Dear Fibromyalgia

Tag: fibromyalgia pain

A comprehensive look at Fibromyalgia pain, its symptoms, triggers, and effective strategies to manage and alleviate discomfort.

  • Why do Women incur Fibromyalgia with greater frequency than Men?

    Why do Women incur Fibromyalgia with greater frequency than Men?

    Fibromyalgia Vs Women

    The reasons that more women develop Fibromyalgia include, but are not limited to, the following physiologies and pathologies:

    The women’s pelvic girdle is more delicate than that of the men, wherein bigger bones and more massive ligaments provide a stronger platform for the upright post of the spine and a stronger tower for lifting, pushing, and pulling.

    Women are at greater risk for injury of the soft tissues, ligaments, tendons, muscles, and fascia, that maintain the integrity of their pelvic platforms. Unstable pelvic platforms induce scoliosis of the spine, which begets asymmetry of the shoulder girdles, which begets tilted heads.

    All of these body tower asymmetries cause the soft tissues of the body to struggle to maintain a medical center of gravity; as the body confronts the ambient gravitational field.

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    Unlike men, women inherit a genetic predisposition to a tissue variant called Joint Hypermobility Syndrome (JHS). This biological circumstance imbues the women’s body with more flexible ligaments than the men body. “Double jointness” is the layman term for this tissue variation.

    Fortunately, women have this trait because it helps to provide them with the ability to expand the pelvic girdle during the birthing process. Unfortunately, this tissue variant exposes the women’s body to greater degrees of permanent soft tissue injuries from mundane lifting and slipping accidents and also causes women to incur permanent pelvic girdle ligament injuries during the birthing process.

    British physicians are more knowledgeable about JHS, and most American physicians have never heard of this normal tissue variant. A collection of medical papers about the subject has been edited by Dr. R. Grahame, and this 2010 book is entitled “Hypermobility, Fibromyalgia, and Chronic Pain“.

    The women’s body secretes a hormone, Relaxin, at each men’s and during pregnancy. This hormone softens and loosens women’s ligaments, especially those of the pelvis, to prepare the women’s pelvis for childbirth. Over the years, each women’s ligaments are repetitively stressed by waxing and waning levels of Relaxin. Consequences to the integrity and stability of women’s bodies might be significant. I do not think that this issue of skeletal instability in response to Relaxin has ever been studied.

    Women experience and tolerate more chronic pain than men. Monthly menstrual cramps, Irritable Bowel Syndrome, “Endometriosis“, and Migraines are only some of the functional afflictions experienced by women to a greater degree than men’s.

    These Chronic Pain Disorders are caused by actual tissue dysfunctions, and behavioral changes noted in women when they are afflicted are a consequence of their disorders and not a cause of these disorders. Unfortunately, these disorders are soft tissue disorders, which are transparent to imaging studies. Additionally, there are no blood studies sensitive enough to mark the occurrences of these disorders.

    As a result of modern conveniences, present-day women are less physically active than their “paleo–sisters“, to coin a phrase. Men’s on the other hand continue their paleo-hunter/warrior activities with the assistance of modern warrior vessels called boats and ATVs and in modern war games called “sports”; in addition to continuing to perform laborious lifting and pushing activities at their daily “jobs”.

    Father Nature has fitted men with great muscle suites that inure their bodies against environmental assaults, and with robust ligaments that hold their joints and skeletons together.

    Both men and women suffer mechanical accidents and falls. The men’s body is better equipped to get up and start over again and without permanent soft tissue injury. Both men and women incur temporary incapacitating injuries and illnesses. It takes only two weeks of inactivity to lose significant muscle mass. At the end of a period of inactivity, men have lost muscle mass, but they started with a greater reserve; thank you testosterone.

    Autoimmune disorders such as Lupus, Rheumatoid Arthritis, and Multiple Sclerosis afflict women more than men’s, and for reasons known only by the Great Designer. These chronic pain disorders force many women into inactivity, with resultant loss of muscle mass and tone.

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    Chronic Pain, which is experienced by women more than men’s, is a profound disturber of restorative sleep. Loss of sleep generates daytime fatigue and disinterest in physical activities, which begets loss of muscle mass and tone. Loss of sleep causes mental depression and jumbles mental functions and cognition. Poor food choices and nutrient deficiencies can result.

    This essay is not intended to be an exhaustive list of all the multiple factors that contribute to the multifactorial disorder called Fibromyalgia. What has been presented are some of the highlights of causality. Each Fibronik, to coin a phrase, comes to the disorder via an idiosyncratic pathway and a unique admixture of physiological insults. This writing is intended to explain the principles by which Fibromyalgia evolves.

    Fibromyalgia is a condition of painful muscle spasms and ligament strains widespread throughout the body. Forget what you have been told about “brain plasticity” and “central sensitization“.

    These are tired unproven theories with a few interesting imaging studies and substance P measurements that demonstrate that the brain and spinal cord are being barraged with a constant attack of pain signals generated in a myriad of painfully spastic soft tissues throughout the body. The exact tissues that hurt when you press on them. Da!

    Fibromyalgia is a Chronic Pain Disorder caused by chronic repetitive stress. The chronic stressor is Gravity. Weak and spastic soft tissues struggling to hold the body tower upright in the face of Gravity are the true generators of Fibromyalgia pain.

    A deconditioned and fragile women’s body with an unstable skeleton and wobbly pelvic girdle platform has a greater battle with Gravity than does the men’s body; even an injured men body.

    Fibromyalgia is a disorder that begets itself. Injuries and illnesses cause pain and inactivity, which begets deconditioning, and increasingly weak and spastic soft tissues, which beget additional chronic pain, sleeplessness, and depression, which begets ……and so on. In the process, the Fibronik becomes more and more incapacitated.

    Any Fibronik who doubts this explanation might do well to spend an hour in a floatation chamber and note the instant pain relief.

    Indeed this is a gloomy scenario, but as with all medical disorders for which there are known causes, the causes suggest the cure.

    Nutrition, aqua therapy, yoga, massage, acupuncture, Tai Chi, walking, weight loss if obese, mindfulness therapies, herbs, Cannabis, fresh nutrient-dense juices, and other natural therapies offer the pathway to heal from Fibromyalgia.

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    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

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  • Does any Fibromyalgia Sufferer have advice for someone who was recently Diagnosed with illness?

    Does any Fibromyalgia Sufferer have advice for someone who was recently Diagnosed with illness?

    First of all, you haven’t changed. You’re the same person with the same condition, except now you have a label.

    I found that label very liberating because it showed me that I had a real disability and that I wasn’t “just making it up” or “being lazy” or such. Plus, now you can say “I have fibromyalgia” instead of “well I’m kinda really tired and, like, achy all over”, which sounds more convincing.

    Other stuff, in no particular order:

    • One of the most important ways to manage fibromyalgia is to pace yourself as much as possible. Don’t make yourself do all the things you think you “ought” to do.
    • Accept your limitations. Grieve for your health if you need to. It’s OK to have a sense of loss.
    • Accept help from people. Don’t let pride make you face this alone.
    • Focus on your priorities. Get the most important stuff done before you think about doing anything else.
    • Find an understanding doctor who can help you with pain relief and anything else.
    • Consider medicinal cannabis or CBD oil if it is available where you live. This often works well for fibromyalgia sufferers in particular.
    • If your mobility is affected, dont discount the idea of using mobility aids, a scooter or a wheelchair. I use an electric wheelchair and it is incredibly liberating. Mine is an ?th hand one that I bought on eBay, which made it much more affordable.
    • Finally, always count your blessings. Having fibromyalgia can feel outright depressing at times, especially when the pain hits hard.

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    Powerful Advice:

    1. Keep doing as much as you can for as long as you can. Keep moving, keep exercising. Keep working if you can. JUST KEEP LIVING. It is easy for people with Fibromyalgia to slowly isolate themselves from the rest of the world. I know this because I did. I had to quit my job or I would have been fired. I was able to get disability so I could stay home. I quit driving because the medications make me spacey and my reaction time is too slow. So now I spend most of my time inside, alone and with no way to go anywhere.
    • Find a GOOD doctor that BELIEVES YOU. This can be easier said than done. If your doctor doesn´t take you seriously than find a different one. Just don´t go in to see a doctor and say ¨I need pain medicine!¨ or they will quickly write you off as a drug seeker. Instead tell them you are in pain and need them to help you. Let them tell you the options available and talk to you about what you should try first.
    • Communicate with your boss and make sure they understand what you are dealing with. You don´t have to tell everyone your business but your boss needs to understand. You may need to find a different job. I was a CNA and when I was expected to help transfer a very heavy patient when I was in pain I had to say no. I had to quit because I couldn´t do my job.
    • Keep positive. Start looking for uplifting books or quotes that you like to help when you are down. You can print things out and put them around your house, like on the frig or your mirror etc. Make yourself a notebook or binder to keep positive quotes or memes. I also have books that I use, like Help Yourself by Dave Pelzer. I have underlined sentences and marked them with sticky tags etc. That way I can go right to something quickly that I can read to help me pull myself up out of my sinking sand.
    • Keep your mind busy when you are in pain. Find something you can do when you are hurting that isn´t too hard but something you can focus on. You can shift your attention to that instead of the pain. I do easy Sudoku puzzles or crochet washcloths. My washcloths may look terrible but the point is to keep focused on doing it. I usually unravel them anyway and keep using the same ball of yarn. You could throw darts (as long as you don´t kill anyone), color in an adult coloring book or draw. Sometimes I like to turn up some loud music and rock out if I am alone. Make a playlist of music you like but avoid depressing stuff. Some people find journalling or blogging helpful but it is easy for that to become depressing if you just write about feeling bad. It is best to find something else to be the focus of what you write.

    There are some things to try when you are in pain that is not addictive. Soak in a bath with Epsom salts. I read a book if I can focus while soaking. Get some lidocaine patches. They are available over the counter at 4% but you can only use one at a time. I use them where I am hurting the most or I cut it into two. There is also Tiger Balm ointment and patches. The Tiger Balm patches help almost as well as the lidocaine patches depending on the pain and you can use more than one. Some people find relief from Arnica cream but it did nothing.

    https://fibromyalgia-6.creator-spring.com/
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    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • What do the stories of Survivors tell us about Fibromyalgia and Chronic Fatigue Syndrome?

    What do the stories of Survivors tell us about Fibromyalgia and Chronic Fatigue Syndrome?

    A wonderful database of patients who have accomplished a remission from Fibromyalgia and Chronic Fatigue Syndrome has been created by Chronic-illness Community has video-interviewed several survivors and he has made these available for review.

    The stories he presents and the stories I have heard from patients contain similar reports of survivorship, and it is exactly the healing journeys of these survivors that point to the causes and the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. Those methods that heal Fibromyalgia and Chronic Fatigue Syndrome, in that they are beneficial, intimate the causes.

    Almost universally, survivors report reaching a state of mind and certitude that change must be made in their minds and bodies, and they evolve passionate and willful determination to increase physical activity and optimize nutrition (see discussions below).

    Exercise

    Aerobic exercises are painful and exhausting for Fibromyalgia and Chronic Fatigue Syndrome patients, who usually have deconditioned and weak bodies. Gentle efforts like Aqua therapy and walking were often common first efforts made by survivors. Gentle Yoga and Tai Chi are also mentioned.

    Aqua therapy is useful because the buoyancy of water relatively negates gravity; relieving stress on strained ligaments as deconditioned and weaken muscles are being exercised and toned. Keeping the body upright is a big effort for people with Fibromyalgia and Chronic Fatigue Syndrome.

    Prolonged bed rest takes a toll on invalids and gravity-deprived astronauts alike. Perhaps a successful escalated exercise program could be ruck sacking, whereby about 10% of the person’s body weight is put into a backpack.

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    Strengthening the back

    To build a strong back, which is the underpinning of strength for the upright human tower, survivors should model themselves after military personnel, and one of their best training exercises for back strengthening is called “rucking“. The idea is to walk around for at least 30 minutes, or whatever can be tolerated in the beginning, and for three times a week with a knapsack (also called a rucksack) on the back.

    The contained weight of the rucksack should equal about 10% of body weight, or less for openers, and go up to 15% over time. An hour of this kind of activity burns over 300 calories. The posture engendered by the weighted backpack exercises back muscle groups that strengthen the back, and which counter the common human habit of bending forward for much of the workday.

    This exercise is reputed to be one of the reasons that U.S. military troops are such fierce competitors on the battlefield – strong backs. Of course, as you might guess, when military fighting experts pursue this activity with abandon they advance to 60+ pounds and hours of trekking. But for us common folk, who just want to survive the ravages of everyday life, the above-detailed weights are adequate.

    The healing journey

    The diagnosis of Fibromyalgia and Chronic Fatigue Syndrome is correlated with the recognition that the only person who knows what is wrong with you is yourself. Your sense of frustration, hopelessness, fatigue and constant pain often accompany a final realization that no one knows what is wrong with you.

    This self-realization more or less suggests the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. There is a high degree of correlation between these symptoms of human suffering and the common inability of medical professionals to discern that Fibromyalgia and Chronic Fatigue Syndrome are explanatory.

    Doctor diagnostician impairment

    Many doctors openly deride the diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. Many other doctors are too conservative to go out on a limb to proclaim something for which they have no objective evidence. Doctors are a conservative lot. Many doctors fear what their community of peers might think of them if they begin making the diagnosis.

    Are they thought of as money-seeking opportunists? And with about 4% of the population to be diagnosed, it becomes like potato chips. Once you start making the diagnosis where do you stop when your popularity escalates and more people make appointments. Can your conservative doctor image withstand scrutiny from your peers, especially since you cannot show them objective proof and clinical evidence for your decision-making?

    Let me assure you that most doctors have little taste for becoming the Fibromyalgia and Chronic Fatigue Syndrome King or Queen within their communities, and where doctor survivorship depends upon patient referrals from their peers. The dynamics of covering overhead expenses take into consideration that many who suffer from Fibromyalgia and Chronic Fatigue Syndrome are indigent. Medicaid remuneration to doctors barely covers overhead expenses, if even that.

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    Initial survivor insights

    What the survivors often did next, after self-realization that they were on their own, was to begin to introduce fundamental changes into their lives. Some began with nutrition. Some began with exercise. The order of introduction of these new habits did not seem to make a difference.

    A key characteristic of the survivors is that they had certitude about their quest, and kept at it for weeks and months; over which time they noted small incremental improvements. These small benefits provided feedback, reward, and instilled enthusiasm to continue the efforts. Eventually, after months of effort, fatigue and pain faded into remission. But healing does not end here.

    Remissions and recurrences

    Another common experience of survivors seems to be a tendency to have recurrences of symptoms of fatigue and pain. Each recurrence was once again beaten into remission via reinstitution of the same efforts that gained initial benefits.

    Hormones and endorphins

    I believe that hormones are intimately involved in the healing process that Fibromyalgia and Chronic Fatigue Syndrome survivors report. The biggest endocrine gland in the human body, the brain, is directly connected to the biggest concentration of nerves in the body and the spinal cord, and these neural and endocrine tissues are intimate and maintain inter-communication throughout our lives.

    The brain secretes hormones and senses hormones. The master gland in the human body, the pituitary, lies at the base of the brain and is part of the brain. The pituitary gland secretes hormones into the blood to regulate most of the other glands in the body. Brain tissues command the pituitary, and thoughts command the brain. “I think and therefore I am” is not an abstract philosophical idea, as Voltaire seemed to indicate when he stated this as part of his philosophical discussions of reality.

    Thinking and healing

    Thinking literally causes what you become. These concepts have been an integral part of the biological sciences since the 1960s. Initially, these physiological insights were studied and recorded within a field called “Psychosomatic Medicine”. Later, in the 1980s these ideas became more broadly incorporated into the field of “Psychoneuroimmunology“.

    A more appropriate name is “Psychoneuroendocrin–immunology“. Anyone interested in the scientific underpinnings of these physiological concepts should study the writings of Dr. Candace Pert.

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    Thinking wellness

    What the survivors self-discovered is that they could think and act their way to wellness. Each time they instituted an effort that had restorative potency, their brain-generated thoughts evoked positive neural signals that incited positive hormonal ebbs and flows, which in turn stimulated cytokine and endorphin ebb and flows causal of feelings of well being and actual tissue healing.

    The runner’s high is not a myth. Endorphins released by exercise are the body’s internal opiate system. Endo-cannabinoids are another internal feel-good and healing system.

    The extensive body of clinical endo-cannabinoid science explains why Cannabis has been so helpful to those with Fibromyalgia and Chronic Fatigue Syndrome, and to those who have been daring enough to attempt the use of Cannabis in face of the massive federal propaganda campaign that has been waged against this miracle herb for the last 75 years.

    Conclusion

    Qualities that seem to define the thoughts and behaviors of survivors:

    • Recognition that no one understands their illness
    • Belief in self
    • Passionate planning
    • Willful pursuit
    • Determination to heal
    • Dedicated exercise
    • Natural nutrition quest
    • Peer pressure rejection

    The healing pathway:

    1. Resignation to pain and hopelessness
    2. Turned to anger
    3. Turned to stubborn refusal to accept fate
    4. Turned to passionate planning
    5. Turned to dedicated effort
    6. Turned to sense of improved wellbeing
    7. Turned to sense of conquest
    8. Turned to wellness

    Fibromyalgia and Chronic Fatigue Syndrome Diagnosis

    Once a person has realized this transcendence of life experiences, and has sensed true benefits, these very experiences provide self-evidentiary proof that what they have been suffering has been Fibromyalgia and Chronic Fatigue Syndrome.

    The survivors will have made their own self-diagnosis, and they will realize that their own self-taken actions are the optimal route to recovery.

    https://fibromyalgia-6.creator-spring.com/
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    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • What do you want others to understand about your fibromyalgia life condition, that others don’t seem to realize?

    What do you want others to understand about your fibromyalgia life condition, that others don’t seem to realize?

    My fibromyalgia is considered to be at the severe end of the scale.

    When one has a disease/illness/condition where we frequently get the “but you don’t look sick” cry from the healthy unknowing masses, it is a foreign concept for outsiders (for lack of a better term) to understand the concept of widespread chronic pain.

    The first thing we need you to know is that we aren’t suffering from something that will eventually just go away. My diagnosis was made in 2009 and has been confirmed by several other doctors since then – 2 rheumatologists, 1 sports medicine specialist, 2 orthopedic surgeons, 2 general surgeons, 4 family practice MDs, 1 endocrinologist, 2 cardiologists, and a GI doc.

    They pay close attention to what I say too. They know that if I have to have a procedure of any type, that I will not have the typical healing of the rest of the population. They all got to know me well enough to know that if I say “I’m having trouble getting (fill in the blank with whatever they are specifically treating me for) pain under control,” that I am in serious trouble.

    It doesn’t go away. It is everywhere. It is relentless. And for me, as the years go by, it just gets worse. It is also not something that I can just get over either.

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    I have no way of planning what days will be good and what days will be bad. On bad days, I go into hiding. I even hide from my significant other as much as I can. Since right now I am unmedicated, I don’t have any way of relieving my pain to a lower level. For me, a good day is one where I can actually walk through a supermarket without the use of an electric cart. Those days just don’t happen often.

    I don’t enjoy not working. I miss my old life. I miss being able to pull off the 100 hour work weeks. I miss the companionship of various different kinds of people. I miss associating with healthy people. I would give anything to be that person again instead of this woman whose doctors, over the course of two years, finally convinced her that she needed to permanently go out on disability – the federal, social security kind that one never comes back from.

    Another misconception is that if we smile and seem happy that we must not be suffering that much. When one has had this condition for a long time, one learns to cope with it. Coping does not mean that we are improving, it means that we have learned to mask our pain in public.

    I know that some with fibro do go to the Emergency Room more often than others. Personally, I don’t. When I lived in Colorado, my doctors specifically had a note put in the system at my local hospital network noting that my fibro was very much real and that I am quite possibly the most stubborn person they will ever encounter.

    What I want new ER doctors who I might encounter in the future to know is:

    1. I most likely should have been there anywhere from hours to days before I actually have shown up. I am not a drug addict nor a pill seeker. I do not get high off these, I get some degree of actual relief.
    2. If it seems like everything they do is hurting me, it is. When someone puts a blood pressure cuff on me and begins to inflate it, I get tears in my eyes. I actually cry.
    3. If I give them a number on the 1–10 pain scale, it is probably several points above anything than other patients have reported at that number.
    4. And finally, listen to me. I know my body. I know my body in such a way that I actually speak in medical terminology, I have taken the time to educate myself, and I am smarter than you will ever know.

    Finally, I have also had people say to me that they think that they could handle what I go through. I seriously doubt that. I would not wish this on my worst enemy. If a normally healthy person walked in my shoes for even one day, I am betting that before the end of that day, they would be at a doctor’s office begging for pain meds.

    And since last September, except for a couple of brief time periods where I had to give in and get them (shingles, tooth extractions, and a sprained back), I have operated without any sort of opioids. I needed to know just how bad my pain was. I now know, and I want my meds back!

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Do you know the most misunderstood aspects of living with fibromyalgia?

    Do you know the most misunderstood aspects of living with fibromyalgia?

    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.

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    1. 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.
    2. 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.
    3. 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.
    4. 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.
    5. 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.
    6. 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.
    7. 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.
    8. 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.
    9. 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.)
    10. 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.

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  • How does fibromyalgia usually start initially?

    How does fibromyalgia usually start initially?

    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).

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    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.

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

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  • Do you know someone who was diagnosed with Fibromyalgia and Polymyalgia?

    Do you know someone who was diagnosed with Fibromyalgia and Polymyalgia?

    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.

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    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!

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

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  • Do you know back in the 1800s fibromyalgia is a psychiatric ailment condition?

    Do you know back in the 1800s fibromyalgia is a psychiatric ailment condition?

    Fibromyalgia was first described in the early 1800s. It was considered a psychiatric ailment for decades. It wasn’t until a study done in 1980 that doctors were able to identify it scientifically. I got sick with it in 1989, a very stressful time in my life.

    The problem was that even though the year 2000 many, if not most, doctors continued to refer their patients to a mental health professional. Doctors refused to believe it was real. In the 1990s internationally known and respected rheumatologists (thankfully I have forgotten his name) continued to claim that FM did not exist.

    He wrote about his opinion and addressed numerous medical conferences to tell the doctors attending to not let what their patients were saying sway their understanding that this “condition” was basically all in their mind, and to continue to refer them to mental health facilities.

    Could this (especially in the 19th century and early 20th century) be because 98% of those patients were women? Who knows.

    The idea that fibromyalgia may be the symptom of inactivity deserves an answer. If you do not have FM or live with someone who does, it is virtually impossible for someone with FM to explain. My way of explaining it is that it is a circle or cycle of pain.

    So, I wake up in the morning in pain. It doesn’t matter how well I did, or did not, sleep. The pain comes from all over my body. Some of it is a dull ache but for me, most of my pain feels like a bruise. It is very easy to elicit pain in a specific area simply by pressing on it. I feel like someone with a ball-peen hammer (the hammer with a round ball on one end) spent the night hitting me with it all over my arms, neck, back, and legs.

    When I get out of bed, I’m dizzy and the pain is bad. But as I go through my day, and my muscles loosen up the pain level drops. I have a few good hours on most days from 10 am to about 2 pm. By the time it gets to 3 pm, the fibro fog has descended and I can’t think clearly.

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    Trying to have a conversation with fibro fog is impossible. I can see somebody’s lips move but what they are saying doesn’t make sense. I can start to answer them but somewhere along the way I forget what I was saying and fall silent. I often say something but the words don’t go together. I am aware of this difficulty, but I am powerless to fix it.

    During this time I am overwhelmed by fatigue. Often I can actually feel my energy drain out of my body. The need to sleep is strong.

    I remember one time when my husband and I were going to go to a nice hotel for the night while my parents watched our two teenagers. We spent the morning packing and taking care of things. We finally got in the car about 1:30. We hadn’t eaten, so we stopped at a restaurant we liked about four miles from our house.

    As we were finishing our meal, I could feel my energy drain away. I decided to ignore it. I wouldn’t tell my husband. We had a three-hour drive ahead of us and I thought I could just nap in the car.

    When we walked back to the car I started crying and told my husband what had happened. He was very used to this. He asked if I wanted to go on or return home. I told him how sorry I was but I needed to go back home. When we got there I went straight upstairs and went to bed, still crying. Eventually, the tears stopped and I fell asleep.

    Now that I’m older, that need to sleep in the afternoon is even worse. I plan my day around it. Doctor appointments have to be finished by 1:00 or my husband has to take me.

    As the afternoon and evening progress, the pain begins to ramp up. I am powerless to get on top of it. By the time I go up to the bed, I am drained. My pain is bad, but my fatigue barely lets me brush my teeth. I fall into bed and as my body relaxes, my mind, which has been sleeping most of the day, wakes up.

    I know I desperately need sleep but my mind is wide awake. Thoughts run through it for hours keeping me awake. I think about my day, about where we should go for our anniversary, I sing songs. Often a bit of a song runs through my thoughts in a continuous loop.

    Three hours later, about 1:30 am, I get up and go to the bathroom. Then I take two Tylenol and go back to bed. I am finally able to sleep until about 8 am.

    And the cycle continues.

    Here’s the thing about exercise. Some days are a little better than others. On those days I may run an errand and come back completely worn out. On those days, if the weather is nice, I may decide to walk half a block. I return worn out.

    On the days when I’m feeling especially good, I might take my three-year-old grandson to the park. It is a significant walk but I love walking with him. By the time we get back home, I can’t move. I go to bed and can’t get out of it in the morning.

    If I really have an active day, sometimes I have to spend the next day in bed. I’ve had severe FM for 30 years and I still can’t figure out how much activity is right for that particular day. It’s constantly changing.

    Doctors who don’t fully understand FM advise their patients to get outside and work up to walking a mile, go swimming, take up a sport. They simply do not understand the pain and fatigue cycle of FM. I have a primary care doctor and a pain specialist.

    Too much exercise causes great setbacks in FM. We have a good exercise bike and I decided to get on it and build up my endurance. The first day I pushed myself and felt horrible that afternoon. I haven’t ridden it since. The amount of time I rode the bike? Two minutes. I think that says it all.

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    For More Information Related to Fibromyalgia Visit below sites:

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Fibromyalgia: Do you think that Fibro Patients are imagined to live without pain?

    Fibromyalgia: Do you think that Fibro Patients are imagined to live without pain?

    I would think that would qualify as an oxymoron, calling Fibromyalgia a “comfort zone”! Since I noticed the first pains, it seems as though I haven’t been comfortable again.

    I know you mean more on a mental/emotional level, however. I would still be inclined to think not. From what I’ve read, the people I’ve talked to a majority of people with Fibromyalgia were “type A” personalities. Meaning, they were movers, shakers, doers, overachievers, survivalists– we were always moving, cleaning, hustling, being as efficient with time, so to do as much as possible, with the least amount of time.

    Plus, we did it right, we did it without asking for help, and we did it for everyone but ourselves. I’ve said, although I’m stuck with FM now, I can still say I lived one heck of life before. And, even since.

    So, when FM hit us, it not only took away our ability to move, it took away who we were at our core. The way we always functioned was yanked away, and after all the Dr’s, tests, and fear before our diagnoses were gone, we were left with that same energy running laps in our brains. Some of us were predisposed to mental illness, some not, perhaps. But, I know a lot of people get depressed. Who wouldn’t? Fibromyalgia is a beast of mythical power.

    It attacks you at your senses-sight, smell, sound, touch, taste, temperature- everything is affected. Sound tones (dog barking), feel like knitting needles to your ears. Sunlight is blinding, phone lights give me headaches. And, smells! I get nauseous walking to the store from car exhaust, cigarette smoke on people walking by, detergents used by the store, (not to mention the detergent aisle-my eyes water & burn &my lungs close), 20 different people with 20 different smells from cologne, perfume, lotion, bath soap, everything.

    It’s unpleasant, at best. Worst case, I get headaches, nausea, I “taste” the smells, I get dizzy. It’s not great. I break out into a sweat several times a day, for no apparent reason. Some people are constantly cold, like my icy feet & hands. I constantly have every symptom of a bad kidney infection, which is a gift from FM called Interstitial Cystitis.

    FM is different for everyone, except in that it’s typically different for each of us every day. I often say it would be easier to draw what my body feels like. My skin would be lumpy with huge knots, black and blue, and on fire from the waist up. My eyes, nose, ears & throat would have fire coming from them, as well. My bones would all be broken to some degree.

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    The worst would be my pelvic/hip/tail bone, and my feet would be mutilated, full of broken glass, and look like ice. My hands would also be swollen, black and blue, full of broken bones and glass, with rubber bands wrapped tightly around them. Sharp blades that cut into my wrists, would go down the insides of my wrist, into the bend of my elbows.

    I would have various bugs biting me, making me itchy, and I would have stickers poking my skin. There would be people around me, stabbing me with knives, randomly. I would have twisted metal for my neck/upper spine. Thick, strong cables would be my tendons, and invisible powers will pull them in the wrong directions, at inopportune times, making it easy for a knee/hip/arm to “give out”. A sick marionette doll, of sorts.

    I definitely don’t count nausea as comforting, either. Unable to take meds because of stomach pains/nausea, or getting nauseous from said medications. Feeling your head swim when you’re trying to figure out what to do, or say, because of fibro fog.

    The headaches, body aches, pain all the time take a toll on your mind, body & spirit. Your friends don’t understand or want to hear about it. Your family doesn’t believe you, and why would they? DOCTORS don’t believe you, half the time!

    So, you question your own sanity. You become depressed, isolated, withdrawn. You stop getting invitations because they assume you’ll say no, again. You lose respect from & for others, because you have nothing but time on your hands, and Fibromyalgia WILL be in your thoughts- like it or not. You simply cannot live a “normal life“.

    In my case, I can’t stick to a schedule if my life depended on it. I’ve had FMS for fifteen years, and I get disability, subsidized housing, free rides to dr appointments, and in-home services-someone who comes to help me with cooking, cleaning, etc. I don’t HAVE to do anything, except collect my services, and be “COMFORTABLE”. Yet, I’m constantly trying to do BETTER.

    I’m a double Psych major at the local college, and it will take me longer than most, to finish with my degrees. I’ve gone to Heald college twice for a Business degree. Each time, I have to “fix” my financial aid mess caused from the last time my health stopped me from completing school.

    Each time, I’m older, my abilities are less, and my confidence wavers, when my cognitive abilities are slower, and I’m scared to death I’ll fail. So, why bother, if Fibromyalgia can be a “comfort zone“? Why try to be anything more than who I am TODAY?

    Because I AM NOT FIBROMYALGIA! I HAVE Fibromyalgia! But, I REFUSE to stop moving, stop trying, stop living. Even if I can only move, try 1 day of the week, I’ll take it. And, I won’t feel bad the other 6 days, because ignorant, (read: uneducated, have never felt how I feel, so can’t possibly fathom what it’s like), people often think I’m lazy, I’m lying, I’m scamming the system, or I’m simply comfortable with this horrible condition with which I’ve been afflicted.

    I hope this answers your question. I’m hoping you can answer one for me? Most people don’t know about Fibromyalgia, much less what it does to someone. What would drive you to ask this question, and in the way you asked? With FMS being a pain condition, why would you suggest anyone could/would find any comfort in having Fibro? What is your experience, if any, with Fibromyalgia?

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    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • What is daily life like for people living with fibromyalgia pain?

    What is daily life like for people living with fibromyalgia pain?

    On a scale of 1-10, my average daily pain level is a 6 or a 7. All-day. Every single day of my life. It’s always there, and cannot be ignored no matter how engrossed in something I may be.

    Being in constant pain is exhausting. Fatigue is a huge issue in my life. Unrefreshing sleep is one of the hallmarks of this disease. I sleep about ten hours per night and still wake feeling like I used to in college when I pulled an all-nighter studying. That’s on my good days.

    Bad days are more like staying up for three days while having the worst flu of your life. Fibromyalgia has what are called “flares” where the disease is more active than usual. For me, these can last for weeks, and during a flare, I’m almost completely bedridden, sleeping up to 20 hours a day. Literally too exhausted to leave the house, sometimes even to shower or fix myself a meal. Careful management of my energy levels helps limit these to just a couple a year.

    Even on good days, energy is in very short supply. I’ve had to learn to plan not just my day, but my entire week carefully. A three-hour grocery shopping trip requires me to build a day in before it to rest up for the activity, and a day afterward to recover.

    Cognitive dysfunction is pervasive, especially on days when the fatigue is severe. Putting together a coherent sentence or following a simple conversation becomes a struggle. My favorite TV shows may as well be in Swahili as far as my understanding of what’s happening. Handling money, paying bills, filling out forms, reading Quora questions correctly, all become simply too difficult when I’m tired.

    Words desert me. My family has become remarkably good at deciphering what I mean when I ask them to go get me the “thing for the thing” (usually accompanied by a vague hand gesture). I lose track of where the thought is going before I finish a sentence when talking. “Sweetie, can you run upstairs and get…” Get what? I have no idea.

    I’ve had to teach my family that a blank stare and a “huh?” means start over with whatever you just said to me. From the beginning. Repeating just the last few words will do no good, and please don’t raise your voice (see below). Slow down. Speak clearly. Watch my face to see if I’m following.

    My memory is completely shot. Yesterday I was going into the next room to tell my husband something. I completely forgot what it was before I can completely stand up from my desk. How I wish I were exaggerating for dramatic effect. I rely heavily on routines and reminders. My smartphone is a lifeline. I have so many alarms and reminders programmed in it’s ridiculous. If I had a dollar for every time I showed up for an appointment on a wrong day, I’d have a fistful of cash.

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    There’s a hidden silver lining, though. I can read a book (on a good day) or watch a movie repeatedly, and it’s new to me each time. Usually, I’ll get about three-quarters of the way through and turn to my husband to ask him if I’ve seen it before because it starts to seem familiar somehow. He finds this amusing. I prefer to watch movies at home because sitting still for two hours is very painful. It helps to be able to get up and stretch from time to time. We do have a wonderful theater with cushy recliners a couple of hours away now, so that helps.

    It’s not just nerves endings that are oversensitive. Bright lights, too much noise, fast motion, slightly rough fabrics, strong smells or flavors. Everything causes pain and distress. If someone raises their voice at me, I can’t understand what they are saying, because the sound overwhelms my senses. They start to sound like Charlie Brown’s parents. “Whaaaw whaaw whaaw.”

    Talking on the telephone is stressful. I avoid it as much as possible. My hearing is perfect. I just can’t process spoken words well anymore. Without facial expressions and non-verbal cues, I have a really hard time understanding what people are saying. It’s really embarrassing to ask people to repeat themselves, especially when I often don’t catch it the second time either.

    I much prefer communicating in writing. Then I can take as much time as I need. I’ve been working on this answer for about an hour now (and am writing this sentence after the five paragraphs below). On a good day, I can dash off an answer in ten minutes. Today is not a good day, but not so bad I’ve lost the ability to read yet. It’s still early, though.

    Fibromyalgia wreaks havoc in other ways besides pain and fatigue. Bowels and bladder are irritable and unpredictable. I make sure I know where the nearest bathroom is at all times when I have to go out. Clean panties and wipes in my purse at all times.

    I’ve lost the ability to regulate my body temperature. It feels a lot like having a fever and chills. I can be burning up and shivery at the same time. Any temperature above 75 or below 60 is debilitating. Today it’s 70 degrees here in this room I’m sitting in. I’m wearing a sweater, drinking hot tea, and using a heating pad right now, and I’m still chilled through.

    All of this is complicated by the fact that it’s an invisible disease. I look normal, and like most fibro patients, I have developed a good game face. People judge. If I let the pain show, I’m judged as a whiner. If I hide it, I’m judged as a faker when I say I can’t do something. I can sympathize with peoples’ impatience/skepticism. It does seem unbelievable if you haven’t experienced it for yourself.

    A lot of people feel I should just “suck it up and push through”. They don’t realize the amount of mental fortitude it takes to resist my own impulse to do just that. I’ve learned the hard way that the price for doing is just too high. If I “soldier on” and mop the floor today after I do the dishes and laundry, I’ll be bedridden for the next three days, and fall behind on everything. But the temptation to do so is always there. It takes a lot of discipline to pace yourself during simple activities you used to do with ease.

    The worst part isn’t the physical difficulties. It’s the loss of self-esteem, of self-confidence, of my health. I grieve for the person I used to be. Twenty years in and that loss hasn’t become any easier to accept.

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