The Phantom Knows
“Not knowing why” is one of the most insidious, frustrating aspects of living with rheumatoid disease. It causes all kinds of symptoms and sensations, large and small, annoying or aggravating and oddly, never serious.
You know the things I’m talking about. They include stuff like this:
- The skin on my hands itches.
- I feel sick and tired, but 15 minutes ago I felt just fine.
- I just woke up, but my eyes are already bloodshot and burny.
- The Achilles tendons on both legs ache.
- Where’d I get that bruise?
- Oh, wow, my shoulder feels like it’s flaring! Oh man, it’s killing me! No … wait … hmm. It stopped hurting, just like that. It’s OK. I think. [pause for effect] What in the [insert your favorite blue language here] was that all about?!
After almost three decades of experience with this crap disease, I still can’t get used to all the small (usually) aches, pains, and discomforts RD brings along for the ride. Some are the symptoms of comorbidities, like sicca syndrome or Sjoegren’s, which cause the skin and/or mucous membranes in the nose, mouth, and eyes (and a few other places) to get as dry as the Sahara in mid-summer.
Other phenomena are simply inexplicable. I can’t remember having bumped the inside of my forearm, but there’s a heckuva black, blue, red, and greenish bruise there, so I guess I must have. Maybe I was sleepwalking.
That pain in my elbow doesn’t feel like RD pain, but it’s there anyway. What’s causing it? My rheumy tells me it’s lateral epicondylitis–tennis elbow–but is it still that when the rather intense pain lasts for five minutes, then disappears?
RD can really disable me when it goes for my shoulders, particularly the left one, but my real flares don’t come and go within a matter of minutes. They usually stick around for at least half a day, often for two or three. A shoulder hurts bad–like you-know-what–all of a sudden, and then stops again with no lingering after-effects is just, well, mind-boggling.
And why can I be having a good day, and then suddenly feel awful, wiped out and foggy? That happened yesterday. I felt great right up to that moment. I hadn’t picked up a cold or the flu. So is my rheumatoid disease behind these mysterious events? Was this sudden sickness the “malaise” I see listed under “symptoms” when I read about the disease on the Internet?
It’s no wonder, really, that having RD is embarrassing sometimes. Literally no one else I know has this happen to them. (Well, other than my fellow RD spoonies.) My “healthy” years, the ones pre-RD diagnosis at age 31, are becoming increasingly fuzzy in my memory as the decades pass, but I can’t recall ever having symptoms like this unless I’d actually injured myself or was coming down with a legitimate illness. A bad cold, or the flu, for instance. Walking pneumonia. Mono. Illnesses like that rarely strike in the twinkling of an eye.
So is it RD causing all this … this … stuff?
Well, it’s probably not causing all of them. Each of us is exposed to billions of bacteria and viruses every day, nearly all of which our never-sleeping, ultra-courageous immune system protects us from. Very few ever get through its formidable defenses. But because that same immune system is just a little bit … off, shall we say … it’s fighting itself, as well. And that isn’t doing us any favors.
As you probably know by now, I’m active on Twitter (you can find me as Leslie Wren Vandever). It’s there that I see bewildered questions like this coming up the most often. Because, you know, we all have them. We all want to know “is this normal?”
The other night I was reading, my feet up on an ottoman, when out of the blue it felt like someone was taking an invisible dulled knife to the joints in my big toe, flexing it back and forth, digging it in. In an instant I went from being relaxed and calm to wound up tight and anything but. I hissed air through my teeth, bit down on a distressed yelp, and stared at the toe in question. It looked perfectly normal. There was no swelling or redness. It wasn’t throbbing, though it felt like it was. My heart beat faster as the pain continued to grow. I was about to get up and–I don’t know, run away? From something–when it stopped. I wiggled the toe. It was fine.
I settled down again, but now I was worried. My big toes had been frequent victims of excruciating, days-long flares back in the early days following my diagnosis. The pain had been just like what I’d just felt, and it always came on just that fast and unexpectedly. Now, instead of getting lost in my book, which I’d been enjoying, my mind kept going back to those awful flares and the fear, embarrassment, disability, and lost work they’d caused. Was this little episode a taste of one of those flares preparing to come back and destroy me again?
No. That episode was two weeks ago. I didn’t have another like it until last night. It was just as intense–and it abated just as fast, too. Phantom pain…
A lot of people with rheumatoid disease also get a diagnosis of fibromyalgia at some point. I was, a couple of years ago. I didn’t accept my rheumatologist’s diagnosis at the time because I didn’t believe my symptoms matched up to those described for fibro. While my doctor certainly identified a number of fibro’s “tender points” as he pressed strategic spots all over my frame, I’d never had any lasting sort of pain in any of them. I also didn’t have trouble with fatigue, I didn’t sleep a lot, and my muscles never ached unless I did something to make them ache.
Most of that remains the same today, though fatigue is becoming a more frequent visitor to my life. I’m still not sure of the fibromyalgia diagnosis, but I’m giving it some reasoned thought. Could it be? Fibro appears to be the result of mixed and confused signals between the body and brain, which manifest as pain and other symptoms. Maybe my smart rheumatologist was right, after all.
What do you think? If you have fibromyalgia, do you have phantom symptoms like these?