She can barely get out of bed some days. One day it’s her foot, another it’s her hip. She’s sad and tired and feels like my and my sister I’s lives aren’t what they could be because of her. How do I help her?
Your mother isn’t making things up. She’s not lying; she’s not exaggerating.
One of the hardest things for “norms” (people without invisible illness) to understand is the erratic nature of this disease. Just because I could do this thing yesterday doesn’t mean I can do it today.
She’s likely struggling in three areas; pain, fatigue, and what’s referred to as “brain fog”.
It never ends. There isn’t a moment (unless strong drugs are involved) that your mom is pain-free. It isn’t mild pain. It’s pain that’s severe enough that it cannot be ignored, even for a little while. It’s there, weighing her down, every minute of every day. And like you noted, it wanders.
Today it’s in the hips, tomorrow in her hands. It’s worse in the morning, but it never goes away and gets worse with exertion. She will probably need help with simple things, like opening jars, or vacuuming.
This symptom is part of a vicious circle of pain. Pain uses up a whole lot of her energy. Think of it like bandwidth on computers. Pain hogs most of it, so everything else has very little energy.
When she’s feeling bad, she may be as exhausted as a marathon runner with the flu. When fibro is flaring, I sometimes sleep up to twenty hours a day, for several days in a row, and still feel exhausted. This can make it dangerous to do tasks most of us take for granted, such as driving.
This one is hard to explain. It’s almost a physical sensation. It feels like my head is stuffed with cotton. My memory is completely shot. I have trouble communicating because I can’t remember the words for things.
My kids have become experts at figuring out what I mean when I ask them to go get me the “thing for the thing” (usually accompanied by a vague hand gesture). I mean the broom but cannot remember that word for the life of me. Simple conversations become nearly impossible to follow.
Watching TV is impossible because I can’t understand what’s happening. Remembering appointments, or what you said to me five minutes ago are as unattainable as the peak of Mount Everest. I’m not stupid. I’m just “busy” being exhausted and in pain.
Your mom will likely be struggling with the guilt that she can’t be the kind of mom we see on TV. Remind her that you love her no matter what. Take responsibility for any of the household chores that you can manage. Nagging you probably takes more energy and mental effort than she has.
Every bit of physical effort you do for her frees up a bit of energy she can spend on you. Forgive her when she cannot do things for you like help you with your homework, or when she has to cancel attending your events, and remember it kills her to have to do that. Write things down for her, instead of expecting her to simply remember.
Remind her of events a few times in advance. She loves you. It’s just that her body fails her more often than she’d like. Tell her you to love her. Knowing her kids are OK is very important. I’m not recommending you lie, but when it’s true, remind her of it. Worry is a huge energy sink.
If you’re lucky, you will end up as compassionate and self-sufficient as my kids have. Their childhood wasn’t typical, but I think they’ve come through it OK.
NB: I’m having a bad flare day, so hopefully this makes sense. I’ve spent quite a while editing. I Will have to come back when I’m feeling better and rework it, I’m sure.
In 2003 I started to have pain in the muscles of my legs. A doctor’s visit found nothing wrong. As time went on I started to feel pain in other muscles. Down my back, back of my arms, calves, and back of my neck. OTC pain relievers did nothing. Trip to the doctor got narcotics.
They did nothing. Tried muscle relaxers with no results. The pain kept getting steadily worse. The doctor finally me told there was nothing he could do for me. I asked if there might be a doctor anywhere that could help. He said he didn’t think so but he put me in the hospital for some tests.
After 5 days my pain lessened somewhat. He didn’t find anything wrong so I went back to work. Within 1 day my pain level was so high I had to leave work. Called my doctor in tears and begged for help. After saying he didn’t think my pain level was that bad, he recommended that I see a Rheumatologist.
That doctor asked if I had trouble sleeping. I told him I dreaded going to bed as I knew I would wake up feeling worse than when I went to sleep. I told him it felt like I had been run over by a train. He asked if I had any places that felt sore when they were touched. Yes, two on my shoulder.
He started running his hands down my back and pressing different spots. Each spot was extremely painful. He found 16 different spots that were painful. After asking me several more questions he asked if I had ever heard of fibromyalgia.
No, l said. He explained the symptoms to me and some were things I was going through but didn’t think were related to my pain. I was in tears when I left his office. I knew I could not live the rest of my life in severe pain. He offered no medication or treatment plan except to say try to stay as comfortable as possible.
I headed to the internet. At that time very little was known about fibromyalgia. The word means muscle pain. I lived 5 years in constant pain until I came across a pain reliever that gave me some relief. I went to my regular doctor because I was getting very depressed.
When I started taking the antidepressant, I found more relief. I have been on these two medications for 17 years and on most days my pain level is around 2 or 3. In winter I have more trouble and the rainy weather isn’t so good.
I am of the opinion that they still don’t know what it is or what causes it. The medications they advertise on TV have never worked for me or else had too many side effects. I can tell you if you find a medication or combination that works for you stay with it.
The mix of non-narcotic pain relievers and antidepressants is what works for me consistently. I have tried everything that is recommended for fibro and these are the only two that works for me.
Anyone that has fibromyalgia has my sympathy. Good luck. I found out I can stand a lot more pain than I thought even though I am more pain-sensitive.
There are several issues in here, I’ll chop them into physical and mental issues just so I can tackle them separately.
Fibromyalgia is a serious illness. The pain goes on and you don’t know why or where. A friend of mine describes it as “you are in pain, that is all you know”. Treatment is scarce, sometimes what helps may cause the patient to lose other senses like they can’t smell anymore.
Living with someone with fibromyalgia means being sensitive to their pain. Pain is something that can be seen by another person but after a while, you get frustrated when you can’t help. Accepting your limit and not excepting your spouse to function normally is key.
Major depression is another issue. While depression can be treated or at least managed, in many cases the patient does not cooperate in treatment or the illness is severe. Living with a depressed person means you will have to understand that their mood may not have anything to do with you or anyone or anything at all. A lot of patience and the ability to be vigilant about your spouse’s mood changes will be required.
Quick to anger is a possible symptom of depression, so see above. Note additionally that a good plan for safety is required. Don’t aggravate your spouse in anger, it will further damage them and may put you or others in danger as well.
Never accepting responsibility is a very serious concern, which led me to this question: how do you know that someone never accepts responsibility? This is a behavior trait that can only be accurately stated with an extended period of observation with neutrality.
If you love or hate or have any preconceived emotion about this person, then your characterization may not be accurate. What really matters is: if you are considering marriage or are married to this person, this is not a condition that happens, it’s something willful. Are you willing to accept this willful behavior? It’s selfish and will be extremely damaging to the relationship.
One can fight depression and fibromyalgia with their spouse, people face illnesses together. But, this behavior trait, if true, will most likely be the deal-breaker or the ship sinker. The only thing you can do is to accept that everything in the relationship is your responsibility.
Please note that all of this is based on the assumption that all of the above is true. I’ve seen people in marriage with depression, anger issues, fibromyalgia, all of the above, some of the above, and their marriages are just fine. The lack of responsibility is something totally different.
Lastly, just because someone has a mental health problem does not mean they have terrible behavior traits. Look closely and know the exact detail before you proceed or advise someone.
I am 5’4”. When my fibromyalgia symptoms started, I was 22 and weighed 140lbs. I was, and still am, an endorphin junky who loved swimming and running. I had to give up running because of pain spreading to all my muscles, particularly after weight-bearing exercise. My weight plummeted to 105lbs. I most likely lost some muscle mass along with the fat, and I was depressed and nauseous from medication side effects. I was rolling down my jeans several times over and folding down and pinning my skirts in the back.
After I learned to manage my symptoms better, I got back to swimming, using fins to spread the work over my entire body, thus avoiding a major flare in my shoulders and obliques. I picked up a sport called underwater hockey.
My weight rose back up to around 125lbs after I started feeling somewhat better, and it mostly hovers around this amount. However, when I feel worse, it can drop back down to between 110–115lbs, again because of loss of muscle mass from having to lie on the couch so much, compounded by depression from missing out on my favorite activities and whatever current flavor of side effect is plaguing me due to whatever new medication I am attempting to manage my symptoms with.
I also recently came to the realization that I have quite a bit of anxiety sprinkled into my depression, due to never entirely knowing if some new treatment or activity is going to make my symptoms worse or better. And having to answer questions like this one. This question makes me lose my appetite.
I realize my story is not typical and that most people gain weight after developing fibromyalgia. However, to my understanding, being overweight or obese comes with a specific set of symptoms, which can include pain, but that is distinct from our understanding of fibromyalgia and other chronic pain syndromes. In other words, fibromyalgia can affect people of all sizes, and there is still much work to be done to narrow down all the possible causes and risk factors.
Because they are ignorant and cruel. I was struck with this disease in my late teens. I was, if anything, underweight at the time. The blood bank routinely turned me away from donations because I didn’t meet their minimum weight requirement.
Gaining weight didn’t cause my disease. I was slender until my mid-thirties. The sedentary lifestyle enforced by chronic pain and fatigue eventually caused me to gain weight. This is exacerbated by the fact that being sick all the time makes it much harder to shop for and prepare low-calorie, healthy meals.
I’m now nearly fifty and considered clinically overweight by about fifteen pounds, but I have never been in the category of obese.
I am a 41-year-old female with Fibromyalgia. 5’5″ 215lbs. Fat. Well, I haven’t always been sick, and not coincidentally, I haven’t always been fat. Like many fibro patients, I am fighting other things as well, but Fibro was the downfall of my active life and the subsequent rise of my weight.
I think many people see my sedentary lifestyle and think that I would be much healthier if I would just exercise more. (They’re not wrong) That my pain and fatigue are the results of my laziness. Thus, “Fatso–myalgia“
But the pain came first. The fat came later.
Now it’s just the revolving door of pain=lazy=fat=pain.
Seriously, no two days are the same. I think that is the reality that most people can’t wrap their minds around. I have absolutely no idea what my pain will be like a month from now. The only thing I know for certain is that I will have pain. Every day. For the rest of my life.
I’d say it’s like being trapped on a roller coaster and you can only see two feet in front of you.
Although, if you pay close enough attention for long enough (I recommend a pain diary), you can get a decent handle on some patterns. Different factors have different effects, like weather and stressors. For instance, my primary influence (outside my control) is barometric pressure. I am a human barometer. If I tell you that the weatherman is wrong, trust me, he’s wrong.
At this point, I’m realizing that this is coming off way more negative than I intended. There is much more to my life than pain, that is just one part of my existence on this planet.
By the way, this human barometer lives in north-central Wisconsin.
Sorry, I got to add one more thing. Fibromyalgia is neurological, not psychological. This is important. Those two words do not mean the same thing and they are not interchangeable. If my pain was “all in my head,” I would not be able to predict the weather.
Three Fibro Warrior shares their experience with fibromyalgia.
In my experience, the biggest misunderstanding is that people think we can control it. It’s unlike other diseases/syndromes/etc. because it’s so inconsistent. One day I could get up, put on makeup, work hard, be cheerful and function apparently like everyone else (even though a good day is still full of aches, pains, symptoms, and exhaustion-but relatively it’s a good day) and the next day has explosive diarrhea all day, migraines, pain so bad I could scream, exhaustion, muscle weakness, confusion, etc. so bad I can’t function.
People around me have acted like I’m choosing the days I’m well or making excuses because they think I’m “well” because I had a good day, week, or month. They also seem to think that normal things like exercising a lot or doing common sense things that others do will help a me-every person with fibro responds to meds differently and has different symptoms and other problems.
Pilates messed up my bulging discs, some meds made me feel like a zombie, some did nothing, some worked for a bit then quit…The only thing that has worked for me was resting, minimizing stress, learning how far I can push myself, yoga, trying to stay generally as healthy and positive as possible, and getting unsupportive draining people out of my life.
When I get overwhelmed with life, family, work, it gets worse-people to think we just want to be lazy but for whatever reason overwhelmed brains make us nosedive really quick. It’s in the brain, nerves, muscles, and affects our neural pathways, we tend to have problems with sensory overload and our brains start shutting down and misfiring-the constant pain and fatigue put our whole system on the edge, so too much of anything can send us over the edge. Have compassion and empathy for everyone who fights a chronic illness.
The most misunderstood thing about fibromyalgia is that it’s actually a disease, a complicated one at that. Because you look normal, people, including family members and doctors, don’t think you’re sick. And as for finding someone who can heal you, they don’t exist except for the marginally few who have $25,000 or more to spend.
This is an expensive disease to treat because it requires expensive supplements, doctors who don’t take insurance, treatments (like IV nutrition and Ondamed) that insurance won’t pay for, and experimental procedures. Not to mention the organic food you have to eat because of your already toxin-filled body.
I have been sick for 35 years and some of my family members still don’t believe I’m sick.
I apologize for whining. You pressed my hot button today. May you have an understanding family who loves you and wish you well. You will need their support.
I think that the most misunderstood thing about fibromyalgia is that there is no cure. There will be times that we feel better due to various meds or treatments, but there is no cure. For those of us with true Fibromyalgia, we will never be totally well.
Another misconception about fibromyalgia is that our days do not redundantly flow one into another. Each day is different. Some days, my hands are completely immobilized. Other days, I can’t put any weight on my right hip.
Still another day, maybe one of my knees won’t hold my weight (and I am not considered overweight). The pain is always there it is just that some days it might be worse in one part of the body than it is in the other.
When I am in a flare, all bets are off. All of me is in complete agony. You won’t hear from me. You won’t see me. I will be hiding under the covers in bed, in the fetal position, whimpering at best. Unfortunately, flares can last for days, weeks, months – I have even heard of people being in a flare for years. For me, once I adjust to my new reality of a flare (which usually takes a couple of days at the minimum), I force myself to move.
I hate it, but I know that if I stay completely immobilized that I won’t be able to get through it. My best way of dealing with extreme pain is to distract myself. This can include watching TV, reading, writing (not longhand – on the iPad as longhand is impossible when I’m in a flare), cooking, and spending time with my significant other.
Sometimes this is easier said than done, but unless something else is wrong – like when I was immobilized by the shingles for 5 weeks earlier this year – but for me, forcing the issue is key to getting through a flare with any sense of sanity.
Last but not least is the simple fact that no matter what we do, it does actually get worse over time no matter how hard we try not to let it happen. These things are more for those of us who have experienced our trigger event which sends our fibromyalgia from manageable to having to learn to live a completely different life because there is no real relief ever again. My trigger event was a fall down half a flight of stairs in 2009. I have been in constant pain ever since and was diagnosed shortly thereafter.
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.
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.
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.
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.
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.
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).
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.
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 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.
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.
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.
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.
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 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.
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.
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.
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.
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:
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.
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.
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.
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!
Fibromyalgia itself is still very much a mystery. Although doctors now have more information, and many doctors now accept it as a “real” issue, we still have a LOT to learn about fibro and chronic pain conditions in general. I personally agree with doctors who believe that fibro is not a condition in and of itself, but the result of other traumas or illnesses.
I was diagnosed with fibro in 2002 when I was in my early 30s, so I’ve had this condition for a good while. I actually went to a young doctor at LSU-S medical center who was a researcher in the field at that time, and to a very good rheumatologist. These and later doctors have certainly helped my condition improve.
I also try to eat healthily (that is, not heavily processed) foods, and MSG drives me nuts, so I avoid it like the plague, but fibro still impacts my life far more than many people would suspect. And, yes, I’ve tried some of the much-advertised medicines. They work, but they also made me gain a lot of weight, which makes the fibro even worse. I prefer to use OTC pain relievers and natural remedies.
Everyone with fibro has slightly different symptoms, and symptoms can vary widely day to day.The pain and tender points are common to everyone, but symptoms vary WIDELY, as does the level of disability. Symptoms also very widely from day to day. Some days I may be doing GREAT and I’ll be outside trimming goats’ hooves or even pounding t-posts. Another day I may not be able to get off the couch. The unpredictability is maddening. I love to be busy; I love to be outside doing things in my garden, but sometimes I can hardly drag myself to the kitchen. Just because yesterday I could do something doesn’t mean that I can do the same thing today.
I hurt all the time, all over.Most of the time, thanks be to God, it’s only just above consciousness-level, but it’s there. I usually describe it as the ache you have when you have a slight fever. This all-over-ache is there when I sit down, when I stand up, when I walk, and when I lie down. It never goes away completely, although I can block it out SOMETIMES if I can keep busy. Other people have HORRIFIC pain, much worse than mine.
FATIGUE for me as just as bad or worse than the pain. (I may have CFS as well as fibro.) I’ve had doctors quip, “Well, I’m tired all the time, too.” We’re not talking about “tired,” here. We’re talking about feeling like you were just unplugged, like you have a bad case of the flu, or like you have on-the-verge-of-tears exhaustion. If you’ve never felt it, you can’t completely comprehend it. Again, the CLOSEST I can compare it to is a BAD case of the flu, where you are so weak and tired you can barely get up, if you can even do that. Your arms and legs feel like they weigh 100 lbs. each. Let me put this in real terms: there are times when I cannot get to the kitchen to make something to eat or when I’m so tired that I cannot go to the doctor’s office even if I’m sick. Getting dressed can be a major undertaking. At the worst times, I even slur my speech. I can hardly think or feel any emotion, because both of those require energy.
My “tiredness” isn’t relieved by sleep or rest, either.The fatigue comes and goes as it pleases, although it often DOES seem to be worse before weather-changes or after I’ve tried to do too much. Rest certainly helps a LOT, but when I wake up in the morning I often feel as if I’d been beaten. My muscles are incredibly stiff, and it usually takes me at least 30 minutes to be able to walk normally. On a “bad” day, my muscles STAY stiff. In other words, even with medication, I do NOT sleep well. Some doctors have surmised that this poor sleep also means that our muscles aren’t being repaired, which leads to pain.
My body over-reacts to some sensations…(and perhaps ignores other pain.) When I’m having a flare, anything that touches my back or hits my lower legs or feet feels like an electric shock going up my spine. Do NOT come up from behind me and touch my back, especially my lower back. I will hit you. Seriously. Hard. It’s like you touched me with a taser. This is how bad it is: I was working with a filly one day and she came down on my foot. That hurts, of course, but as it was during a flare the pain was so intense that I fell down on the ground and literally could NOT get up for what seemed like minutes. I was terrified that she would trample me. Finally I was able to pull myself up on the fence with my arms. After that I had to admit that I could no longer safely work with horses.
That leads me to this: although my fibro is really quite mild in comparison to many people’s it has altered my life in SO many ways.I would simply not be able to work outside the home anymore in most jobs. I get clumsy as heck, and sometimes my hands don’t work well. I don’t drive long distances, either, because if I have a fatigue-flare I would not be able to drive safely. I have to plan my shopping, because standing up can be EXTREMELY painful at times and I’m too proud to use a cart. I’m also not very reliable, because I never know when I’m have a spell. It isn’t that I’m depressed; there is SO much that I’d love to do if I had the energy and ability (like try living off-grid), but I know that’s not reality. I often get in trouble because I plan MUCH more for myself than I can do.
I want to zero in on one aspect of fibro that literally hits close to home: housekeeping. When you have fibro or chronic fatigue syndrome (now called Myalgic encephalomyelitis) you have to use your brain (if it is functioning that day) to spare your energy. That means that I look around and take as much as possible to on each errand to a part of the house rather than make multiple trips. I now actually have to have someone help me clean. (It’s embarrassing, really.) Sometimes jobs like folding clothes take several attempts; it’s honestly exhausting.
NO, exercise is NOT a magic bullet.I think doctors often say this because it IS partially true. Obviously if a person is literally lying around with no interests or excitement some exercise MIGHT make him or her feel better. During a flare, however, exercise is like a normal person exercising while having the flu, and it can reduce you to tears. During my “normal” times I can walk a mile (it takes me about 25 minutes because I am rather clumsy and have balance problems on the treadmil) fairly easily; during a flare I can hardly walk to the kitchen. Exercise DOES help, but it’s not a cure and, during a flare, it can do much more harm than good. It can take us DAYS to recover.
No, all those quack products and supplements aren’t magic bullets, either. Sometimes nutritional products, or gluten free items, or this or that do help certain people who have deficiencies or unknown food allergies. I do think the reason that I do as well as I do and am not completely bed-ridden, is because I keep moving to some extent (the baby goats are excellent therapy), I DO try to eat a reasonably healthy diet, and I discovered by chance that MSG was a major trigger for me (it makes me feel like there is drill going into my joints.) Eating fruits, veggies, whole grains, and lean meat (as long as you aren’t allergic to any of these) and cooking them at home really helps some people. (Not all. Again, I think “fibro” is so maddeningly different because it’s actually the result of very different conditions in different people.)
Fibro may not kill a person, but it can make a person wish he or she were dead.That’s the sad truth. Long-term chronic pain is life-changing, it sometimes occurs in the prime of life, and can bring hopelessness. I’m blessed, but many people with fibro lose their jobs, their spouses, their hobbies/sports, and their friends. What makes it even worse is the fact that it is “invisible,” so many doctors and family members completely dismiss it. Imagine being in a lot of pain and constant fatigue and having a doctor basically tell you that you’re just crazy or a hypochondriac. (Funny, but that’s also what doctors used to say about menstrual cramps and then about lupus. Basically it’s the first answer often given when doctors don’t know what to do about an issue.)
So there are 10 things to know about fibro. Again, every case is different, and I feel very blessed to be able to do what I can do.
