.
But we all feel hypersensitive to another stimulus as well. And many of us mention things like sound sensitivity and light sensitivity. Well, there was a 2014 study that demonstrated we are indeed sensitive to this as well but because it was an fMRI study it was small. Still, it was interesting to me.
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 non-painful stimuli 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.”
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.”
So there are a lot of issues with sleep and fibromyalgia. I also have other chronic pain and vertigo, but seriously since I was young sleep and I have not been on speaking terms.
Yes, this is how I look when I sleep. Child-like and innocent and buried in glitter.
Here are some of the random things you can look forward to with fibromyalgia and sleep:
People will ask from time to time, what is your favorite sleeping position. And I am like, well, I go for all of them several times a night and see whichever I finally pass out from sheer exhaustion. Because it hurts. It just hurts in one position fairly quickly. So flip. And then that hurts. On stomach, then… well you get the point.
So hypnic jerks occur in twilight sleep. So just sort of hovering on the cusp before actual sleep. A state which actually can cause a lot of funky things. But hypnic jerks are just annoying as all hell. You Finally get almost to sleep after Hours and then your leg spasms like a dog when running in its sleep. But with fibromyalgia look forward to your entire body spasming. Yeah, that will wake ya.
So we have non-restorative sleep. So 4 hours or 10 hours and you actually do not feel refreshed. At all. Like you never slept at all. And trust me, when I can, I will sleep in to ‘catch up on sleep. Yet, I do not feel any better doing that. I still feel like it wasn’t enough… except there tends to be more pain with more sleep, because I was in one position for too long.
Without medication, it can take me 2 to 4 hours to fall asleep. And then I wake up repeatedly. Over and over. The night actually passes slowly. I have literally no concept of this deep sleep all night and waking up like no time had passed. I strongly envy my spouse for this quality of a perfectly normal sleep life. On the other hand, he cannot remember his dreams. Whereas I certainly do. With frequent wakings, you tend to remember a lot of dreams.
Yeah, sleep paralysis. With fibromyalgia, it can be an insane struggle to sleep. I actually get severely sleep-deprived without medication to help me. I have actually had nocturnal, Bizzaro seizure-like events when I was severely sleep-deprived which led to me being put back on my sleeping pill. But what usually happens is sleep paralysis. A lot of sleep paralysis.
As in several times in one night. I just get ‘stuck’ in my body, because the brain has shut down movement, as it should, but you are ‘aware’ like you shouldn’t be. Now, this can come with hallucinations, because technically you are not awake. So sort of dream-like things can happen while being aware of being stuck. I often get the feeling some Thing is staring at me.
Sometimes I get the feeling someone is hugging me, tightly, and when I become aware in some way that this is not my spouse I freak out and try to wake myself up, but getting ‘unstuck’ is tricky. And then when I do wake myself up, as soon as I go back to sleep it happens again. I actually have to get up, do something, then go back to bed and try again.
So sleep apnea is a real issue with fibromyalgia and that is something we definitely need to pay attention to. But I do not snore. Really. I’m serious. I may have woken myself up to the suspicious sound of someone snoring, which wasn’t my spouse, but I deny all knowledge of that person being me. I actually did have a sleep study done and I do not have sleep apnea, but this is good to determine, I do though have asthma and allergies which could -in pure theory- cause someone to snore. But not me.
So we can also sometimes have comorbid restless legsyndrome. And I do not have that. But I have had times with restless body syndrome. Sort of this agonizing since you have to move because there is this powerful, intense, Sensation when you don’t. I have no idea if that is what restless leg syndrome feels like. I sometimes get this in my legs, or my arms, or literally my whole body. But if that is what it feels like, at least it isn’t frequent. But it is intense. And it is near impossible to get to sleep like that.
Yes, there is chronic widespread pain. It is often the symptom people think of. Yes, we have pain. All the time. And we can flare up with a lot more than our baseline pain as well. And there are more types of pain than people think. See Fibromyalgia Pains, which includes the tortuous burning of allodynia
The fatigue can be as relentless as the pain. No napping will ever get rid of this intense exhaustion. You feel beaten down, lethargic, tired soon after we do things, and just no energy to spare when we want to do something.
With fibromyalgia, we have some major issues with the quality of sleep. Due to our brains, we do not get as much deep, restorative sleep, so when we wake up we do not feel refreshed. We are very prone to delayed onset insomnia, where we struggle just to get to sleep. As well as sleep apnea and restless leg syndrome.
We have what is often referred to as Fibro Fog. It is intense brain fog that affects our memory, short-term memory, working memory, focus, and concentration. We can sometimes lose our train of thought. Forget the words to things. Or use the wrong word in a conversation.
We often get a lot of comorbid. From migraines to IBS. I gained hypothyroidism and peripheral neuropathy along with chronic migraines and IBS-D. And they compound the chronic pain and chronic illness of Fibromyalgia. Decreasing our quality of life.
Other than the primary categories I just listed we have a lot of other symptoms in the mix. I have sensitivities to chemicals and have to be careful about detergents and cleaning products. I can’t wear make-up or use perfume. I also have low blood pressure, get night sweats, and get palpitations… all symptoms of Fibromyalgia.
All this can be life-altering. I can’t work certain jobs that require a lot of standing, lifting, or repetitive movements. Repetitive movements and lifting aggravate the chest wall pain called Costochondritis to an insane degree. And standing for long periods causes immense pain and sometimes once I do sit down I can’t get back up, the pain in my knees causes them to collapse. So we are limited in that sense on what job we can take. But then is the fibro fog there to make any job complicated beyond measure.
It is variable. I can walk an hour one day, with pain, but not extremepain. The next week I walk 15 minutes and it is extreme pain.
Every single thing we do hurts. Everything has a cost and a consequence to it.
I can tell you for me it was a relief. I had symptoms for years but being undiagnosed is difficult. You have to deal with it all but have no treatment, no label, and no real understanding of what you should do.
I was coping well at the time after having gone through a few years of difficulty coping. I didn’t have chronic migraines yet. I had learned to pace and moderate but I wasn’t in the workforce yet, so didn’t have that additional stressor on me. So I was doing well coping–wise with some Unknown conditions. I speculated it was fibromyalgia. Many things had been ruled out, after all.
But the Label mattered to me. I wanted to know what was wrong. What to do about it. If there was Anything I could do about it. I needed the official diagnosis. However, I pretty much knew by then what it was. And by then my father had already been diagnosed. But you need the label to give doctors. Otherwise, it is all Doubt. It is all ‘maybe it is in your head’. You need someone to make it real for them.
Turns out, the rheumatologist told me I was ‘too young for medication’ so it would be years before I even explored any actual medications for fibromyalgia. And this was long before Lyrica, Cymbalta, and Savella existed. So yeah, that ‘too young’ stigma was a real pain, literally. Especially when the migraines complicated my pain and coping once they arrived and continued to get worse over time.
Still, once you have the Official Diagnosis you can move on to treatment. To what may or may not work for you. You have a general idea of what you are dealing with long-term… which for me, was wildly wrong since I had no Idea so many comorbid could crop up. Or that brain fog could be such a massive problem all on its own.
But you can conceive of coping with it and seeing some sort of future with it, once it is known. But at the same time, you are aware it is chronic and it isn’t going anywhere. And that there really isn’t much known about it or really any effective treatment. This means a lot of the coping burden falls on us. And a long future of trial and error. And realizations on how worse it can get.
Still, I felt relief mostly. To have the name put to the illness. Finally. After so many years. Just Finally.
I recently began reading Toni Bernhard’s wonderful book How to Live Well with Chronic Illness. I was inspired to write this post after reading a section in her book where she outlines her ‘not-to-do list’. Bernhard rightly points out that it takes a great deal of self-discipline to stick within the restrictions imposed on your body by chronic illness. In my own case, I’ve found that most of my self-growth has come from recognizing, accepting, and learning to do things differently in response to these restrictions. I thought I would share my own not-to-to list:
Do not equate productivity with self-worth: in my life before fibromyalgia I made work my top priority. I was in my mid-twenties and trying to start a career. I made a lot of sacrifices in my relationships and personal life in order to achieve these goals. When all this came crashing down and I was no longer able to work, I could not see how I added value to the world around me. Although I lead a much more well-balanced life now, I still have that voice in the back of my head every day judging whether I accomplished enough, and in turn, how good I feel about myself. Now I challenge these thoughts. When you live with chronic illness, every act of self-care, pursuit of a hobby, time spent with a loved one, or even regular work are all “productive”.
Do not spend more time with toxic people then you choose to: we all have people in our lives, whether friends, colleagues or family members who are difficult to be around. They make us feel upset, drained, and negative. Sometimes I refer to these people as ‘energy vampires’- after visiting them, you feel depleted and depressed. These are people that you need to set boundaries with, regardless of any guilt they may throw your way. Toni Bernhard writes about having a revelation that she was not personally responsible for the behaviour of other people. She practices equanimity about the fact that other people often don’t act the way we want them to, which I think is a valuable insight for people living with chronic illness.
Do not push through: at the beginning of my illness journey, I never let myself “give in” to the fatigue or pain I was experiencing. I would stay out at a cafe all afternoon, even if I started to go cross-eyed with exhaustion, rather than surrender to my limitations. Now I understand that this not-to-do actually helps me transcend my limitations, rather than surrender to them. After taking a Mindfulness Based Stress Reduction class, I learned to develop a different relationship with my body. I try to work with my body, rather than in spite of it. For example, I really wanted to write this blog post today, but I am especially fatigued after a bad night’s sleep. So instead, I am writing one bullet point, then resting, then writing etc. You have probably had ‘pacing’ recommended to you before. Personally, I don’t usually follow a rigid pacing schedule, like 15 minutes work, 15 minutes rest, etc. Instead, I regularly check in with my body and accommodate accordingly. To me, for pacing to be successful, it needs to be about more than scheduling; it’s about building a better relationship with your body.
Do not add judgment of yourself on top of the challenges you already face:most of us are our own worst critics. We often set impossible standards for ourselves. Even in the face of the challenges of chronic illness, I still think that I should be more positive, zen, strong, or competent, among other things. When I get upset about something, I’m good at piling more judgment on top of myself for even being upset in the first place. By being more aware of my inner dialogue, I’m getting better at recognizing when I do to this. When I catch myself, I try to say ‘this extra judgment isn’t helping me deal with the real problem here’. I take a deep breath and begin again.
Do not say “I should” or “I have to” or “I must” to yourself: These types of statements set impossible standards for yourself, and are unrealistic given the constant flux of symptoms that characterize chronic illness. I’ve learned it’s important to hold intentions about what I would like to cultivate more of in my life. Intentions are always present. We always hold them in this moment. Goals about what you should/must/have to always do exist in the future. When you live with chronic illness you have so little control over what tomorrow will look like. ‘I should’ statements presume an all or nothing definition of success. These types of statements set yourself up for failure. It’s more helpful to say “I’m going to try my best to do __”. Hold this as an intention, even through set-backs.
