"Are you in any pain today?"

It's such an innocuous question, isn't it? "Are you in any pain today [or "right now"]?" You hear it every time you go to the doctor, or at least I do. I can't remember not being in pain. It's been years if there ever was a time. Right now, my hands hurt, my neck and back hurt, and I have a vague, all-over ache. On top of that, I have a spring cold and/or allergies that have caused a sore throat. A couple hours ago, when the intake nurse at the clinic here asked me if I had any pain right then, all I could say was "no more than usual." Actually, it hurts like hell to walk on my right foot, but as I wasn't walking at the time, it was fine (and it was reasonably OK walking with the surgical padding, anyway). (As a side note, it wasn't a wart at all, thank the gods; just a very nasty splinter that my immune system had pretty much managed to destroy, but there was a pocket left, around which was a great deal of inflammation that made it hurt to walk. I am more than pleased--no liquid nitrogen + no strange skin viruses = happy Jack. To be honest, I can watch surgery more easily than I can deal with the thought of certain skin conditions; warts and ants squick me out seriously).

Anyway, what does a chronic pain patient say to "are you in pain today?" For a checkup or a visit related to the chronic condition, the truth is relevant, but for a specific, acute problem, don't the other pains cloud the issue?

In what other ways do Fibromyalgia and other chronic conditions get in the way of treatment? We don't always respond the same way to medications or treatments; physical therapy and chiropractic care can either do wonders or backfire severely. Doctors may shy away from us entirely, or overprescribe varying protocols and cause medication interactions or overdoses. And gods forbid we go into an office having done our homework or research; in my experience, most doctors hate prepared patients (the good ones don't).

Post a comment below on whether you've ever had pain cloud the issue when you needed a specific problem addressed by your medical provider.

Sacred

Edit: It's not a wart--just a nasty splinter and an overreacting immune system.

So, I have a plantar wart. I had an HPV infection of this type over 20 years ago--my sister and I had warts on our toes, having been infected at the swimming pool by my grandmother's house. Anyway, this time the pool may have been involved again; at any rate, that's where the symptoms started. I thought a rock or splinter may have become embedded in my foot, but when after 3 days it was clear that it wasn't behaving as a splinter (and it hurt like mad to walk, being on the exact spot in the middle of my heel that bears most of my weight when standing or walking), I went to have it looked at. Naturally, the clinic is short providers, so I had to go to urgent care in town; by the time they diagnosed it but couldn't treat it, it was too late for me to get a referral from the clinic, so I have to wait until Monday to get treatment in the works.

The genius doctor assured me that this kind was not contagious or transmissible, but of course, a quick Google assures me that it can be, even if not extremely so. (actually, that link suggests to me that the pool is a likely culprit). Anyway, because it is in a spot that is causing my whole heel to become irritated, I was told that I was under no circumstances to do water aerobics until I get this treated, and I should stay off it as much as possible. Since I work on my feet, that wasn't an option; I asked what else I could do. I have to pad the area as well as possible--this means surgical pads and tape, then thick padded socks, then insoles in my shoes.

I'm generally known for my awesome funky socks. I'm used to new things going wrong with me, well, pretty much all the time. But man, padded, diabetics' socks? Don't mess with my socks. Some things are sacred.

To hide, or not to hide?

As a person with an invisible disability, it can be frustrating if not infuriating to try to explain what's wrong, to feel at your very worst, and to hear "but you look fine!" Almost as frustrating is the hopeful, well-meaning acquaintance who remarks, "you look good/better today." It's enough that sometimes, it doesn't seem worth it to try to explain.

How do we deal with that frustration? One way is to resolve to "look fine" all the time, and never even mention that we're ill. If we need a little more rest to get things done, or are a little slower sometimes, so be it. Of course, this can cause problems when we hit those periods where it's obvious to all and sundry that there's something wrong with our bodies.

Another way to deal with it is to give in and stop making any effort to hide how we're feeling. One down side to this is that we're seen as hypochondriacs and whiners. Another is that it's boring. Being ill becomes our one focus.

A decent middle ground is to not make it a topic, but to be honest with people as you start to know and trust them enough to converse with them personally. Generally, people are understanding and won't make a big deal of it if you don't. My "fallback" middle ground is to make a joke of FMS and arthritis--"this is all my Fibromyalgic ass can take right now."

What do you do, or say? Who around you knows you have Fibromyalgia?

Writing, art

I wrote a rap earlier, and I have no idea why. I can't rap to save my life. I sound like a white girl from the suburbs trying to rap (I'm actually not from the suburbs, but my family isn't nearly as, err, urban as the area of Toronto that was my first home).

I'm doing badly this week with pain all over. I managed to convince the doctor to give me Ultram, but somehow, he's convinced that working on one type of pain at a time is the answer, so I did not get the cortisone shot in my neck that I also badly needed on the grounds that the pain in my back is worse. What's that about?

Anyway, like I said, I'm doing badly. I'm a straight A student and pulled Cs or Ds on my quizzes this week. Nearing the end of the class, this is not what I needed. But just getting through work with a back brace and a wrist brace and a pronounced limp is all I can manage, and not even that without crying. I'm not up to my standard in any sense, and the best advice I can get is "keep moving." I'm at the point where my body won't do that, and then what? My wrists and fingers are swollen and my brain is near shutdown. I had to admit that to my manager this week and it's starting to become obvious.

I was going to share the whole rap, but it's explicit content and might offend some. So, an excerpt:

You tell me you know how I'm feelin'
but a friendly hand can send me reelin'
'cause the pain is real, not deep inside
even though the pain I know I'm s'posed to hide

What helps take your mind off the pain when you have a few minutes of down time? Writing? Singing? Music? Besides the angry FMS rap, which hit my brain out of the blue, I bought a Doodle Diary at work. I may doodle with more purpose than the diary assumes, but still, it's soothing (minus the detail that my hands hurt more when I hold a pen--I've had serious hand swelling lately). Meditation, especially water meditation, can also be helpful, though breaking through the pain cycle to reach the right state is difficult on really bad days.

May you have a pain-free hour today!

Namaste,
Jack

A bad spell, and

On a personal note, I'm going through a rough patch right now. My fingers object to me doing almost anything, my neck and back are screaming constantly, and I feel worse rather than better after working out. I'm creaking and in pain, and I'm trying desperately to hold it together with my spouse going TDY in a few weeks. The kid's therapy will be interrupted and I need to try to coordinate another therapist being able to see him across the country. I need more than ever to be two people, and I'm too tired and in too much pain to be even all of one.

OK, thanks.

Aside from that, there's something important I'd like to bring to your attention. As most of my readers (both of you) know, many pain doctors are very reluctant to prescribe pain medication. They cite supposed dangers of pain medication (though opioids taken correctly are less dangerous even than the "innocuous" carrier drugs many of the mildest are paired with, ibuprofen and acetominophen) and threat of addiction, or worry that patients with chronic nonspecified pain like Fibromyalgia may be faking to get drugs that make them high (there are far easier ways--if I want an illicit high, it would be far easier and more effective to score some marijuana, but I'm generally a fairly law-abiding citizen).

What doctors need to know is that recent research shows that there are dangers to leaving chronic pain untreated. In their study "Beyond feeling: chronic pain hurts the brain, disrupting the default-mode network dynamics," several Northwestern University doctors discovered that under the constant input of chronic pain, the brain rewires itself, bypassing some critical areas involving memory and emotion. Another study by the same team shows that brain mass is actually lost by patients dealing with long-term chronic pain, particularly in areas dealing with pain perception and response and with interpreting data and decision-making.

Patients with long-term chronic pain have long known that "brain fog" is one of the results of living this way. Now it turns out that making us suffer through it is causing brain damage, as well.