Chronic pain in the upper and lower aspects of the same body side suggest a musculoskeletal disorder. In cases of fibromyalgia, a constellation of symptoms can exist which reflect simultaneous painful dysfunction of the pelvic and shoulder girdles.
My clinical researchers have discovered that females can incur looseness and hypermobility (subluxation) of their pelvic girdle sacroiliac joints (note for physicians: diagnostic criteria are found in the Occupational Disabilities Guidelines). Pelvic instability can become a chronic pain condition due to ongoing mechanical stress of pelvic ligaments attempting to hold together the loose pelvic sacroiliac joint.
Pelvic sacroiliac joint hypermobility can be due to childbirth, pelvic girdle mechanical injury (such as extreme sport participation), an underlying Joint Hypermobility Syndrome (JHS), obesity, musculoskeletal deconditioning, poor nutritional musculoskeletal status, or an admixture of these and other circumstances.
Different people can come to this type of pelvic sacroiliac joint dysfunction from varying causes. Secondary to the unstable pelvic girdle ring, the shoulder girdle can tilt and droop on one side, usually the same side that the lower spine (sacrum) droops into the painful and unstable pelvic sacroiliac joint.
When the pelvic girdle ring is unstable, the body tower, the spine surmounted by a shoulder girdle and head, is induced to tilt and gyrate into a spinal formation called “functional scoliosis“. Scoliosis causes the shoulder girdle to tilt, and the shoulder on the same side as the loose and painful pelvic sacroiliac joint is caused to tilt downward.
This chronic and unconscious posture of unilateral shoulder droop can often be seen in photographs and/or in the mirror. A chronically tilted shoulder can develop signs and symptoms of Thoracic Outlet Syndrome; with tingling, pain, and numbness down the arm (usually to the pinky side of the hand) and spasm of adjacent neck muscles.
As a consequence of chronic head tilt, the muscles on one side of the neck become chronically spastic, and the symptoms of chronic “muscle tension headache” can evolve. The unseen force of gravity acts upon all these tilted masses stationed above an unstable pelvis, and gravity is a participant in the evolution of these chronic pain syndromes.
Osteopaths and Physical Therapists are the best medical experts to diagnose these postural changes, muscle spasms, painful tendon and ligament mechanical stress, and the consequent generalized pain generation that occurs as a cascade of causes and effects. In a Fibromyalgia Cure Quora Space, I discuss the relationship of these musculoskeletal disorders, as well as the occurrence of “endometriosis” in women with this constellation of disorders.
The genetic background condition called Joint Hypermobility Syndrome (JHS) is also described. It is no coincidence that women with JHS experience a high incidence of fibromyalgia. Subluxation/hypermobility of one sacroiliac joint is the unifying biomechanical principle.
I had fibromyalgia symptoms for 15 years before I was diagnosed. At that time, I took a course of physical therapy where I did the Wharton stretch method, where you put a strap around your ankle, stretch your leg, and then gently use the strap to extend the stretch for a second. This, combined with a slow, progressive walking program where I extended the length of my walk over time improved my energy and pain levels to almost normal.
After that, I had a car accident which put me into a fibromyalgia crisis and I’ve never reached that former level of health. I gained weight, and what helped my energy levels next was having a sleep study and getting CPAP. Later I was diagnosed with Wilson’s Thyroid syndrome and started on T3. That helped my energy somewhat.
in 2005 I went to Africa as a missionary. I discovered that I am a mosquito magnet. I had malaria 8 times and intestinal parasites several more times, and all the antibiotics led to a massive reduction in energy, which caused me to come home after 7 years on my dream job.
That made me believe that an abnormal gut biome has something to do with the disease, and might be a leading component. To that end, I did the challenging GAPS diet for 2 years, and while it has not improved my energy levels, it has greatly improved my bowel symptoms.
Before that, about 5 years ago, I did a juice fast for 5 days. For the first 3 days, I went into a massive detox and had huge pain and fatigue. Then for 2 days, I felt like a 30-year-old again. I had energy and motivation! It was amazing! But I developed bruises all over my body. I called my fibromyalgia specialist, Dr. Joanne Pizzino, who is in Cary, NC, and she called the True North Clinic in Santa Rosa CA, which specializes in supervised fasting.
They told her that juice fasting is contraindicated when you are taking blood thinners because it acts as a blood thinner itself. As I am taking both aspirin and Plavix after having had a heart stent, I sadly had to stop the juice fast, and all my symptoms came crashing back.
At the time I juice fast I was doing Dr. Joel Fuhrmans vegan diet, at Dr. Pizzino’s urging. She had me watch the movie Fat, Sick, and Nearly Dead first. I did that for a year, and while on that, my energy improved to the point that I could walk again, and I worked up to a 45 minute fairly brisk walk.
Since I got off it, my energy levels have faded to nothing, and I’ve developed cardiac symptoms. I think my heart is now driving my health. I’ll have to go back to the vegan diet to establish that.
There is also a lot of research being done on antiviral treatment. I recommend everyone with Fibromyalgia/chronic fatigue read Cort Johnson’s excellent, encouraging, well-researched blog: Health Rising. He mentions 2 doctors who are having success with that. Dr. John Chia is in California and Dr. William Pridgen is working in Alabama.
Another resource is Dr. Jacob Teitelbaum, who is in Hawaii and cured himself of chronic fatigue. I found Dr. Pizzino through his list of fibromyalgia practitioners. Sadly, he is into the business of selling his own supplements and I think he emphasizes them too much in his treatment protocols.
But what he does do is parenteral nutrition: an IV cocktail that bypasses your leaky gut. Dr. Pizzino has expanded his original small cocktail of stuff and if you are within range of her clinic, she could help you, if you can afford her. She doesn’t take insurance, and the IV cocktails need to be taken on a weekly basis.
I lived too far away from her, and couldn’t do her whole program, and went back to Uganda in the middle of it. The moral of that story is don’t start treatment unless you can finish it.
Another treatment that helped me a lot is Ondamed, which is electrical biofeedback. Ideally, it is given every other week. I had 4 treatments, one by Dr. Pizzino and 3 by a man based in Greenville NC who came to St Louis every few months.
His treatments really helped my pain and energy levels but they were not regular enough to be effective. Then he stopped coming. I think if you could purchase the $16,000 equipment, take the classes and treat yourself that would be the best way to go.
To sum up, I think that a two-pronged approach of looking at antiviral treatment and parenteral nutrition treatment or fasting is the most promising possibility for a cure. The True North clinic could probably cure you. Failing that, watch the movie Fat, Sick and Nearly Dead, and do the juice fast.
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.
In the spring of 2008, my fibromyalgia (technically fibromyalgia syndrome or FMS) was destroying my life. I couldn’t move without crippling pain. I would move in small increments like going to the bathroom or switching from the bed to the couch. I needed help getting to appointments. If my ride’s car didn’t have soft seats, I was in agony.
Sometime that summer, I was prescribed Lyrica. It wasn’t the first thing I tried, but it was the first thing that helped. It made a big difference. I did a little bit of housework, a little bit of caring for my kids, and I could get myself to appointments.
I lived like that for years. I got Social Security Disability Insurance (SSDI) after a long appeals process. A couple of times, I tried to be productive and return to school or get a job. Both attempts failed.
In 2012 or 2013, I began physical therapy for the FMS. Fortunately, they started me in a therapy swimming pool. That way, the exercises weren’t “weight-bearing.” It did add a little bit of resistance, but really it was less than holding a 1 pound weight. I started with 5 minutes of exercise – plus after I got out of the pool, they would stretch my legs gently.
I don’t remember how many months I continued with them. I think it was close to a year and a half. They added two minutes a week at first. Later, they added five minutes a week. With the added minutes, they added exercises. I was much stronger when they finally started having me work on the land. Eventually, I could exercise for 30 minutes weight-bearing. At that point, they discharged me.
With all this exercise, something very nice happened. The constant widespread pain declined. It was still pretty bad when I was discharged, but not agonizing. I also disagreed with the discharge because I still couldn’t do a lot of basic household tasks. The fact was, I still wasn’t as strong as the average couch potato.
At home, I kept doing the exercises. I really liked the reduction in pain. Then, I got a virus and I was sick for a week. The FMS symptoms worsened to the point that I couldn’t do the exercise routine anymore.
It wasn’t at its worst. I decided on a plan. I chose a YouTube exercise video for beginners. I picked one that used the whole body and seemed to be a true beginner level – for average people. In order to make it possible for me, I started with the first 5 minutes of the video.
I did it every morning. After a week, I added a minute. I kept adding minutes in small numbers week after week. When I was finally doing the whole video, I felt better all the time again.
In 2015, I decided that I could manage a part-time job. I did a job search, which is a story in itself. August of 2015, I began working 15 hours a week. The job involved some walking and some stairs, which worried me at first.
The walking and stairs turned out to be a good thing. Don’t get me wrong; it hurt to walk and climb stairs. But they were absolutely necessary to my job. And since I care about work ethic, I did both with a positive attitude. My symptoms improved further.
When I was laid off in 2016, I was ready for a job with 30 hours a week and some activity. A year later, I went to 40 hours a week and more activity. Last fall, 2018, I increased my activity again. When I had a smartwatch (I recently lost it), I learned that I’m walking about 9000 steps most days.
The difference is profound. I still have a ghost of pain all the time, but it’s not a problem. I seldom notice it.
If I get too much activity, I will feel it. It’s horrible. But since I started working, I’ve gotten more and more careful to monitor my activity. I’ve become aware of the way a muscle feels when it’s starting to reach that point. That means I don’t have problems often.
I have to avoid NSAID class medications except in emergencies. For some people with FMS, they increase symptoms. These include aspirin, ibuprofen, naproxen sodium, and everything related. The safest way to check whether you have this issue is to take a dose of aspirin. It will be out of your system in 2 to 3 days. If it does make you worse, you won’t have to suffer for weeks.
Of course, in case of a heart attack, I would take aspirin as directed. A couple of days of extra pain doesn’t even matter at that point.
The over-the-counter pain medicine that doesn’t hurt is acetaminophen (often called Tylenol or Paracetamol).
I’m not sure what it is like for other people, but I suspect I have had Fibromyalgia my entire life. As a child, I was always hurting, but I was told it was just “growth spurts“. Things that didn’t seem to hurt other children (rough playing) were excruciating to me. I didn’t have a lot of energy, even when most kids were busy running and playing.
I was very sensitive to weather changes and preferred to stay indoors, and I was “sick” a lot. I seemed to get every cold that come along, but sometimes I would fake being sick, so I could stay home from school because I was just so tired all the time. As a teenager, I didn’t go out and do a lot of things with my friends, because I couldn’t keep up with them.
I didn’t participate much in school events, clubs or sports, because I didn’t have the energy. I struggled in school, because I had a hard time learning, concentrating, focusing, and remembering things. I barely passed tests, and even though I was learning the material, I had trouble getting it back out on paper for assignments.
I felt like my memory was like swiss cheese, full of holes. Especially when it came to remembering history dates and names, math formulas, and chemistry equations. When I was 17 I started college but after a year and a half, had my first major flare-up, and collapsed doing an aerobic routine. I was sleeping literally 18 hours a day and was so exhausted I could barely get myself to the bathroom or chew my food.
I became so severely anemic I almost died. My doctor said if my iron level had dropped even one more point (it was 14. Should be at least 50-100) she would have forced me into the hospital. I had to quit college. A year later, I went back but again had to leave because I was flaring up again. I had to quit or was fired from jobs, because I was too slow, and couldn’t keep up with the workload, no matter how hard I tried, and the more I pushed myself, the sicker I got.
By the time I was 25 I couldn’t work at all. I was young and looked healthy, so my doctors just told me I was depressed. It was years before I got a full diagnosis. It took two different psychologists to suggest to my doctor that I get tested by a specialist for Fibromyalgia before I could get anyone to realize I wasn’t JUST depressed.
Day to day, my pain level is at about 6/7. It’s primarily manifested in both my legs, my left hip (sciatica), my back, shoulders, and neck. Occasionally have so much pain in my hands I can’t even type on the computer (which makes my chosen profession as a writer more difficult than most).
My life is pretty limited because any physical activity beyond a 20-minute walk once or twice a week sends me into a major flare-up that lasts weeks at a time. When this happens I can not function at all and am bedridden for days at a time. I can’t do much but watch TV and sleep.
During one flair, I once slept for three days straight, because I was so exhausted. I didn’t even eat. I woke up once, to use the bathroom and sip some water, and passed out again. Once I woke up, I felt really good for about six hours, and then the fatigue hit again.
I have very few days when I feel “normal”, or energetic. No matter how much sleep I get, I am ALWAYS exhausted. I suspect it’s the same kind of tired new parents feel when they haven’t slept a full night in a year. I remember one time, when I was about 14, I woke up in the morning and actually felt refreshed and energetic, like I could face the day head-on and bounced out of bed. Literally, bounced.
I remember it so well because the entire day I was confused. I had never felt that before, and it was so foreign to me. The next day it was gone. I have never felt that again. EVER. If that is what it feels like to be “rested” I’ve been screwed out of good sleep my whole life. One day out of 32 years isn’t much.
Out of a 30 day month, I have maybe one “Less Bad Day” a week. If I’m lucky. I am lucky enough to have a man in my life who understands my limitations and doesn’t expect me to do more than I am able to. He often does the errands, and a majority of the housework, because I just can’t finish it all.
When you have Fibromyalgia, there are no good days. Not really. Days fall into three distinct categories:
1. Flair ups: Days when you are in so much pain you pray for death but it never comes. You feel like you’ve been hit by a truck. No amount of drugs help.
2. Bad Days: When all you can do is take a shower and brush your teeth if you’re lucky. Housework and errands have to wait because you’ve used all your energy just bathing. Strong pain meds take the edge off, but you have the energy level of a geriatric slug wading through tar.
3. Less Bad Days: When the meds kind of work, but you still hurt, and you don’t really want to do anything. But, you suck up the pain and the exhaustion and force yourself to go grocery shopping because if you don’t you’ll starve. It’s really a matter of survival priorities when you have Fibro. Most of us just try to get through each day and do whatever we can to not cause a flair-up of symptoms.
I can tell you as someone who was diagnosed with PMR and fibro, most PMR info on the internet isn’t all that accurate. PMR usually affects elderly women, but it’s not so rare for younger folks to have it. And, most who are below the age cut off aren’t even given the blood tests needed to confirm the diagnosis because doctors just think it’s impossible to have PMR at 30, 40, 50 years of age.
I was 54 when I woke one morning thinking I must have the flu due to the unexplained pain and stiffness in my body. Over the course of two weeks, I had two primary care visits, pretty large doses of pain meds, increasingly painful stiffness that lasted until 2 or 3 p.m., severe sleep deprivation, rapid weight loss.
I thought my normally attentive primary care dr might have a cruel streak in her when she denied prescribing me steroids (I was desperate for relief) even for just 2 or 3 days until my appointment with the rheumatologist arrived. She explained it could mess up important blood work the rheumy would likely need.
By the time I saw the rheumatologist (just 2 weeks from the onset of symptoms), I could not dress my upper body, wash my hair, or brush my hair because of the pain and extreme lack of mobility in my shoulders, upper arms, and neck. I couldn’t drive because I could not turn the steering wheel or press on the brake hard enough to stop it from moving.
I couldn’t turn my head to look to the side let alone behind me to back up. I literally performed an off-balance hobble to the bathroom when needed, and spent the rest of my time in a recliner. It was the least painful thing I could do to help myself. I could barely hold a fork or spoon let alone cut any food.
My lower body was crippled by horrible pain and unbelievable stiffness. Feet, ankles, knees, hips are all affected. This was sheer hell. Every single day my condition worsened exponentially. My first time in a wheelchair was my first appointment with a wonderful rheumatologist. I needed help getting out of the wheelchair and into the SUV to go home because I couldn’t rise without falling back to the wheelchair seat.
I went into all that because when I googled my symptoms, PMR was often a result but I didn’t think it was that because the information didn’t even touch on the severity, that it could be completely disabling within just a few days time, or the widespread symptoms outside of the upper body morning stiffness. No way did those symptoms cover what I was experiencing!
Upon diagnosis, I started a prednisone regimen and found a couple of PMR groups on Facebook. When I read thru the posts of the first group, I did it through heavily flowing tears and frequent nose-blowing breaks. I scrolled and read all night long. THESE PEOPLE WERE DESCRIBING MY EXPERIENCE!!! I truly felt 100% alone in this outside of my rheumy understanding what was happening and assuring me I’d get better.
Nothing in print truly confirmed my symptoms. When you are at a pain level of 8 to 10 every single moment of every single day, when the 30-minute increments of sleep you manage a few times a night end with the sound of yourself moaning in pain loud enough to wake you, when you’re hypersensitive to light, sound, motion, touch, and the best-printed info you can find makes it sound like you have some aches and pains in the morning, you feel A.L.O.N.E.
It was in the FB groups where I learned that the severity of symptoms and problems simply getting yourself to the toilet to pee was the norm. Countless people younger than me had PMR. Countless people suffered for months, got addicted to pain meds (which do not help PMR, by the way), were brushed off by doctors as complainers or drug seekers, never even received referrals to rheumatology! It’s a fairly rare condition but frequently misdiagnosed or undiagnosed, and not treated properly.
Bloodwork alone doesn’t 100% confirm PMR. But, bloodwork combined with improvement with prednisone is confirmation. Unfortunately, so many in the FB groups have struggled for years–even decades–because we are individuals who respond differently to the same treatments.
Prednisone is the cure (although some have achieved success with an anti-inflammatory diet & lifestyle change). No amount of pain meds will help. I know. I was on heavy doses for 2 weeks.
I was fortunate to start low-dose pred, increasing dosage until I was able to function. Stayed on that dose for a couple of months & tapered down (which was scary because each small decrease in dosage brought on flares for a few days) over the course of a few months. I’ve had a few flare-ups since, but the bloodwork was borderline, so I chose to wait it out & I was lucky enough that the flare-ups passed on their own.
When my rheumy diagnosed the PMR, he said he thought there was something else going on too but he wanted to get the PMR under control first. It was later that he was diagnosed the fibro. Fibro is a bitch. I hate it. It’s unpredictable & the brain fog not only makes you feel like you’re losing your senses, I think it can actually make you crazy at times.
It’s a struggle to mentally and emotionally deal with the daily pains & bouts of extreme fatigue, and flare-ups that can leave you bedridden, but it’s the unpredictability, the making plans and doing everything possible to be prepared to keep your plans or commitments, and not knowing until the time comes if you’ll be able to do it….and if you are, how long will you last?
The two conditions are similar in that they push the limits of pain & fatigue, but they are very different, at least for me, in how adversely they affected my life. I’m one of the lucky PMR-ers because my length of treatment fell within the parameters of most descriptions, and my steroid dosage was in the middle range too.
As much as I hate fibro, I’d choose it over PMR if I had to choose one or the other. Unless there’s a guarantee PMR will be treated with success in getting off prednisone, I’d choose fibro cuz I wouldn’t stick it out for years and years with PMR pain, or OMR pain-free but stuck on prednisone forever.
So, if anyone had the patience to sit thru my ramblings, I hope you felt you gained some helpful insight. My intent was to inform readers that most material describing PMR (including that handed out by doctors) makes it sound like a Club Med experience compared to the living hell it really is.
If you suspect you may have it, insist on seeing a rheumatologist for the best chance of successful treatment. Successful means little to no pain and steroid-free! This turned out to be therapeutic for me and I’ve never discussed my experience like this with anyone–ever!
