During a visit with a cardiologist to review new meds that don’t seem to be working particularly well, I was quite surprised to hear the words, “Fibromyalgia is a thing, you know.” I must have looked at him like he was an alien, because he proceeded to clarify, “It’s real.”

I realize now that I take the approach with doctors that they are automatically going to doubt me. I explain to them that I understand my nociceptors are wacko, that I don’t perceive pain properly, that it’s like brain damage. In short, I think I apologize to the doctor for not being “normal.” I’m actually trying to reassure them that I won’t wig out when they can’t help me. This was maybe the first doctor that tried to explain to me that it is real – that I’m not crazy, that there is something physiologically wrong with me. Other doctors have nodded understandingly and agreed, yes fibro is a thing and it’s rough. This doctor went a step further and tried to correct my attitude toward my condition.

He was adamant that my primary care doctor has to get me some pain relief. Unfortunately, the ways that he listed to give me relief were medicinal. Raise the dosage of my fluoxetine, try different meds, some of which I have tried in the past. Tylenol… All the usual stuff I have resisted for many years. I didn’t care that his solutions weren’t necessarily useful. I cared that he looked me straight in my eye and said, “You need to get relief from your pain” very seriously and earnestly.

It made me think I need to sit down with my primary care doctor and say, “I need to get relief from my pain.” I haven’t gone to the doctor for fibromyalgia pain since I was diagnosed. I’ve gone in for pain that turned out to be “nothing” (just fibro), but never to say, excuse me, I need help with this 24/7 pain. It’s always been: I’m sorry, I know it’s nothing, but I have this pain that isn’t “normal” for fibromyalgia; would you please check to be sure it’s not something “serious”?

I haven’t, by necessity, regarded fibro pain as serious. Of course it is serious, even when mild. But I will stand up and say every time, if you react to the pain all the time, it will only make it worse. You have to learn to live your life with the pain, in spite of the pain, don’t let the pain win, etc. I firmly believe that, and I’ve done a lot with that attitude. But the fact is, I’m losing the battle, and I need to change my thinking. What is another way to manage? I’m a bit lost. I just don’t know where to go from here.

BUT the highlight is young doctors are coming out of med school and saying, “Fibromyalgia is a thing, you know.”

I just figured out it’s been months again. Time is such a bizarre thing. I don’t know what the benefit of giving an update would be to anyone but myself, but I’ll give it a try. At worst, readers can just click away. At best, maybe someone would have words of wisdom.

So I’m turning 61 in a month. I’ve been doing a lot of thinking about the course my life has been on. On the whole, it’s a good life. In comparison to the mess out in the world, it’s been a great life. My problems have been mostly of my own concoction. Physically, I’m on a downward trajectory. But I don’t mind so much. It’s not like I’m giving up or anything like that. I’m just accepting the way things are. Acceptance is a good thing, I think.

Pain scales: I probably average a 7 in “white noise” pain, the 24/7 background head-to-toe pain. For “acute” pain, the sharp shooting pains in various places, the average is a solid 9. (Reminder, childbirth and kidney stones are 10s.)

Relentlessness scale: 10. There are seldom times without pain. I dream in pain.

Heart failure: I don’t qualify for insurance to pay for cardiac rehab. So I’m on my own. I suck at taking care of myself. If no one’s watching, if I don’t have to answer to anyone, it’s not going to happen. Is it because I don’t care enough about myself? Because I’m lazy? I don’t know. Furthermore, I had to stop taking metoprolol because of intense, exhausting lucid dreams – I was falling apart psychologically on it. Carvedilol does not seem to be effective. Also, I think my body has gotten used to the diuretic and has become less effective because I’m retaining fluids again. I don’t completely understand how that affects my heart, but my heart’s the reason I starting taking them.

Arthritis: Left knee is worse, back is interminable. The reason I started this website was to understand why I felt better when I battered myself with intense cardio exercises. Arthritis has stopped my ability to do those exercises. I got an exercise DVD of chair exercises – seniors. I hurt myself sitting on a chair stretching. I’m actually afraid to try it again.

In addition, my extremities are tingling. My legs have numb spots (more like reduced sensory function), and when the numb spots come to life, there is strong burning prickling, like when your foot wakes up, only it’s my entire thigh. And I can’t brush my teeth anymore without gagging. Yeah, I’m going to the doctor for that one. It’s a total outlier. The rest I’ve experienced before.

Combining the chronic pain with chronic shortness of breath and palpitations equals a real Catch 22. I have to move to feel better. I have to do cardiac rehab exercises to improve. But when I move, not only does it hurt, it makes me stop and gasp for breath. I’m embarrassed to walk with people because my pace is too slow and I can’t talk with them while we walk. My friends, however, are lovely about understanding. It just feels so impossible right now.

Mental health: Not super. I know I’m dealing with depression, but there’s an added “I just don’t care” attitude that’s a bit new. Acceptance is good, yes. “I don’t care” attitude isn’t good. I’ve said for years I dread living to 80. It’s true. I still do. It’s been 45+ years of slowly sliding down a hill into a pool of crocodiles, no matter how much I try to claw my way back up where I belong. I can’t really imagine doing this another 20 years.

Cognitive function: I’m forgetting things. No one seems concerned, but I’m concerned. I do something and then completely forget about it. I know a lot is because I juggle a lot at work. There’s a lot going on, I keep track of everything, and when something is done, I have to let go of it. I’m having trouble focusing and concentrating. Reading is more of a treat than a regular thing – part of that is eyesight and looking through floaters. I’m doing very little writing. As this blog attests. I know there are still things in my head I want to get out. Everything is jumbled and disordered. I put a notebook and pen on the arm of my couch so I can make notes to myself on the projects I want to do. I haven’t written a word down. My downward physical trajectory, sure, no problem, I’m good with it. Not reading or writing. No, I’m not good with that.

So that’s a sad laundry list, huh? The bottom line problem is a recent inability to overlook at least some of this. I can’t set it aside and just do my thing anymore. But I’m still making plans to do things, taking myself to the theater, spending time with my family and friends. Staying low key, mindful… baby steps are more important than ever.

So I’ve been looking at a connection between cardiac issues and fibromyalgia. One of the articles I found (“Excessive exercise induces cardiac arrhythmia in a young fibromyalgia mouse model,” Nakata et al. PLoS ONE 15(9). September 30, 2020), discusses this, but what caught my eye was a phrase in the Background section of their abstract: “…the cardiac effects of a prolonged shallow water gait in a fibromyalgia-induced young mouse model.”

A “fibromyalgia-induced” mouse?

If they know how to induce fibromyalgia, isn’t that a key to figuring out how to get rid of fibromyalgia? Like, can’t they deconstruct, or reverse engineer fibromyalgia?

Apparently, if you do an intraperitoneal injection of reserpine several times, voila! Fibromyalgia. And don’t Google “intraperitoneal injection” because you get lots of pics of mice getting one. Makes me sad. But I do understand the need for animal testing – another topic altogether.

So I had to Google reserpine. It’s a high blood pressure medication and also used to treat mental disorders, severe agitation. It slows everything down. Slows the nervous system, relaxes blood vessels, slows the heart down.

And so frustration sets in. So many questions. If reserpine, which sounds like a perfectly good med, can induce fibro in mice, what does it do to people? Is there a correlation of any onset of chronic pain in patients taking it? Kind of like how some statins cause pain (my dad’s a case in point on that one – really bad leg aches, stopped taking the statins, got a triple bypass). What is in the reserpine that induces fibro in mice? Is it a chemical reaction in the brain that makes it happen?

I did a quick search of fibromyalgia and reserpine, and there are over 60 publications, most discussing a study about inducing fibro in mice. I think the earliest mention of the two together is 2009. So it’s pretty solid that physician-scientists can induce fibro in mice. This study isn’t a one-off. I’m going to have to see if I can figure out who started the whole fibro-induction thing. Seems like that would be a good place to start.

The last month has been interesting since I failed my stress-echo test. I got the results, which included the rather embarrassing fact that I literally lasted 2 minutes on the treadmill. The results were: We need more information. Next step, cardiac catheterization and angiogram. I’m not going to go into details about that experience. Suffice to say my arm is still recovering, but I’m grateful they used my arm and not my groin. You can Google for details, I’m sure. Bottom line, however, is I have a diagnosis. And THAT is rather remarkable. More remarkable is a diagnosis WITH a management plan. When I heard those two words together, “diagnosis” and “management,” I was rather astounded.

People with fibromyalgia have a diagnosis. We have all sorts of advice from people who also have fibromyalgia, and even more advice from people who have no idea what chronic pain does to your body, mind, and spirit. Doctors will pay lip service to management options, but we all know what works for fibro patient A won’t work for fibro patient T, and if fibro patient W tries it, it may work for a couple weeks and then be as effective as a baby aspirin.

However, the diagnosis I can now embrace and call my own has a management option that has been used for patients A-Z, and unless my intolerance for medication kicks in, I have a chance at feeling better. It won’t cure fibromyalgia, but I’ll be able to breathe again, and with breaths come movement, and with movement comes less pain. So far (not quite 2 weeks), my body is tolerating the meds. I can move more easily without needing to catch my breath so quickly. I have… hope?

Now this is rather ironic because the condition that is actually giving me hope is heart failure (with preserved ejection fraction, so HF-PEF, or as I call it, Huff-puff). I’ve said for years I wished the doctors would just find a growth or tumor or something they could just take out and be done with. Everybody always has said no, no, what a terrible thing to even think. What’s worse sitting on a tack without the ability to stand or sitting on a tack knowing you can get up? I’m okay sitting on a tack as long as I know I can get up. I’ve been slowly losing the ability to get up. And there’s been a tack stuck on my butt for a long time now.

So, bottom line, today I’d like to say I’m proud of me. I went to the doctor (late, but I went). I followed through with a procedure I figured would be a waste of time and resources because nothing ever comes from looking for something. The cardiologist reassured me, it’s not a waste of time. He doesn’t know it, but I had to take a moment to reassure myself that it’s okay to do this for myself, that I’m worth it. The same day I had the angiogram/catheterization, my first grandchild was born. He, without doubt, is worth every moment and every bruise and every pill.

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.

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.

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.

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