I have so many auto-immune diseases going on, I’ll begin with fibromyalgia.
When I lived in Vermont, one morning I could hardly get out of bed…all my muscles and joints hurt very much. I thought I’d have to call an ambulance. I lie there a while in bed. Eventually the severe pain eased us. I had what is known as a “flare”.
I went to my Dr. She said her office would make an appointment with a teaching hospital in New Hampshire. I was given a ride there. The Physician’s assistant pressed on various muscles…wow! Did that hurt! I was given no information. I didn’t know a thing!
A friend of mine had scads of information.
What happened is how our brain and spinal cord process pain signals. They are very exaggerated! Most of fibro. patients are women. Also if you have another painful disease like arthritis, and have anxiety and depression. Also, if you were emotionally abused or physically abused.
Fibro. can give you headaches, dry mouth, nose, and eyes. Sensitivity to light and sound, heat or cold.
Treatments: moist heat, gentle exercise…meds used are Cymbalta and Lyrica. But the best one for me was Plaquenil. it’s a malaria drug. It helped immediately.
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.
I’m not telling you what not to do, but a way to get to the point where you can do things. Avoiding things with fibromyalgia is a slippery slope. It reinforces how disabled you are. You need to be active, but very slowly increasing what you’re doing
Go to a physiotherapist and tell them you want to start SLOWLY you are able to move your knee fives. Do it. Tomorrow do six times, and soon. Each day add one muscle group with the same gradual increase. Start doing very short walks just half a block a day for a week, then ¾ block a day for a week. People will say that’s not going to help. Of course, initially, you won’t notice a difference, but after a few weeks, you’ll find you can do a surprising amount.
Tai chi is a very gentle exercise and if you go for only 10 minutes initially and gradually increase You will feel better mentally too. Get input from a physio as to the best muscle groups and how to exercise them.
One of the things that fibromyalgia patients often do his nap during the day. However hard it is, don’t nap. Go to bed at the same time every day and get up at the same time (set an alarm if necessary) Saturday and Sunday too. Getting back into a regular sleep pattern.- patients always said it was impossible.
I’d say if you went to Japan, within a week your sleep pattern would change. So you can do it! It takes determination, but it does help. Sleep disturbance is a major problem with fibromyalgia and it’s not helped by napping. If you wake up in the middle of the night get up for a few minutes have a drink of warm milk or a small snack and go back to bed. If you’re in pain use a hot pack or whatever works for you while you’re having your drink.
Eat meals at regular times. Remember how miserable young children get when they don’t get food on time. Get massages, go swimming in a warm pool ( most Ys have an evening when a small pool is warmed for very young children. Try an aquatic exercise class and remember to start slowly (5–10 ) minutes to start increasing by 10 minutes a week.
One of the big keys to improving fibromyalgia is to consciously get your body back into a routine. Another thing I saw over and over was someone in the early strange of working this program was they’d go out and mow the lawn or spend two hours at the grocery store and lifting heavy bags. Tell everyone when you start what you are doing and that you are working very slowly.
Initially, you need to get lots of help, but after a month you will find you can do a little more. Buy prepared meals or get delivery. Get family members to load the dishwasher, do the laundry for the first few weeks. That’s all exercise. Do not lie around in bed. Read, play music, etc get friends over for tea or coffee go to the movies.
Gradually increase the amount you do as your physical fitness improves. And it will. Can you wiggle your foot five times? Of course, you can. You won’t feel bad tomorrow when you wiggle it 6 times. You can increase daily or alternate days. If you work and sit all day, get up stretch and go for a short walk down a corridor or to the washroom. Sitting in one place really stiffens you
Depression makes management of pain more difficult, so if you are depressed go and see your doctor and get help. Pain clinics and acupuncture can sometimes help. Meditation, relaxation creative imagery with a therapist can help
I have helped many people with fibromyalgia and they usually do very well. The key is to go slowly. If you overdo it you’ll get discouraged. One of my family does sweet nothing for days and then vacuums the house from top to bottom. He then lies in bed for a few days moaning and groaning and feeling martyred. He sabotages any recovery.
Doing things slowly may be frustrating. The house may be in a mess, you may be living on take-out, frozen pizza, etc. But it’s not forever and your family and friends should understand if you explain.
If prescribed take antidepressants, and pain medication. I advise fibromyalgia patients not to get on tranquilizers like Valium Type drugs. They really don’t help fibromyalgia and it’s easy to become dependent. Also, they mess up sleep patterns. A nonaddictive medication for sleep that works quite well with no hangover is Melatonin with L theanine. Just check with your pharmacist that it won’t interfere with any of your other medications
Ask your pharmacist. I know Costco has it So do many stores selling healthy foods, vitamins, etc.
Good luck. If you really commit to this I guarantee you will improve your quality of life. This is not about what to avoid? It’s about getting going and taking control of your illness.
Fibromyalgia has a bad reputation because many members of the medical community doubted that it was a real disorder until the last several years. Even with the change in perception of the disorder, there are still a number of medical personnel who do not believe in it.
Fibro is one of those things that cannot be proven by standard medical testing. As a result of this, many who are relatively naive about it still think it is all in our heads.
It isn’t.
The perception is slowly changing. Recognition by the CDC over the past several years has helped this. Having Social Security add it as a recognized disability further helps. There are still those out there who doubt it, and unfortunately, many of them are highly outspoken about their thoughts.
Coming from someone who suffers from it, this attitude is detrimental to us fibro patients. It is hard enough living with the unrelenting pain as it is. Since they have taken away many of our medications, we have discovered that it is even more debilitating than many of us were aware of. I went off my meds voluntarily almost a year and a half ago.
I was sure that I could handle it. I was wrong. I’m now at a point where I am very aware of what I am unable to do because of my pain. My depression over my pain has increased. I have tried many different alternative treatments including the low dose ketamine infusions that only served to poison me and put my butt in the hospital and in a position where high dosages of steroids had to be used which then served to crash my immune system.
I’m currently looking for a new pain management practice that is willing to take me on as a patient.
I do want to make something very clear here – I’m not addicted to pain medication. I never was. Since my fibro reached epic proportions in 2009, and actually before that, I get no buzz from opiates. I only experienced enough relief to function as a normal healthy person to some degree – not completely mind you because that can never be with my levels of pain.
When I took myself off of my meds in 2017, I experienced almost no withdrawal symptoms, and those that did show up faded after 48 hours. I do not crave them but I will admit that I miss them, and some days are worse than others.
I’ve tried just about every medication possible over the years, and have just recently ended up with a configuration that works for me. Some of these are atypical, and were prescribed for something else but ended up helping.
I am putting my results with each here, because although everyone reacts differently – especially fibro patients – I have found it helpful seeing other people’s experiences in order to help figure out where side effects were coming from and to have suggestions to take to my doctors to see what they think of it. Often there are meds they haven’t considered, or had forgotten about that could be helpful.
For example, was the last resort to pull me out of severe allergy-triggered depression. Doctors refuse to prescribe stimulants for Chronic Fatigue. The Psychiatrist who prescribed it was shocked at the results, saying I responded to it like a narcoleptic. I have been on it ever since, and if I don’t take it, I just end up asleep all day long.
Is a pretty amazing drug. It’s known to cause weight gain though, although I’m only up 5lbs from when I started it almost a year ago, so it doesn’t always. I am unable to take conventional antihistamines anymore, and can’t take prednisone on an ongoing basis or I end up losing my cognitive abilities.
So I asked my doctor for something to suppress my immune system because my fibro was flaring badly. Another patient of hers had been given Doxepin by an allergist, so she gave it to me to try. I haven’t had a major flare since going on it (10mg 2x/day), and my (environmental) allergies have been almost completely controlled. Great stuff!
Is a blood pressure medication and can have an antidepressant effect at higher doses, and also works magically well to prevent migraines. I was getting up to 6/day every day and they were totally debilitating. The neurologist gave me this, and I only get 1 mild migraine a month now. I am on a fairly high dose so get some antidepressant effect as well, but I don’t feel stoned like I did on Effexor, and don’t get the druggy-looking eyes either.
My bp has been low all my life but suddenly went super high last year. This stuff helps control that (along with the Verapamil) and also alleviates excess bloating from food issues, so I no longer look like I might be pregnant after having a meal I didn’t prepare myself (most ladies will be able to relate to this).
I can no longer take painkillers after landing in a pain cycle last summer. I have managed to stay off them almost completely for the past year under this medication regimen. The only time I took anything was after the surgery, and I managed 5 days before the cycle started again. It wasn’t a fun recovery!
Low-dose Hydromorphone was the best of the pain meds for me. I was on Tramacet for years but it stopped working and started fogging up my brain badly. I went on Hydromorphone and my head cleared right up. I also needed far less medication when on it, which was easier on the body. Codeine makes me turn suicidal, so can’t go there.
This is the part of marijuana that doesn’t get you high. I can’t tolerate THC even in the smallest dose, but CBD is an amazing painkiller. It made me hungry but killed the pain. Unfortunately, after a time, it also starts the pain cycle up, so I limit it to emergencies now.
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.
