Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
let's try this. msvee posted a link to this wonderfully informative article. Here: you don't even have to click the link, now...
Fibromyalgia: An Epic Tale
In the How Can We Help? section of our patient questionnaire, Nicole had written Im in constant pain as long as I can remember and Im so tired I cant even think straight. Even as I welcomed her to our center, I noticed how slowly she moved, her muscles stiff. The deeply etched lines around her eyes revealed a daily struggle with constant pain. And yet she was young, not yet 40.
Before I could ask her anything, Nicole initiated the conversation. I dont mean to be rude, but youre my sixth doctor and if you want to tell me this is all in my head or that Im depressed, Ill save you the time and me the money and Ill leave. I read an article about fibromyalgia and I think thats what I have. The first four doctors told me my tests were normal and to take it easy. The fifth said I was depressed and to take an antidepressant. Of course Im depressed. Im in pain every single day.
I leaned back in my chair to get comfortable. To do this right would take some time. OK, lets take it slowly and pretend your life is on videotape. Press the rewind button and go back to a time when you felt just fine. No pain, energy good, no health issuesnothing. A time when you took good health for granted, like people who feel fine usually do. Nicole was silent for almost a full minute as her eyes filled with tears. Im sorry, doctorIll get control in a minute. She fumbled for some tissue and sighed slowly. Its just that Im realizing how long Ive been feeling this way. How many days Ive woken up in pain. How manyyears, actually.
OK, so were back now in time. Pain free. When is this? Where are you in your life? Oh, you wont have time for this. Its really too long Please. When?
I think maybe just before the time my mother was dying. It was terrible. She had cancer, Dad had died the year before, and there was only me to take care of her. Frank, thats my husband, had lost his job and we were living on my income and his unemployment checks. Frank Jr was five maybe six and sick all the time with his tonsils. I was always in a doctors office with someone and we came this close (she held up two fingers) to losing our home.
And you started hurting? It seemed like nothing at firstlike the aching when you get the flu. Frank would rub my neck and back and Id feel OK, but in the morning Id wake up and think: Why am I still so tired? And then, just walking to the bathroom I felt old, like I was coming apart. This went on for weeks and I thought, Im only 33. What if I live the next 40 years feeling like this?
And then your mother passed away? And your son got better and is now how old? 13? Nicole nodded. And your husband finally got a job? Yes, but our marriage didnt survive. He was drinking and getting abusive. He started reminding me of my father and I wasnt going that route again. I dont even want to talk about my childhood. But it does sound like your life regained some semblance of order.
She smiled. I really didnt do too badly for a single mother. I went back to school, got a degree in business. Now I make a good living, though I struggle through every day, especially mid-afternoon, when I feel like a truck hit me. My son is my best friend and doing very well in school. Im sure hes really tired of hearing me complain about how much I hurt. And hows the job?
She laughed for the first time since wed met. Stress seems to follow me like a shadow. I went into PR and youd never believe the stress. My supervisor herself is sick all the time from the stress she says her VP gives her. And the clients! Its always more, more, more. You dont need to hear all about this. Just believe me, every day is a battle.
We talked about some details of her childhood and adolescence, and then went over other symptoms that had started cropping up over the years. Chronic sinus congestion, irritable bowel, PMS, poor concentration. Despite entering a new and promising relationship, she told me she had no interest in sex. I know hes going leave me. Im no fun to be around. And then she paused. I cant believe my body is such a wreck. And I cant imagine what its like to feel well.
I looked over all the records shed brought with her. It came as no surprise that all of her tests were normal. During my physical exam, 18 of the 18 hallmark fibromyalgia tender points were so painful to light pressure that minutes after the exam she said she was still hurting. Is it hopeless? Am I really crazy? Reassuring her that not only was she perfectly sane, but that all her symptoms were quite genuine, I agreed that the only reason she could be called depressed was a completely rational response to feeling awful day after day, without light at the end of the tunnel.
Fibro is the bodys response to chronic stress
Then Nicole and I spent some time discussing the human bodys physical response to chronic stress. Initiated in the brain, which sends signals to the adrenal glandwhich in turn releases several hormones that produce our fight-or-flight responsethis bodily response, I explained, was meant to be a brief on-off reaction lasting just a few minutes. The amount of time it takes you to escape a mugger or veer your car away from a potential accident. If you picture this stress response as a switch, its certainly not meant to remain in the on position day in and day out. Like it is with me?
Exactly. And what happens next is that the body sends you symptoms of distress. These signals mean theres trouble somewhere. Symptoms dont necessarily mean you have a disease. Theyre a signal that something needs attention. But if you try to get help with the signals, like I did, and you dont get any help? Well, your body starts undergoing changes. And those changes, like the PMS, or the brain fog, or the constant tenderness of your muscles, and any of a dozen other symptoms are fibromyalgia.
You got it. Fibromyalgia means muscle pain in Greek. So you see, for a lot of doctors, fibromyalgia doesnt fulfill what we learned in medical school about the definition of disease. Its not an autoimmune disorder. Its not an infection. Its not contagious. No one ever dies of it. The blood tests, x-rays, even biopsies that we use to diagnose other diseases are all normal. But obviously, its something. You feel terrible! And, there are ten million of you all out there.
Nicoles treatment plan
We spent the rest of her visit going over a treatment plan that would slowly but surely move her body out of constant stress mode. I asked three things of Nicole before we met again:
First, I wanted her to carefully review her life and examine all sources of stress. Maybe it would be reconsidering her job, a change to a less stressful firm. Some companies seem to pride themselves in creating stress as a way of life for their employees. She should practice the word no (pronounced no) when others piled demands on her. And she was to start some pleasurable activities. A morning walk. Time spent reading. Going somewhere with her son. Some very limited gentle exercise.
Second, I wanted her to take a combination of conventional medicines and some nutritional supplements. I warned her in advance that it would seem like a lot of pills to swallow, but these werent forever. My goal was twofold. I wanted her symptoms relieved: better sleep, less pain, better mood, no PMS. But I also wanted to start repairing some of the damage to her body that the years of chronic stress had inflicted.
Third, I wanted her to begin sessions with a deep-tissue massage therapist or an acupuncturist. I told her that it was important to know the sensation of feeling good again of being pain-free, even if at first it was only temporary. She needed this sense of hope, a taste of the possibilities of wellness that lay ahead.
For me to tell you that Nicoles fibromyalgia was cured in three or four weeks would not only be deceptive, but just plain silly. If only life worked such miracles! But after just three weeks on the plan, Nicole told me she was undeniably aware of changes going on in her body. And these were changes for the better.
As months passed and I saw less and less of Nicole, I learned from the other therapists in my office what was happening. Shed left her job and found something for less money, but with a fraction of the pressure. She reframed her life to pay attention to a healthful diet and regular exercise, and even took enough yoga classes to become one of the instructors. During brief follow-up visits with me for a cold or a Pap smear, we kept trimming her medication and supplement list until she was down to some basic vitamins and a healthy bone supplement.
And her fibromyalgia began drifting to the back burner of her life. One year later, this is what Nicole told me: Its not gone, like gone-gone, but I rarely notice any muscle pain anymore. And my energy has zoomed up. But the muscles in my neck are like radar. If they start tensing up, I scan the horizon. OK, I ask myself, whats going on in your life? I realized months ago that there will always be stuff happening in the world to stress you out. Thats life. But you can choose not to give in to the stress. You beat it, you get rid of it. Or itll kill you.
Fibromyalgia: An Epic Tale
In the How Can We Help? section of our patient questionnaire, Nicole had written Im in constant pain as long as I can remember and Im so tired I cant even think straight. Even as I welcomed her to our center, I noticed how slowly she moved, her muscles stiff. The deeply etched lines around her eyes revealed a daily struggle with constant pain. And yet she was young, not yet 40.
Before I could ask her anything, Nicole initiated the conversation. I dont mean to be rude, but youre my sixth doctor and if you want to tell me this is all in my head or that Im depressed, Ill save you the time and me the money and Ill leave. I read an article about fibromyalgia and I think thats what I have. The first four doctors told me my tests were normal and to take it easy. The fifth said I was depressed and to take an antidepressant. Of course Im depressed. Im in pain every single day.
I leaned back in my chair to get comfortable. To do this right would take some time. OK, lets take it slowly and pretend your life is on videotape. Press the rewind button and go back to a time when you felt just fine. No pain, energy good, no health issuesnothing. A time when you took good health for granted, like people who feel fine usually do. Nicole was silent for almost a full minute as her eyes filled with tears. Im sorry, doctorIll get control in a minute. She fumbled for some tissue and sighed slowly. Its just that Im realizing how long Ive been feeling this way. How many days Ive woken up in pain. How manyyears, actually.
OK, so were back now in time. Pain free. When is this? Where are you in your life? Oh, you wont have time for this. Its really too long Please. When?
I think maybe just before the time my mother was dying. It was terrible. She had cancer, Dad had died the year before, and there was only me to take care of her. Frank, thats my husband, had lost his job and we were living on my income and his unemployment checks. Frank Jr was five maybe six and sick all the time with his tonsils. I was always in a doctors office with someone and we came this close (she held up two fingers) to losing our home.
And you started hurting? It seemed like nothing at firstlike the aching when you get the flu. Frank would rub my neck and back and Id feel OK, but in the morning Id wake up and think: Why am I still so tired? And then, just walking to the bathroom I felt old, like I was coming apart. This went on for weeks and I thought, Im only 33. What if I live the next 40 years feeling like this?
And then your mother passed away? And your son got better and is now how old? 13? Nicole nodded. And your husband finally got a job? Yes, but our marriage didnt survive. He was drinking and getting abusive. He started reminding me of my father and I wasnt going that route again. I dont even want to talk about my childhood. But it does sound like your life regained some semblance of order.
She smiled. I really didnt do too badly for a single mother. I went back to school, got a degree in business. Now I make a good living, though I struggle through every day, especially mid-afternoon, when I feel like a truck hit me. My son is my best friend and doing very well in school. Im sure hes really tired of hearing me complain about how much I hurt. And hows the job?
She laughed for the first time since wed met. Stress seems to follow me like a shadow. I went into PR and youd never believe the stress. My supervisor herself is sick all the time from the stress she says her VP gives her. And the clients! Its always more, more, more. You dont need to hear all about this. Just believe me, every day is a battle.
We talked about some details of her childhood and adolescence, and then went over other symptoms that had started cropping up over the years. Chronic sinus congestion, irritable bowel, PMS, poor concentration. Despite entering a new and promising relationship, she told me she had no interest in sex. I know hes going leave me. Im no fun to be around. And then she paused. I cant believe my body is such a wreck. And I cant imagine what its like to feel well.
I looked over all the records shed brought with her. It came as no surprise that all of her tests were normal. During my physical exam, 18 of the 18 hallmark fibromyalgia tender points were so painful to light pressure that minutes after the exam she said she was still hurting. Is it hopeless? Am I really crazy? Reassuring her that not only was she perfectly sane, but that all her symptoms were quite genuine, I agreed that the only reason she could be called depressed was a completely rational response to feeling awful day after day, without light at the end of the tunnel.
Fibro is the bodys response to chronic stress
Then Nicole and I spent some time discussing the human bodys physical response to chronic stress. Initiated in the brain, which sends signals to the adrenal glandwhich in turn releases several hormones that produce our fight-or-flight responsethis bodily response, I explained, was meant to be a brief on-off reaction lasting just a few minutes. The amount of time it takes you to escape a mugger or veer your car away from a potential accident. If you picture this stress response as a switch, its certainly not meant to remain in the on position day in and day out. Like it is with me?
Exactly. And what happens next is that the body sends you symptoms of distress. These signals mean theres trouble somewhere. Symptoms dont necessarily mean you have a disease. Theyre a signal that something needs attention. But if you try to get help with the signals, like I did, and you dont get any help? Well, your body starts undergoing changes. And those changes, like the PMS, or the brain fog, or the constant tenderness of your muscles, and any of a dozen other symptoms are fibromyalgia.
You got it. Fibromyalgia means muscle pain in Greek. So you see, for a lot of doctors, fibromyalgia doesnt fulfill what we learned in medical school about the definition of disease. Its not an autoimmune disorder. Its not an infection. Its not contagious. No one ever dies of it. The blood tests, x-rays, even biopsies that we use to diagnose other diseases are all normal. But obviously, its something. You feel terrible! And, there are ten million of you all out there.
Nicoles treatment plan
We spent the rest of her visit going over a treatment plan that would slowly but surely move her body out of constant stress mode. I asked three things of Nicole before we met again:
First, I wanted her to carefully review her life and examine all sources of stress. Maybe it would be reconsidering her job, a change to a less stressful firm. Some companies seem to pride themselves in creating stress as a way of life for their employees. She should practice the word no (pronounced no) when others piled demands on her. And she was to start some pleasurable activities. A morning walk. Time spent reading. Going somewhere with her son. Some very limited gentle exercise.
Second, I wanted her to take a combination of conventional medicines and some nutritional supplements. I warned her in advance that it would seem like a lot of pills to swallow, but these werent forever. My goal was twofold. I wanted her symptoms relieved: better sleep, less pain, better mood, no PMS. But I also wanted to start repairing some of the damage to her body that the years of chronic stress had inflicted.
Third, I wanted her to begin sessions with a deep-tissue massage therapist or an acupuncturist. I told her that it was important to know the sensation of feeling good again of being pain-free, even if at first it was only temporary. She needed this sense of hope, a taste of the possibilities of wellness that lay ahead.
For me to tell you that Nicoles fibromyalgia was cured in three or four weeks would not only be deceptive, but just plain silly. If only life worked such miracles! But after just three weeks on the plan, Nicole told me she was undeniably aware of changes going on in her body. And these were changes for the better.
As months passed and I saw less and less of Nicole, I learned from the other therapists in my office what was happening. Shed left her job and found something for less money, but with a fraction of the pressure. She reframed her life to pay attention to a healthful diet and regular exercise, and even took enough yoga classes to become one of the instructors. During brief follow-up visits with me for a cold or a Pap smear, we kept trimming her medication and supplement list until she was down to some basic vitamins and a healthy bone supplement.
And her fibromyalgia began drifting to the back burner of her life. One year later, this is what Nicole told me: Its not gone, like gone-gone, but I rarely notice any muscle pain anymore. And my energy has zoomed up. But the muscles in my neck are like radar. If they start tensing up, I scan the horizon. OK, I ask myself, whats going on in your life? I realized months ago that there will always be stuff happening in the world to stress you out. Thats life. But you can choose not to give in to the stress. You beat it, you get rid of it. Or itll kill you.
Fibro affects more than 15 million people, 95% of them women.
And though theres a Fibromyalgia Awareness Month each year, many sufferers who have lived with widespread muscle pain for decades are already plenty aware of their fibro. Then there are others, like the 71-year-old woman I saw last week whose fibro began when she was about 25. After several doctors told her it was all in her head, she accepted this hogwash as truth.
A half century of constant daily pain is so unimaginable that simply for her we should all learn more about fibro and share the information. You can get an idea of the frustration fibro patients feel by looking at websites like Fighting Fatigue, the National Fibromyalgia Association, and Focus on Fibromyalgia Inc (better known by its web address: fibromyalgiasucks.org and, yes, t-shirts are available).
Doctors who care for people with undiagnosed fibro are almost always no help whatsoever.
Patient surveys confirm that the typical woman with fibro sees five physicians before she actually learns she has fibromyalgia. Until the internet increased awareness of the condition, most gave up after two or three doctors and accepted pain as their lot in life.
For the diligent ones, that fifth doctor probably said something like: Well, Im sorry to tell you this. It appears you have fibromyalgia. We dont know much about it. Heres an antidepressant. Go exercisethats supposed to help. Since its not a disease, theres really not much we can do about it.
And because fatigue accompanies fibro pain, when the person with fibro tries to exercise, she finds she can barely manage a fraction of what she handled with ease just a few years earlier. And thats it. Pain seems to be her lot in life.
In fact, Fibromyalgia Awareness Month needs to be directed at the entire medical profession, including chiropractors. I have some experience in this area. During the past few months, Ive been in different parts of the country giving lectures to physicians about fibromyalgia, and their overall lack of knowledge is appalling.
Most of the doctors Ive met say they never see fibro or at the most have one or two patients, whom they refer to rheumatologists. Many still believe theres no such condition and consider it basically psychiatric (and refer their patients to a psychiatrist). These are actual quotes from physicians Ive met with and they are wrong, wrong, wrong.
Remember the game hot potato?
Thats the way most fibro patients are treated, tossed around from one medical professional to the next.
Many rheumatologists also believe fibro is psychiatric. Psychiatrists dont understand fibromyalgia at all and wonder why the rheumatologist sent the patient. After realizing the patient referred to them for alleged depression is basically (and reasonably) depressed because of chronic pain, the psychiatrist refers her to a pain management specialist. Pain specialists regard fibro patients as needy and time consuming.
Psychiatrists may not be recognizing vast numbers of fibro patients because the profession, fearing malpractice over inappropriate behavior, has become phobic about performing physical examinations on their patients. Fibromyalgia is painfully (pardon the pun) simple to diagnose. All thats necessary is for the doctor to apply firm pressure to the 18 classic tender points of fibromyalgia and watch the patients startled reaction to the jolt of pain the pressure induces.
What a mess! And believe me if any of these doctors actually had fibro, hed be in the back seat of his BMW being driven to Mayo Clinic for help. What he doesnt know is that Mayo would turn him awaytheyre already swamped with fibro calls and would tell him that his local doctor should be able to manage your case as effectively as they can.
But doctors are not managing fibro because it doesnt fit with their training.
Most dont get it, and the reason for this is a single glaring deficiency in medical education: that symptoms without actual disease somewhere in the body are not to be taken seriously as symptoms caused by a specific disease. Headaches are thus less compelling without a brain tumor to treat. Back pain is of routine interest until disc surgery is in order.
When you tell your doctor about your symptoms (e.g., I have a headache, or Im tired), your physician is trained to look for an underlying disease responsible for your discomfort. He or she orders testsblood tests, imaging, biopsiesa cornucopia of tests. If the tests show something, treatment will be started with the goal of curing you and relieving your symptoms.
If, however, the tests come up normal, to the docs way of thinking his or her responsibilities are basically over. Youre been reassured your symptoms are harmless, maybe received a prescription for a pill that might relieve (or mask) your symptoms. Intellectually, your physician is off the hook. Occasionally you might be referred to another physician who orders a different battery of tests, but generally doctors become less and less interested in you because to their way of thinking, theres nothing wrong with younothing to cure.
Ive had patients tell me that other doctors asked them Arent you pleased to learn nothing serious is going on? You should be relieved to hear we cant find anything wrong with you. All your tests are normal.
But youre not normal. If you have undiagnosed fibro youre thinking, All this pain, this fatigueit cant be normal. If you know you have fibro and youre told, Theres nothing we can do, then life looks very bleak indeed.
But please believe methere is hope for fibro patients.
To understand fibromyalgia and why so many doctors tell their fibro patients, All your tests are normal, you need to think about serotonin, the brain chemical that acts as a buffer against stress.
Women have lower levels of serotonin than men, and as a consequence theyre more vulnerable to stress of any kind. Some women have it worse, coming from families at the very low end of the serotonin curve, and they have an even higher rate of low-serotonin disorders.
By way of background: women whose low serotonin makes them particularly susceptible to stress are sensitive to everything. They feel potentially painful stimulus (like an inflated blood pressure cuff) more strongly than others and are unusually sensitive to certain foods, chemicals, and drug side effects. Theyre also extremely aware of changes in their body, know their hormones, feel when a food is wrong for them, and sense negative energy from an indifferent or impatient physician. Interestingly, low-serotonin women are often creative and highly intuitive, frequently needing to explain whats obvious (to them) to their otherwise clueless life partners.
Men, of course, are not immune to low-serotonin disorders, but statistically women far outnumber them.
Its also worth noting that all the low-serotonin disorders were once thought to be psychological in nature. The list includes depression, anxiety, panic attacks, obsessive thinking, compulsive behaviors, social anxiety, post-traumatic stress disorder, anger issues (common in men), and self medication tendencies using food (especially carbs), alcohol, and other drugs.
Why are the herb St. Johns wort and the SSRI family of meds (Prozac, Zoloft, Lexapro, et al) effective against these disorders? Because they boost serotonin levels within the brain.
How do you feel without enough serotonin?
The physical manifestations of low-serotonin disorders occur when your body itself experiences unchecked stress. Your fight-or-flight response is meant to be a quick on-off system that gets you out of trouble. Its supposed to shoot you full of adrenaline so you can move with lightning speed to avoid an oncoming car, for example. But for stressed-out low-serotonin women, its like the fight-or-flight on button is pressed down and held there, putting their stress response systems into constant overdrive. After a time, the body simply cant cope.
Most people first notice the physical manifestations of stress as constant tension in the muscles of their neck and upper back. These muscles fan out over the top of the head (tension headaches), jaw (jaw-clenching TMJ), and face (pressure sensation, often incorrectly diagnosed as sinus headache). Migraine headaches are involved here, too, when arteries deep in the brain start contracting in response to stress messages. If you observe women in a workplace, someones always reaching behind to massage a knot in her shoulder or tilting her head back to dig in and loosen her neck muscles.
When muscles start tightening up over your entire body, youre entering fibromyalgia territory.
The extremely painful tender points of fibro are small areas on bones where muscles are attached. Once tender points are activated, it becomes painful to sit for long periods, find a comfortable way to sleep, or even to fall asleep at all. A diagnosis of fibromyalgia depends on the existence of these tender points, and doctors who understand fibro will apply about ten pounds of fingertip pressure to them to illicit a response like Gee doc, that REALLY HURTS!
Fibro diagnosis in a nutshell
Three or more months of widespread muscle pain and chronic tiredness, 11 of 18 tender points elicit an Ow! response and the tender points have a right-left symmetry and the tender points are above and below the belt-line.
Each of these low-serotonin symptoms is a physiological response to stressnot a disease. As crazy as it may seem, your body is reacting in the way its supposed to react, given the excessive stress and insufficient stress buffer. But because your bodys response is not a disease, finding a cause for these symptoms flies under the radar of blood tests, x-rays, and other diagnostic tests.
In other words: Your tests are normal.
Fibro is one of the low-serotonin disorders, a group of often disabling conditions that manifest themselves among genetically susceptible people (mainly women) after a period in their lives of unchecked stress.
Because of the relationship between serotonin and estrogen, the severity of any low-serotonin disorder (but especially fibro) parallels your estrogen level. Hence, symptoms worsen during PMS days and perimenopause, when estrogen levels are dropping. Most women feel a shade better the week after their periods, when estrogen (and serotonin) levels are rising. Most patients feel better in summer than winter because sunshine boosts serotonin levels.
Low-serotonin disorders can begin at any age when stress exceeds stress buffer. My youngest fibro patient was eight years old. Serotonin disorders like childhood depression and anxiety have reached epidemic proportions.
From a biographical perspective, fibromyalgia usually follows a year from hell in a womans life, a perfect storm of a stressful job, stressful family situation, and, these days, a stressful world.
Time heals all wounds ought to apply. Most stressful life events recede, given enough time. But for fibro patients, theyre replaced by the stress of fibromyalgia itself with its relentless widespread pain, profound fatigue, unrefreshing sleep, and a medical system (We cant find anything wrong with you) that doesnt know how or exactly what to treat (Im referring you to a ). Soon the quest to simply feel normal again becomes lifes major source of stress.
Fibro begins with stressors that trigger painful muscle contractions. Now that same pain exacerbates stress, which further increases pain levels: an evil snowball of pain, rolling down a mountain, larger and larger, out of control.
The Fatigue Part
Right up there with pain, the second most common symptom of fibromyalgia is a constant sense of profound exhaustion. Disability insurance companies, people who dont have fibro, and (sadly) most doctors cant appreciate the extraordinary degree of this fatigue.
Imagine waking up achy all over, feeling as if you never really slept, and then staggering through your day before crashing between 2 and 5 pm with even more fatigue.
If you actually have fibro, at this point you might try fortifying yourself with a Starbucks, but what you really want is to crawl into bed. If youre still able to work, you plan no evening activities and you say sorry, I cant to most invitations. If youre not able to work, your house is a mess and your significant other is not happy with you lying around all day despite the fact that doctors have told you all your tests are normal.
Its taken scientists about 40 years to figure out where this fatigue comes from. In the 1960s, when fibromyalgia itself was barely known, reports of patients who were constantly tired and felt flu-like achiness and poor sleep began to appear in medical journals. All the tests for fatigue were negative for the usual conditions, and some years later the mysterious condition was nicknamed yuppie flu. Later it was called chronic fatigue syndrome (CFS).
In an attempt to find a culprit for CFS, researchers pointed to variety of infections, including chronic mononucleosis, herpes, cytomegalovirus, candida (a yeast), and the then newly discovered Lyme disease, but nothing was consistently shown to cause CFS. A patient support group named their condition chronic fatigue immune dysfunction syndrome (CFIDS) based on the belief that a compromised immune system was the cause, but again, this wasnt supported by research.
Now its pretty much agreed that the fibromyalgia and CFS are one and the same.
Several factors occur simultaneously to induce fibro.
The most significant is how the human body responds to chronic stress. Please dont feel bad if you have to read this next explanation a couple of times. Medical students must memorize all this and dont enjoy it one bit.
As we discussed earlier, when you experience a stressful event you go into a temporary fight-or-flight response. The full pathway, which operates at lightning speed when needed, looks like this:
A stress message from your conscious brain is sent to the brains hypothalamus, which shoots it over to the brains pituitary (the master gland), which releases hormones that stimulate the adrenal glands (your stress-response glands). In response, the adrenals release their well-known hormone adrenalin, which puts your body into temporary overdrive. Its this rush of adrenalin that gives a woman the super-human strength to lift a car off her trapped toddler.
This pathway is called the hypothalamic-pituitary-adrenal axisHPA axis, for short.
Now imagine a sign dangling on your HPA axis that reads WARNING: for emergency use only. Thats the way it should be. The delicate HPA axis is protected by the brain chemical serotonin, which buffers stress. If youre a low-serotonin person and lifes stresses (bad boss, financial strain, sick child, too much responsibility) exceed your stress buffer, your HPA axis is activated again and again. If your stressful life simply wont let up, you exhaust your HPA system.
When you see the phrase adrenal fatigue or a natural practitioner says youve fried your adrenals, this is whats being described. Conventional physicians rarely test patients for adrenal fatigue and generally are unaware of its existence. Thats because adrenal fatigue is not a disease but a physiologic response (your overused HPA axis) gone awry.
With longer-lasting chronic stress (months on end of real-life stressors, but not the car-lifting type), a second adrenal hormone, cortisol, is triggered along with hormones from your thyroid gland. The thyroid controls the rate of your metabolismhow slow or fast your incredibly complex body will run.
During the initial days and even weeks of stress, youll have elevated levels of both thyroid and adrenal hormones, the increase being part of your normal stress response. But over timeand during the relentless stress of fibromyalgiathe HPA axis, including the thyroid and even sometimes your sex glands (ovaries or testicles, also under pituitary control) begin to become exhausted as well.
Thus the primary source of fatigue in fibro is the exhaustion of the HPA axis + thyroid gland, which started out trying to protect you but simply dropped from exhaustion along the way. And this intricate action flies under the radar of conventional doctors testing for fatigue. Its the old your tests are normal all over again.
Heres how stress symptoms break down.
Thyroid fatigue produces pervasive tiredness, dry skin, dry hair, weight gain, and cold hands and feet. The standard test result for an underfunctioning thyroid is high TSH (thyroid-stimulating hormone). But because TSH comes from your pituitary and its exhausted too, your TSH is spuriously low. And patients hear, You cant have an underactive thyroidyour TSH is low.
Adrenal fatigue also brings overwhelming fatigue, along with a mid-afternoon crash of still more fatigue between 2 and 4 pm. This occurs because you have a one-day supply of hormones in your adrenal glands that need to be restored each night during sleep. They arent replenished if, like most fibro patients, youre not sleeping well.
Ovarian fatigue leads to irregular periods, worsening PMS, infertility issues, and low or nonexistent sex drive.
In addition to exhaustion of the HPA axis, there are three unrelated sources of fibro fatigue.
Chronic pain from any sourcewhether fibro, arthritis, or canceris itself exhausting.
Fibro patients sleep very poorly. Unable to find comfortable positions in bed, they rarely achieve the deep, restorative sleep necessary for normal next-day activities. They awaken exhausted, feeling as though they hadnt slept at all.
Eventually the muscles of fibro patients atrophy. Because theyre exhausted and in pain, many who suffer with fibro live a bed-to-chair existence. Not moving just makes fatigue worse.
One last word about the long-ago suspected immune dysfunction of fibro-CFS. A well-conducted clinical study at Chicagos DePaul University some years ago did come up with two positive tests among their hundreds of patients. One test showed evidence of adrenal fatigue. The other revealed minimal dysfunction of the immune system, basically the same abnormalities youd expect if an immune system were experiencing unchecked stress and wasnt functioning efficiently.
In other words, the mono, herpes, candida, et. al., werent causing the fibro-CFS. It was the reverse. The stress of fibro-CFS was impairing the immune system, allowing the emergence of these minor players. For decades, scientists were sidetracked by these microorganisms, believing them to be the cause of CFS, rather than the result.
Complicated, eh? Its taken decades to figure this out.
Lets talk about women and pain, starting with a fact that many doctors acknowledge but prefer not to discuss: Numerous well-conducted studies have shown that all chronic pain patients, but especially women, are seriously undertreated by physicians.
This can be any type of chronic painfrom fibromyalgia, arthritis, cancer, an autoimmune disorder like lupus, anything. If youre a woman, expect to get short shrift from your doctormale or femalewhen it comes to pain control.
Are the reasons for this rooted in a heritage that (wrongly, in this case) admires stoicism? Whatever the cause, too many physicians feel annoyed by the chronic pain patient, quickly labeling her as needy or a hypochondriac, especially if she has fibro with its raft of negative tests.
Young girls probably pick up on this minimizing of pain early in life. Her sports injury couldnt possibly be as painful as her brothers, because, well, she couldnt have (shouldnt have?) play as hard. Painful menstrual cramps are another example. Teenage girls regularly faint from them, but often hear Take a Midol and get used to it.
The irony is that women are generally more articulate about their symptoms than men, willing to discuss pain with a sympathetic physician who might offer relief. Too frequently, though, women in pain leave the doctors office with the sense that, wherever the pain is coming from, theyre going to have to learn to live with it.
With this pervasive gender prejudice, you can bet getting adequate pain relief for fibromyalgia (affecting females 95% of the time) is extremely rare. Remember, because fibro doesnt show up on diagnostic tests, the vast majority of doctors will not write a decent pain medication prescription for this non-disease.
So what kind of treatment can one of the roughly 20 million fibromyalgia patients expect to receive when, after seeing the (statistically-based average of) five physicians who dont know whats wrong with her, finally finds one who actually diagnoses her fibro?
Disappointment.
The average fibro patient takes an astonishing number of prescription drugs(usually about five) and, amazingly enough, not one is an actual pain medication.
Five individual prescriptions is a huge number. A doctor can bring high blood pressure under control with one, perhaps two, pills a day. High cholesterol? One. Fibro, five. Why so many? Because hes treating symptoms, not any specific illness, and fibro brings with it a multitude of symptoms.
But what about the ads you see on TV for fibro pain medications, such as Lyrica? These arent actually pain meds (you wouldnt take Lyrica for a toothache), but various chemicals with many effects on the body (both good and bad), one of which can reduce fibro pain somewhat. If the good effects outweigh the bad, you might feel a little better.
On the other hand, a true pain med (an analgesic) stops pain in its tracks, whether the pain is from an abscessed tooth, cancer, a migraine, or fibro. And this is the one type of medication a fibro patient usually doesnt receive.
Below well talk about why this is so, along with those five fibromyalgia prescriptions patients do get. In the meantime, learn about the organization For Grace (forgrace.org), founded by a badly injured former dancer, Cynthia Toussaint, who writes:
my doctors completely ignored my symptoms. For the next 13 years, they told me my condition was all in my head while the disease with no name mercilessly spread throughout my entire body.
She realized how poorly women in pain were served by physicians and set about to increase the awareness of the public, physicians, politicians, and health insurers. A good person, Ms Toussaint. Tough, despite her relentless pain.
Conventional Treatment (When You Can Find It)
Patients and physicians unfamiliar with fibromyalgia are rightfully a bit shocked when they learn the average fibro patient uses five prescription drugs to make it through her day. Not one of these is for fibro, in the sense of a cure, the way penicillin cures a strep throat. The medications dont even actually treat fibro, the way insulin treats diabetes. At best, the drugs (sometimes) reduce symptoms.
To be fair, doctors face a real challenge when treating fibro:
First, fibro patients are extremely chemically sensitive, probably related to low levels of stress-buffering serotonin. If anyone is going to experience a side effect from medications, it will be a fibro patient.
Second, fibro drugs actually have more side effects than most other prescription medicines. Ive personally sampled them all, and I dont regard myself as particularly chemically sensitive, but all things considered I would have preferred sampling a selection of Cote du Rhone wines. The thought of taking five of these drugs simultaneously (which I did not attempt) curls my toes.
There are three FDA-approved drugs for fibromyalgia. Two of them, Savella and Cymbalta, were originally developed as antidepressants, but were later found to have fibro pain-relieving benefits. Physiologically, they do correct the basic defect occurring in fibromyalgialow levels of the brain chemicals serotonin and norepinephrineand work for about half the women who try them. The other half are stymied by side-effects including nausea, headaches, palpitations, and sweating.
The third FDA-approved medthe one you see in TV adsis Lyrica, one of several in a class of anti-epilepsy drugs that some years ago was found to have pain-reducing qualities. Lyrica works for about a third of my patients who try it, the other two-thirds abandoning it due to the side effects dizziness, brain fog, double vision, and weight gain.
Everything else prescribed for fibromyalgia falls under the heading FDA off-label which translates to Lets try this one and see what happens.
Painkillers The acetaminophen family (Tylenol, etc.): useless. The NSAID family (ibuprofen): useless. The tramadol family (Ultram): can be helpful. The opioid family (Vicodin, OxyContin): helpful, but see my comments below.
Muscle relaxants (Flexeril, Skelaxin, Soma): marginally helpful, but cause drowsiness, dry mouth, and other side effects.
Sleeping pills (Ambien, Lunesta, etc.): helpful because deeper sleep reduces fibro pain.
Antidepressants (Elavil, Trazodone, Prozac, Effexor, etc): sometimes helpful, but inconsistent and may have unpleasant side effects (dry mouth, drowsiness, brain fog, flat emotions, weight gain).
Energizers (Provigil, Nuvigil): sometimes helpful in boosting daytime energy and alertness. Side effect is very straightforward: think too much Starbucks.
As you may have guessed, when you take five meds the side effects are additive, meaning the drowsiness from medication A is added to the dry mouth of B and the weight gain of C. In the parlance of physicians, the current approach to fibro is called shotgun therapy with a load of dirty (i.e., side effect-laden) drugs.
What this really means is that the pharmaceutical industry may not be the best place to look for fibro treatment. Most physicians work with a single toolboxtheir prescription pads. Maybe its time to look for a different one.
Lets close this section with a topic that is reallyand I mean trulycontroversial among physicians.
Because fibromyalgia is a chronic pain syndrome and not an actual disease, the ideal treatment should be the best available pain medication.
And the best available pain medications are the opioid family (Vicodin, Percocet, and the drug that Rush Limbaugh bought in a Dennys parking lot, OxyContin).
US physicians are extremely reluctant to write prescriptions for opioid medications, fearing addiction (though the addiction rate among chronic pain patients is less than 1%), street re-selling, and so forth. They also fear a variety of government agencies that monitor physicians and their opioid prescription-writing habits.
And theres that gender bias here as well. An orthopedic surgeon might readily prescribe Vicodin to a guy with chronic back pain, but a rheumatologist will virtually never give OxyContin to a woman with fibromyalgia. Dentists, on the other hand, are quite generous with Vicodin, and many patients have told me that their fibro melted away after taking Vicodin after dental surgery.
Opioid side effects include constipation, which is so universal that variations of opioid drugs are used for chronic diarrhea (Lomotil, paregoric), and brain fog or nausea.
But the opioid issue is argued heatedly among doctors. A few weeks ago, after a fibro meeting, when the topic was the chronic pelvic pain of fibromyalgia, one physician said Id rather schedule a hysterectomy on her than write a Vicodin prescription.
If I were one of his patients, Id keep a watchful eye on my uterus.
One of the best ways to envision fibro is as a generalized anxiety disorder of the muscles, initially triggered by a stressful event and then perpetuated by the pain of the muscles themselves.
Lets review exactly who and what were treating when we treat fibromyalgia:
A person, usually a woman, who is genetically more susceptible to stress because of an inherited low-serotonin stress buffer.
Before her fibro started, she likely experienced a protracted period of stressemotional or physicalwhich, due to her bodys constant fight-or-flight response, has tightened her muscles painfully and fatigued her stress-responding adrenal glands and thyroid.
She now she suffers widespread muscle pain, exhaustion, and unrefreshing sleep.
Although the specific triggering events may have receded, the stress from her current fibro (unrelenting pain, exhaustion, little help from doctors) keeps everything going. In addition, she may have heightened sensitivity to other yet undiscovered but correctable stressors, including diet choices, weather, shifting sex hormones, job, and relationships.
With this in mind, the fibro patient arrives at our center, WholeHealth Chicago, with her sheaf of normal test results. I always appreciate having this information as it saves unnecessary repetition of tests and thus money.
Usually, three more tests are necessary:
1. Neurotransmitter profile (measures levels of serotonin, norepinephrine, and other brain chemicals).
2. Adrenal hormone profile (measures the stress hormones DHEA and cortisol).
3. Basal body temperature-taking for thyroid testing.
4. And, if warranted, tests for food sensitivities (including gluten), vitamin D, and sex hormone levels.
Here are the first steps of non-prescription treatment
To raise serotonin: St. Johns wort, 5-HTP, B complex, fish oil.
To raise norepinephrine (if low): Brain Energy, a supplement containing the building blocks of norepinephrine.
Adren-Plus for adrenal support.
Theanine, a natural muscle relaxant and anti-anxiety supplement.
Magnesium, a muscle relaxant, for better sleep.
Vitamin D, which for unknown reasons helps fibro pain.
Diet is probably more of an issue with fibro than many doctors believe. More and more people (fibro or not) are being found to have gluten sensitivity, hypoglycemia (low blood sugar), or toxic food syndrome. Any of these can be a significant but hidden stressor to a fibro patient.
Hypoglycemia is an interesting trigger. Every time blood sugar drops, adrenalin is released to boost it back up, but adrenalin also causes more muscles to contract. I often recommend a food sensitivity elimination-reintroduction diet using the product Xymogen as a detoxifier. Also, by merely increasing protein and reducing high glycemic foods, you can treat hypoglycemia yourself.
There are simply no nutritional supplements capable of adequately controlling fibro pain. Depending on the patient, I often prescribe massage, chiropractic, acupuncture, or Healing Touch. However, since persistent pain is one of the stressors that keeps fibro going, pain must be brought under control.
I follow the American Pain Association recommendations of stepped pain control (start low, move up as needed) with low doses of tramadol, hydrocodone, or oxycodone. My goal is to see a fibro patient who self-scores her pain at a 9-10 level move down to a manageable 2-3 or better.
If basal body temp is low, add natural thyroid (prescription).
If cortisol levels are low, add cortisol (prescription).
If sleep is a major issue, a prescription sleep med (Ambien, Lunesta, trazodone).
If the patient is willing to try one of the new drugs for fibro, I recommend Savella, at half strength. If not tolerated, then Lyrica, again at half strength.
If PMS is a major stressor, either progesterone (prescription) or chasteberry.
If you have fibro, philosophically understanding whats occurring in your body is an essential part of treatment.
Like Nicole, once you pull back and see the larger fibro picture, youll realize that all your life you (and likely your mom) have been more susceptible to stress and more sensitive to physical sensation, like pain, than other people.
Youll come to see that fibro is not a disease but a defense (Freuds pupil Wilhelm Reich called it character armoring) and youll recognize that it wont develop into a disease but will remain what it isa stress response from helluntil you understand the message of this pain.
Your fibro appeared as a response to stressful factors in your life. Once youre pain-free and doing well, fine. But if fibro symptoms start to return, dont panic. Rather, regard them as a message that your body is perceiving stress from some source.
With a fibro-flare, its fine to restart meds and supplements, but this time, press the pause button on your life. Seriously reflect on the possible source triggering the return of your symptoms. Have you been neglecting your diet? Are you in a relationship or job that somehow your body knows is wrong?
Listen carefully for the message your body is trying to convey and act on it.
When you take steps to resolve these triggers, your muscles will slowly relax, the pain will recede, your body begins to heal, and many of the meds and supplements can be tapered off or even discontinued altogether.
In short, youll get your life back.
November 27, 2010 at 3:38 pm
This is a fantastic article. The most complete one that Ive read on-line.
Thank you for the great web-site. I will be checking in more often. I saw myself in this article several times and I was able to take notes to discuss with my doctor. Thank you. JH
2. Laurie Flom says:
December 7, 2010 at 10:16 am
While there are millions of (mostly women) people who suffer from the debilitating pain of fibromyalgia, I also know that it can be misdiagnosed. Sometimes,it is just the easy way out for a doctor.
I saw four doctors in the space of three years. The first doctor (a physiatrist) said I definitely had fibro, and proceeded to hand me prescriptions (a pain killer and an anti-depressant). Being a risk management specialist by trade, something just didnt seem quite right. I felt that after a 15 minute conversation, the diagnosis was just to quick and simple. A month later, I saw a fibro specialist who stated emphatically that I didnt have fibro but most likely candida. I took some medication for a couple of months and stayed away from foods with yeast, with no noticable result. Meanwhile, I was seeing a chiropractor and massage therapist, both of whom helped to relieve some of the chronic muscle pain I was experiencing. In Nov., 2009, I saw a third doctor who again stated emphatically that I had fibro. I walked out of his office with a fist full of prescriptions which included an anti-depressant, a muscle relaxer, a pain killer and a sleep inducer. The combination made me sick to my stomach but eventually seemed to help for about two months. Then, my body started violently reacting (heart rate of 150/110, dizziness, horrible achiness). The sleeping pill only provided sleep for about 3 hours at a time and the pain killer did not really ease my chronic muscle pain, so I weened myself off of these drugs.
I then started seeing an occupational therapist who has been trained in Feldenkrais technique. She has been a god-send on numerous fronts, but mostly because she provided me with self-correcting techniques to reduce the chronic muscle pain that has plagued me for about five years. It was she who handed me a September 2010 Chicago Tribune article on a doctor who is a member of Northwesterns Integrative Medicine group. I set up an appointment with him, and after hearing my long story, he suggested that we do an extensive blood test on my thyroid hormones. Guess what I was suffering from Hashimoto thyroiditis!, a very easily detected and cured ailment (I was diagnosed as being hypothroid 15 years ago and have been on Synthroid ever since but the single medication could not cure this condition). After seeing four doctors in three years, three of whom performed thyroid blood tests but only at the TSH and T4 levels, it was very clear that I did indeed have Hashimoto Thyroiditis. The numerous blood tests that I have had over the past four years all looked good, so the diagnosis was fibromyalgia. When this doctor decided to look deeper, he found the real problem. The doctor changed my thyroid medication and within two weeks, I feel like a normal person again (much, much lower pain levels, much less interrupted sleep, and a whole host of other symptoms have evaporated). Also, this doctor (John Stracks) teaches a four-part course on the relationship between pain and stress and its excellent.
So, Im finally feeling like a real person again. Im happier, my family is happier, everyone is happier. It took persistence, and the drive to find the root cause of why I felt so horrible, for me to finally, after all these years, understand and properly treat the problem.
Have a great day!
lol how funny!
If it's Dr. Edelberg who authored it, here's his intro page on his site: http://www.wholehealthchicago.com/about/david-edelberg/
oxo paula great info iam copying it al for future read! ty
I find that I do not handle stress very easily and take on more and more as I feel helpless if I am not in control of situations. You can say that I have not had the easiest of child hoods, but boy has it made me a responsible adult, sometimes to responsible. I stress about so many things that are out of my control and over the past few years I have had varying degrees of neck, shoulder, back , wrist and leg pain. I have also had some hormonal issues and pain near the ovary on my left side, have developed adult acne and suffered from a few migraines over the pasts few years. Sleeping successfully seems to be hit or miss. My doctor prescribed Rozerem for sleep but with my family history of addiction and depression I am terrified of pills. I also did not find many positive reviews on this medication so I am looking to take a more holistic approach. This article has been very helpful and has given me interesting insight into something that has been plaguing me for sometime. I look forward to learning more from this group!