The day before Thanksgiving, I took a step back from a store counter (yes, liquor store) and an amazing and horrible pain smacked my knee. There was no noise, no popping and crackling. Just pain. I grabbed the counter because I’m not crazy about falling in public. It’s actually a bit of a phobia, yet perfectly rational. I got myself straightened up, into my car, and home, figuring I’d just get off my leg. Pretty soon I was no longer able to sit because of the pain. I elevated it, iced it. It only got worse.

Cutting to the chase. There’s nothing more wrong with my knee than there was before I took a step backward. I didn’t tear anything or break anything. It’s my good knee, which means there’s arthritis in it and my kneecap has slid to the side and is sitting on the leg bones, but that’s what it was before the incident. My bad knee doesn’t like to straighten. My good knee now after the incident would not bend. I couldn’t put weight on it unless it was perfectly straight. The pain trying to bend it was nauseatingly bad.

Cut to going to the doctor’s office. Stood up to go into the exam room, two steps and I almost fell on this poor old guy’s lap. Loud crackling, popping, everybody stopped and stared at me. Finally from across the lobby, the nurse waiting to room me asked if I might need a wheelchair. I couldn’t move. So I said yeah, I thought maybe. The pain I felt right then is my new 10 on the pain scale. It exceeded childbirth and kidney stones. So that was productive, anyway.

Trying to get to the point. I spent several days gently working my leg to be able to bend it before I could get a steroid injection which made things get better faster. Being unable to move properly has put added pressure on my “bad” knee and my hips. There’s a lot of pain in both legs, hips, feet, shins. For no new damage.

I’m used to that. It’s distressing and alarming, but bottom line, nothing to fix. I just have to start over with arthritis management. What I was not used to was the reaction I got from the doctor who tried to examine me after the problem in the waiting room. He couldn’t do an exam because I could not bend my leg, no matter how hard I tried. His initial reaction was, who is at home to help me out? Yep, Nikke, Neutron, and Lady, my furry housemates. Waiting to help me out. Then he started ER talk and hospitalization because I couldn’t take care of myself. Nope nope nope. I got wheeled downstairs for an x-ray and then quietly drove myself home. That night I got a call from my primary care doctor. Doctors can really gossip. Again, talk of the ER and hospitalization because how could I possibly take care of myself. Alarmists.

But they were right. I had a few days when I didn’t eat much because I couldn’t navigate the kitchen. There was no way I could drive anymore until I got the knee bending properly. There were a few days when I realized if my knee was genuinely injured, I would need help. I don’t like that helpless feeling. And I find asking for help exceedingly difficult.

The kicker is that even though there is no injury to my knee other than the usual, my pain barriers have fallen. How long will I be able to take care of myself? What happens if I can’t do the physical therapy that keeps me moving right now? How long do I want to do this? My physical therapist says the gentle exercises I’m doing will help retrain my fibro-brain to understand pain better. I trust her. I’ll keep trying.

I’ve been listening to a podcast called The Retrievals by Serial Productions. I recommend finding it, but not because it has a thing to do with fibromyalgia. In short, the story is about a nurse in a fertility clinic who was replacing fentanyl with saline solution. Women who were coming to the clinic for an egg retrieval procedure were given saline instead of a pain killer med. I can’t imagine what these women went through during the procedure, but the words “screaming in pain” came up more often than not.

While the story is about the patients who went through this, the addict who caused the pain, and the clinic that didn’t catch it for a couple years, there’s an underlying story that the podcast shines light on: How women in pain are treated by medical professionals.

There’s a terrifying hierarchy of how pain is addressed in patients. I don’t have the statistics and honestly I’m too tired to dig them out. I know that non-white people are not treated the same as white people. I have seen those statistics working in the healthcare industry. At the same time, women’s pain, whether white or not, is not treated the same as a white male’s pain. The patients in the podcast were offered hand-holding and treated as if they were hysterical. When it came to light what had happened, the bottom line in the letter of apology from the clinic was: no harm done. There was no acknowledgement of the women who gave up on having a child because of the pain, no acknowledgement of the mental health consequences of being subjected to that kind of pain.

On a personal level, I know a woman who lost her leg after a knee replacement surgery when her pain was ignored too long. She was treated as drug-seeking or simply attention-seeking until it was too late. I recently had a colonoscopy with biopsies where I was not completely put to sleep and had serious pain during the procedure. When I complained about the pain, I was told, “We’re almost done” and all but patted on the head.

I have seen how my father, a dignified professional white man, has gone through the medical system for his chronic pain. While I am 100% convinced he has dealt with fibromyalgia (along with other problems) he has never been “pigeonholed” into a diagnosis that has no cure. He has been offered and encouraged to take various pain treatment throughout the years. There is a strong focus on his comfort.

I know I have a different approach to doctors than my dad, but only because I have been pigeonholed into that hopeless diagnosis. It doesn’t surprise me when I’m sent home with a “let’s just see how it goes” instead of pain medication (which I don’t want anyway). I have had to create a system to protect myself and learn to advocate for attention when something is different from the fibromyalgia pain, so I don’t lose a leg because no one listens to me.

Bottom line: women are treated differently for pain management. Fibromyalgia diagnosis and management is an indication of that.

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.