Swearing into Pain Management

I’ve run into a few articles going back to about 2010 that have demonstrated that swearing can alleviate pain. It has a hypoalgesic effect. So if you stub your toe in the middle of the night, go ahead and wake up the household swearing, because the pain will diminish. I found that to be rather fascinating. It may be my next experiment, just because it could be fun to be sitting quietly at work and just rattle off a string of curses to see if my generalized pain will decrease for even just a few minutes. It won’t, and I probably wouldn’t stay employed. I do have questions, though…

  1. For swearing to alleviate pain, does it have to be very loud? Just thinking curse words wouldn’t work, would it?
  2. One study (Robertson, O, Robinson, Sarita Jane, and Stephens, R (2017) Swearing as a response to pain: A cross-cultural comparison of British and Japanese participants. Scandinavian Journal of Pain, 17) demonstrated that swearing, no matter cultural differences, does work on pain and that swearing increases pain tolerance. We can take more pain if we swear.
  3. As a warning, however, another study (Swearing as a response to pain-effect of daily swearing frequency. Stephens R, Umland C.J Pain. 2011 Dec;12(12):1274-81) demonstrated that people who swear normally in daily conversation don’t have the same pain relief as those who save their swearing for the most appropriate moments of physical pain. So don’t drop the f-bomb unless there’s bruising.
  4. Since chronic pain is continuous, and if you swear continuously, it lessens the effect of swearing on pain, this is probably not going to prove to be a good method for pain relief for those with fibromyalgia. Right?

I have a theory. It has to do with why swearing might help. I know there’s chemicals involved. To be honest, I haven’t read the articles in full to tell you why swearing works, but I’m sure it’s hormones. If you swear and your body keeps releasing the hormones when you don’t need it, then your body gets used to it, etc, etc, so swearing doesn’t work anymore. That’s just me filling in blanks. So let’s just say that’s close to being almost right. Scenario:

  • I stub my toe
  • My toe tries to disengage itself from my foot
  • I hold onto it and hop around a little
  • I swear several times out loud with feeling
  • My brain releases some hormones that has an hypoalgesic effect
  • My toes doesn’t hurt SO much. It still hurts. We all know, it still hurts, but not AS much.

The brain is probably reacting to both the pain and the emotional force that swearing provides by releasing chemicals. We all know “gosh darn it” can never be as emotionally meaningful as other iterations – we need the other iterations. Chronic pain doesn’t work like that. However, new scenario:

  • Wake up in the morning and can’t move your legs. Too much pain in hips, back, and legs.
  • Kids starting to move around to get ready for school. You can’t turn your head because your neck is stuck.
  • Work is expecting you in an hour. Your eyes won’t stay open. They’re blurry and burning and dry.
  • Take in a deep cleansing breath through your nose, blow it out through your mouth. Take another deep cleansing breath through your nose, and blow it out while shouting every swear word you ever heard your dad say when he was building the sandbox while swinging your legs over to the floor and standing up. Don’t stop swearing until you’re on your feet. Concentrate on finding more words, like the ones your uncle taught you when you were six to shock your mom. And then pause. Deep cleansing breath in through your nose, and blow it out through your mouth. You are ready for the day.

And that is how swearing can help fibromyalgia patients.

Just Checking – Is There a Cure Yet?

Since I’ve been neglecting PubMed and recent medical research into fibro, I decided to do a general search: fibromyalgia cure (articles published in 2021-present). A few came up:

Fibromyalgia Pain and Depression: An Update on the Role of Repetitive Transcranial Magnetic Stimulation. Abdul Haque Ansari, et al. ACS Chemical Neuroscience (2021). 12: 256-270. “While there is no permanent cure for fibromyalgia, some interventions are available with multiple side effects” (emphasis added).

Influence of Multidisciplinary Therapeutic Approach on Fibromyalgia Patients. Simona Patru, et al. Experimental and Therapeutic Medicine (2021). 21: 528. “There is no specific cure for fibromyalgia (FM), but combined non‑pharmacologic and pharmacologic treatments may mitigate symptoms and improve quality of life in patients.”

Pioglitazone Improves Skeletal Muscle Functions in Reserpine-Induced Fibromyalgia Rat Model. Fatma E. Hassan, et al. Annals of Medicine (2021). 53: 1033-1041. “There is no definitive cure yet for FM-related health problems.” (But, there is hope for rats!)

Effects of Resistance Training on the Mental Health of Patients with Fibromyalgia: A Systemic Review. Guilherme Torres Vilarino, et al. Clinical Rheumatology 2021. 40: 4417-4425. “As there is no cure, several treatment alternatives have been investigated, including the practice of resistance training.”

There was one other, but it turned out the keyword “cure” actually hit on one of the authors, Dr. Cure, apparently. But what a great name for a doctor, huh?

Reading through these abstracts is definitely not studying the current research, but it does give an idea of where research is going. Mental health of fibro patients – they’re working on that. Mitigating symptoms… things like that. Except for the Pioglitazone stuff – that looks like a new potential medical management. Something to watch for in the future. Of course, I have to stand by not taking meds, at least for me for now. We’re all different, we all know that. Taking meds is tricky. So often my body gets used to them and their effectiveness runs out or my body just out-and-out rejects them. When the side effects are worse than the condition, then go slow.

But here you are – 2021 PubMed articles that reference a cure for fibromyalgia. Still none. But that’s okay. We got this.

Is There Such a Thing as Pre-Fibro?

Recently a friend contacted me about her daughter, who is nearing 18 years old and who has been having chronic pain for “a couple years now.” Since my chronic pain started at about 15 years old, hearing about her daughter took me back. Way back. Like 45 years back! I don’t remember a lot of things about my childhood. I know people who can remember elementary school friends. I remember the two boys I had crushes on in elementary school. And two teachers. And taking a chicken gizzard to school for show-and-tell. It was ill-advised and stuck in my core memories. But I do remember when the doctor visits started, and I remember the doctor visits before the chronic pain started. I remember asking a nurse why I had to worry if I bumped my breast and got a bump. I remember getting my finger poked for a blood sample when I was so sick it didn’t even hurt. I remember being surrounded by a “gang” of doctors all staring down at me and terrifying me. Other childhood memories… not so much. Except dodgeball. And beating a couple boys up.

When my friend asked for advice about which specialist to take her daughter to, I was torn. I’m not a doctor, nurse, or any sort of healthcare professional. I wanted to just say, no I can’t help you. Chronic pain is so different for everybody, how could I possibly help? And what if chronic pain was actually something bad that no one had found yet? I didn’t want to be responsible for her not getting appropriate care. At the same time, however, as I thought back on the genesis of my chronic pain, I’ve always wondered, if I had been treated differently as a child with pain, would I have had a different experience? Would I be in a different place right now? Is there a window of opportunity to train a young, flexible brain away from chronic pain?

Before anyone yells at me – fibromyalgia is not “all in your head” except that it is. Our brains process pain differently, as has been shown by very specific brain studies (see the library which has been woefully neglected). If our brains process pain differently, can the brain be trained not to do that before pain becomes sort of set in its ways? I’m not saying I can’t learn things now – my brain is semi-nimble – but it’s not like it was when it was a sponge. It’s not sponge-like anymore.

Because I’ve wondered about that, I went ahead and gave my friend my thoughts (not advice):

  1. Start with a general physician. Run tests for all the “bad stuff” (lupus, rheumatoid arthritis, muscular sclerosis, diabetes, etc). If the physician wants to do a referral to a specialist, follow those leads.
  2. Stop. Don’t keep dragging your daughter from doctor to doctor after the tests have been run. If she has fibromyalgia, she will do better taking a nap and then going out in the evening with friends than spending hours in a doctor’s office.
  3. Clean up her diet. Try cutting processed foods and sugar. Reduce carbs because they become sugar in the system. Try a really restricted diet for three or so weeks and see if it changes the character of her pain or reduces/eliminates it. If so, keep on that diet, create some new food habits. She doesn’t need to be diagnosed for an intolerance to gluten or sugar or dairy if by cutting those things she feels better.
  4. Encourage exercise, even mild exercise. Keep moving.

If a child is taught that pain is bad and they must do all they can to eliminate that pain by spending years in a doctor’s office, does that destine the future adult to constantly put pain first? As a parent, I understand the need to fix things for your kids, but is this one thing that the attempts to “fix” are actually damaging? It’s a thought.

Dressing Fluffy

I’m a fan of the #TryGuys – they’re adorable. I suppose that’s not the reaction they’re looking for, but they are. This last week the Try Guys raided Zach Kornfelder’s closet and dressed like Zach: “Zach’s perfect style would be just like wearing a blanket.” Zach deals with chronic pain, so yes, Zach’s perfect style IS dressing like a blanket. It’s a fun episode (https://www.youtube.com/watch?v=Rj_4XAzS6uw) where Ned, Keith, and Eugene go through Zach’s clothes and discover… they’re different. These guys who look quite a bit bigger than Zach can put his clothes on over the top of their clothes. Hmmm, baggy clothes? And suddenly they realize how SOFT Zach’s clothes are. Baggy and soft. The wardrobe of people with chronic pain.

Zach’s lucky. He’s adorable, so he can dress any way he wants and people still smile at him. He can put on any crazy pattern or color or style and look fantastic. He’s very comfortable in his own skin. He’s the person I would aspire to. The funny thing is, they (including Zach) really don’t recognize what could be at the core of his fashion decisions. Ned gets a “new appreciation for comfort clothes,” but why are they comfort clothes? Pain. I walk around in oversized, super-soft clothes, and I’m pretty sure people just think, well, she’s trying to cover her fat. Nope. I’m making comfort, not adding to stress and pain.

#ComfortClothes

Little Voices

At least 4 times a week I find myself laying in bed in the morning, explaining to both myself and my dog why I’m going to get up and get to work. This is usually followed by a deep conversation with myself about why it’s important to get out of the shower before I use up all the hot water. There are later discussions regarding remembering to eat, remembering to go to the bathroom, remembering to take meds, remembering to go to bed, remembering to close my eyes. It’s a full gamut of discussions. As I worked through therapy, I learned it’s important to talk to myself like I would a good friend. I no longer yell at myself to get out of bed, I have a discussion. I encourage myself. I often lose negotiations with myself regarding chocolate or alcohol, but that’s another story, and either way I’m very civil with myself.

But there’s another voice deep in my inner self that jumps out at inconvenient times to be negative, hateful, sarcastic, abusive. When I make a mistake, it’s the voice that tells me I’m stupid, fat, ugly. In short, it’s an angry little voice with a bad attitude. It’s connected to the part of my psyche that’s been disappointed. And it’s there to reassure me my disappointments are all my fault, thank you very much. Instead of pushing that voice away or yelling back at it, I’ve learned to engage it, sort of start a think tank with the angry little voice.

There’s another voice – and now you’re wondering about dissociative personality disorder, which would be far more interesting, but no, I’m just your ordinary chatterbox. The third voice is the one that reminds me that my body hurts. It’s a very quiet voice, but persistent. I’ve always said, the best thing you can do about chronic pain is to simply not think about it. When you think about it, it magnifies. Your attention and energy should be focused on something productive, something you want to do, not on how you feel trying to do it. This voice tells you how you feel, all the time. It will often join the discussions I have with the other voices. It sits in the corner to nod in a superior way and encourage negativity. It’s insidious. It’s the voice that is arguably the most important to silence. Even as I sit here typing, it’s in the back of my head (hiding behind the tinnitus), taunting me. When it speaks, I stop working. It’s a Svengali – it hypnotizes me into inaction. I once worked in a nursing home where we had people bedbound and unresponsive. I’ve often wondered if they had that insidious voice too, telling them they hurt and to just lie still. To that voice, I say “Shhh.” I say it quietly yet firmly. “Shhhhh.” And then I stand up anyway.

Making Healthcare Illegal

One of the biggest problems with having fibro is not knowing when to go to the doctor. This is followed by seeing “miracle cures,” life-changing healthcare for people who had no hope, and knowing that will never be me. I work at a healthcare facility and hear about those stories all the time. However, my personal biggest frustration is when I hear about withholding healthcare for people who need it because of politics. As someone who wishes for an available medical solution to my problems, the idea of making any safe, tested healthcare illegal is abhorrent and an indication of the mental and political health of our society as a whole.

Abortion is not a political decision. It’s a moral decision, and moral decisions can’t be mandated by any political system, much less one that’s as divided, unreasonable, and uncommunicative as ours is. As soon as lawmakers are unable to understand and empathize with both sides of any argument, they should step down. As soon as they make decisions based on their own morals (or sometimes lack thereof) they should step down. The post-Roe abortion environment is threatening not just physical healthcare but also mental health care for women everywhere – for example a proposed bill in Oklahoma banning abortion after 30 days. On top of that to hear a statement by a Texas politician declaring medical treatments for transgender children “child abuse” and thus threatening access to medical care by transgender children is not just disgraceful, it’s criminal. Since a lot of this crap politics is coming from the same people who fight against wearing masks and being responsible during a pandemic — it’s like life-threatening irony.

The fibromyalgia community, who have dealt with a lack of healthcare availability and have fought against being labeled as whiners and malingerers, should stand up for all the people who are being refused necessary healthcare because of small-minded, hypocritical, greedy politicians.

I don’t know how hashtags work (because I’m old) but #StopMakingHealthCareIllegal and #FibroFighters.

There. Rant done for the day. I don’t care who I pissed off.

Separate Courses

The past couple months has been spent in doctor’s offices and hospitals with my dad. Just a brief rundown: He’s 85 years old (looks maybe 75), former long distance runner, very active when he was younger. He has had problems with chronic subjective dizziness (CSD) and chronic pain for maybe 45 years. He taught himself to walk and run after the CSD stepped in because there was little the medical field was doing to help conditions like that at the time. He’s a very determined person. But pain really got the better of him several years ago. And age is messing with him too, so there’s a lot going on right now. That’s the very very condensed version.

I’m really very lucky because my chronic pain started early enough that I honestly do not remember what to be pain-free feels like. My dad, on the other hand had years of pushing his body to do what he wanted without too many consequences (I won’t mention the permanent damage to feet that running will do – but it’s a choice). He can remember the freedom of movement without pain. That makes it worse, I think.

Dad and I have had very different courses. My doctor almost immediately suggested fibromyalgia after all the stuff I didn’t want were ruled out (Lupus, MS, etc). She handed me a book, told me to read it and let her know what I thought. Fibro has not been a consideration for my dad even though he definitely fits the profile of a fibro sufferer. He is, after all, male. His doctor was male. Fibro isn’t a male thing. Right? (Wrong, but I’ll leave it for now.) The difference between us became very basic: I had to learn to ignore or just live with pain and how to discern if I was actually injured/ill; my dad stayed in the doctor’s office talking about his pain, getting tests, trying meds. He spent a week in a Pain Clinic where he learned he had to do work through his pain (what I was already doing – I got turned away from the Pain Clinic). However, by then the pain was so ingrained in his mind as a bad or dangerous thing, while he could move more freely, pain was and is still his focus.

I will never say what the “right” way to live with pain is. Everyone has to find their path. Between my dad and me there are generational, social, and gender differences which account for our two different courses. I’m just not too sure those are legitimate reasons for having such a varied course. Sitting with my dad listening to him detail pains to the doctor that have nothing to do with the current serious health concerns he has is frustrating. He is unable to describe pain or explain how bad a pain is. He was never given those tools because all he had to do was say “my foot hurts” and he would get a test. When I say my foot hurts, I’m usually told it looks okay, let’s just watch it. I’ve learned how to express disagreement to doctors when I need to. My dad never had to learn that. It was never an issue.

What I’m trying to say, I think, is my dad lost out on some very valuable chronic pain tools as he has gone through his course. At the same time, it has become very difficult for my mother who has to sort through all the pain experiences my dad has to help decide if he needs to see a doctor or not. Those decisions are becoming more difficult for them to make. So I’m lucky I’ve developed those tools even though they need to be sharpened every little while. And I can help my folks navigate while I learn about the double threat of fibro and age. It’s a learning curve – my dad hangs on tight when I drive around curves. He’ll just have to keep hanging on.

When You Don’t Have a Choice

The key to managing chronic pain and the inevitable fatigue that goes with it is making choices. I can only speak from the fibromyalgia perspective. People with other chronic pain conditions have to find their own keys to live life to the fullest without hurting themselves. Fibromyalgia, pain does not equal injury. Therefore, the key to living life to the fullest is to make reasonable choices to do the things you really want to do knowing there will be consequences – but not necessarily injury. Key word – reasonable. If I go jogging, I will injure my knees, feet, and ankles. If I go bungee jumping, I’m pretty sure my spine would rip right out of my back and then I’d have to have someone there to do a quick cleanup. Not that I’m catastrophizing or anything. But I can go to the Renaissance Festival in the fall, cheer on the jousters, people watch to my heart’s content, eat very well (i.e. badly), and stay on my feet from dawn to sunset. I will wake up the next morning (maybe, probably afternoon) and wonder when I wandered out on the highway and got hit by 3 pickups, a sedan, and a semi, and why am I not in traction. It may take me a few days to get fully back on my feet. My choice. My consequences. Mine. No one else’s. Mine.

There are times, however, I don’t have that control. For example, the last few weeks. While we all thought 2020 was a PTSD year, 2021 hasn’t been particularly kind either on a personal level. I’ve ended the year with my octogenarian parents deciding to suddenly become…. less young. I’ve had to request my mother to no longer drive on the highway; my father just had open heart surgery and has not been able to drive on the highway for some time. I am the chauffeur for them both. I sit in on appointments with them to be sure everything is understood and questions are answered. I help with decision making and am an occasional referee. At the same time, I have to work. Retirement to care for my parents (who are actually very young for their age, don’t get me wrong) is not an option. At work I have 25 residents and a fellow to care for, and several faculty including a program director and associate program director. And I care about every single one of them, what happens to them, how they are managing the stresses of their roles, and how I can help them with all of it. Home and work have converged to consume… me. Not just my time, but my energy, physical and emotional.

The choice is not really in my hands, because walking away from any of the people in my life that I care for is never an option. Everyone always says, self-care. You can’t care for other people without properly taking care of yourself. It’s true. But it’s a struggle.

I think of my energy and ability as finite. Like a beehive. It grows and shrinks, takes on more bees when it can, and hopefully produces something good at the end. But if wasps move in or a bear comes in and starts to steal out of the hive, there’s destruction I can’t control. The choice is not mine. However, I can choose to accept the destruction and simply work on rebuilding or rail against that which is not in my control.

So I can remember to take my antidepressants. I can be mindful of the moments that are my own. I can go to bed on time and get a full night’s sleep. I can eat properly. I can forgive myself when I don’t do any of these things – when my brain is rushing too hard to sleep, when I have to have dark chocolate covered salted caramels because it’s the holiday, when I zone out with a video game instead of rest. I can also get up and work when I feel like I have the flu and stay up throughout the whole day. I can do that, and when I have time, I can tell myself I’m doing a good job, and I’m doing the right thing. I’m doing what needs to be done, and I can do it. Gotta run :o) Thanks for listening.

Things to Be Sure Your Doctor Actually Understands: Part 3

I have dry eyes. Really dry eyes. They usually feel like I’ve been rolling around on a beach. I’m only exaggerating a little bit. The phrase bursting into tears doesn’t usually apply to me, not that I wouldn’t like to now and then. Usually if I tear up, I’m so surprised I don’t remember why I teared up. It’s not emotional or the lack of emotion; I’m apparently just drying up from the inside out. So that led me to the eye doctor with swollen, red, dry eyes and a very cranky attitude. The ophthalmologist leaned back in his chair and explained he doesn’t understand why, but as he understands it, for fibromyalgia patients doctors should just do whatever they can to make them feel better even if they can’t figure out what the underlying problem is. He proceeded to cauterize my tear ducts, so they can’t squeeze tears out of my eyes and into my nose. Yeah, it’s not pleasant. Okay, it hurts a lot. During the procedure, the ophthalmologist commented on my ability to hold still and not complain. “Fibromyalgia patients,” he said, “Are saints.” Do you know how hard it is not to roll your eyes while you have a cauterizer a nanometer away from your eyeball? While I appreciated that he didn’t question the discomfort I was having and that he appreciated my ability to make his job easier, he needed to understand something important: Fibro patients can differentiate between types of pain and react accordingly, anticipating the actual pain we will feel, when we will feel it, and how bad it will feel.

There are a few different, very distinct types of pain – using my own, non-medical terminology:

  1. Chronic pain/White Noise: While fibro is considered a chronic pain syndrome, there is a “chronic pain” component in fibro that is different than other types of pain. I call it white noise. It’s like static in my head when my tinnitus is acting up. It’s there all the time. It’s relentless. It’s also a very low-level pain, sometimes barely noticeable. Static, not fireworks. This is the generalized pain that seriously exhausts the fibro patient. It eats away at energy levels by its persistence, not its pain level. When I give a doctor a relentlessness scale for my pain, this is the pain I am rating. For me, this pain rests in my muscles.
  2. Acute pain/Fireworks: This is the opposite of the above. It’s the fireworks. It can come in clusters or focus on one spot. The key is, it’s not relentless. It comes and goes unexpectedly and shoots around like a shell out of a mortar, and it usually has a higher pain level than the white noise pain – close to the kidney stone/childbirth pain I will rate a 10. For me, this pain hits my joints most often and is usually associated with motion.
  3. Temporary pain: This is cauterizing my tear ducts or getting a cortisone shot into my hip bursae. It may hurt like heck during the procedure, and it will linger while things heal, but there is a deadline for the pain. It’s going to go away. I can do that.

Most importantly, all three of these pains are connected and relative. Pain is worse when it’s unexpected. It’s worse when it will not go away. Expected pain, not so bad. Pain with a deadline, not a problem. Fibro patients, not saints. We’re pain realists.

Things to Be Sure Your Doctor Actually Understands: Part 2

Next month I have my yearly checkup with the doctor. It’s a new doctor – I work with residents, so every three years I get to break in a new doctor. Some people don’t like that and prefer to get a consistent consultant. Between you and me, I like breaking them in before they settle into their opinions. When they graduate, they have a good understanding of fibromyalgia patients, whether they want it or not. Since this is my first visit with this new doctor, we’ll have a little talk. I have a few concerns that I need to know are or are not fibromyalgia- or weight-related, because let’s face it, I’m getting old. I’ll be 60 in a few months, and I have to learn what to expect as I age. And any doctor who sees fibromyalgia patients needs to understand a few things about aging from the perspective of the fibromyalgia patient:

  1. It will be very difficult for fibro patients to differentiate between aging pains, fibromyalgia pains, and pain signifying illness. Guidance and patience will be an absolute must for the aging fibro patient. We will have to relearn how to perceive the pain we feel. Not only will we feel pain that has no real origin or cure, but we will start feeling pain that does have an origin and may have a possibility for relief. We won’t be used to that. Fibro patients may not know to ask, or they may be very wary of medications because of a history of side effects and allergic reactions. It will be very easy to overlook significant symptoms of critical illnesses. It will be very easy to lose patience when a fibro patient contacts their doctor too much.
  2. Education about aging symptoms will be much more valuable than a “well, you’re not a spring chicken anymore” attitude. We’ve already gotten that from friends and relatives for years. I’ve been hearing that since I was about 35. I haven’t felt like a spring chicken… ever. I have no comprehension of life or movement without pain. Being told essentially to put up with aging pains as a part of life is, frankly, a little insulting. Doctors are usually pretty good about telling patients about, for example, cancer symptoms to look for, early warning signs. That is much more helpful.
  3. Fibro patients will feel aging pains differently. Our brains tell us we’re in pain when other people may not perceive pain at all or a much less intense pain. It’s not just the basic fibromyalgia pains that are intensified, it’s any pain. I’ve gone on the theory that I’ve had a rheumatic process that is so mild the doctors have not been able to discern it, but my pain sensors are so darn good, I have been able to feel it. Of course, if (when) I actually get a rheumatic diagnosis, it will be very difficult to prove that it’s an ongoing process, not a new condition.
  4. Fibro patients already struggle with mental health before the aging process. We struggle daily when we’re young. As I get older and realize how much I have not done, how much I lost to time spent waiting, resting, the struggle intensifies. That very normal end-of-life mental weight people feel is exacerbated by chronic pain. I suspect we feel it sooner. I have wondered for many years now, if I felt 80 when I was 30, what will I feel like when I’m 80, and do I want to know? Since mental health is integral to physical health, doctors need to be consistent in monitoring for depression and suicidal thoughts as the fibro patient ages.

Again, mutual respect and communication between patient and doctor are better than any prescription medication. I’m going to have a sit down with my new doctor and express my concerns about symptoms that seem suspiciously like aging rather than fibromyalgia and see what happens. As always, I am not expecting a miracle cure or even anything curable, but I’ll listen, just in case.