Confluence

The words “We’re living in challenging times” has become a gross understatement. I’m going to set aside the “challenging” for a minute – guns & mass shootings, abortion, inequity, injustice, etc etc etc etc – and do the truly selfish. I’m going to focus on myself.

One of the challenges people with fibromyalgia have is to know when to go to the doctor. I’ve talked about it before – my rule is, if I have a new symptom and it doesn’t change or get better within a “reasonable” amount of time, I have it checked out to be sure it’s not something like the pulmonary embolism I ignored for a very long time until I was in heart failure. It’s a simple rule I explain to the doctor right off the bat, so they understand I don’t intend to sit in their chair until they make the symptom go away. I acknowledge there probably is nothing to be done, so they give the concerning symptom their full attention. So far it has worked beautifully.

However, in our challenging times, people with fibromyalgia are facing a confluence of fibromyalgia symptoms and the lingering specter of COVID symptoms. I have not had COVID so I can’t attest to what it’s really like, and that’s part of the problem. I’m fully vaccinated and doubly boosted, so if I get COVID, it will probably be mild, often described as cold-like symptoms. So when I got a mild cough and started feeling a bit more fatigued and achy than usual in February, I got a COVID test, negative, took into account the likelihood of a false negative, isolated myself from my octogenarian parents just in case, and waited for the symptoms to go away. COVID tests since then have all been negative, and the symptoms have not gone away. So we’re into the 5-month range and the symptoms are just worsening.

I finally, very reluctantly dragged myself into the doctor’s office. I was reluctant because I’m overweight, so of course I have a problem with shortness of breath. I’m just deconditioned, right? Unfortunately, it’s become severe shortness of breath and my lifestyle is severely limited. Heart palpitations upon the slightest exertion. The fatigue is unbearable at times. Normal fibro pain has grown exponentially. But I’m sure I’m just overweight and out of shape, right?

I’ve had paroxysmal atrial fibrillation for years. Occasionally my heart just beats a bit wrong, but because the wonky beats are in the atria (upper chambers) and not the ventricles (lower chambers), not a big deal. So I went to the doctor and said, you know, I think my AF has gotten more than paroxysmal. After explaining the symptoms, the doctor ordered a stress/echo test, which I took yesterday. I don’t know how long I lasted on the treadmill, but it wasn’t more than 5 minutes. I don’t have all the results, but yes, my AF ticked in with exertion. I have an appointment in Cardiology in July.

Fibro + a COVID world = the possibility of missing something important (or hypervigilance). I work with ENT surgeons who have been horrified the last couple years because people are waiting too long to get help with symptoms that are ultimately a head and neck cancer. I should know better. I know myself. I self-diagnosed. And I ignored it for five months.

“Disabled”

I’ve said it before, I love the Try Guys. They’re just so cute (I say with my grandmotherly voice). Zach Kornfeld is my favorite. I just saw this week’s release, “Why Don’t We Care About Disabled People?” Zach has ankylosing spondylitis. I don’t understand it completely, but know it’s an inflammatory disease, chronic pain condition. That’s not why he’s my favorite. I love his upbeat and empathetic world. Anyway, this episode talks with several of Zach’s friends who have disabilities and how COVID has impacted their health and well-being, down to not always having someone to help them get out of bed or take showers.

It’s a slap in the face to realize people with disabilities (and the elderly) were essentially hearing from the CDC and the general public that their lives are less important than abled people, and they would be the ones who would be “let go” if there weren’t enough respirators, etc. I realized I have stopped having a mask at the ready in case I came face-to-face with someone wearing a mask. If someone is wearing a mask now, they have a reason to wear a mask, and I have to respect and support that decision by masking myself. I’ll get back into that habit.

My second biggest takeaway is hearing Zach say he was disabled. It was hard for him to say. It reminded me that there are invisible disabilities. Zach doesn’t “look” disabled or “act” disabled in his videos. People with long COVID won’t “look” disabled either. And I started thinking…

When I was originally (mis)diagnosed with juvenile rheumatoid arthritis when I was 15 or 16, the school counselor called me into his office and told me I should apply for all this aid, basically register myself as disabled. I didn’t feel disabled even though I was in pain all the time. Furthermore, I had a friend who had “real” arthritis and you could see it in the way she moved and the way her joints and back were malformed. I came close to yelling at the counselor for being willing to squander resources when there were “real” disabled people out there who need that assistance far more than I did.

Almost 50 years later, I’ve never identified myself as disabled. I have an aversion to categorizing people in any way, by ability or disability, by race, sex, age, etc etc etc. There are a lot of etcs. The problem is categories create boundaries, “them”s and “us”s. There are so many truly artificial, literally skin-deep, ways to categorize people… it’s just meaningless. Unfortunately, reality is that people are categorized every day because not everyone can not see those boundaries. Until no one sees those boundaries and reacts to those boundaries, people to have to identify themselves and stand up for themselves and demand to be seen and heard. Which then emphasizes those categories and boundaries instead of allowing people to set them aside and simply treat people as they themselves want to be treated. Insert swirling vortex of catch-22 here.

I’m fortunate to be in a job and have a social support system where I don’t feel the need to identify as a disabled person. I don’t have to try to apply for disability funds or financial assistance. I’ve learned to navigate the medical system to keep myself safe and the care I need. I’m very lucky.

The fact is, however, I am disabled and have been most of my life. Admitting it, saying it out loud, does not change how I live my life or how I view myself. What does it matter then? I don’t need to identify to have a safe space with other disabled people. But maybe it’s important to add my voice for people who aren’t as fortunate as I am.

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.