A friend dealing with health issues recently asked me if I remember not feeling like I do. The answer was swift: No. I remember sometimes feeling better or worse, but I always remember pain. I was able to function as a kid. I was active, in marching band, pretty much doing whatever I wanted. I just hurt and had to sleep. My friend feels it’s a misfortune that he can remember running, playing football, and feeling physically good. He has been struggling for a lot of years, but he has that memory, and I think it haunts him. I think my dad, turning 88 in a couple months has the same memory. He was an extreme distance runner for a time, running ultra marathons, regular marathons, and just running whenever he could for as long as he could. He was in his 40s when he started having physical issues. But he had all those years of having a body that did what he wanted it to do when he wanted it to do it without protesting every step of the way. Now that old age has curbed his ability to “power through” physically, his memory is enhanced with stereotypical rose-colored glasses, I’m sure, which makes it all the more difficult for him to accept his “new” old body. So I ask myself: Am I lucky, as my friend says?

It’s true you don’t really miss what you never knew. I truly don’t remember jumping and playing without my body asking me what the heck I’m doing to it. I understand now as an adult that my brain was sort of picking on me – alerting me when it didn’t have to. Since fibromyalgia wasn’t really a thing back then, doctors chose different diagnoses, juvenile rheumatoid arthritis, hypoglycemia… I got desensitized to aspirin immediately from being prescribed regular doses, and if I’m completely honest with myself, I was conditioned into listening to my pesky brain more than I should. I’m not saying I didn’t really hurt and that I could have talked myself out of hurting, but I think the cycle of pain was locked when I was a child. When as an adult I finally had a diagnosis that explained that, yes I hurt, but it’s just my brain lying to me, I could start a conversation with my brain and push myself harder, negotiating with myself to do what I wanted despite the inevitable consequences. Now, getting older and dealing with increasing non-brain pain (which is actually enhanced by my fibro brain), I do look back with fondness when I could say, yeah whatever, do it anyway.

I also remember wonderful dreams of running through fields, endless green fields, without tripping or panting heavy, or twisting leg joints, no pain whatsoever. It was my favorite recurring (rarely, but still) dream. I don’t have those dreams anymore. Now I have dreams that involve trying to cross a street or climb a set of stairs but I can’t because my legs won’t hold me because of the pain, and I wake up to pain in my legs and hips. I miss the running dreams.

But is it better to have just gone through life with pain? Would it have been better if my running dream was reality and I could look back with fondness on my prowess? From my perspective, I vote yes for my friend and my dad. The experience, even though past, is better than not having that experience. My friend and my dad hold those experiences close – they are essential to their identity. When I examine my life, I have more than pain, but pain is a strong component of who I am. I feel proud of what I have accomplished despite pain. Would I still be proud of myself without the pain component? I hope so, but it is what it is.

I’ve said it before: dealing with fibromyalgia is just a matter of decision making (not “just” but you know what I mean). You need to be able to say no sometimes, and you need to be able to say yes even when sometimes you know you’re going to walk (or crawl) away from an event feeling like a concrete mixer poured you into a trash compactor, and then the landfill bulldozers ran over you several times while spreading you evenly to mix in with the rest of the detritus.

Yesterday, I drove to Milwaukee, about 3-1/2 hours away, met up with a friend, then drove to Chicago, another 2-1/2 or so hours away, went to a concert in a venue that is just a stage and a floor to stand on – great for young folks who like to dance and mix – not so great for older folks with bad knees and feet and a mild anxiety disorder about crowds. But I said yes. And I’m glad I did. it was great fun. It was loud. It was a spectacle. I couldn’t bend my knees by the time it ended. My back was fixed tight in an uncomfortable sway after leaning against a bar. I could barely walk. Normally, I would have wanted to stay to see if the band members came out to meet people, but my friend was in as bad of condition as I was, and we slowly made our way back to the car. The car with seats. Padded seats. And quietness. It was great. I was so hyper-stimulated I was the worst passenger-seat driver for awhile, gasping when the car ahead of us braked, even reaching out to brace myself for no reason whatsoever, but that subsided, and I didn’t get kicked out of the car.

It’s always the next day that you know how much you have to pay for a crazy night of fun. Looking at pain scales

1. First, the regular doctor’s pain scale (head to toe, in general): 7
2. Second, the white noise pain (constant, usually low level, almost unconscious pain): 5 (usually about 2 or 3)
3. Third, the acute pain (sharp, shooting, random): 9
4. Fourth, non-fibromyalgia pain: 7 (knees and back with occasional 9s with movement)

Exhaustion levels are as expected. Do I regret it? Do I wish I’d said no and then stayed home watching movies instead? Nope, not a bit. Projected recovery: by the end of August (2 weeks). No worries. I can do it.

Twenty or so years ago I said something (rather stupidly) about what in the world will 80 years old feel like when I already feel 80 years old? It was a stupid thing to say because I definitely didn’t feel 80 years old twenty years ago. I was just tired, and my joints hurt all the time. Now that my parents have hit their mid-80s, I’m getting a better sense of what 80 might feel like.

I’ve read a couple studies about how people with fibromyalgia age (I’ll try to get them in the bibliography), and the results surprised me. Multiple studies indicated that fibromyalgia symptoms LESSEN with age. I would not have guessed that at all. My own symptoms have increased every year for maybe the last 10 years. This year is no exception. But there is a difference. This year, NON-fibromyalgia issues have overtaken fibromyalgia itself. Since April Fool’s Day, I’ve had ischemic colitis (explained as life-threatening and I’m lucky I didn’t lose part of my colon), endometrial hyperplasia (chronic bleeding for a couple months), good old-fashioned bronchitis w/sinus infection, discovery of (more) colon polyps, and an abnormal mammogram resulting in a biopsy. Four of five were indications of cancer – I have no cancer. I’ve been biopsied right and left, and no cancer. What I did have was a lot of pain, even more excessive fatigue, and for the first time EVER a doctor saying, “Of course you’re tired, you’ve gone through a lot. Just rest and recover.”

Now that I’ve rested and recovered from all that other, “real” stuff, fibro is back to filling in the pain/fatigue gap left with the departure of “normal” ailments. So maybe getting old with fibromyalgia doesn’t necessarily mean relief from fibromyalgia but that other things (worse things) take over the fibro role. Since fibro is really “nothing” (pain with no purpose), it can blend easily in with pain with a purpose. It also adds to the burden of the pain since our brains perceive pain (with or without purpose) differently (more intensely) than “normal” people.

I have to use my parents to decide what 80 really feels like. My 85-year-old mom is chronically healthy, a bit like Wolverine in healing abilities, but lately she’s complaining… Lifting her arm straight up over her head, she complains that her shoulder aches when she does that. Neuropathy in her feet, burning and aching. She complains that she goes to sleep tired and wakes up unrefreshed. A knee that has slowed her down a lot from walking the two miles a day she’s used to walking. Pain in her hands… I listen sympathetically, yet realize, “Wait, those are exactly the things I’ve complained about since I was about 15.” So maybe I HAVE felt 80 years old for the last 47 years?

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.