“Fibromyalgia is a thing, you know.”

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.