Or My Personal Pain Puzzle
Some people are diagnosed with an incurable disease.
Some are cursed with an undiagnosable▾ disease.
What I have learned about chronic pain and what I have learned about myself
I should mention up front: I have been very fortunate financially, have a supportive, stable family, I have had no substance problems, and I went into a low period with youth and relative health, a healthy weight, and started out relatively active (walking three miles a day, taking the bus and train).
At the same time, given all of those factors going for me, invisible▾ chronic pain and fatigue are no joke, if they can challenge someone otherwise set up for success (relatively speaking, admitting my privilege, your mileage may vary, etc.)
I also want to state up front that I saw six doctors and six specialists (massage therapy, physical therapy, pain psychology, sports medicine, physical medicine) and no one had a simple, easy answer and some gave incorrect, useless, or harmful advice. The pain psychology group meetings were by far the most helpful, setting me on a path where I could learn how to manage and improve independently.
My issue was kicked off in 2012 and 2013 by multiple factors, including
- "A" Repetitive Stress "Injury" at work (or "Cumulative Trauma Disorder", probably both BS diagnoses. See also central sensitization▾ caused by unending muscle knots.)
- Two consecutive layoffs in six months (emotionally, these felt connected to the first). (Note that employers are legally barred from firing someone because of an injury caused at the workplace. But if you lay off a whole boatload of people at the same time, then hey, you are protected legally!)
- My self-inflicted leg "pain"jury: I was trying to beat stress by walking and I ended up overexercising at the gym, then lost exercise as a venting mechanism, so even walking became a nightmare too.
- Turning thirty, paying the piper, not understanding myself and my limitations hidden by youth.
- 110% Intensity Personality, almost hypomanic. I get "pulled in" to stuff.
My problems were probably set in motion several years before that, in terms of hours worked, side projects, how I handled stress, sleep and ergonomics habits, lack of physical self awareness, lack of just a bit of regular strenuous exercise, etc.
What Works for my Specific Chronic Pain / Chronic Fatigue Issue
(Not medical advice.)
What do you do when all your effort backfires and makes things worse, where you feel like your body is allergic to effort? (And you tried "resting" or doing nothing for months but that clearly did not work either?) Especially if you are the type of person that thrives on effort (professional life and hobbies and ways to blow off steam?)
For several years, the pain, fatigue, isolation, anxiety and low mood cycles were hell. The harder I tried, the worse it made everything: I was used to trying harder making things better, but this was its own beast. During this time, I had trouble walking without my muscles (eventually my whole system) complaining for days. I had trouble driving. I felt trapped in my apartment.
Untangling such a complicated situation is obviously difficult, but here is an attempt to line up the pieces of a quilt of strategies that somehow worked and I hope will continue to work:
|Contributing Factors||Possible Partial Remedies|
I will probably always be susceptible to flare-ups and longer-than-should-be-necessary recovery times. However, about three years in, I am actually feeling pretty good, especially in the last year or so. The treatment I needed was perspective, or growing up, acceptance, patience, balance, pacing, and time. I have built daily and weekly habits (thirty minute routine of self-massage, mobilization warm up, and light resistance exercise) that adapt to my energy levels, but which I never abandon. I exercise at the pool on Tuesday and Thursday, rain or shine. Sometimes I phone it in a little, but I still go through the motions. I always show up. Working even three days a week has been an important part of my mental health recovery and a symbol of my success. I recently logged 50 miles of walking (10,000+ steps a day) on a seven day vacation, with no unreasonable post-exertion recovery time (in the past, one long hike could result in a recovery measured in days or weeks). I share my gratitude for this accomplishment with close friends and family who stood by me as I slowly made it to this point.
Questions to answer for yourself:
- How will I spend my time? (Not "What will I accomplish?")
- What habits, however small, will move me forward?
- What can I do, in terms of showing up, even on my very worst day?
- How can I accommodate my limitations without either giving up completely or ignoring my limitations to my detriment?
▾ Undiagnosable Disease
Medically Unexplained Syndromes
Fibromyalgia, myofascial pain syndrome, chronic fatigue syndrome and other medically unexplained syndromes are terms used by doctors in the context of a diagnosis of exclusion, not an actual disease. In other words, fibromyalgia is more of something the doctor "has" (lack of ability to find a specific problem, restatement of patient's maladies, modern medicine lacking clarity and just putting people in an insurance diagnosis code bucket) than something the patient "has".
The philosophy of trying to prove a negative is interesting. It requires disproving all positives one by one, which is hard enough, and most doctors usually attempt to eliminate the possibility of any specific underlying diseases. Not to blame a given doctor, but the fact that we have medically unexplained syndromes is more a problem with medicine in general. Doctors love pathology (sort of pathological, huh?) and love treating diseases they can help with, not something invisible -- which is understandably frustrating to both patient and doctor. But it is an interesting thing to reassure any readers out there about -- you are being given a label to move you through the system, not because you "have" an actual diagnosable disease. Over time, as human knowledge increases it is possible and even likely that these MUS will shrink, instead of effecting 2% of population, with a single label!
Just because they can't see it doesn't mean it isn't a real problem
And more importantly, it doesn't mean other people don't suffer from the same problem. Really. You are not alone.
This includes other invisible disorders ("with no discernible cause"), such as mental health, nervous illness, phobias, anxiety disorder, obsessive compulsive disorder, post-traumatic stress disorder, chronic fatigue, even invisible eating disorders, etc. Now I have a lot or more empathy for anyone stuck in a situation that is not completely "their" fault, but they feel like their sole responsibility. (See also various addictions, cyclic self-destructive behaviors, etc.) Please get help somewhere. Reach out. You probably cannot do it on your own, but no one can reach out for you and no one can do it for you.
The funny thing is, now some of these disorders can be seen by fMRI studies. But don't expect your doctor or insurance to go to the trouble. (In a lot of ways, just asking you questions may be a lot more effective anyway.)
See also Pyschogenic, In Your Head.
▾ Central Sensitization v. Other Conditions
Mostly Not-so-useful-clinically Diagnoses
When I asked my doctor about undiagnosed peripheral neuropathy or small fiber neuropathy he said that there was no way for him to tell the difference between peripheral neuropathy and something central like fibromyalgia or central sensitization, and the treatment would have been the same: psychiatric medicine like citalopram (Celexa) or the like.
When a practicing doctor says that psychiatric medication helps people with fibromyalgia they are not basing this on evidence (what is the NTT? I would love if Paul Ingraham of PainScience.com wrote about the inefficacy of even FDA-approved 'fibro' drugs. The efficacy numbers I remember seeing on NIH.gov or whatever were damning those drugs with faint praise, given the side effects), just basing it on their experience, which is notoriously flawed because the patients who were not helped do not come back to the doctor who is unable to help them. And when they do get better they do not come back because why take your car to a mechanic when everything is working great? And even then the doctor would feel happy for the patient instead of drilling them to write a 4,000+ word essay on all of the different things they had to do in order to overcome their problems.
▾ Consistent Cardio Exercise
Aside from the obvious benefits (blood flow, muscle health, heart health, etc.) consistent exercise has many benefits for the mind, the brain, and the nervous system in general:
- You get a mood boost from endorphins, the natural version of morphine, without the negative withrawal effects. In fact, it probably raises and regulates your natural endorphin level over time.
- You get a mood boost from the dopamine produced by accomplishing something and seeking new stimulus.
- You keep an important habit going and gain self condfidence that you can control your health.
- "Aerobic exercise promotes rapid and profound alterations in the brain," according to this abstract and brain plasticity research.
- Exercise promotes and regulates the release of growth hormones, such as IGF and NGF.
- Exercise (when it is not backfiring) can help you sleep by helping you feel tired, but not fatigued. It can help cut down on the restlessness that comes from a chronic fatigue issue. The benefit of this increase in sleep is also neurological and mood-stabilizing.
▾ Frustration with the Medical Establishment
Not knowing whom to turn to
I am sure I am not the first to be frustrated with the medical establishment and the gap between their promises and suggested remedies, and those of the "alternative medicine" crowds, who also promised much which did not pan out.
Who actually knew what they were talking about, based on reality and hard evidence? For example, multiple physical therapists gave me exercises as a prescription, stretching or "strengthening" usually the core or hips, which is notably not the issue for a chronic pain problem (see: this entire article). Not that the suggestion to keep the body moving is a bad one, it's just the details are oversold. (The warm-up (motion) exercises and resistance exercises themselves are useful, when done on a regular basis, but their effects can take months or years to appear.)
Paul Ingraham of PainScience.com deserves ample credit for filtering through the BS on all sides but still offering actionable and effective advice. He keeps everything up to date with recent research, yet he is not trying to overwhelm you with all the new results of studies that overpromise cures or are too expensive to try for yourself.
▾ Over-the-Counter Medication
Limited but actual usefulness
While we are on the rocky ground of What Worked for Me, I think it is worth mentioning that over-the-counter analgesics and sleeping aids, such as diphenhydramine, can help break the cycle by allowing a chronic pain sufferer to feel like they are getting through their day on their own and not trying to "push through more daytime pain with painkillers" but using them selectively to force their system to calm the heck down when they go to sleep at night. Bonus points for using lower doses, or using them every other day to keep them more potent. I would be shocked if this was not one small but very important factor in my own recovery. Getting those two years of better sleep was critical.
Note that this is not medical advice. And always follow the dosing instructions on the labels and never take for longer than it says without consulting your doctor. But then again, your doctor may give you advice that contravenes the labels, which is also potentially dangerous (unless you are doing lab work that can detect and prevent any long term or fatal problems). Acetaminophen (Tylenol, Paracetamol) is a very effective drug and safe at listed doses, a poison with very useful side effects, but very dangerous very quickly.
Also, doctors will tell you that inflammation is the problem, but it is not that simple, and again, even "label-safe" use of anti-inflammatories for a long period of time is dangerous.
▾ Mindfulness / Second Arrow
I hear advice about learning to ignore pain and I think this is a strange thing to explain. The high level advice is actually surprisingly important, if one is to make progress on one's pain journey, but the low level details are tricky, on how to learn to do this.
You can think of it as learning to be with the pain, but not become the pain, not ignore but acknowledge, learning to not be affected by it. You are not pretending it does not exist. You are just seeing it for what it is: all smoke and no fire, but what a lot of smoke it is.
In Buddhism, there is a phrase the Second Arrow or the Second Dart. The first arrow is shot by someone or something else, the second arrow is the one you keep shooting into yourself as you re-experience, resist, and resent the first arrow.
Trying to ignore pain wholesale is likely what caused the root problem in the first place: a lot of people who develop a chronic pain problem (according to my experience and the pain group I attended) have been super focused, type-A, overachiever types all their lives, who are great at ignoring pain. Then they reach their late twenties/early thirties, or they have large crises in their lives, or both, and this no longer works -- what they need is more mindfulness and bodily awareness and a pacing strategy, not more martyrdom.
The most important thing I learned in these multiple years of craziness was understanding how to let my body adjust to increased exertion, over a long period of time, and learning to expect but not suffer from the inevitable pain, avoiding letting it become a frustrating mess, separating the signal from the suffering.
What ended up happening was that I learned to become a different person, with accommodations, but a whole person nonetheless. Doing this consistently for several years, and learning to be happy with this person, and somehow now I am more of the old person too. Some real healing did occur, and my system is more resilient. And as I age I have all these strategies and habits to use as tools to face any other new challenges that come my way.
Pain makes itself the priority whether you like it or not, and if you are trying to sleep but sleep is not coming and you are told to "ignore" the pain that reawakens you, as if you haven't tried that, this could be a challenging bit of advice. Personally I would phrase it as "accept / cope / acknowledge / manage / live with" it versus "ignore," which puts people at risk of having a pain flare up, which can set back progress -- refer to the Morimer Mosley pain model (Explain Pain, with David Butler, or PainScience.com's use of the term "Goldilocks zone"). With pain flare-ups you find that you have to be willing to live with the pain in general, but draw clear proactive lines in specific (hobbies, work, chores, social, vacation, etc.) in order to make progress in letting your body renegotiate an appropriate pain response, over time.
▾ "In Your Head"
Sometimes people offer easy solutions to complicated problems, as if you can solve anything interesting in a day. In that spirit, you cannot think your way out of pain and fatigue all up front. But you can practice changing how you think about things, and over time, change how your system responds, and that can be effective.
When the first doctor I went to (a really crummy GP who ran his office like something from the movie Brazil) evaluated me, he told me my pain was psychogenic (also known as psychosomatic). The frustration with modern medicine would have sent me straight into the arms of alternative medicine at the time if I had not already been a bona fide scientific skeptic.
When I hear this now, I think "all pain is psychogenic" since all pain is top down. Pain is created by the brain. If you are a doctor, do me a favor, and if you mean based-in-psychiatry or brain chemistry or mood disorders or mental health or emotional pain then say so. Don't use a vague truism, since all pain is generated by the psyche! (Evidence: the entire field of anesthesiology.) Also, make sure to mention someone is not a bad person because of this. Just like someone with clinical depression or bipolar disorder is not a bad person for being unable to pull themselves out of an invisible▾ (to current medical technology) but just-as-real situation.
The funny thing is, this diagnosis was actually not totally off the mark, he just did not tell me what to do about it. See also Mindfulness and Autonomic Nervous System.
▾ Autonomic Nervous System
Understanding the autonomic nervous system was helpful in understanding why pacing was so important, how adrenaline, stress, and pain interact, and why insomnia made everything so much worse. (And why exercise resistance can make it hard to reestablish an exercise habit, since exercise causes adrenaline/norepinephrine plasma increase in proportion to exercise intensity.) You can have a chronic autonomic nervous system dysfunction (usually caused by chronic or acute stress) without having a diagnosable disorder (assuming this applies to you and doctors have ruled out other narrow causes).
According to Wikipedia,
The autonomic nervous system is a control system that acts largely unconsciously and regulates bodily functions such as the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response and the freeze-and-dissociate response.
Note that it says that the system acts largely unconsciously. But we all know that conscious input can effect it, for example stage fright (butterflies in the stomach) which some experience as projectile vomiting! Experienced performers still get nervous before shows but their system has just learned to experience the adrenaline ride as excitement, instead of gut-rending panic attack. And novice performers, when faced with a large crowd for the first time, often let their nerves get the better of them, depsite "trying really hard" not to be nervous. It takes training and experience, not something that can be done "consciously" all at once.
However, we also know that we can have conscious control of our breath (duh!) but many of us do not use this to our advantage. That is part of why deep breathing for sustained periods of time, on a regular basis, can help stop our nervous system from freaking out. It really does work and it really is mind over matter.
The autonomic nervous system has two branches: the sympathetic nervous system and parasympathetic nervous system. The sympathetic nervous system is what might try to save your life if you are being chased by a wild bear. A big kick of adrenaline and whoosh: you are running faster and jumping higher than you thought possible. If you escape the bear (or whatever acute danger) you can enjoy the bitter taste of adrenaline in your mouth as you catch your breath and your heart finally calms down. The parasympathetic nervous system cleans up the mess.
With chronic stress the parasympathetic nervous system may be overtaxed and unable to compete with a hyperactive sympathetic nervous system. However, this is one of the ways that recovery can happen over a period of a few years: strengthening the parasympathetic nervous system and calming down the sympathetic nervous system. Some evidence that this might be what is happening? A mostly recovered "fibromyalgia" sufferer who has a weird muscle pain flare up during an emotionally stressful event, such as a vomit-inducing election or mistakenly buying a lemon of a used car. Said individual may still suffer from nervous illness and feel extreme widespread pain occasionally, though they may have better coping mechanisms, habits, mindfulness, and a system that recovers faster and returns more quickly to an overall higher average level of wellbeing and higher mood. They may not be able to control their mood completely, but they can get back on the horse, and go back to daily habits that move their life forward and restabilize quickly.
▾ "Fibro fog", malaise, depersonalization
If you have ever traveled and had jet lag, maybe been hungry, and felt that you are dreaming, that you are disconnected from your body, but you know you are awake, the psychology term for this is depersonalization. That was certainly a symptom I had along with pain, fatigue, insomnia, etc. Worth mentioning since knowing the name of something helps you search for or read about it. It was never a big issue for me, just something I noticed occasionally, along with the pain and fatigue.